Thursday, 08/22: Eli was running a high fever for hours. It didn't come down until Friday morning despite alternating doses of Tylenol & Motrin every three hours. He was also vomiting, dry heaving, and (most concerning to me) his oxygen sats were lower than normal. Even with raising his oxygen to 1L he was sating 92%. Usually he stays 95% or above with 0.5L. I also noticed he was working harder to breathe and breathing faster than normal. I debated a trip to our ER, but decided to keep an eye on him and take him if he got worse. By the time offices were opening I was texting and calling so we could get the ball rolling with him. I wasn't sure what was going on, but we knew it wasn't normal and needed addressed.
Friday, 08/23: After speaking with our cardiologist and Angie with Infectious Disease it was decided to admit him to the hospital. I packed up (most of it was ready to go anyway!) and we headed north. Bryan stayed in town to finish the workday and be with Zachary after school. When we got to the hospital we were what they call a direct admit. We still have to go through the ER but that's just for them to get his vital signs and hold us until his room is ready. Once we got to the ER, Eli's sats were down to 77%.
We were taken to a room on the third floor (general peds unit) and he was seen by a hospital intensivist and by the Infectious Disease doctor and nurse practitioner. He was admitted and sent for chest xray. Then back to the room for an IV and lab draws, including two blood cultures. Then we went for a chest CT. The purpose of that was to see if he had any large areas of infection to blame for all these issues. After all that was done we got to settle in for the night. His room is one of the cool "Peyton Manning" rooms meaning it's decorated with Peyton and Colts memorabilia. After we'd been in the room a couple hours Eli was looking around and got excited to see Blue, the Colts mascot. He's in a big boy bed instead of a crib. They said they could get us a crib if I wanted but I think he likes the openness of the bed and is doing fine for now. We know that when he's feeling better he will have to have a crib for safety purposes because he will be on. The. Go.
Eli had a pretty good day and night Friday but he is still a very sick little guy. Because of everything going on he is considered septic right now. He threw up once at the hospital but was able to eat and drink some and keep it down. His fever was gone (without any Motrin or Tylenol) but his skin still felt very warm. Despite being on 2L of oxygen he was still breathing fast and working hard to breathe. His oxygen saturation varied in the 80s most of the night. He had IV fluids going for hydration, nighttime PediaSure feeds for nutrition, and was also started on Cefazolin (antibiotic) to start fighting whatever infection was present. After the blood cultures are back we'll know if we should change to another.
Saturday, 08/24: The day started off with an echocardiogram. Eli didn't fuss much and she was able to complete it quickly. Throughout the morning we saw several of our docs. It started with the hospital intensivist for the day who had taken care of Eli multiple times on our previous admission April-June. Dr. Whalen had a lot to discuss about Eli. He said that Eli's body is very strongly fighting an infection. His white blood cell (WBC) count was very high at 27,000, his bands were high and his CRP was high at 21. {Translation: WBCs are cells in our blood that fight infection. Bands are immature white blood cells. Eli's body is fighting so hard that it is sending out immature WBC ("untrained troops") to fight. The CRP is another indicator of infection or inflammation present in the body.}
The good news didn't stop there. The CT scan showed the effusion that had been drained Tuesday was back. The scan also showed areas of atelectasis (develops when the tiny air sacs (alveoli) within the lung become deflated). Basically the upper and lower lobes of Eli's right lung weren't moving air. The middle lobe wasn't moving much because of the effusion. Dr. Whalen wasn't sure if the atelectasis is due to the effusion or pneumonia. That's right, possible pneumonia. Also, the blood cultures they drew Friday were growing a bacteria. It would take another 24 hours to identify which organism was growing and then another 24 or more hours to test which antibiotics it may be sensitive to. Because we had a positive blood culture, Eli was started on Vancomycin in addition to the Cefazolin. At this point there are still a lot of pieces to put together, but at least we have a starting point for treatment.
Dr. Abraham (heart surgeon) came in to see us. We hadn't seen him since June 4 when we were discharged after the long Fontan admission. I asked if he'd missed us and with a smile he replied, "No, not really." He talked to us about the different things we'll be addressing in the next few days. He wants to place a chest tube tomorrow (Sunday) to help raise Eli's sats and make it more comfortable for him to breathe. That may also help decrease the atelectasis and allow Eli to fight the pneumonia a little more. At some point he wants to do a tagged white cell scan. They inject a radioactive dye into Eli's IV and it attaches to the white blood cells. Using nuclear imaging they follow the glowing WBCs and see where in his body they're gathering. That could give us some information regarding the source of his infection. He has been clear with us since Eli's abscess in May that the pacemaker may need to come out. If it does come out, we could possibly treat Eli with strong antibiotics for several months and then revisit the possibility of putting a pacemaker back in. However, he said first thing's first and that is the chest tube.
