Eli had his CT scan yesterday and we got to speak with the neurologist today. The CT confirms that Eli did have a stroke. Actually, he suffered multiple strokes. Most of them are on the right side of his brain but there was also one small one on the left side. In case you don't know, the right side of the brain controls the left side of the body and the left side of the brain controls the right side of the body. Because most of Eli's damage is on the right side of his brain, that causes deficits on the left side of his body.
His left arm and leg are significantly weaker than the right. The right side of his face is a little weaker than the right. Yesterday (Monday) he started aggressive physical and occupational therapy. Their goals are to work with him 4-6 times a week. Because that's both PT and OT, they're hopeful one department or another will be working with him each of the seven days.
He's also started with speech therapy. First of all, we don't know how much his swallowing muscles are affected by the strokes so he's at high risk for aspirating. Secondly, even though Eli has said several words to us and they are appropriate for the situation or question presented, he could easily have language issues. Speech therapy will assist with both those matters. It's very convenient that Eli has his feeding tube. Because of that we can nourish him 100% until we know he's able and willing to take food and drink by mouth. We don't have to pressure him into it, we can go at whatever pace he sets. Also, not to diminish the importance of speech therapy, but at this stage PT and OT are critical for Eli so speech will come in second to those therapies.
The neurologist told us he was very surprised to see how well Eli was doing and to hear the positive things he's heard. He said based on the neuro exam Friday and the CT results Monday, they didn't like what they were seeing. Of course we were very pleased and relieved to hear that Eli was exceeding expectations because we can only go up from here, right? Something Dr. Pappas (one of the pediatric neurologists) brought up today was Eli's vision. He tends to look to the right most of the time. Dr. Pappas thinks there's a strong possibility Eli's vision in his left eye is affected. He may not even have vision in that eye. I asked if that was something that could come back and he doesn't think that's likely. However, we don't know for sure what vision he may or may not have at this point.
From a cardiac standpoint, Eli is doing very well. He's off all his cardiac medicines except Lasix which he was taking prior to surgery anyway. He has surprised everyone with how well he's tolerated being without a pacemaker. He is in a junctional rhythm, but he's maintaining a rate in the 80s when awake and the 60s when he's asleep. That is slightly lower than the rates he was running right after surgery, but so far he's doing great. The only medicine Eli's getting through his IV is his antibiotic which we anticipate he'll have for at least five more weeks.
Finding out that Eli did indeed have a stroke was rough to hear. We expected that to be the news, but it was still hard. It's actually good to know for sure because if he were having all these issues and the CT were negative for stroke, it would lead to more questions. Another reason yesterday was hard was because it was Jan 27. Three years ago yesterday we took Eli home after his first open heart surgery. It was a date that had stuck in my head the past couple years as one of the highlights along this journey and the news yesterday ruined that highlight in my mind.
Eli has been very, very busy today. The doctors thought it would be good for Eli to take a wagon ride and get out of his room. We were even encouraged to leave the unit so he could go to the lobby and look at the rubber ducks in the fountain. Our nurse found a large wagon and we filled it with pillows and blankets. She got a portable monitor and oxygen tank. Then Bryan lifted Eli into the wagon and we got him settled with more pillows and blankets. When we were getting ready and told him he was going for a wagon ride he told us "No!" but we kept on anyway. I'm pretty sure he enjoyed himself. We looked at the ducks for a while and also took him through the stormy lights (an area that lights up with different colored lights and makes storm noises when sensors are crossed). I'm not sure if he looked at much, but he was definitely more relaxed than he'd been in a long time. In fact when we got back to the room he was very sleepy so we just left him in the wagon. He slept for about 30 minutes before going back to his bed.
He was fitted for two splints for his left arm today. It was neat to watch her mold them to fit Eli's arm/hand and then make adjustments for his thumb and add velcro straps. He has very little movement in the hand or wrist and the splints will help with extending those muscles so he doesn't get too tight. He will also get a boot for his left foot and leg that will help with the same thing. He got two splints today because one is for daytime and one is for nighttime. The nighttime one goes from his fingers to almost his elbow and he'll wear it for 8-10 hours every night. The daytime one isn't as long and he's to wear it a couple times a day for several hours each time.
Therapy also worked with him today in addition to the splint fitting. They got him to the side of the bed and one therapist sat behind him while another was on the floor in front of him. It took both of them to work with Eli because he's so weak. He's weak all over but especially on the left side and in his neck which makes it hard for him to hold up his head. In addition, we can't forget that he's only one week out from open heart surgery so we still have sternal precautions for him. He can't be lifted under the arms, lay on his chest, or raise both arms above his head for at least five more weeks. That makes it even more difficult for therapists to do their job with him. He tolerated it really well, fussed some, but cooperated which is very unusual for Eli! They even got him to the floor for a few seconds to see if he could bear any weight. Of course he didn't like that and it was hard to safely support him so it didn't last very long.
Yesterday and today he's sat in a seat provided by the therapy department. It's called a Tumble Form and it's kind of like a car seat but has velcro straps to help hold him in. We put the base on the couch, place the seat in it and then put Eli in the seat. Once he's velcroed in he's sitting on the couch like a big kid again. He did this for 35 minutes Monday evening and for another 30 minutes after his nearly 30 minute therapy session today. He fusses while he's in it, but he fusses a lot of the time anyway. I really think he likes the seat because it's a different position than one we can achieve in the bed. He's got to be tired of sitting in bed so much, which is probably why he was almost helpful with therapy today.
Another big deal today is that the kid finally pooped!!!! It's a big deal because as the day went on his belly got bigger and bigger. We started Miralax a few days ago (five doses in as of this afternoon), he got glycerin suppositories yesterday and today, and then a Dulcolax suppository late this afternoon. The next step was an enema which was not far from happening when he finally went. He had two stools tonight and his belly looks much softer. He seems much more comfortable too.
This evening he sat on the couch in Bryan's lap for a while. We used the opportunity to open some of his mail. He got some stickers, blue glow-in-the-dark bracelets, monster trucks, activity pads, and funny cards. He's not giving much away with his facial expression these days, but when we asked if he wanted to open another package he clearly said, "Yes!" Bryan and I switched places so I got to hold him for a while. Soon he was very tired and ready to head back to bed. The little monkey slept for a while, but woke up when I put his oxygen on him. He's been awake for nearly two hours now even though his eyes keep drifting shut. He fought sleep last night too.
I told someone today that if he fights the effects of stroke half as well as he fights sleep then he'll be in good shape.
Specific Prayer Requests:
- that Eli continues to make progress and amaze everyone
- for his mood because he's beginning to show frustration as he realizes parts of his body don't work like they did before...we aren't even sure what parts he can feel and what he can't
- that Eli's pain is easily controlled (we don't always know what is pain & what is frustration)
- for Zachary who is a trooper back home keeping his grandparents and aunt busy, doing great in kindergarten, and just being an incredibly awesome kid
Thank you for the many ways we've been shown support in these last few days. These are some of the hardest things we've ever had to go through. It's very confusing to be so grateful for everything Eli is able to do and yet so sad over the things he's facing. He's three. He's a baby and he's had to fight his whole life. Now his fight is that much more complicated and difficult.
Tuesday, January 28, 2014
Sunday, January 26, 2014
Fundraising for Eli
A couple posts ago I mentioned there were some fundraisers in the works for Eli. Here is the information:
Pizza Hut is hosting a
fundraiser for
Eli’s MVPs
Friday, February 7, 2014 (all day)
*Good for dine in, delivery and carry out*
Order from the Washington Pizza Hut and a portion of the profit will be
donated to Eli’s MVPs. You must
have a voucher for your order to count toward the fundraiser. Online
orders: use the coupon code “ELI”
*Only good for regular priced items*
*We are waiting to find out if online orders are for the Washington store only or any Pizza Hut location with the coupon code*
*We are waiting to find out if online orders are for the Washington store only or any Pizza Hut location with the coupon code*
The percent donated to Eli’s MVP’s increases
with the amount of sales, so share this info with your friends and family. If we generate $600 of net sales, Eli receives 20%!!!!
To get vouchers call: Linda Veale (698-7466), Kendra
Veale (486-5316), or Betty Norris (254-6502) or they will be available at the Daviess County
Abstract Company (German American Bank, Main Street, Washington)
*vouchers cannot be passed out inside or
outside the store*
We are also in the process of obtaining discount cards from Pizza Hut. The cards will be sold for $10 each (we will receive $6 from each card!). Each card will have 12 coupons for a free
medium 3-topping pizza with any $15 purchase. Please let me or one of
the people listed on the flyer know if you'd be interested in buying
any! Or let us know if you would like to help out by selling coupons cards or passing out vouchers for the Feb 7th fundraiser.
♥♥♥♥♥♥♥♥♥♥♥♥ ♥♥♥♥♥♥♥ ♥♥♥♥♥♥♥♥♥♥♥♥
Our next fundraiser is an Origami Owl online party. It is hosted by Bryan's co-worker Cher Elliott. Her website can be found by clicking this link. Here's the info she provided about the party:
"This event is to help
raise funds in support of Eli Veale and his family as they continue
fighting to help this little guy! Currently Eli is recovering from
another surgery and his family and friends continue to pray for his
recovery every day. We are sponsoring this fundraiser to gain
additional monies to help the Veale family pay not only for Eli's
medical expenses but other expenses incurred by the family during this
time.
Origami Owl is a Force For Good and there is no better way to show that than by supporting Eli and his family! 25% of all sales from this fundraiser will be donated to the Veale Family. Also, for every Jewelry Bar booked from this fundraiser an additional $25 will be donated to family.
Our lockets allow you to tell your personal story! From sports to children to hobbies to travel, there are many ways to show your story! Valentine's Day is nearing and Mother's Day is right around the corner. These lockets make great gifts and guys they help keep you out of the doghouse! :)
To order, please visit www.cherlynnelliott.origam
This event has been reviewed and approved by Jessica and Bryan and I thank them for the opportunity to try to help Eli and their entire family! Bryan is my co-worker and I'm thankful to call their family my friends!"
Origami Owl is a Force For Good and there is no better way to show that than by supporting Eli and his family! 25% of all sales from this fundraiser will be donated to the Veale Family. Also, for every Jewelry Bar booked from this fundraiser an additional $25 will be donated to family.
Our lockets allow you to tell your personal story! From sports to children to hobbies to travel, there are many ways to show your story! Valentine's Day is nearing and Mother's Day is right around the corner. These lockets make great gifts and guys they help keep you out of the doghouse! :)
To order, please visit www.cherlynnelliott.origam
This event has been reviewed and approved by Jessica and Bryan and I thank them for the opportunity to try to help Eli and their entire family! Bryan is my co-worker and I'm thankful to call their family my friends!"
♥♥♥♥♥♥♥♥♥♥♥♥ ♥♥♥♥♥♥♥ ♥♥♥♥♥♥♥♥♥♥♥♥
I would like to point out that we were approached by the manager of Washington's Pizza Hut and by Cher about doing these fundraisers to help us. Of course I'd love you to buy from them on the dates of the fundraisers so it helps Eli's MVPs but also please keep them in mind in the future because they were kind enough to get these going for us on their own.
We are still selling Eli's MVPs tshirts and hoodies. I do not have an "end" date for this order because we wait until we have a large quantity so it's a better price for us. If you want to order, contact us on Facebook (Eli's page, my page, or Bryan's) or email your order to elismvps@yahoo.com. The order form below is old and some of the personal info is outdated, but the tshirt colors, sizes, prices, etc are the correct.
We are considering ordering some rubber wrist bands with Eli's MVPs on them. Because we're still shopping for the best price/best quality, I do not know how much they will cost us. Therefore I don't know how much we will ask for them. More information to come about that.
Thank you for the interest in helping our family. We want you to know we realize how blessed we are to have all of you. Your prayers and support mean so much to us.
More of the Same
Not much to report today but since I didn't post Saturday I thought I should now. Eli sleeps a lot. We think a lot of that is due to pain meds, but it makes it difficult to assess his neurological status. We can usually wake him a little if we shake his shoulders or talk loudly to him. He often wakes on his own but that's usually because he needs pain meds.
When he's awake, it's not like his normal awake. His eyes are only open halfway at the most. He has talked a little bit. Saturday morning he was very upset and crying (and coughing!). We don't want to always assume he's hurting and immediately give pain meds because they knock him out. However it's a safe assumption that crying means pain. Anyway, we tried talked with him a little and he said a string of words to us that neither of us could understand. It started with "You..." followed by a few words we couldn't make out. I tried to remove the pacifier and see if he'd say it again but he just bit down harder on the paci. We kept asking him questions as we tried to decipher what he wanted. Between cries he finally said "Way down!" It was clear enough that Bryan, one of the residents who was in the room, and myself had no doubt about what he wanted. So we reclined the head of his bed more.