We also had visits from Dr. Belcher (Infectious Disease) and Dr. Kumar (cardiologist). They didn't really have any new news for us other than Dr. Kumar saying that the echo looked stable in comparison with Eli's last one and it also didn't show anything in the heart that would indicate infection. An echo isn't the primary way of discovering cardiac infection but it could show up there if it's present. He said that Dr. Steinberg (another cardiologist, this one is in charge of the pacemaker settings) will interrogate the pacemaker this week. That means they'll access the "memory" and see how much Eli is using the pacer. If he's not very dependent on it then it will ease some of our fears if the pacer has to come out.
Bryan and Zachary got to the hospital just before lunch and we got to visit together most of the day. The two of them left for the Colts game and spent the night at my sister's house.
Sunday 08/25: Bryan got to the hospital mid morning and the three of us spent some time together. Zachary stayed at my sister's house and later went with one of Bryan's sisters. They went miniature golfing and Zachary got a hole in one :) He said, "I just can't believe it!"
Eli was brought down to the PICU about 10:30 to have his chest tube placed. Bryan and I waited out in the lobby like we have a few times before. This time we waited a long time. Just as we were starting to voice our concern to each other, one of the PICU nurses came by and gave us an update. Eli was doing fine, but Dr. Abraham was having trouble accessing the effusion. He was going off the chest xray (as he did with all the other chest tubes he's placed in Eli this year) and tried one spot , but didn't get any fluid out. He tried a second spot and got a small amount of fluid but knew it wasn't enough. He had an ultrasound tech come in and verify exactly where the fluid was and what it looked like. He didn't like what he saw on the ultrasound. Eli has a pocket of fluid but it's in a difficult spot to access. He could maybe get it if he went in Eli's back instead of the side, but that would be very uncomfortable for Eli in the coming days. Complicating things further is what's happened to the effusion. It's not a single sac of fluid, it's actually multiple sacs. The term used is loculated. It has several sacs together, kind of like a honeycomb. If Dr. Abraham were able to get a chest tube in the right spot, he could only drain one or two of the small sacs and there would be multiple more to get. Dr. Abraham wasn't comfortable proceeding further in this setting so he's taking Eli to the OR Monday. I honestly didn't get to hear much of what he was explaining about the OR because Eli was crying a lot at the time. I couldn't even think of questions but that's okay because I wouldn't have heard the answers! I know I will see him or Sara (nurse practitioner) before the procedure so I'll get a better explanation of how this will be addressed then. Eli is tentatively set for noon but it could be bumped to later depending on how the cases before him progress.
Because his sats were low and he was working so much with each breath, they kept him in the PICU for the night. We don't know for sure but I suspect there's a strong chance we'll be here tomorrow night too. For now they can hold our room on the third floor so we don't have to move all our stuff, but we don't know how long they can hold it. It just depends on how many admissions they get while we're gone. Eli has rested some tonight and had a lot of fussy times. He's on something I'm not familiar with called Vapotherm. It's an oxygenation system that delivers heated and humidified oxygen with positive pressure (meaning it's harder for the patient to breathe out what we want them to keep in). It helps reduce the amount of work it takes for Eli to breathe right now. It's delivered through a nasal cannula so he can still talk, eat or drink.
So, in a long nutshell, that's what's been going on the past few days. We don't have a lot of answers but we are making some progress. There is absolutely no talk of discharge anytime soon. I've already started making a mental list of things I'd like Bryan to bring when he comes back next weekend. Yes, Bryan left to take Zachary back home. He really debated staying for tomorrow's procedure, but to be quite honest he doesn't have a lot of vacation/sick days left. We don't know what we may be facing in the next few days or weeks so he decided to go back to work. The advantage is that Zachary will still have one parent in Washington and they can be together almost every night. Our hope is that Bryan won't have to use any of the days he has left and can use them for pure enjoyment around the holidays!
We can definitely use your prayers. Two of the docs have independently told us this is a very complex case right now and we have a lot of work to do. Eli is strong and it's awesome that his body is fighting they way it has been. However, we don't want him to have to fight this hard! We want him to go home and tear up the house, sneakily open the child lock on the cabinet containing the potato chips, and sit on the couch watching the Reds with Daddy. That's where he belongs and what he's good at!
Specific prayer requests:
- for Monday's trip to the OR to be safe and productive
- for guidance on the right path to take as we put the puzzle pieces together
- for Eli to get some peaceful rest. He's hurting tonight and just generally uncomfortable (and probably mad at us!)
- for Zachary as he adjusts to our separation again
- for Bryan as he assumes the unwanted role of being a single working dad
- for me as I try to take good care of Eli, ask the right questions, and properly relay information to Bryan and all of you
Thank you for the continued prayers and support! It is really uplifting to see your words of encouragement and know Eli is lifted in prayer from so many! Thank you :)
Monday, August 26, 2013
Monday, August 19, 2013
Funny Things
{For the past several months, I've been randomly typing conversations with the boys and saving them here. With all the seriousness we've had lately, I thought it would be a good time to share some of their funny sayings! I'll come back and add to this as they crack us up with more funny stuff!}
We all want to remember the things our children say. I love their sweet little voices. I love hearing them say new words (most of them!). I love witnessing them experiment with their voices as they discover whispering, yelling (for a little bit), and most of all, their laughter. My boys crack me up. Even when I'm soooo frustrated with the things I let get me down (messy house, two-year old behavior, five-year old behavior, scheduling everything we have to do, etc), they still make me laugh. Here's a few examples I've been keeping track of just so I don't someday forget. Hope you laugh along with me:
One night as I was heading out to pick up a pizza for supper:
me: "Zachary, do you want to ride with me to Papa John's?"
Z: "Yes, I'm tired of looking at Eli's orange shirt with Mickey & Donald on it!"
As we were leaving the house to run errands:
me: "Hey, dingbat, you forgot your jacket."
Z: "No, you're the dingbat for helping me."
I have no idea what he meant but the silly tone he used made it hilarious.
Walking through Sears to burn off some energy as we waited in line for Reds autographs at the Bloomington Mall:
Z: "Wow! This must be the NICEST store I've EVER been in!!!!" (very loudly and with lots of enthusiasm....lots of people heard)
Zachary telling Aunt Kendra about getting our picture taken with the mayor later that afternoon for CHD Awareness Week:
me: "Tell Kendra what we're doing this afternoon."
Z: "Having our pictures taken."
K: "Why?"
Z: "Ummm, about sick hearts."
me: "Tell her who else is in the picture."
Z: (totally serious) "Mommy, Daddy, Eli, me and a mirror" (mayor).
Eli and I were walking through WalMart while Bryan and Zachary checked out some stuff. To occupy him I was asking him what sounds animals make:
me: "What does a doggie say?"
E: "woof woof"
me: "What does a kitty cat say?"
E: "meow"
me: "What does a duck say?"
E: "quack"
me: "What does a cow say?"
E: "moo"
me: "What does mommy say?"
E: "moo" (insert mischievous smile)
Zachary played basketball through the YMCA. Bryan was his coach. Most of their practices and games were at Lena Dunn, a local elementary school, but one practice was at the YMCA. This is how Zachary explained the change to us:
Z: "We aren't having practice at our usual stadium. Usually we practice at Lena Dunn Stadium, but this time we have to go to the YMCA Stadium."
I love that my five year old thinks he plays basketball on a six foot goal in a stadium. Before his first game last year he thought the lights would go out and a spotlight would shine on each player during the starting lineups (they don't even have starting lineup announcements in Biddy Ball). I suppose we set his standards too high by taking him to all the basketball games we did when he was really little!
Zachary loved the Super-Bowl halftime show performance by The Black Eyed Peas. We recorded it on our DVR and the boys randomly watch and get their crazy groove-thing on. Sometimes instead of dancing they play music along with the show. This particular night they danced. After watching it twice and dancing both times:
Z: "Whew! I'm as sweaty as a hot tire!"
Both boys like to help with laundry. They like the sorting process, falling into the piles, loading the washer, and switching clothes from the washer to the dryer. This particular evening, as Zachary walked through the dining room carrying a random pillowcase, I asked Zachary if he'd help me move clothes to the dryer. His response? "No, thanks. I have to practice juggling."
The four of us were having late night snuggle time on the couch. Eli was on Bryan's lap, and Zachary & I were curled up at the other end of the couch. We were trying to get them to fall asleep (so we could watch the second half of IU!), but Zachary was fixated on what was for lunch the next day. He kept coming up with a new option, despite the fact that we'd asked him to stop worrying about it.
Z: "I like to ask questions. If I ask questions I get answers. I like answers about my food because they tell me the answers to my questions. But I don't have any questions about how the Earth spins around because I already know that."
Duck Dynasty has become a favorite show around here. We really don't watch it that much, but when we do we always laugh. Eli started saying "Hey, Jack!" like Uncle Si on the show. Now that has translated to many of his phrases starting with "Hey (insert phrase)" Examples: "Hey, no!" "Hey, mine!" "Hey, bye-bye!"
One evening over supper Zachary was day dreaming. We asked what he was thinking about and he said, "I wonder who my wife will be." He provided a short discussion about who he had in mind (name withheld for privacy). I told him he didn't have to decide now, he could wait until he was a little older. "Maybe wait until second grade?" I asked. He replies, "No, Mommy, I'm ready now. I'll ask her tomorrow." So then I asked if he knew what it meant to have a wife. He says, "Yes, marriage. We get married." I asked if he knew that meant he would leave Mommy and Daddy's house and go live in a house with his wife. He very calmly laid down his fork, folded his hands and leaned forward. His reply was "Yes, Mommy. It will be hard and it will be sad." Then he picked up his fork and ate like nothing serious had just happened. I stopped talking about it then because I was afraid I would cry!!!