During all that he was moving his right arm and leg very well. He was moving the left arm and leg also. It wasn't as much as the right, but it was more than he'd moved them the day before. As the day went on he would give us some "uh-huh" and "uh-uh" answers. They were appropriate for what we asked. Twice yesterday when he received his Dilaudid (pain med) he didn't go to sleep right away. He had a few minutes of peace and he was awake, although getting sleepy. We used those times to really make eye contact with him and talk about things. He looked at some of his photo album pictures. We asked him if he wanted to watch a movie on Sunday. He said "uh-huh." I asked if he wanted an Ice Age movie and he said "Ma-car." It made us happy to hear him provide answers. Just to be sure, Bryan asked him if he wanted to watch Madagascar to which he answered with another "uh-huh." As awesome as it was to hear him say "Mommy" the other morning, it's more rewarding to hear him say he wants to lay down or request a specific movie. Some of the movements and little sounds he makes are Eli-like which are encouraging as well.
The majority of his day is spent sleeping. They're repeating the CT scan Monday. It may tell us something, it may not. Like I said in my previous post, whatever it shows doesn't really matter. It would be nice to have confirmation of a stroke or proof there wasn't, but regardless we see Eli's condition and that's what has to be treated.
Today we're hoping to get his hair washed again. The glue that is used for the video EEG monitors and the solution used to remove them leaves his hair oily and stiff. It's been washed once, but will take another shampoo or two to get more normal.
Yesterday was the 25th of January. It was exactly a month ago (Christmas Day) that Eli started limping; our first sign of trouble. We had no idea then where it would lead. I can't believe that a month ago we were playing with the gifts from Santa and getting ready to open ours (the four of us opened ours on the 26th). It seems like it was a lifetime ago since the four of us were together in our home.
Usually I do pretty well while we're here in the hospital. But this time is different. I think it's because we don't have to do things for Eli all the time. We're used to him being sleepy for a couple days after surgery and we use that time to rest up, but this time we're still waiting for him to show us more. Don't get me wrong, I'm thrilled about the signs he's given because they are very important. But I want more. Part of me wants to look back through the blog posts and see how long it was after his Fontan in April before he was awake, talking, asking for a bot, and watching movies. I haven't let myself do it because I know it was before this point. He's five days out and we're not much different than we were on post op day one (Wednesday). Obviously I know that seizures and a possible stroke change things dramatically and I'm just not fully accepting those changes yet. I think I would do slightly better if we had more positives from Eli or even more info about what his deficits are.
Last night after Bryan left Eli's room to go to our sleep room (we take turns spending the night in Eli's room), Eli had several minutes of open-eye time. We talked and he looked at me. I apologized to him for pushing him to do so much when he's already doing so many things that take a lot of effort. I told him we are so incredibly proud of him for everything he's fought through. This kid has shown more strength in the past six days than I have in nearly 37 years. And his whole life has been a fight.
Specific Prayer Requests:
- for Eli to keep showing signs of improvement
- for him to poop (yes, we're back to that issue. he's had a lot of narcotics and he's not mobile so things in there come to a standstill)
- for me and Bryan to accept whatever is coming and to make the best decisions for our family
- for the patience of whatever therapists are brought in on Eli's care because he's never cooperative for inpatient therapy!
Thank you again for all the prayers. We know they work.
***Addendum: Since posting this, Eli has had a long stretch of time where he was awake (eyes still only about halfway open). We changed his diaper and got his DVD player set up on the bed. Bryan put Madagascar in and skipped "da 'mercials" as Eli used to call the previews. He's been like that for over an hour. The doctor came in and examined him and we discussed his pain med management. We had asked if there was something between Dilaudid and Tylenol available to him. Some other options were talked about, but the doctor wants to go with Dilaudid at a lower dose since we know it works for him. They're also scheduling his Tylenol every six hours for the next four doses so we don't have to ask for it. We'll see how this goes. He just got his first lower Dilaudid dose and is still kind of grunty. We think that may be because he needs to poop! As I type this he's got his eyes kind of open and looks like he's fighting sleep.
I forgot to mention that he's had all kinds of things removed and over the past two days: he's off vapotherm and sating well on 1L of oxygen, his Foley catheter was removed and he is peeing well, his phenobarbital is just at the maintenance dose twice a day, his arterial line was taken out today, his PICC line was removed Thursday night and he will get a new one sometime, his femoral line and bulb anesthetic were removed (where they placed an incision so he could go on bypass), the dressings over his abdominal incision (from the pacemaker box) and his sternum were removed (sternal incision looks amazing!), and his temporary pacer wires were removed. Yesterday, Dr. Abraham said he might remove Eli's JP drain (collects chest drainage) today. The only thing we've added is that he's now able to get some nutrition so he has Pediasure feeds going through his g-tube.
When he's awake, it's not like his normal awake. His eyes are only open halfway at the most. He has talked a little bit. Saturday morning he was very upset and crying (and coughing!). We don't want to always assume he's hurting and immediately give pain meds because they knock him out. However it's a safe assumption that crying means pain. Anyway, we tried talked with him a little and he said a string of words to us that neither of us could understand. It started with "You..." followed by a few words we couldn't make out. I tried to remove the pacifier and see if he'd say it again but he just bit down harder on the paci. We kept asking him questions as we tried to decipher what he wanted. Between cries he finally said "Way down!" It was clear enough that Bryan, one of the residents who was in the room, and myself had no doubt about what he wanted. So we reclined the head of his bed more.
During all that he was moving his right arm and leg very well. He was moving the left arm and leg also. It wasn't as much as the right, but it was more than he'd moved them the day before. As the day went on he would give us some "uh-huh" and "uh-uh" answers. They were appropriate for what we asked. Twice yesterday when he received his Dilaudid (pain med) he didn't go to sleep right away. He had a few minutes of peace and he was awake, although getting sleepy. We used those times to really make eye contact with him and talk about things. He looked at some of his photo album pictures. We asked him if he wanted to watch a movie on Sunday. He said "uh-huh." I asked if he wanted an Ice Age movie and he said "Ma-car." It made us happy to hear him provide answers. Just to be sure, Bryan asked him if he wanted to watch Madagascar to which he answered with another "uh-huh." As awesome as it was to hear him say "Mommy" the other morning, it's more rewarding to hear him say he wants to lay down or request a specific movie. Some of the movements and little sounds he makes are Eli-like which are encouraging as well.
The majority of his day is spent sleeping. They're repeating the CT scan Monday. It may tell us something, it may not. Like I said in my previous post, whatever it shows doesn't really matter. It would be nice to have confirmation of a stroke or proof there wasn't, but regardless we see Eli's condition and that's what has to be treated.
Today we're hoping to get his hair washed again. The glue that is used for the video EEG monitors and the solution used to remove them leaves his hair oily and stiff. It's been washed once, but will take another shampoo or two to get more normal.
Yesterday was the 25th of January. It was exactly a month ago (Christmas Day) that Eli started limping; our first sign of trouble. We had no idea then where it would lead. I can't believe that a month ago we were playing with the gifts from Santa and getting ready to open ours (the four of us opened ours on the 26th). It seems like it was a lifetime ago since the four of us were together in our home.
Usually I do pretty well while we're here in the hospital. But this time is different. I think it's because we don't have to do things for Eli all the time. We're used to him being sleepy for a couple days after surgery and we use that time to rest up, but this time we're still waiting for him to show us more. Don't get me wrong, I'm thrilled about the signs he's given because they are very important. But I want more. Part of me wants to look back through the blog posts and see how long it was after his Fontan in April before he was awake, talking, asking for a bot, and watching movies. I haven't let myself do it because I know it was before this point. He's five days out and we're not much different than we were on post op day one (Wednesday). Obviously I know that seizures and a possible stroke change things dramatically and I'm just not fully accepting those changes yet. I think I would do slightly better if we had more positives from Eli or even more info about what his deficits are.
Last night after Bryan left Eli's room to go to our sleep room (we take turns spending the night in Eli's room), Eli had several minutes of open-eye time. We talked and he looked at me. I apologized to him for pushing him to do so much when he's already doing so many things that take a lot of effort. I told him we are so incredibly proud of him for everything he's fought through. This kid has shown more strength in the past six days than I have in nearly 37 years. And his whole life has been a fight.
Specific Prayer Requests:
- for Eli to keep showing signs of improvement
- for him to poop (yes, we're back to that issue. he's had a lot of narcotics and he's not mobile so things in there come to a standstill)
- for me and Bryan to accept whatever is coming and to make the best decisions for our family
- for the patience of whatever therapists are brought in on Eli's care because he's never cooperative for inpatient therapy!
Thank you again for all the prayers. We know they work.
***Addendum: Since posting this, Eli has had a long stretch of time where he was awake (eyes still only about halfway open). We changed his diaper and got his DVD player set up on the bed. Bryan put Madagascar in and skipped "da 'mercials" as Eli used to call the previews. He's been like that for over an hour. The doctor came in and examined him and we discussed his pain med management. We had asked if there was something between Dilaudid and Tylenol available to him. Some other options were talked about, but the doctor wants to go with Dilaudid at a lower dose since we know it works for him. They're also scheduling his Tylenol every six hours for the next four doses so we don't have to ask for it. We'll see how this goes. He just got his first lower Dilaudid dose and is still kind of grunty. We think that may be because he needs to poop! As I type this he's got his eyes kind of open and looks like he's fighting sleep.
I forgot to mention that he's had all kinds of things removed and over the past two days: he's off vapotherm and sating well on 1L of oxygen, his Foley catheter was removed and he is peeing well, his phenobarbital is just at the maintenance dose twice a day, his arterial line was taken out today, his PICC line was removed Thursday night and he will get a new one sometime, his femoral line and bulb anesthetic were removed (where they placed an incision so he could go on bypass), the dressings over his abdominal incision (from the pacemaker box) and his sternum were removed (sternal incision looks amazing!), and his temporary pacer wires were removed. Yesterday, Dr. Abraham said he might remove Eli's JP drain (collects chest drainage) today. The only thing we've added is that he's now able to get some nutrition so he has Pediasure feeds going through his g-tube.
Friday, January 24, 2014
01/24/2014 Update
The video EEG showed Eli continued to have seizure activity through the night and early morning hours. They were able to get them stopped with more phenobarbital. Because they're confident the medication has stopped his seizures, they discontinued use of the video EEG. Eli will continue taking Trileptal and his dose has been increased. That's an antiseizure medicine he started taking on Wednesday. However, it takes a while to build up enough in his system to do its job, so that's why he's needed the phenobarbital as well. They'll use the combo of the two for a week or so, check levels of each in his system, then hopefully be able to wean him off the phenobarbital over the next week.
I want to take a minute and make sure you realize how important it is for him to cough. His lungs sound really good, his chest x-rays have looked good, and his oxygen saturation has stayed at good levels. However, the longer he lays in bed means an increased chance of pneumonia. He does have some secretions that he's unable to clear on his own so he is being suctioned a couple times a shift. Once is deep suctioning and the other times are usually just in his mouth in an attempt to stimulate his cough. Deep breathing is important for him too, but can you imagine convincing a sedated three year old to deep breathe? That's why crying is important as well, it gets him to take deep breaths and also often leads to coughing.
Even with the continued seizure activity through the night, we did have some encouragement. Around 4am we heard him stirring around. Unfortunately, every time we hear him moving our first thought is "is it a seizure?" We watched him and he was just fingering the blanket with his right hand. After a while he started crying out a little which led to some coughing. We were pretty sure he was hurting since it had been several hours since his last pain meds, but he'd had three doses of antiseizure meds which had left him wiped out for most of the afternoon and night. As the nurse gathered what she needed for his pain medicine, he was crying and let out part of an "ai-yi-yi" sound. That's a noise he's been making when he's really upset & crying so it was really good to hear him say part of something familiar to him. Then while he was crying he said "Mommy." His respiratory therapist was in the room & heard it too, so it wasn't just me wanting to hear it. He really said it. Only once, but he said it.