***addendum -- He did not ask her the next day. It's been several days and he hasn't mentioned it again.
This one doesn't involve an actual discussion, but things we realized Zachary wasn't saying correctly. All three were said in the same conversation and Bryan and I were having a really hard time controlling our laughter by the end of it.
Z: "maparoni" = macaroni
Z: "apple spider" = apple cider
Z: "bengal" = bagel (this one took us longer to figure out than the others)
Eli must have heard someone use the phrase "You ding-dong!" because he says it all the time now. Except what he says doesn't sound like "ding-dong," it's more like "ping-pong." Sometimes it comes out "ping-pom" which is funnier. Even funnier was the day he yelled it at me with his pacifier in his mouth and it sounded exactly like he called me a tampon. When he saw the startled looks on our faces, he had to yell it again. Of course there were many people around when he did that so who knows what people think we're teaching our toddler!
We all want to remember the things our children say. I love their sweet little voices. I love hearing them say new words (most of them!). I love witnessing them experiment with their voices as they discover whispering, yelling (for a little bit), and most of all, their laughter. My boys crack me up. Even when I'm soooo frustrated with the things I let get me down (messy house, two-year old behavior, five-year old behavior, scheduling everything we have to do, etc), they still make me laugh. Here's a few examples I've been keeping track of just so I don't someday forget. Hope you laugh along with me:
One night as I was heading out to pick up a pizza for supper:
me: "Zachary, do you want to ride with me to Papa John's?"
Z: "Yes, I'm tired of looking at Eli's orange shirt with Mickey & Donald on it!"
As we were leaving the house to run errands:
me: "Hey, dingbat, you forgot your jacket."
Z: "No, you're the dingbat for helping me."
I have no idea what he meant but the silly tone he used made it hilarious.
Walking through Sears to burn off some energy as we waited in line for Reds autographs at the Bloomington Mall:
Z: "Wow! This must be the NICEST store I've EVER been in!!!!" (very loudly and with lots of enthusiasm....lots of people heard)
Zachary telling Aunt Kendra about getting our picture taken with the mayor later that afternoon for CHD Awareness Week:
me: "Tell Kendra what we're doing this afternoon."
Z: "Having our pictures taken."
K: "Why?"
Z: "Ummm, about sick hearts."
me: "Tell her who else is in the picture."
Z: (totally serious) "Mommy, Daddy, Eli, me and a mirror" (mayor).
Eli and I were walking through WalMart while Bryan and Zachary checked out some stuff. To occupy him I was asking him what sounds animals make:
me: "What does a doggie say?"
E: "woof woof"
me: "What does a kitty cat say?"
E: "meow"
me: "What does a duck say?"
E: "quack"
me: "What does a cow say?"
E: "moo"
me: "What does mommy say?"
E: "moo" (insert mischievous smile)
Zachary played basketball through the YMCA. Bryan was his coach. Most of their practices and games were at Lena Dunn, a local elementary school, but one practice was at the YMCA. This is how Zachary explained the change to us:
Z: "We aren't having practice at our usual stadium. Usually we practice at Lena Dunn Stadium, but this time we have to go to the YMCA Stadium."
I love that my five year old thinks he plays basketball on a six foot goal in a stadium. Before his first game last year he thought the lights would go out and a spotlight would shine on each player during the starting lineups (they don't even have starting lineup announcements in Biddy Ball). I suppose we set his standards too high by taking him to all the basketball games we did when he was really little!
Zachary loved the Super-Bowl halftime show performance by The Black Eyed Peas. We recorded it on our DVR and the boys randomly watch and get their crazy groove-thing on. Sometimes instead of dancing they play music along with the show. This particular night they danced. After watching it twice and dancing both times:
Z: "Whew! I'm as sweaty as a hot tire!"
Both boys like to help with laundry. They like the sorting process, falling into the piles, loading the washer, and switching clothes from the washer to the dryer. This particular evening, as Zachary walked through the dining room carrying a random pillowcase, I asked Zachary if he'd help me move clothes to the dryer. His response? "No, thanks. I have to practice juggling."
The four of us were having late night snuggle time on the couch. Eli was on Bryan's lap, and Zachary & I were curled up at the other end of the couch. We were trying to get them to fall asleep (so we could watch the second half of IU!), but Zachary was fixated on what was for lunch the next day. He kept coming up with a new option, despite the fact that we'd asked him to stop worrying about it.
Z: "I like to ask questions. If I ask questions I get answers. I like answers about my food because they tell me the answers to my questions. But I don't have any questions about how the Earth spins around because I already know that."
Duck Dynasty has become a favorite show around here. We really don't watch it that much, but when we do we always laugh. Eli started saying "Hey, Jack!" like Uncle Si on the show. Now that has translated to many of his phrases starting with "Hey (insert phrase)" Examples: "Hey, no!" "Hey, mine!" "Hey, bye-bye!"
One evening over supper Zachary was day dreaming. We asked what he was thinking about and he said, "I wonder who my wife will be." He provided a short discussion about who he had in mind (name withheld for privacy). I told him he didn't have to decide now, he could wait until he was a little older. "Maybe wait until second grade?" I asked. He replies, "No, Mommy, I'm ready now. I'll ask her tomorrow." So then I asked if he knew what it meant to have a wife. He says, "Yes, marriage. We get married." I asked if he knew that meant he would leave Mommy and Daddy's house and go live in a house with his wife. He very calmly laid down his fork, folded his hands and leaned forward. His reply was "Yes, Mommy. It will be hard and it will be sad." Then he picked up his fork and ate like nothing serious had just happened. I stopped talking about it then because I was afraid I would cry!!!
***addendum -- He did not ask her the next day. It's been several days and he hasn't mentioned it again.
This one doesn't involve an actual discussion, but things we realized Zachary wasn't saying correctly. All three were said in the same conversation and Bryan and I were having a really hard time controlling our laughter by the end of it.
Z: "maparoni" = macaroni
Z: "apple spider" = apple cider
Z: "bengal" = bagel (this one took us longer to figure out than the others)
Eli must have heard someone use the phrase "You ding-dong!" because he says it all the time now. Except what he says doesn't sound like "ding-dong," it's more like "ping-pong." Sometimes it comes out "ping-pom" which is funnier. Even funnier was the day he yelled it at me with his pacifier in his mouth and it sounded exactly like he called me a tampon. When he saw the startled looks on our faces, he had to yell it again. Of course there were many people around when he did that so who knows what people think we're teaching our toddler!
Saturday, August 17, 2013
Infectious Disease Appointment Update
Yesterday (Friday) Eli had his appointment with the Infectious Disease Nurse Practitioner. Her feeling is that the effusion in his lung cavity has turned into an abscess. That means it's infected. Their plan is for the abscess to be drained and the contents sent for culture and other tests. Eli will restart an antibiotic. We go back to Indianapolis on Tuesday the 20th for it to be drained.
It will be done by an interventional radiologist (IR). Eli will be sedated (he ALWAYS has to have a pediatric cardiac anesthesiologist for any sedation). The IR will use an ultrasound to find the correct placement and then he will drain everything he can. A complication we may be facing is that his abscess may have become an empyema ("em-pie-e-ma"). That's a collection of pus in a body cavity, usually the pleural cavity. Those are very hard and more difficult to "pierce" and drain. We won't know until the IR gets in there.
The procedure is scheduled to be done on an outpatient basis, meaning we should be discharged after he wakes from the anesthetic and shows good vitals, can swallow well and is acting normally. Of course with Eli there's always a chance things can change, so we've been advised to be prepared for an admission. My bags and Eli's are already packed since we didn't know if he'd be admitted or not from Friday!
He will have to restart antibiotic therapy. I assumed he'd have to have another PICC line and we'd administer IV antibiotics to him through that. When Angie NP talked to Dr. Belcher, he said he'd rather Eli didn't have a PICC line at this time. He thinks we can try oral/gtube antibiotics and see how that goes. He doesn't want another opening into Eli that would possibly allow for another site of infection. That's not to say he won't need one in the future, but at this time Dr. Belcher feels it's safer to go this route even with the possibility of a future PICC line (which we're all hoping to avoid). The choice of what type of antibiotic will be made after cultures come back showing what organism we're dealing with. Everyone expects that it will be staph aureus which is what he had after the Fontan.
Draining this may not be the last option for Eli. If he still has fevers and elevated labs, our next option is to look at the wires holding his sternum together. Because he had the abscess on his surgical incision and we know it went down to the bone, there's a chance there are some staph aureus cells are hanging out on those sternal wires and causing problems. To determine if that's the case he will have to have a CT or MRI (which one will be determined when/if the time comes). If that test shows there's infection/inflammation around the sternal wires, Dr. Abraham (cardiac surgeon) will have to open up his incision (again) and remove the sternal wires. Then there would be more antibiotic therapy.
If that doesn't take care of it, we'd have to look at removing Eli's pacemaker. As of now, both Angie and Dr. Belcher feel that the infection isn't in that area, but obviously can't rule it out long term. Any foreign material in Eli's body -- sternal wires, pacemaker, stitches, etc -- could be the cause of his infection. In a way we're lucky because we have some very probable starting points. We know he has an effusion and we know he had a sternal abscess that went to the bone. Those are the two primary spots to treat. Their first choice is to drain the abscess/effusion because that procedure will be easier on him so it's the easiest place to start.