As the day went on, he gave us more signs. He would open his eyes halfway and look around. I guess he didn't see anything that really impressed him because he'd close them again after a moment or two, but it is something he wasn't doing the day before. He also initiated coughs on his own several times. His pupils are usually reactive to light although sometimes a little sluggish. If we pester him much he'll cry which often leads to more coughing. He's also moving all four extremities. His right side moves more often and more easily than the left side, but he is moving both.
Around 5pm he had the most consecutive movements we'd seen at this point. He had been positioned on his left side with a pillow behind his back. His neck and shoulders were on a pillow with another between his legs. He also had his green Elmo blanket over him. Over the course of about 3-4 minutes he had kicked off the blanket, kicked the pillow away from his legs, shimmied his shoulders off the head pillow, and weaseled himself so he was on his back instead of the left side. During all this he made several grunting noises, had some cries, and some coughs. Once he was "settled" he went back to sleep and didn't move for quite a while. When he did get agitated again, his blood pressure was rising so he received Dilaudid (pain medication) because he hadn't had any for a long time. After that he received his maintenance dose of phenobarbital so he's been pretty out of it again for a few hours. However, he needed the rest. It's really difficult to balance pain control with the other meds that have sedation effects, especially when we're trying to wake him up!
All these are very good signs. We want to focus on that but we don't want to diminish the fact that we don't really know what's causing the seizures. As far as we know, they are under control so that's a very good thing. There are still some serious issues we may be facing. The way I feel about it right now is that because there's so much we don't know, we can't let ourselves obsess about it. We'll celebrate the good things and worry when we're given something specific to worry about. He may have had a stroke. If he did, there's nothing we can do about it now. He will have to recover and go through rehab/therapy. If he didn't have a stroke, he's still going to have to recover from this and probably have some therapy. His left side is weak, but he's moving it. Will he ever have full use of it again? We don't know. He's not awake, but he opens his eyes and cries. When will he be awake? We don't know. Will he be "Eli" again? When? We don't know those either. Most importantly to us is that he has done some Eli-typical things. No matter what, he just needs some time.
Another encouraging tidbit is that Eli's phenobarbital level is very high. Yes, that sounds scary, but think about this: Even with the high level {remember phenobarbital is a strong sedative in addition to antiseizure medicine} he's done those things he wasn't doing yesterday. I'm very hopeful that he'll continue to show signs of improvement as the level decreases.
Despite the frigid temperatures, Bryan and I braved the cold tonight and went out to dinner. It was nice for us to get away, but we were ready to had back to the hospital after we ate. Even though it's a high stress environment, we're pretty comfortable here. It really is a home away from home for us. That probably sounds sad to some of you, but it's reassuring to us. People here love our son. We can't go anywhere in this hospital without someone stopping us and asking how Eli is doing! Nurses, doctors, therapists, dietary aids, child life, transport team, chaplains, supply, housekeeping, etc know Eli. One day when Dr. Abraham was in our room, housekeeping was working in the room. As she worked, she was talking to Eli about Pablo (his BFF/lovey), his brother, and his food. While they were talking, two other workers from other departments walked by and stopped to wave at Eli and say hi. They asked him a couple questions and went on their way. Dr. Abraham watched all of it for a minute, looked at me and said "Does everyone know Eli this well?" I told him yes and he said "That's really nice, but we've got to get you guys out of here because no one should be that recognizable in the hospital!" It's not what we wanted our son to be famous for, but they do make us feel at home and for that we are grateful.
Thank you all for following along and praying for us. We've had many messages from people asking what they can do for us. There are a couple fundraisers in the works and I will soon have information to share with you about them. I am very excited for what we have coming up. One is something we were working on prior to all this happening and the timing of it couldn't be better.
Specific Prayer Requests:
- we continue to get positive signs from him
- no more seizures
- pain control
- peace of mind and acceptance of whatever we may be facing
I want to take a minute and make sure you realize how important it is for him to cough. His lungs sound really good, his chest x-rays have looked good, and his oxygen saturation has stayed at good levels. However, the longer he lays in bed means an increased chance of pneumonia. He does have some secretions that he's unable to clear on his own so he is being suctioned a couple times a shift. Once is deep suctioning and the other times are usually just in his mouth in an attempt to stimulate his cough. Deep breathing is important for him too, but can you imagine convincing a sedated three year old to deep breathe? That's why crying is important as well, it gets him to take deep breaths and also often leads to coughing.
Even with the continued seizure activity through the night, we did have some encouragement. Around 4am we heard him stirring around. Unfortunately, every time we hear him moving our first thought is "is it a seizure?" We watched him and he was just fingering the blanket with his right hand. After a while he started crying out a little which led to some coughing. We were pretty sure he was hurting since it had been several hours since his last pain meds, but he'd had three doses of antiseizure meds which had left him wiped out for most of the afternoon and night. As the nurse gathered what she needed for his pain medicine, he was crying and let out part of an "ai-yi-yi" sound. That's a noise he's been making when he's really upset & crying so it was really good to hear him say part of something familiar to him. Then while he was crying he said "Mommy." His respiratory therapist was in the room & heard it too, so it wasn't just me wanting to hear it. He really said it. Only once, but he said it.
As the day went on, he gave us more signs. He would open his eyes halfway and look around. I guess he didn't see anything that really impressed him because he'd close them again after a moment or two, but it is something he wasn't doing the day before. He also initiated coughs on his own several times. His pupils are usually reactive to light although sometimes a little sluggish. If we pester him much he'll cry which often leads to more coughing. He's also moving all four extremities. His right side moves more often and more easily than the left side, but he is moving both.
Around 5pm he had the most consecutive movements we'd seen at this point. He had been positioned on his left side with a pillow behind his back. His neck and shoulders were on a pillow with another between his legs. He also had his green Elmo blanket over him. Over the course of about 3-4 minutes he had kicked off the blanket, kicked the pillow away from his legs, shimmied his shoulders off the head pillow, and weaseled himself so he was on his back instead of the left side. During all this he made several grunting noises, had some cries, and some coughs. Once he was "settled" he went back to sleep and didn't move for quite a while. When he did get agitated again, his blood pressure was rising so he received Dilaudid (pain medication) because he hadn't had any for a long time. After that he received his maintenance dose of phenobarbital so he's been pretty out of it again for a few hours. However, he needed the rest. It's really difficult to balance pain control with the other meds that have sedation effects, especially when we're trying to wake him up!
All these are very good signs. We want to focus on that but we don't want to diminish the fact that we don't really know what's causing the seizures. As far as we know, they are under control so that's a very good thing. There are still some serious issues we may be facing. The way I feel about it right now is that because there's so much we don't know, we can't let ourselves obsess about it. We'll celebrate the good things and worry when we're given something specific to worry about. He may have had a stroke. If he did, there's nothing we can do about it now. He will have to recover and go through rehab/therapy. If he didn't have a stroke, he's still going to have to recover from this and probably have some therapy. His left side is weak, but he's moving it. Will he ever have full use of it again? We don't know. He's not awake, but he opens his eyes and cries. When will he be awake? We don't know. Will he be "Eli" again? When? We don't know those either. Most importantly to us is that he has done some Eli-typical things. No matter what, he just needs some time.
Another encouraging tidbit is that Eli's phenobarbital level is very high. Yes, that sounds scary, but think about this: Even with the high level {remember phenobarbital is a strong sedative in addition to antiseizure medicine} he's done those things he wasn't doing yesterday. I'm very hopeful that he'll continue to show signs of improvement as the level decreases.
Despite the frigid temperatures, Bryan and I braved the cold tonight and went out to dinner. It was nice for us to get away, but we were ready to had back to the hospital after we ate. Even though it's a high stress environment, we're pretty comfortable here. It really is a home away from home for us. That probably sounds sad to some of you, but it's reassuring to us. People here love our son. We can't go anywhere in this hospital without someone stopping us and asking how Eli is doing! Nurses, doctors, therapists, dietary aids, child life, transport team, chaplains, supply, housekeeping, etc know Eli. One day when Dr. Abraham was in our room, housekeeping was working in the room. As she worked, she was talking to Eli about Pablo (his BFF/lovey), his brother, and his food. While they were talking, two other workers from other departments walked by and stopped to wave at Eli and say hi. They asked him a couple questions and went on their way. Dr. Abraham watched all of it for a minute, looked at me and said "Does everyone know Eli this well?" I told him yes and he said "That's really nice, but we've got to get you guys out of here because no one should be that recognizable in the hospital!" It's not what we wanted our son to be famous for, but they do make us feel at home and for that we are grateful.
Thank you all for following along and praying for us. We've had many messages from people asking what they can do for us. There are a couple fundraisers in the works and I will soon have information to share with you about them. I am very excited for what we have coming up. One is something we were working on prior to all this happening and the timing of it couldn't be better.
Specific Prayer Requests:
- we continue to get positive signs from him
- no more seizures
- pain control
- peace of mind and acceptance of whatever we may be facing
Thursday, January 23, 2014
It's Always Something
In my last post I mentioned Eli was having some shaking or tremors. After I posted, they got worse. Worse enough to warrant administration of Ativan (an anitconvulsant). It helped and he rested some but they came back. Again, Ativan helped, but by then the doc wasn't convinced it was just because of the anesthesia. Also, it wasn't an all over the body kind of shaking, it was more involved for his left arm & leg. A neurology consult was obtained on Wednesday. We didn't see any more seizure activity but the neurologist wanted to proceed with an MRI of the head. That would have to wait because Eli still had temporary pacing wires. Cardiology said they could remove those Thursday so MRI was set up for 10am Thursday morning.
The doctors are concerned because they feel Eli should be more alert than he is. He "wakes" when he's in pain and cries out, but that's about it. His cry is weak, he's not moving or fidgeting much, and he doesn't open his eyes a lot. The good news is that we can get responses from him when he pester him, he will cry and even gives a few "uh-huh" and "uh-uh" answers. But this far out from surgery, they had hoped for more from him.
Dr. Abraham came in this morning and pulled the wires. Eli was going to be sedated for the MRI when someone brought up the fact that Eli still had a pacemaker lead in his heart. We had forgotten that Dr. Abraham was unable to remove one during surgery. He would have had to cut into Eli's ventricle (his only one) to get it out and would have caused more damage than good. Immediately phone calls were being made to check the compatibility of that one little lead with an MRI. They determined it wasn't compatible, so the next option was to get a CT. CT scans provide very useful info, but they are not as detailed nor do they take as long as an MRI. Eli would not have to be sedated. After his CT scan he was to have an EEG (electroencephalogram, monitors the electrical activity of the brain).
He did great for the CT. The neuro lab techs came in and did his EEG. As their protocol, when they're finished, they leave him hooked up to everything while they call the physician. The physician read the electronic version of the EEG. Apparently she called the pediatric intensivist here on the unit and he came to talk to us. Eli's EEG was showing seizure activity. Because of that, they were doing two things. First, convert his regular EEG equipment to a video monitored EEG. After that was set up, they administered a dose of Ativan and monitored its response. After a while, we were told he was still showing seizure activity and they are administering phenobarbital (another type of anticonvulsant). As I type this he is getting his second dose of phenobarbital for a recurrence in seizure activity.
All this seizure activity that we're told he's experiencing is not visible to us. He's not shaking or twitching. Now that he's being continually monitored, we think some of the times he's cried out and we thought it was pain was actually a seizure.
What does all this mean? Why is he having seizures? We don't know. He could be having seizures related to nothing. They could be because of a stroke. His CT scan didn't show anything abnormal, but as I said before a CT isn't their ideal way to diagnose or rule out something like this. If he did have a stoke, evidence of that wouldn't show up on CT for a few more days. What today's scan showed us was that he doesn't have any obvious bleeding in the brain. Of course that's great news, but we still have a lot of unanswered questions that may take a while to get solved.
What would have caused a stroke for him, if in fact that's what we're dealing with? It could be a couple things. The most obvious culprit would be because of being on bypass for so long during surgery. This was the fourth time he was on bypass in his young life. Stroke is one of the risks because even though the bypass machine is pumping his blood so his heart can rest, it's not as effective as his heart. There are areas that may not receive as much oxygen as it requires. A stroke is basically a lack of oxygen to an area of the brain. That causes irritation to the brain's electrical system which can result in seizures. Another theory is that he could have had a stroke related to a septic emboli. That's a fancy name for a ball of pus that flows through the blood and settles in the brain, causing a stroke. We know Eli had a lot of infection in his little body. We've also been told that is one of the complications of staph aureus which is the bacteria causing all these infection issues with him. Again, we do not know if he had a stroke, but it is a strong possibility.