Hopefully that will take care of it and we don't have to worry about opening the incision on his chest again. We know we have to do something though because this long term run of fevers and present infection is starting to take its toll on Eli. He's sleeping more, he vomits more often, and just in general has more low-key play than usual. He definitely still has his wild moments and acts crazy, but he also grabs his blanket and Pablo (stuffed penguin he hasn't let go of since early April) and will curl up to rest more often. He's also asking for more snuggle time from me and Bryan. Of course we love any snuggle moments we get from our boys, but not because they don't feel well.
Specific prayer requests:
- that Eli's procedure goes well on Tuesday and he doesn't require an admission. We know they'll do what is best for him.
- that Eli doesn't get too upset the morning of the procedure because he can't have anything to eat or drink for eight hours prior to it. It's so hard to deny him when he's asking for something and just doesn't understand.
- that Zachary does well with us being away taking care of Eli...again. Zachary has done very well with his first week of kindergarten and we are trying very, very hard to keep things as normal as possible for him.
- prayers for Caleb and Liam. They are fellow heart babies whose families we've grown to love and pray for on a daily basis. Caleb has been inpatient at Riley hospital since November 1 and is patiently & faithfully waiting for his new heart. Liam has been at Cincinnati Children's Hospital since June and is undergoing treatment for Castleman's Disease before he can be put on the transplant list. Both of these families are expecting a new baby soon in addition to all that is going on with their heart babes. Incidentally they're both expecting girls....don't you think "Jessica" is a wonderful baby girl name?!?!
If you're able, please wear your Eli's MVPs tshirt on Tuesday as he undergoes yet another procedure in this CHD journey. Also, we've had a lot of requests for shirts, so we're gathering orders to place. I will take orders throughout the month of August and turn it in early September. Usually we have the order within ten to fourteen days after we place it. If you haven't ordered yet or would like additional shirts, please contact us via email at elismvps@yahoo.com or on Eli's Facebook page by clicking here. Tshirts are $15, hoodies are $25, we have three color choices of each item, and it's $2 more for sizes 2x and up. We have youth and adult sizes available. We're also excited to start another fundraiser for Eli's MVPS that many of you will LOVE! Our friend Tiffany Gilley is a Thirty One consultant and has volunteered her services to raise money for Eli's future expenses. We'll have more info on that soon.
Thank you all for your prayers and support. We'll post updates on Tuesday as best we can, but I don't know what kind of time we'll have. Once again, please assume that no news is good news.
It will be done by an interventional radiologist (IR). Eli will be sedated (he ALWAYS has to have a pediatric cardiac anesthesiologist for any sedation). The IR will use an ultrasound to find the correct placement and then he will drain everything he can. A complication we may be facing is that his abscess may have become an empyema ("em-pie-e-ma"). That's a collection of pus in a body cavity, usually the pleural cavity. Those are very hard and more difficult to "pierce" and drain. We won't know until the IR gets in there.
The procedure is scheduled to be done on an outpatient basis, meaning we should be discharged after he wakes from the anesthetic and shows good vitals, can swallow well and is acting normally. Of course with Eli there's always a chance things can change, so we've been advised to be prepared for an admission. My bags and Eli's are already packed since we didn't know if he'd be admitted or not from Friday!
He will have to restart antibiotic therapy. I assumed he'd have to have another PICC line and we'd administer IV antibiotics to him through that. When Angie NP talked to Dr. Belcher, he said he'd rather Eli didn't have a PICC line at this time. He thinks we can try oral/gtube antibiotics and see how that goes. He doesn't want another opening into Eli that would possibly allow for another site of infection. That's not to say he won't need one in the future, but at this time Dr. Belcher feels it's safer to go this route even with the possibility of a future PICC line (which we're all hoping to avoid). The choice of what type of antibiotic will be made after cultures come back showing what organism we're dealing with. Everyone expects that it will be staph aureus which is what he had after the Fontan.
Draining this may not be the last option for Eli. If he still has fevers and elevated labs, our next option is to look at the wires holding his sternum together. Because he had the abscess on his surgical incision and we know it went down to the bone, there's a chance there are some staph aureus cells are hanging out on those sternal wires and causing problems. To determine if that's the case he will have to have a CT or MRI (which one will be determined when/if the time comes). If that test shows there's infection/inflammation around the sternal wires, Dr. Abraham (cardiac surgeon) will have to open up his incision (again) and remove the sternal wires. Then there would be more antibiotic therapy.
If that doesn't take care of it, we'd have to look at removing Eli's pacemaker. As of now, both Angie and Dr. Belcher feel that the infection isn't in that area, but obviously can't rule it out long term. Any foreign material in Eli's body -- sternal wires, pacemaker, stitches, etc -- could be the cause of his infection. In a way we're lucky because we have some very probable starting points. We know he has an effusion and we know he had a sternal abscess that went to the bone. Those are the two primary spots to treat. Their first choice is to drain the abscess/effusion because that procedure will be easier on him so it's the easiest place to start.