What do we do? The main focus right now is stopping the seizures. That's what they're trying to do with the meds. They knock Eli out so he's sleeping a lot. He seems pretty comfortable. He is appropriately annoyed with us when he rub his feet (he's always disliked having his feet and toes messed with), shake his shoulders, or just talk loudly in his face, but it's never for more than a couple minutes before he goes back to sleep.
We got some other news today. During surgery, Dr. Abraham took several cultures of different areas. Some of them have come back positive. The ones that did were from inside the old graft/conduit and on pacemaker leads. In a strange way, that was good news. It confirmed to us that the right option was chosen for surgery. We didn't unnecessarily put him through a bigger surgery than he needed. Both the graft and the pacemaker were infected and both came out in one surgery. Unfortunately, that surgery has resulted in seizures, but if he didn't have the surgery to take those things out he would never have gotten better. It's a small victory, but at least we know the right thing was done.
Another discovery of small importance is that Eli's PICC line has moved a little. The end of it is not in the vessel it was placed in, it's moved up into a neighboring vessel. That's not a huge problem, but it isn't ideal. The doctor tried to do a "fast flush" to it today meaning he quickly pushed saline through the line in an effort to make it flip itself. Xray showed it didn't work. They discussed just pulling the line out of Eli by a centimeter or two, but decided on another option. Since that PICC line was in before surgery and he's had positive cultures from items removed during surgery, they just want to take that line out. He still has a central line they can give his medicines through for a few days and then get a new PICC placed sometime next week. Again, we don't like that he'll have to be sedated but it makes sense to get out anything we can that could have come into contact with that nasty staph and just start fresh.
So that's the latest Eli news. Sorry it wasn't great news but it's what we've got. Cardiac wise he's doing very, very well. He's actually off all the heart function meds, his vapotherm has been lowered, he's tolerating not having a pacemaker, and his chest x-rays have looked great. They originally wanted him off the vapotherm today, but since they're giving the phenobarbital they decided to keep him on it. The phenobarbital could cause a decrease in respirations so they are keeping the ventilator in his room just in case he needs it (so far has done very well with the meds) and keeping him on the vapotherm for the added assistance.
Bryan and I are okay. Sort of. It was a rough afternoon but we know nothing could have been done to prevent this. He had to have the surgery. It's been a risk with every surgery and we maybe weren't as lucky this time as we've been in the past. We're mainly just tired, mentally and physically. They take good care of us here. We're eating well and make ourselves leave the room at least a couple times a day to go for a walk.
Specific Prayer Requests:
- Eli's seizure activity stops
- he recovers full use of anything we think he may have lost or is decreased
- he starts waking up more and becoming more alert
- for me and Bryan as we process all this and whatever may come
- for Zachary as we're going to be separated for a long time again
- that Eli has NO NEW surprises for us!
As always, thanks for the prayers. Eli needs them more than ever!
The doctors are concerned because they feel Eli should be more alert than he is. He "wakes" when he's in pain and cries out, but that's about it. His cry is weak, he's not moving or fidgeting much, and he doesn't open his eyes a lot. The good news is that we can get responses from him when he pester him, he will cry and even gives a few "uh-huh" and "uh-uh" answers. But this far out from surgery, they had hoped for more from him.
Dr. Abraham came in this morning and pulled the wires. Eli was going to be sedated for the MRI when someone brought up the fact that Eli still had a pacemaker lead in his heart. We had forgotten that Dr. Abraham was unable to remove one during surgery. He would have had to cut into Eli's ventricle (his only one) to get it out and would have caused more damage than good. Immediately phone calls were being made to check the compatibility of that one little lead with an MRI. They determined it wasn't compatible, so the next option was to get a CT. CT scans provide very useful info, but they are not as detailed nor do they take as long as an MRI. Eli would not have to be sedated. After his CT scan he was to have an EEG (electroencephalogram, monitors the electrical activity of the brain).
He did great for the CT. The neuro lab techs came in and did his EEG. As their protocol, when they're finished, they leave him hooked up to everything while they call the physician. The physician read the electronic version of the EEG. Apparently she called the pediatric intensivist here on the unit and he came to talk to us. Eli's EEG was showing seizure activity. Because of that, they were doing two things. First, convert his regular EEG equipment to a video monitored EEG. After that was set up, they administered a dose of Ativan and monitored its response. After a while, we were told he was still showing seizure activity and they are administering phenobarbital (another type of anticonvulsant). As I type this he is getting his second dose of phenobarbital for a recurrence in seizure activity.
All this seizure activity that we're told he's experiencing is not visible to us. He's not shaking or twitching. Now that he's being continually monitored, we think some of the times he's cried out and we thought it was pain was actually a seizure.
What does all this mean? Why is he having seizures? We don't know. He could be having seizures related to nothing. They could be because of a stroke. His CT scan didn't show anything abnormal, but as I said before a CT isn't their ideal way to diagnose or rule out something like this. If he did have a stoke, evidence of that wouldn't show up on CT for a few more days. What today's scan showed us was that he doesn't have any obvious bleeding in the brain. Of course that's great news, but we still have a lot of unanswered questions that may take a while to get solved.
What would have caused a stroke for him, if in fact that's what we're dealing with? It could be a couple things. The most obvious culprit would be because of being on bypass for so long during surgery. This was the fourth time he was on bypass in his young life. Stroke is one of the risks because even though the bypass machine is pumping his blood so his heart can rest, it's not as effective as his heart. There are areas that may not receive as much oxygen as it requires. A stroke is basically a lack of oxygen to an area of the brain. That causes irritation to the brain's electrical system which can result in seizures. Another theory is that he could have had a stroke related to a septic emboli. That's a fancy name for a ball of pus that flows through the blood and settles in the brain, causing a stroke. We know Eli had a lot of infection in his little body. We've also been told that is one of the complications of staph aureus which is the bacteria causing all these infection issues with him. Again, we do not know if he had a stroke, but it is a strong possibility.
What do we do? The main focus right now is stopping the seizures. That's what they're trying to do with the meds. They knock Eli out so he's sleeping a lot. He seems pretty comfortable. He is appropriately annoyed with us when he rub his feet (he's always disliked having his feet and toes messed with), shake his shoulders, or just talk loudly in his face, but it's never for more than a couple minutes before he goes back to sleep.
We got some other news today. During surgery, Dr. Abraham took several cultures of different areas. Some of them have come back positive. The ones that did were from inside the old graft/conduit and on pacemaker leads. In a strange way, that was good news. It confirmed to us that the right option was chosen for surgery. We didn't unnecessarily put him through a bigger surgery than he needed. Both the graft and the pacemaker were infected and both came out in one surgery. Unfortunately, that surgery has resulted in seizures, but if he didn't have the surgery to take those things out he would never have gotten better. It's a small victory, but at least we know the right thing was done.
Another discovery of small importance is that Eli's PICC line has moved a little. The end of it is not in the vessel it was placed in, it's moved up into a neighboring vessel. That's not a huge problem, but it isn't ideal. The doctor tried to do a "fast flush" to it today meaning he quickly pushed saline through the line in an effort to make it flip itself. Xray showed it didn't work. They discussed just pulling the line out of Eli by a centimeter or two, but decided on another option. Since that PICC line was in before surgery and he's had positive cultures from items removed during surgery, they just want to take that line out. He still has a central line they can give his medicines through for a few days and then get a new PICC placed sometime next week. Again, we don't like that he'll have to be sedated but it makes sense to get out anything we can that could have come into contact with that nasty staph and just start fresh.
So that's the latest Eli news. Sorry it wasn't great news but it's what we've got. Cardiac wise he's doing very, very well. He's actually off all the heart function meds, his vapotherm has been lowered, he's tolerating not having a pacemaker, and his chest x-rays have looked great. They originally wanted him off the vapotherm today, but since they're giving the phenobarbital they decided to keep him on it. The phenobarbital could cause a decrease in respirations so they are keeping the ventilator in his room just in case he needs it (so far has done very well with the meds) and keeping him on the vapotherm for the added assistance.
Bryan and I are okay. Sort of. It was a rough afternoon but we know nothing could have been done to prevent this. He had to have the surgery. It's been a risk with every surgery and we maybe weren't as lucky this time as we've been in the past. We're mainly just tired, mentally and physically. They take good care of us here. We're eating well and make ourselves leave the room at least a couple times a day to go for a walk.
Specific Prayer Requests:
- Eli's seizure activity stops
- he recovers full use of anything we think he may have lost or is decreased
- he starts waking up more and becoming more alert
- for me and Bryan as we process all this and whatever may come
- for Zachary as we're going to be separated for a long time again
- that Eli has NO NEW surprises for us!
As always, thanks for the prayers. Eli needs them more than ever!
Tuesday, January 21, 2014
First Few Hours After FP2 (Fontan Part 2)
Eli is settled into his big boy bed in the PICU. He is doing very well. He was extubated at 6pm and has been breathing well on his own since. He is on two liters of oxygen via nasal cannula. Everyone is very pleased with how well he's doing. He's on a Fentanyl drip for pain control and Precedex which is a sedative. He's also on a couple meds to help with his heart function (milrinone and dopamine) and of course his good ol' antibiotics. He has two JP drains coming from his chest cavity There are temporary pacer wires coming out of his chest but as of now he's not being paced at all.
As you can see in the photo, Pablo is busy keeping Eli calm. When Eli wakes, we rub Pablo on Eli's nose, forehead, cheeks, and chin. It makes an obvious difference. We are so grateful for Pablo!
His issue right now is shaking or tremors. It's caused by the anesthetic he received during surgery. He'll start to settle and get comfortable, then his arm, leg, or body will twitch which causes pain which in turn upsets him. It's a tough cycle to watch. Unfortunately this is just something that happens as those anesthetic meds are leaving his body, especially when he was on them for such a long time. Eli was in the OR for over seven hours. About 4-4 1/2 of those hours were spent on bypass (Eli's heart is stopped and a machine pumps blood for him so the surgeon can work on his heart without it beating).
We were hoping Zachary would get to see Eli after surgery. Unfortunately the PICU has had to implement a rule (for patient safety) not allowing visitors under the age of twelve. We figured there was no harm in asking for few minute exception, but they were unable to bend the rules. That's okay, we understand why. In fact, starting tomorrow, the new rule is hospital-wide that no visitors under the age of 18 are allowed. That will be in effect throughout the peak of flu and RSV season so it's unlikely Zachary will be allowed back in the hospital while Eli is here. It's unfortunate for us, but it's for the overall safety of Eli and the other kiddos here.
Thank you so much for following along with his progress today. It's been a long day and to see him doing so well is gratifying. We are overwhelmed with your comments, encouragement, photos of Eli's MVPs shirts, and all the support given. We took a group photo of us in our shirts too, but I'll post it tomorrow.
Specific Prayer Requests:
- for Eli to remain stable
- for Eli's pain to be easily controlled without over-sedating him.
- that the twitching, shaking, and/or tremors subside and he's able to rest peacefully
- for our family to have a safe trip back home and be well rested for jobs/school tomorrow
- that Bryan and I can get some rest tonight
Thanks again for everything.
As you can see in the photo, Pablo is busy keeping Eli calm. When Eli wakes, we rub Pablo on Eli's nose, forehead, cheeks, and chin. It makes an obvious difference. We are so grateful for Pablo!
His issue right now is shaking or tremors. It's caused by the anesthetic he received during surgery. He'll start to settle and get comfortable, then his arm, leg, or body will twitch which causes pain which in turn upsets him. It's a tough cycle to watch. Unfortunately this is just something that happens as those anesthetic meds are leaving his body, especially when he was on them for such a long time. Eli was in the OR for over seven hours. About 4-4 1/2 of those hours were spent on bypass (Eli's heart is stopped and a machine pumps blood for him so the surgeon can work on his heart without it beating).
We were hoping Zachary would get to see Eli after surgery. Unfortunately the PICU has had to implement a rule (for patient safety) not allowing visitors under the age of twelve. We figured there was no harm in asking for few minute exception, but they were unable to bend the rules. That's okay, we understand why. In fact, starting tomorrow, the new rule is hospital-wide that no visitors under the age of 18 are allowed. That will be in effect throughout the peak of flu and RSV season so it's unlikely Zachary will be allowed back in the hospital while Eli is here. It's unfortunate for us, but it's for the overall safety of Eli and the other kiddos here.
Thank you so much for following along with his progress today. It's been a long day and to see him doing so well is gratifying. We are overwhelmed with your comments, encouragement, photos of Eli's MVPs shirts, and all the support given. We took a group photo of us in our shirts too, but I'll post it tomorrow.