Hopefully that will take care of it and we don't have to worry about opening the incision on his chest again. We know we have to do something though because this long term run of fevers and present infection is starting to take its toll on Eli. He's sleeping more, he vomits more often, and just in general has more low-key play than usual. He definitely still has his wild moments and acts crazy, but he also grabs his blanket and Pablo (stuffed penguin he hasn't let go of since early April) and will curl up to rest more often. He's also asking for more snuggle time from me and Bryan. Of course we love any snuggle moments we get from our boys, but not because they don't feel well.
Specific prayer requests:
- that Eli's procedure goes well on Tuesday and he doesn't require an admission. We know they'll do what is best for him.
- that Eli doesn't get too upset the morning of the procedure because he can't have anything to eat or drink for eight hours prior to it. It's so hard to deny him when he's asking for something and just doesn't understand.
- that Zachary does well with us being away taking care of Eli...again. Zachary has done very well with his first week of kindergarten and we are trying very, very hard to keep things as normal as possible for him.
- prayers for Caleb and Liam. They are fellow heart babies whose families we've grown to love and pray for on a daily basis. Caleb has been inpatient at Riley hospital since November 1 and is patiently & faithfully waiting for his new heart. Liam has been at Cincinnati Children's Hospital since June and is undergoing treatment for Castleman's Disease before he can be put on the transplant list. Both of these families are expecting a new baby soon in addition to all that is going on with their heart babes. Incidentally they're both expecting girls....don't you think "Jessica" is a wonderful baby girl name?!?!
If you're able, please wear your Eli's MVPs tshirt on Tuesday as he undergoes yet another procedure in this CHD journey. Also, we've had a lot of requests for shirts, so we're gathering orders to place. I will take orders throughout the month of August and turn it in early September. Usually we have the order within ten to fourteen days after we place it. If you haven't ordered yet or would like additional shirts, please contact us via email at elismvps@yahoo.com or on Eli's Facebook page by clicking here. Tshirts are $15, hoodies are $25, we have three color choices of each item, and it's $2 more for sizes 2x and up. We have youth and adult sizes available. We're also excited to start another fundraiser for Eli's MVPS that many of you will LOVE! Our friend Tiffany Gilley is a Thirty One consultant and has volunteered her services to raise money for Eli's future expenses. We'll have more info on that soon.
Thank you all for your prayers and support. We'll post updates on Tuesday as best we can, but I don't know what kind of time we'll have. Once again, please assume that no news is good news.
Wednesday, August 7, 2013
Overdue Update
Most of you know Eli was discharged from the hospital back in June. June 4th to be exact, which was seven weeks after the pre op day for his big 'ol Fontan the next day. When he came home from the hospital, we knew he still had a pleural effusion. The pleura is a thin membrane that lines the surface of the lungs and
the inside of the chest wall outside the lungs. In pleural effusions,
fluid accumulates in the space between the layers of pleura. Eli battled with effusions throughout this post op recovery. These are very common after this surgery, so we were prepared for him to have them. We were not prepared for them to still be a nuisance almost four months after surgery.
His first couple weeks at home were pretty uneventful. Well, uneventful as in his breathing wasn't labored, we had no issues with his newly implanted pacemaker, and basically no surprises. What was eventful was adjusting to his new medication regimen, including being on oxygen anytime he was asleep and all the equipment that goes with being on oxygen (and trying to keep oxygen on a two year old), getting back into some sort of a routine, resuming nighttime feeds of a special formula that could only be at room temp for four hours but had to run for nearly twelve (meaning mom or dad was up several times a night to add formula and administer nighttime meds), and adapt to the low fat diet he had to be on for several weeks to fight the effusion. Not to mention, trying to adjust to being at home after spending seven weeks in the hospital. Eli started having night terrors (which NEVER coincided with a formula addition) and he still has them sometimes. He did that after his second open heart surgery and it's lasting longer this time. That makes sense to me because he's older, he remembers more, and he was in the hospital for much longer.
After things started to settle into somewhat of a routine, one night we noticed he had a fever. I don't remember exactly what the temp was that night, but it was well over the temp we were told to call the doctor about. The fever broke after one dose of Tylenol, but it happened again the next night. And the next. He was pretty normal during those days but spiking fevers at night. Of course our family doc was on top of it, but since we had an upcoming cardiac check up, we waited to see what they wanted to do. The cardios told us if it happened again to take him for lab work while his fever was high (and before administering any meds to bring it down). So the next night, I carted Eli off to the hospital about 10pm when he spiked his fever. He had two cultures and other blood work drawn. The cultures came back negative, but some of the other lab work was kind of off.