Specific Prayer Requests:
- for Eli to remain stable
- for Eli's pain to be easily controlled without over-sedating him.
- that the twitching, shaking, and/or tremors subside and he's able to rest peacefully
- for our family to have a safe trip back home and be well rested for jobs/school tomorrow
- that Bryan and I can get some rest tonight
Thanks again for everything.
Monday, January 20, 2014
The Day Before Eli's Fontan Part Two (should we call it FP2?)
Eli's Fontan revision with removal of pacemaker and wires is on schedule for Tuesday, Jan 21. He was originally to be the second case of the day, but the first case has been cancelled. That means Eli will be in the OR at 8am. They will come get him from the room approximately 6:45-7:00am to start prepping him. "Prepping him" means getting him to sleep, going through the surgical cleansing, and getting all their access lines in his little body.
Dr. Abraham talked to us for a while today about the surgery. The only real question we had was one we knew he couldn't answer: How long will it take? He addressed that before we ever brought it up. He doesn't know how long Eli will be in surgery. In his words, "I won't know until I get in there. But my suspicion is that it will take a while."
We're asking everyone who has an Eli's MVPs shirt or hoodie to wear it tomorrow. If you don't have one or can't wear it due to uniform restrictions, etc, we ask that you wear something blue. Blue is Eli's favorite color. Feel free to post a picture of you wearing your shirt to Eli's Facebook page or our personal Facebook pages. If you're not on Facebook, you can email it to elismvps@yahoo.com.
We're also asking for a moment of prayer at 8am. Please pray for Eli's safety, the anesthesiologist's skill, the surgeon's guidance, and blessings to all who are involved in his care. Prayers are also appreciated for the safe travels of family members who will be rising very, very early to get here in time to see Eli before he goes down to surgery.
Eli is spending the day playing baseball in his room and eating. He's being silly and lots of fun. Daddy and I have loved hanging out with him today, especially because he's been in a good mood! He's not had a nap today but that's a little strategic on our part because we want him to sleep well. He won't have anything to eat or drink after 11pm tonight, so we're hoping he's awake until about 10:30 (what he's done the past two nights!). In addition to playtime, Bryan and I cleared out Eli's room today. We don't want to move everything to the PICU, so we've just kept a few changes of clothes, a few cuddly toys for Eli, and the things we need to occupy us during the surgery wait. Making a trip to the van to exchange our clothes every couple days will be a good outing for one of us! We left up Eli's drawings and cards and we'll move those to the PICU with us so he can see them. Thank you so much to everyone who's sent something. He's loved getting to open those envelopes!!!
Updates to come Tuesday as time allows. I probably won't do a blog post until after surgery, but I will update on Facebook because that's quick and easy. If you haven't "liked" us on Facebook yet, use this link to get there and do so. We're close to 900 likes. If you're on Facebook, would you share his page on your newsfeed and ask your friends to like Eli's MVPs?
Thank you for everything!!!
Dr. Abraham talked to us for a while today about the surgery. The only real question we had was one we knew he couldn't answer: How long will it take? He addressed that before we ever brought it up. He doesn't know how long Eli will be in surgery. In his words, "I won't know until I get in there. But my suspicion is that it will take a while."
We're asking everyone who has an Eli's MVPs shirt or hoodie to wear it tomorrow. If you don't have one or can't wear it due to uniform restrictions, etc, we ask that you wear something blue. Blue is Eli's favorite color. Feel free to post a picture of you wearing your shirt to Eli's Facebook page or our personal Facebook pages. If you're not on Facebook, you can email it to elismvps@yahoo.com.
We're also asking for a moment of prayer at 8am. Please pray for Eli's safety, the anesthesiologist's skill, the surgeon's guidance, and blessings to all who are involved in his care. Prayers are also appreciated for the safe travels of family members who will be rising very, very early to get here in time to see Eli before he goes down to surgery.
Eli is spending the day playing baseball in his room and eating. He's being silly and lots of fun. Daddy and I have loved hanging out with him today, especially because he's been in a good mood! He's not had a nap today but that's a little strategic on our part because we want him to sleep well. He won't have anything to eat or drink after 11pm tonight, so we're hoping he's awake until about 10:30 (what he's done the past two nights!). In addition to playtime, Bryan and I cleared out Eli's room today. We don't want to move everything to the PICU, so we've just kept a few changes of clothes, a few cuddly toys for Eli, and the things we need to occupy us during the surgery wait. Making a trip to the van to exchange our clothes every couple days will be a good outing for one of us! We left up Eli's drawings and cards and we'll move those to the PICU with us so he can see them. Thank you so much to everyone who's sent something. He's loved getting to open those envelopes!!!
Updates to come Tuesday as time allows. I probably won't do a blog post until after surgery, but I will update on Facebook because that's quick and easy. If you haven't "liked" us on Facebook yet, use this link to get there and do so. We're close to 900 likes. If you're on Facebook, would you share his page on your newsfeed and ask your friends to like Eli's MVPs?
Thank you for everything!!!
Thursday, January 16, 2014
Surgery Date Set
Eli's surgery is set for Tuesday, Jan 21. He'll be the second case of the day behind what is expected to be a short case. All that means is that we don't have an exact time for him to go. We're guessing between 10 and 11am.
His third culture (drawn the 15th) has remained negative so that is good news. His stomach seems to be feeling better as well since he finished his round of Rifampin (antibiotic added to his regimen to help the other antibiotic penetrate through to bone). Because he still has the nagging cough he came in with, we're trying Albuterol breathing treatments twice a day. He does well getting them and it seems to break loose some junk in his upper chest because his cough sounds more productive. We'd love for that to be gone before surgery!
Right now his big issue is sleep. He doesn't want to. He always turns into a night owl when hospitalized and I'm really trying to fight that (at least before surgery). Last night he didn't give up until after midnight. Tonight I finally got him to sleep by 11. Yes, that is a victory for me although it's by the slimmest of margins!
Tomorrow Eli will have an ultrasound of his femoral arteries (large arteries in his upper legs) to make sure there are no growth issues or blood clots present. Part of that is to ensure they would have access to those vessels if they need them for central lines for his procedure and part of it is in case they decide to use some of Eli's own vessels to construct the Fontan circulation.
We'll have more info in the coming days about what to expect during this surgery. A lot of it won't be known until Dr. Abraham actually gets in there. Once opened up and able to view the vessels themselves, he'll be able to see what other damage has been done by the infection.
Specific Prayer Requests:
- for Eli to remain healthy and get even better before surgery
- for Zachary as we try to explain Eli having another surgery. It's so hard to balance an appropriate dose of reality for a six year old without frightening him. Especially when his nighttime prayer the other night included "God bless that Eli doesn't die"
- for Eli's mental health. This isn't his first rodeo and the kid picks up on the slightest thing here in the hospital. We're now having to deal with trying to explain more to him. Again, he deserves the truth but how to balance that reality without scaring him?
- for our nerves as we approach surgery. I can't speak for Bryan, but I was dealing okay when we didn't have a date set. Now we do and the mental countdown is on. I've nearly got it down to the hour without thinking about it
- for all of us as we try to have some fun together this weekend and not let ourselves be stressed out by what we can't control
His third culture (drawn the 15th) has remained negative so that is good news. His stomach seems to be feeling better as well since he finished his round of Rifampin (antibiotic added to his regimen to help the other antibiotic penetrate through to bone). Because he still has the nagging cough he came in with, we're trying Albuterol breathing treatments twice a day. He does well getting them and it seems to break loose some junk in his upper chest because his cough sounds more productive. We'd love for that to be gone before surgery!
Right now his big issue is sleep. He doesn't want to. He always turns into a night owl when hospitalized and I'm really trying to fight that (at least before surgery). Last night he didn't give up until after midnight. Tonight I finally got him to sleep by 11. Yes, that is a victory for me although it's by the slimmest of margins!
Tomorrow Eli will have an ultrasound of his femoral arteries (large arteries in his upper legs) to make sure there are no growth issues or blood clots present. Part of that is to ensure they would have access to those vessels if they need them for central lines for his procedure and part of it is in case they decide to use some of Eli's own vessels to construct the Fontan circulation.
We'll have more info in the coming days about what to expect during this surgery. A lot of it won't be known until Dr. Abraham actually gets in there. Once opened up and able to view the vessels themselves, he'll be able to see what other damage has been done by the infection.
Specific Prayer Requests:
- for Eli to remain healthy and get even better before surgery
- for Zachary as we try to explain Eli having another surgery. It's so hard to balance an appropriate dose of reality for a six year old without frightening him. Especially when his nighttime prayer the other night included "God bless that Eli doesn't die"
- for Eli's mental health. This isn't his first rodeo and the kid picks up on the slightest thing here in the hospital. We're now having to deal with trying to explain more to him. Again, he deserves the truth but how to balance that reality without scaring him?
- for our nerves as we approach surgery. I can't speak for Bryan, but I was dealing okay when we didn't have a date set. Now we do and the mental countdown is on. I've nearly got it down to the hour without thinking about it
- for all of us as we try to have some fun together this weekend and not let ourselves be stressed out by what we can't control
Wednesday, January 15, 2014
Our "Negative" Attitude is Paying Off
Good medicine and the power of prayer (not necessarily in that order!) work:
- Eli's blood culture drawn on the 11th is NEGATIVE
- the blood culture drawn on the 13th is still NEGATIVE (there's still time for it to turn positive, but it's good news that so far it's negative)
- his C-diff was NEGATIVE
- he didn't throw up this morning (he has the last three mornings)
- his poopy diapers are more normal looking and not the nastiness they were Sunday and Monday
- he's tolerated his lower heartrate since the pacer was turned down
We're getting closer to being able to set a surgery date. At this point we're waiting for Infectious Disease to decide how long he needs negative cultures before allowing surgery. We're very loosely planning for next week, but that could easily change. Of course we'll let you know when we have a true date set.
Eli's been feeling better yesterday and today, although his appetite is not what it was last week. It is slowly getting better. I do think he's feeling "different" since his pacer has essentially been turned off (not really off, it'll kick in if his rate gets below 40). It seems like he's more tired than before and when he wakes, it takes a little longer for him to really wake up. These are things we experienced while he was junctional before he had his pacemaker anyway. Dr. Steinberg told me today to expect Eli will have temporary pacer wires when he comes out of surgery. That's just in case he doesn't tolerate the junctional rhythm after a big surgery. They would be able to externally pace him if needed. Hearing that actually made me feel a little better! Dr. Steinberg doesn't anticipate any problems but just wants to be cautious.
Overall, things are going well. But it's hard for me to realize that this is just the very beginning. He's starting to have clear cultures, but the real treatment to "fix" this infection is to get the infected hardware out. Doing that requires major surgery. A redo of the surgery he had last April. Because it's a redo, it will be more complicated than the first time. Then, aside from at least six weeks of IV antibiotic therapy, we don't know what to expect after surgery. He was inpatient for seven weeks after his first Fontan due to a multitude of problems. Who knows what will happen this time? We're just trying to take it step by step, but occasionally I look up to see how many steps are in front of us and it's daunting.
One year ago today, my grandmother passed away. She led a long, full life, but that doesn't stop us from missing her. Please keep my aunts, uncles, and cousins in your prayers as we reminisce about this neat woman. She would make me cheesecake for my birthday because I'm not a huge fan of cake. I'm craving her banana bread right now! She said multiple rosaries a day for Eli and I know she and my dad are doing all they can up there to watch over us down here. We love you, Granny Myrt!
Thanks for keeping up with us. Things are starting to fall into place, but we still need your prayers. We appreciate all the comments and support you provide! Updates to come as we know more!
- Eli's blood culture drawn on the 11th is NEGATIVE
- the blood culture drawn on the 13th is still NEGATIVE (there's still time for it to turn positive, but it's good news that so far it's negative)
- his C-diff was NEGATIVE
- he didn't throw up this morning (he has the last three mornings)
- his poopy diapers are more normal looking and not the nastiness they were Sunday and Monday
- he's tolerated his lower heartrate since the pacer was turned down
We're getting closer to being able to set a surgery date. At this point we're waiting for Infectious Disease to decide how long he needs negative cultures before allowing surgery. We're very loosely planning for next week, but that could easily change. Of course we'll let you know when we have a true date set.
Eli's been feeling better yesterday and today, although his appetite is not what it was last week. It is slowly getting better. I do think he's feeling "different" since his pacer has essentially been turned off (not really off, it'll kick in if his rate gets below 40). It seems like he's more tired than before and when he wakes, it takes a little longer for him to really wake up. These are things we experienced while he was junctional before he had his pacemaker anyway. Dr. Steinberg told me today to expect Eli will have temporary pacer wires when he comes out of surgery. That's just in case he doesn't tolerate the junctional rhythm after a big surgery. They would be able to externally pace him if needed. Hearing that actually made me feel a little better! Dr. Steinberg doesn't anticipate any problems but just wants to be cautious.
Overall, things are going well. But it's hard for me to realize that this is just the very beginning. He's starting to have clear cultures, but the real treatment to "fix" this infection is to get the infected hardware out. Doing that requires major surgery. A redo of the surgery he had last April. Because it's a redo, it will be more complicated than the first time. Then, aside from at least six weeks of IV antibiotic therapy, we don't know what to expect after surgery. He was inpatient for seven weeks after his first Fontan due to a multitude of problems. Who knows what will happen this time? We're just trying to take it step by step, but occasionally I look up to see how many steps are in front of us and it's daunting.
One year ago today, my grandmother passed away. She led a long, full life, but that doesn't stop us from missing her. Please keep my aunts, uncles, and cousins in your prayers as we reminisce about this neat woman. She would make me cheesecake for my birthday because I'm not a huge fan of cake. I'm craving her banana bread right now! She said multiple rosaries a day for Eli and I know she and my dad are doing all they can up there to watch over us down here. We love you, Granny Myrt!
Thanks for keeping up with us. Things are starting to fall into place, but we still need your prayers. We appreciate all the comments and support you provide! Updates to come as we know more!
Monday, January 13, 2014
The Waiting Game...and a Request
We're still here, just hanging out occupying ourselves with movies, games, stickers, walks around the halls, and silly time. The plan is to keep getting blood cultures every couple days. Once he has negative cultures for a stretch of time (different estimates from different specialties) we'll know more about proceeding with surgery.
Today his pacemaker was turned down. Normally his settings are to keep his heart rate at a minimum of 80 when he's awake and 70 when he's asleep. Today it's been turned down to kick in if his rate gets below 50. So far he's doing well with it.
Another "exciting" development he's experiencing is diarrhea. With all the antibiotics he's been on, it's not surprising. Today, they sent samples to be tested for c-diff which is something that can develop when there's a lot of antibiotic use. If he tests positive for that, he'll be in isolation so he doesn't spread it through the hospital unit.
Bryan and Zachary came up Friday night. It was the first time the four of us were together since Dec 30. I got to leave the hospital and spend the night with Zachary. Saturday we did a little shopping (Eli needed the next size up in shoes so Z picked out some really cool Cars shoes that light up!). We had more time at the hospital together then some family came to stay with Eli while Bryan, Zachary and I went out to dinner. Then Zachary went home with them and Bryan stayed through Sunday.
Many of you have sweetly asked for an address to send cards. We would love to get some mail while we're here! Eli got two cards today and it really made a big difference in his mood. Many of you have asked about visiting. While we would love to see you, we need to keep our visitors to a minimum. As of now, Eli is in protective isolation. That is for his benefit. We have to do everything we can to keep him as healthy as possible before this surgery. We don't want to delay it due to a preventable illness. It was very important for him to see Zachary, but we also won't hesitate to keep them apart if we think Zachary has any illness whatsoever. The staff here are very good at keeping me entertained when Eli gives me a break! Thanks for understanding. In no way do we want to hurt the feelings of people who have supported us through so much, but Eli's health is our number one priority.
Because of limiting our visitors, you can see why it is even more special to get cards and letters from all of you. Here are the addresses:
Peyton Manning Children's Hospital
Eli Veale, patient
Room 3011
2001 West 86th Street
Indianapolis, Indiana
46260
or you can mail it to
Eli Veale
201 East Main Street
Suite 401
Washington, Indiana
47501
The second address is Bryan's mom's business. She will collect any mail and give it to Bryan so he can deliver it when he visits. May I ask a favor? Please remember Zachary also. He's such a trooper through this and it makes him happy as well to open a funny card. No one has to go to any extreme for us, a card or letter is wonderful. Mail for him can go to the Washington address.
Specific Prayer Requests:
- Eli's blood cultures come back negative and STAY negative
- Eli's diarrhea subsides and he doesn't test positive for c-diff
- for Zachary as he seems to be doing well, but has his moments of insecurity and sadness
- for all the kids here and their families who are fighting battles none of us ever want to face
Thank you all!
Today his pacemaker was turned down. Normally his settings are to keep his heart rate at a minimum of 80 when he's awake and 70 when he's asleep. Today it's been turned down to kick in if his rate gets below 50. So far he's doing well with it.
Another "exciting" development he's experiencing is diarrhea. With all the antibiotics he's been on, it's not surprising. Today, they sent samples to be tested for c-diff which is something that can develop when there's a lot of antibiotic use. If he tests positive for that, he'll be in isolation so he doesn't spread it through the hospital unit.
Bryan and Zachary came up Friday night. It was the first time the four of us were together since Dec 30. I got to leave the hospital and spend the night with Zachary. Saturday we did a little shopping (Eli needed the next size up in shoes so Z picked out some really cool Cars shoes that light up!). We had more time at the hospital together then some family came to stay with Eli while Bryan, Zachary and I went out to dinner. Then Zachary went home with them and Bryan stayed through Sunday.
 | |
| Think these brothers were happy to see each other again?!? |
Many of you have sweetly asked for an address to send cards. We would love to get some mail while we're here! Eli got two cards today and it really made a big difference in his mood. Many of you have asked about visiting. While we would love to see you, we need to keep our visitors to a minimum. As of now, Eli is in protective isolation. That is for his benefit. We have to do everything we can to keep him as healthy as possible before this surgery. We don't want to delay it due to a preventable illness. It was very important for him to see Zachary, but we also won't hesitate to keep them apart if we think Zachary has any illness whatsoever. The staff here are very good at keeping me entertained when Eli gives me a break! Thanks for understanding. In no way do we want to hurt the feelings of people who have supported us through so much, but Eli's health is our number one priority.
Because of limiting our visitors, you can see why it is even more special to get cards and letters from all of you. Here are the addresses:
Peyton Manning Children's Hospital
Eli Veale, patient
Room 3011
2001 West 86th Street
Indianapolis, Indiana
46260
or you can mail it to
Eli Veale
201 East Main Street
Suite 401
Washington, Indiana
47501
The second address is Bryan's mom's business. She will collect any mail and give it to Bryan so he can deliver it when he visits. May I ask a favor? Please remember Zachary also. He's such a trooper through this and it makes him happy as well to open a funny card. No one has to go to any extreme for us, a card or letter is wonderful. Mail for him can go to the Washington address.
Specific Prayer Requests:
- Eli's blood cultures come back negative and STAY negative
- Eli's diarrhea subsides and he doesn't test positive for c-diff
- for Zachary as he seems to be doing well, but has his moments of insecurity and sadness
- for all the kids here and their families who are fighting battles none of us ever want to face
Thank you all!
Friday, January 10, 2014
The Verdict
Sorry for no updates. We only had bits of information for several days and I didn't want to keep correcting and updating the info. There's still some info the doctors are waiting for, but they have enough for everyone to basically be at the same conclusion regarding where/why Eli keeps having positive blood cultures.
After much testing, doctors are certain the source of Eli's staph aureus is the conduit, or graft, that was placed during his Fontan in April. That doesn't mean it was infected from the start, but it's now the source. It could have been the problem all along or staph germs could have settled there after Eli had the abscess on his sternal incision in May. We don't know, we won't ever know, and it doesn't help us to worry about those details.
Now we move on. What's the fix? Unfortunately the "fix" is surgery. The surgery we wanted to avoid. The infected material has to come out and it has to be replaced during that surgery to keep Eli's special circulation intact. The only way to get it out and replace it is to have his Fontan redone. While he's in surgery, they'll remove his pacemaker and the wires, as well as remove or replace any other foreign material they can.
We don't know when that will happen. There's still some testing that's being reviewed and lots of things have to come together. Also, despite over a week of IV antibiotics, Eli still has positive blood cultures. That means he has active staph aureus in his blood. Ideally, he'll respond to treatment soon and have negative cultures. Docs want him to have at least a week of negative cultures (possibly more) before he goes into open heart surgery. Dr. Steinberg also wants Eli's pacemaker turned off about a week before surgery so we can monitor how he does without it. That will help gauge how he will do after surgery.
How's Eli? Actually he's doing really, really well. He's much healthier than the other two times he was septic with staph. For the most part he's not had any fevers, he's got energy, and his limp is getting better. All that good news makes it harder to believe he needs this surgery. We can't only treat with antibiotics again and hope for the best. Even though Eli is acting like he feels well, the testing shows a lot of infection. It's definitely in his sternum and in the graft.
I have to say that I don't think either of us is very surprised by this. When we heard the doctor tell us Eli had positive cultures this time, that surprised us a little. However once we digested that information, we pretty much knew this was bigger than anyone originally thought last spring and would take a long time. Even now we don't know how long we're here. We don't have any idea when surgery will be. When he finally does get to have surgery, we have no idea what his recovery will be like. Last time we were here seven weeks postop. It could be similar, it could be shorter, it could be longer. We're already on Day 12.
Bryan and Zachary are on their way. Eli and I haven't seen Zachary since Dec 30. Zachary will go back to Washington Saturday and Bryan will on Sunday. It will be sooo good to have the four of us together again, even if it is in a hospital room. It doesn't matter where, just as long as we are together.
Specific Prayer Requests:
- the antibiotics do their job quickly and Eli's blood clears soon.
- that Eli does well with the pacer turned off whenever that happens
- for no new surprises (unless they're good ones!)
- for our family as we are going to be separated for a long time again
- that this is it. The "fix" to Eli's ongoing staph problem
Thank you for continuing to pray and for all the support. It's going to be a long road but we'll make it.
After much testing, doctors are certain the source of Eli's staph aureus is the conduit, or graft, that was placed during his Fontan in April. That doesn't mean it was infected from the start, but it's now the source. It could have been the problem all along or staph germs could have settled there after Eli had the abscess on his sternal incision in May. We don't know, we won't ever know, and it doesn't help us to worry about those details.
Now we move on. What's the fix? Unfortunately the "fix" is surgery. The surgery we wanted to avoid. The infected material has to come out and it has to be replaced during that surgery to keep Eli's special circulation intact. The only way to get it out and replace it is to have his Fontan redone. While he's in surgery, they'll remove his pacemaker and the wires, as well as remove or replace any other foreign material they can.
We don't know when that will happen. There's still some testing that's being reviewed and lots of things have to come together. Also, despite over a week of IV antibiotics, Eli still has positive blood cultures. That means he has active staph aureus in his blood. Ideally, he'll respond to treatment soon and have negative cultures. Docs want him to have at least a week of negative cultures (possibly more) before he goes into open heart surgery. Dr. Steinberg also wants Eli's pacemaker turned off about a week before surgery so we can monitor how he does without it. That will help gauge how he will do after surgery.
How's Eli? Actually he's doing really, really well. He's much healthier than the other two times he was septic with staph. For the most part he's not had any fevers, he's got energy, and his limp is getting better. All that good news makes it harder to believe he needs this surgery. We can't only treat with antibiotics again and hope for the best. Even though Eli is acting like he feels well, the testing shows a lot of infection. It's definitely in his sternum and in the graft.
I have to say that I don't think either of us is very surprised by this. When we heard the doctor tell us Eli had positive cultures this time, that surprised us a little. However once we digested that information, we pretty much knew this was bigger than anyone originally thought last spring and would take a long time. Even now we don't know how long we're here. We don't have any idea when surgery will be. When he finally does get to have surgery, we have no idea what his recovery will be like. Last time we were here seven weeks postop. It could be similar, it could be shorter, it could be longer. We're already on Day 12.
Bryan and Zachary are on their way. Eli and I haven't seen Zachary since Dec 30. Zachary will go back to Washington Saturday and Bryan will on Sunday. It will be sooo good to have the four of us together again, even if it is in a hospital room. It doesn't matter where, just as long as we are together.
Specific Prayer Requests:
- the antibiotics do their job quickly and Eli's blood clears soon.
- that Eli does well with the pacer turned off whenever that happens
- for no new surprises (unless they're good ones!)
- for our family as we are going to be separated for a long time again
- that this is it. The "fix" to Eli's ongoing staph problem
Thank you for continuing to pray and for all the support. It's going to be a long road but we'll make it.
Monday, January 6, 2014
Making Plans
Not too much has changed since our last update. Eli has been getting high doses of IV antibiotic every eight hours. He's not had any fever since we got here and his limp is getting better. He's still coughing but his lungs sound great so we think it's just nasal/sinus drainage that is making him cough.
There has been a "Meeting of the Minds" in regards to Eli's course of treatment. Dr. Belcher from Infectious Disease, Dr. Parikh who is Eli's main cardiologist, and Dr. Abraham who is the cardiac surgeon, have been discussing how best to proceed. Obviously everyone agrees that Eli can't keep getting staph infections in his blood every few months. Frankly, we're lucky he hasn't been sicker or even died from it. We have to find out where it's "hiding out" and eliminate that source. Infectious disease and cardiology think it's likely around Eli's pacemaker and wiring so they want it out. Surgery doesn't disagree, but wants to be more sure of that before removing the pacer. Eli does have other material in his body. He has a Gortex tube in his heart that was placed during his last surgery. Theoretically, it could be infected, but docs think the chances of that aren't as high as the pacer. That's because once that Gortex is in there, new tissue starts growing around it and it should be covered up enough to not be causing problems at this point. However, everyone agrees we can't rule anything out.
The doctors have agreed to do a tagged white cell study. For that, Eli will have blood drawn and it will be sent to lab (or pharmacy? I forget!) where it will be mixed with a substance that bonds to the white cells. Then it is reinjected into Eli. Approximately twelve hours later he will have a scan. He will be sedated for this scan (by a pediatric cardiac anesthesiologist) because he'll have to be still for a minimum of thirty minutes. The idea with this scan is that the tagged white cells will travel to any areas of infection and "glow" on the scan. {Remember, white cells are the parts of the blood that fight infection, so when a white cell count is up it means there's infection present in the body. If we can see where in the body the white cells are gathering, that tells us a probable source of infection.} The first thirty minutes are a head to toe scan. If anything shows up (or glows) then more images are made of that area/those areas to try and get a better view of what's happening.
We expect his foot will show up as an area of infection, but everyone agrees that is a secondary infection and not the source. The pocket around his pacemaker might show up, the area of his chest incision might because he know he had the incisional infection there in the spring so it could still be harboring staph, his pacer wires may or may not show up (whether or not they're infected) because they are so small, and the Gortex in his heart may show up.
Here are the four options the physicians are considering, largely based on the results of the tagged white cell study:
a) antibiotic therapy (inpatient now and long-term out patient)
b) remove the generator of the pacemaker (the "brains") but leave the wires. The advantage to this is that Eli's chest wouldn't have to be opened up to remove the pacer wires. The disadvantage is that the wires would still be there and could possibly have some germs on them that aren't seen on the scan because of how small the wires are.
c) remove the pacemaker and the wires
d) remove the pacemaker, wires, and the Gortex graft in his heart. This option would only be done if something shows up on the scan and requires us to do this. Any surgery or sedation has risks for anyone, but especially for Eli. If this option has to be done, it means open heart surgery, his heart being stopped and him being placed on bypass, and a greater risk of death. The graft would be removed and could be replaced with human donor tissue. Basically this surgery would be a "re-do" of the Fontan (big, third open heart surgery he had in April). This is the scariest of all the options and nearly worst-case scenario. We don't discuss what worst case scenario would be, and if you don't know then I don't think you could handle reading it.
So, right now we're waiting to find out the scheduling of Eli's tagged white cell study. I've tentatively been told the 7th, but I don't know if that means the day for the blood draw, mixing, and reinjection or the day of the scan. Not only do they have to coordinate all this with the pediatric cardiac anesthesiologist and the radiologist, but they're also trying to get his PICC line placed while he's sedated so that means coordinating with the PICC line placement team as well. I do not envy the surgery coordinator here!
Today, Eli's been playing, had a wagon ride, and eaten his breakfast and first round of lunch (he grazes rather than eating a lot at once so his tray will stay in our room usually until the next one is delivered!). Right now he's napping and getting his antibiotic. I'm so relieved they're getting him set up for the PICC because his IV is starting to give him problems. It looks great, isn't red, cool, warm, or swollen, but he cries when it starts and when the flush starts. He's very, very careful with it and always wants it to be covered up. He was the same way when he had PICC lines in the past. I've never seen anyone, adult or child, take such good care of their IV! However this has been in several days and we may be using up that vein. He's not a very hard stick to start a new one, but if we can get it to keep working until he gets his PICC that means one less traumatic experience for Eli.
Yesterday we took lots of pictures of the snowfall around here. I'll try to post some later. I know it's giving lots of people headaches, but since I'm here with Eli and not needing to go anywhere, I decided to just enjoy it. I'm one of those who loves the snow anyway. If you're one who doesn't love it, maybe you can think about the peace it's bringing my frazzled mind and just appreciate it for that fact! I'm sorry to all of you who are inconvenienced by the snow and temperatures right now. We want to send a special thank you to all the doctors, nurses, techs, and all staff at PMCH who have still made their way to work or even slept here so they can keep their shift. As the parent of a patient, I am very grateful to everyone who has kept things moving so smoothly despite the conditions outside. The same goes to my coworkers at Jasper Memorial who are working hard to keep patients and their loved ones cared for properly during this weather.
As I was typing this, I had a realization. Three years ago today started our journey as a family in the CHD (congenital heart defect) world. Eli's diagnosis came at St. Mary's Medical Center around 4am on Jan 6, 2011. He was ten weeks and one day old. Today is the anniversary of his first helicopter ride. Right about now is when his helicopter landed here without us as we drove from Evansville to Washington then on to Indy.
Three years ago today I felt lost, scared, numb, alone, frantic, and weak. Since then things have changed so much, Eli has conquered so much, and our family has learned so much, yet I feel those same emotions today as I did three years ago, just for slightly different reasons. As usual, thank you to everyone who has had any role in helping us along the way. We are so grateful to all of you every single day, not just the rotten days.
Specific Prayer Requests:
- that Eli does well with sedation for his tagged white cell study and PICC line placement
- that the results help the doctors easily make the right decision for Eli's care
- for his IV to stay good until the PICC line is placed so we don't have to start a new one for just a couple days
- for all the kids and families who are here. Basically, if they were kept here over the New Year's holiday and through the storm that hit, we know they were the sickest of the sick. There's a decent chance (in my mind) that Eli may be the healthiest of the kids on our unit. No one should suffer, but it's even more awful when it's a child.
- that his cough goes away and he doesn't have anything more than nasal drainage causing it
- that whatever plan is chosen by the docs, it gives us peace of mind and (much more importantly) that it's the right plan of care for Eli.
As always, I will update when I have more information. Please be safe, warm, take care of your loved ones (human and non-human!), and always remember to cherish Every Little Beat...
There has been a "Meeting of the Minds" in regards to Eli's course of treatment. Dr. Belcher from Infectious Disease, Dr. Parikh who is Eli's main cardiologist, and Dr. Abraham who is the cardiac surgeon, have been discussing how best to proceed. Obviously everyone agrees that Eli can't keep getting staph infections in his blood every few months. Frankly, we're lucky he hasn't been sicker or even died from it. We have to find out where it's "hiding out" and eliminate that source. Infectious disease and cardiology think it's likely around Eli's pacemaker and wiring so they want it out. Surgery doesn't disagree, but wants to be more sure of that before removing the pacer. Eli does have other material in his body. He has a Gortex tube in his heart that was placed during his last surgery. Theoretically, it could be infected, but docs think the chances of that aren't as high as the pacer. That's because once that Gortex is in there, new tissue starts growing around it and it should be covered up enough to not be causing problems at this point. However, everyone agrees we can't rule anything out.
The doctors have agreed to do a tagged white cell study. For that, Eli will have blood drawn and it will be sent to lab (or pharmacy? I forget!) where it will be mixed with a substance that bonds to the white cells. Then it is reinjected into Eli. Approximately twelve hours later he will have a scan. He will be sedated for this scan (by a pediatric cardiac anesthesiologist) because he'll have to be still for a minimum of thirty minutes. The idea with this scan is that the tagged white cells will travel to any areas of infection and "glow" on the scan. {Remember, white cells are the parts of the blood that fight infection, so when a white cell count is up it means there's infection present in the body. If we can see where in the body the white cells are gathering, that tells us a probable source of infection.} The first thirty minutes are a head to toe scan. If anything shows up (or glows) then more images are made of that area/those areas to try and get a better view of what's happening.
We expect his foot will show up as an area of infection, but everyone agrees that is a secondary infection and not the source. The pocket around his pacemaker might show up, the area of his chest incision might because he know he had the incisional infection there in the spring so it could still be harboring staph, his pacer wires may or may not show up (whether or not they're infected) because they are so small, and the Gortex in his heart may show up.
Here are the four options the physicians are considering, largely based on the results of the tagged white cell study:
a) antibiotic therapy (inpatient now and long-term out patient)
b) remove the generator of the pacemaker (the "brains") but leave the wires. The advantage to this is that Eli's chest wouldn't have to be opened up to remove the pacer wires. The disadvantage is that the wires would still be there and could possibly have some germs on them that aren't seen on the scan because of how small the wires are.
c) remove the pacemaker and the wires
d) remove the pacemaker, wires, and the Gortex graft in his heart. This option would only be done if something shows up on the scan and requires us to do this. Any surgery or sedation has risks for anyone, but especially for Eli. If this option has to be done, it means open heart surgery, his heart being stopped and him being placed on bypass, and a greater risk of death. The graft would be removed and could be replaced with human donor tissue. Basically this surgery would be a "re-do" of the Fontan (big, third open heart surgery he had in April). This is the scariest of all the options and nearly worst-case scenario. We don't discuss what worst case scenario would be, and if you don't know then I don't think you could handle reading it.
So, right now we're waiting to find out the scheduling of Eli's tagged white cell study. I've tentatively been told the 7th, but I don't know if that means the day for the blood draw, mixing, and reinjection or the day of the scan. Not only do they have to coordinate all this with the pediatric cardiac anesthesiologist and the radiologist, but they're also trying to get his PICC line placed while he's sedated so that means coordinating with the PICC line placement team as well. I do not envy the surgery coordinator here!
Today, Eli's been playing, had a wagon ride, and eaten his breakfast and first round of lunch (he grazes rather than eating a lot at once so his tray will stay in our room usually until the next one is delivered!). Right now he's napping and getting his antibiotic. I'm so relieved they're getting him set up for the PICC because his IV is starting to give him problems. It looks great, isn't red, cool, warm, or swollen, but he cries when it starts and when the flush starts. He's very, very careful with it and always wants it to be covered up. He was the same way when he had PICC lines in the past. I've never seen anyone, adult or child, take such good care of their IV! However this has been in several days and we may be using up that vein. He's not a very hard stick to start a new one, but if we can get it to keep working until he gets his PICC that means one less traumatic experience for Eli.
Yesterday we took lots of pictures of the snowfall around here. I'll try to post some later. I know it's giving lots of people headaches, but since I'm here with Eli and not needing to go anywhere, I decided to just enjoy it. I'm one of those who loves the snow anyway. If you're one who doesn't love it, maybe you can think about the peace it's bringing my frazzled mind and just appreciate it for that fact! I'm sorry to all of you who are inconvenienced by the snow and temperatures right now. We want to send a special thank you to all the doctors, nurses, techs, and all staff at PMCH who have still made their way to work or even slept here so they can keep their shift. As the parent of a patient, I am very grateful to everyone who has kept things moving so smoothly despite the conditions outside. The same goes to my coworkers at Jasper Memorial who are working hard to keep patients and their loved ones cared for properly during this weather.
As I was typing this, I had a realization. Three years ago today started our journey as a family in the CHD (congenital heart defect) world. Eli's diagnosis came at St. Mary's Medical Center around 4am on Jan 6, 2011. He was ten weeks and one day old. Today is the anniversary of his first helicopter ride. Right about now is when his helicopter landed here without us as we drove from Evansville to Washington then on to Indy.
 |
| Our sweet little baby as he was being flown from Evansville to Indianapolis three years ago today. Thanks to the incredible StatFlight crew for taking photos and sending them to us along with a letter and the tiny pillow used for his head. If you look closely you can see the tree line and some Hoosier landscape out the window above Eli's head. |
Three years ago today I felt lost, scared, numb, alone, frantic, and weak. Since then things have changed so much, Eli has conquered so much, and our family has learned so much, yet I feel those same emotions today as I did three years ago, just for slightly different reasons. As usual, thank you to everyone who has had any role in helping us along the way. We are so grateful to all of you every single day, not just the rotten days.
Specific Prayer Requests:
- that Eli does well with sedation for his tagged white cell study and PICC line placement
- that the results help the doctors easily make the right decision for Eli's care
- for his IV to stay good until the PICC line is placed so we don't have to start a new one for just a couple days
- for all the kids and families who are here. Basically, if they were kept here over the New Year's holiday and through the storm that hit, we know they were the sickest of the sick. There's a decent chance (in my mind) that Eli may be the healthiest of the kids on our unit. No one should suffer, but it's even more awful when it's a child.
- that his cough goes away and he doesn't have anything more than nasal drainage causing it
- that whatever plan is chosen by the docs, it gives us peace of mind and (much more importantly) that it's the right plan of care for Eli.
As always, I will update when I have more information. Please be safe, warm, take care of your loved ones (human and non-human!), and always remember to cherish Every Little Beat...
Wednesday, January 1, 2014
Positive
We try to look "at the bright side" and not focus on the negative news. We try to stay positive. However today we got a positive we didn't want: Eli's blood cultures. Two were drawn the night he was admitted and today we found out they were positive. Positive in medical terms is not usually a good thing. These results mean that Eli has an infection in his blood. The good side of this is that we know what's wrong and can work on fixing it. The bad news is that he's battling his third round of staph aureus in eight months.
And it gets worse. He's been started on his third six-week course of strong antibiotics. He'll have to have another PICC line placed like he did in the spring and in August. When he finally gets to come home it will be with the PICC line and antibiotic therapy.
What's causing all this? Although the final lab results aren't back until tomorrow, we're certain it's the same "bug" he had the other two times. Both times it was Methicillin Sensitive Staph Aureus so we suspect it will be the same thing this time. Assuming it is, that means it has survived two rounds of tough antibiotic therapy and laid dormant for nearly three months before acting up this time. That means it's hiding somewhere in his body. The most likely place it's hiding is on his pacemaker. The Infectious Disease staff really, really wanted the pacer system to be removed when this happened last time, but Eli responded very well to the treatment so everyone just hoped that took care of it. But now it's obvious that his pacemaker and wiring will have to be removed. That means another surgery. Because it's a holiday, we haven't talked to the cardiac surgeon, but we think removing the system will likely involve opening his sternum again to get the wiring out. This is not a simple thing. And we also don't know for sure how he will be without the pacemaker, but we know he can't keep it and risk getting sicker and sicker.
The "funny" thing is that he's actually feeling a little better. Eli still has a cough and runny nose, but he's been without fever throughout the entire admission. He has more energy and lots of silly moments. Before the lab called with the culture results, the hospitalist and staff on this unit were nearly done with his discharge paperwork because he was doing so well. They knew they were waiting for lab to call when the results were in, but based on his physical exam they truly thought he would be going home today. No promises were ever made to us though and when the doctor came in to tell us the cultures were positive it was obvious she was upset for us. They love our little guy here and it hurts them to have to deliver bad news to us. It hurts us worse to hear it, but it's good to know how much they care!
The nurse practitioner from Infectious Disease came to talk to us and set up our game plan. An IV was started on Eli so he could receive strong antibiotics. Until this afternoon, the only meds Eli was getting were his usual home medications. Nothing new had been added because he was doing well. Eli will be getting the same antibiotic he got the other two times, but at a stronger dose. The dose has to be stronger this time because they're almost certain Eli doesn't have a hairline fracture in his foot. They think the infection is in his bones (osteomyelitis) and causing the foot pain/limping. That would explain why he's had two sets of xrays a week apart and neither show any sign of fracture. A stronger/higher dose of antibiotics is required to penetrate the bone so it can treat/kill the staph hiding out there. There's actually another antibiotic they prefer to use for bone infections, but Eli's strain is resistant to that antibiotic so it wouldn't be beneficial to use it.
Bryan left a little while ago. It's killing him to go back home tonight, but he's supposed to go to work tomorrow and he is out of sick time and low on vacation time. Besides, tomorrow (Thursday) is likely a day of planning and very little action. Here's what we think and expect to happen:
-find out the exact identification of what's growing on his cultures and what antibiotics it's sensitive to. Everyone is expecting it to be MSSA (methicillin sensitive staph aureus) like the other two times, but we need to make sure.
-for Infectious Disease and cardiology to discuss the best plan of action (which everyone anticipates will be to remove the pacemaker).
-coordinate surgery to remove the pacer system and place the PICC line. We will insist the two be done together so Eli doesn't have to be sedated more often than necessary.
-there may also be some testing done prior to any scheduling so they can find out how he does without the pacemaker. That will give us an inkling of what to expect after the pacer is removed.
All this means that we will be here for a while. I didn't ask for a timeline, but I did ask Angie (Inf Disease nurse practitioner) what the criteria would be for Eli to go home. She said that he'd have to be well established on the antibiotic regimen, have negative blood cultures (starting tomorrow he'll have daily blood cultures), be well recovered from the surgery, including having stable heart rhythm and rate without the pacemaker, and whatever other criteria is set by cardiology.
The earliest we expect surgery to be is Friday. Again, we'll know more tomorrow. Whenever it is, Bryan will be back, but until then he'll be home with Zachary and to work. I don't know when I'll get to see Zachary again or when the boys will see each other again. Because there's so much illness going around right now, the hospital has implemented a no visiting policy for anyone under the age of 12. Right now that's just effective in the PICU (where we anticipate Eli will be after surgery) but it's just a matter of time before it's hospital-wide.
Eli knows he's in the hospital and it frustrates him to be in protective isolation. We've told him the play room is closed because they have to fix some things, but I don't know how long he'll believe that. He's had a lot of fun, playful times so far, but mostly it's fussiness and frustration because he knows he's here and things he can't control are happening to him. The kid is too smart.
Bryan and I are okay. Sort of. I don't think either one of us is surprised by the news, but we were so hopeful for a better start to the year. My emotions are all over the board right now. Sometimes I'm grateful we are pretty sure we know what's happening and there are things we can do to fix it. Other times I just want to slump over in a pile of tears and cry until my eyes fall out. I'm tired. Physically and emotionally. But just when I start to let myself get lost in those thoughts, Eli will laugh at something in one of his many movies we have in the room, Bryan will send a text with a nice message, or I'll look at a picture of Zachary's smiling face and it all helps me remember the good things.
Specific Prayer Requests:
-that the cultures show what we expect so we can deal with what we "know" and don't have new variables to worry about
-that a plan is agreed upon by Infectious Disease and Cardiology and we can act quickly so recovery can begin
-for the four of us as we deal (again) with these stresses and separation
Thank you for all your prayers and support. Things are tough right now and have been for a while, but we know they could always be worse. Eli is relatively healthy despite this ongoing infection, we have options available (maybe not options we like, but options nonetheless), and we are comfortable with the people and care we have here. We just didn't want to be here! Maybe our better year is coming later in 2014.
And it gets worse. He's been started on his third six-week course of strong antibiotics. He'll have to have another PICC line placed like he did in the spring and in August. When he finally gets to come home it will be with the PICC line and antibiotic therapy.
What's causing all this? Although the final lab results aren't back until tomorrow, we're certain it's the same "bug" he had the other two times. Both times it was Methicillin Sensitive Staph Aureus so we suspect it will be the same thing this time. Assuming it is, that means it has survived two rounds of tough antibiotic therapy and laid dormant for nearly three months before acting up this time. That means it's hiding somewhere in his body. The most likely place it's hiding is on his pacemaker. The Infectious Disease staff really, really wanted the pacer system to be removed when this happened last time, but Eli responded very well to the treatment so everyone just hoped that took care of it. But now it's obvious that his pacemaker and wiring will have to be removed. That means another surgery. Because it's a holiday, we haven't talked to the cardiac surgeon, but we think removing the system will likely involve opening his sternum again to get the wiring out. This is not a simple thing. And we also don't know for sure how he will be without the pacemaker, but we know he can't keep it and risk getting sicker and sicker.
The "funny" thing is that he's actually feeling a little better. Eli still has a cough and runny nose, but he's been without fever throughout the entire admission. He has more energy and lots of silly moments. Before the lab called with the culture results, the hospitalist and staff on this unit were nearly done with his discharge paperwork because he was doing so well. They knew they were waiting for lab to call when the results were in, but based on his physical exam they truly thought he would be going home today. No promises were ever made to us though and when the doctor came in to tell us the cultures were positive it was obvious she was upset for us. They love our little guy here and it hurts them to have to deliver bad news to us. It hurts us worse to hear it, but it's good to know how much they care!
The nurse practitioner from Infectious Disease came to talk to us and set up our game plan. An IV was started on Eli so he could receive strong antibiotics. Until this afternoon, the only meds Eli was getting were his usual home medications. Nothing new had been added because he was doing well. Eli will be getting the same antibiotic he got the other two times, but at a stronger dose. The dose has to be stronger this time because they're almost certain Eli doesn't have a hairline fracture in his foot. They think the infection is in his bones (osteomyelitis) and causing the foot pain/limping. That would explain why he's had two sets of xrays a week apart and neither show any sign of fracture. A stronger/higher dose of antibiotics is required to penetrate the bone so it can treat/kill the staph hiding out there. There's actually another antibiotic they prefer to use for bone infections, but Eli's strain is resistant to that antibiotic so it wouldn't be beneficial to use it.
Bryan left a little while ago. It's killing him to go back home tonight, but he's supposed to go to work tomorrow and he is out of sick time and low on vacation time. Besides, tomorrow (Thursday) is likely a day of planning and very little action. Here's what we think and expect to happen:
-find out the exact identification of what's growing on his cultures and what antibiotics it's sensitive to. Everyone is expecting it to be MSSA (methicillin sensitive staph aureus) like the other two times, but we need to make sure.
-for Infectious Disease and cardiology to discuss the best plan of action (which everyone anticipates will be to remove the pacemaker).
-coordinate surgery to remove the pacer system and place the PICC line. We will insist the two be done together so Eli doesn't have to be sedated more often than necessary.
-there may also be some testing done prior to any scheduling so they can find out how he does without the pacemaker. That will give us an inkling of what to expect after the pacer is removed.
All this means that we will be here for a while. I didn't ask for a timeline, but I did ask Angie (Inf Disease nurse practitioner) what the criteria would be for Eli to go home. She said that he'd have to be well established on the antibiotic regimen, have negative blood cultures (starting tomorrow he'll have daily blood cultures), be well recovered from the surgery, including having stable heart rhythm and rate without the pacemaker, and whatever other criteria is set by cardiology.
The earliest we expect surgery to be is Friday. Again, we'll know more tomorrow. Whenever it is, Bryan will be back, but until then he'll be home with Zachary and to work. I don't know when I'll get to see Zachary again or when the boys will see each other again. Because there's so much illness going around right now, the hospital has implemented a no visiting policy for anyone under the age of 12. Right now that's just effective in the PICU (where we anticipate Eli will be after surgery) but it's just a matter of time before it's hospital-wide.
Eli knows he's in the hospital and it frustrates him to be in protective isolation. We've told him the play room is closed because they have to fix some things, but I don't know how long he'll believe that. He's had a lot of fun, playful times so far, but mostly it's fussiness and frustration because he knows he's here and things he can't control are happening to him. The kid is too smart.
Bryan and I are okay. Sort of. I don't think either one of us is surprised by the news, but we were so hopeful for a better start to the year. My emotions are all over the board right now. Sometimes I'm grateful we are pretty sure we know what's happening and there are things we can do to fix it. Other times I just want to slump over in a pile of tears and cry until my eyes fall out. I'm tired. Physically and emotionally. But just when I start to let myself get lost in those thoughts, Eli will laugh at something in one of his many movies we have in the room, Bryan will send a text with a nice message, or I'll look at a picture of Zachary's smiling face and it all helps me remember the good things.
Specific Prayer Requests:
-that the cultures show what we expect so we can deal with what we "know" and don't have new variables to worry about
-that a plan is agreed upon by Infectious Disease and Cardiology and we can act quickly so recovery can begin
-for the four of us as we deal (again) with these stresses and separation
Thank you for all your prayers and support. Things are tough right now and have been for a while, but we know they could always be worse. Eli is relatively healthy despite this ongoing infection, we have options available (maybe not options we like, but options nonetheless), and we are comfortable with the people and care we have here. We just didn't want to be here! Maybe our better year is coming later in 2014.
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