As oddly as the fever spikes began, they subsided. What we were left with were random, daily low-grade fevers. For the most part they didn't seem to bother Eli much. His oxygen saturation levels were pretty consistent and his play time, appetite, and sleeping weren't changed much (as much as you can be consistent for a post-op two year old!). We began a course of having a chest xray and blood work about every two weeks.
After his last round of xray and blood work, Dr. Abraham (cardiac surgeon) said he wants Eli to be seen by the Infectious Disease doctor who handled the case while Eli was inpatient. If you don't remember, Eli was diagnosed with staph aureus in his blood a few days after surgery. Because of that, he was given a PICC line and about five weeks of antibiotic infusions. We expected to come home with the PICC line and administer the antibiotics ourselves, but since other factors kept him inpatient for so long, he finished the regimen and did not have to come home with the PICC line.
So now we will take him back to Indy next week to see Angie, the nurse practitioner for Dr. Belcher (Inf Disease doc). Angie used to be the NP for the PICU (pediatric ICU) at Peyton Manning Children's Hospital and has been part of Eli's care since the afternoon he was flown there. She was involved in his care for his first two open heart surgeries and we when we went in for Eli's third we were sad to hear she had left her job in the PICU. As fate would have it, she was working for the doctor who was called in to consult and treat Eli. Of course we wish Eli didn't require care from this department, but since he does, it's a huge comfort to know it's someone very, very familiar with his case. We were very comfortable with and liked Dr. Belcher a lot, but Angie had an opening before he did and we are just as comfortable with her. Frankly, she'll report to him anyway, so in this case it's like having two experts involved.
What do we expect from this appointment? I'm not sure. I think we may be past the point of "give it two more weeks and we'll see what the labs show." This is just me guessing. I think he'll probably have another round of antibiotic treatment. That itself doesn't bother me. What I'm worried about is how it would be administered. If it's an oral med (which we would put through his Gtube) that would be manageable. If it has to be intravenously administered (into the bloodstream) that means he'll have to have a PICC line again. That would be, at minimum, an outpatient procedure where he is sedated and they surgically place the line. If he has that done, I don't know if they would keep him overnight or longer to make sure it's working before sending him home on antibiotic therapy. Then there's the whole issue of having a two year old with a direct line deep into his body requiring special care. Again, this is me thinking ahead (good idea? We'll never know!). You may be wondering why we would actually do anything if he's acting okay. Well, there's a chance ID (infectious disease) will "just watch" a while longer. What we have to remember is that Eli had a very serious blood infection and sternal incision abscess recently. Is that totally cleared up? His sweet little heart had many incisions during his Fontan and mitral valve repair, the infection in his bloodstream could easily get into those incisions and cause major problems. He also has a pacemaker. If his body is reacting to the presence of the pacemaker, it may have to come out.
There's a lot of what ifs we have to consider while trying to not get stressed about it until we have to! It's really hard not to think about how serious this could get. Life has been tough since the Fontan. Obviously the length of his hospitalization was not what we expected. Once we got home, things did not get any easier. We would do anything for either of our boys, but it's still hard operating on very little sleep, dealing with insurance issues and case managers, keeping up with all the medications, and still trying to deal with all the normal, daily life things that need done like laundry, dishes, grocery shopping, meals, and spending time with the boys that doesn't revolve around medical issues.
Someone was surprised recently when I mentioned I hadn't been able to work since before Eli's surgery. She asked if it was because I had to give Eli medication throughout the day. I told her it wasn't hard to give the medications, frankly a monkey can do that. In all honesty, Eli pushes a lot of the meds through the tube himself. Zachary has made it his job to hang the bag and enter the settings on Eli's feeding pump each night. The hard part is keeping track of what needs refilled when, keeping all his supplies stocked appropriately, keeping enough oxygen tanks on hand along with tubing and monitor sensors, and making sure we have the right formula, bags, tubing, extra buttons, and cleaning supplies stocked for his feeding tube. Thankfully all that's through one pharmacy, and they honestly make it as easy as they can for us, but I'm still on the phone with at least one department once a week (if not more) to keep up. That's not to mention scheduling his appointments, going to his appointments, going for his different tests, scheduling and being present to get the deliveries from the pharmacy, and calling status reports to doctors. I haven't even mentioned there are two kids to take care of in the midst of all that. In addition I had a serious health issue that couldn't be ignored about a month ago. All of that and more while trying to do those daily chores, all the extra medical-related stuff, and, more importantly, trying to make our family feel like a family again after a really rough, some could even say disappointing four months. So, no, I haven't had the opportunity to "work" yet. I haven't had more than two hours off from this job since the end of March. A paycheck would be nice but it would be hard to beat the precious slobber and sneaky tickles I get at this job!
While I'm on my emotional high horse, I'm giving fair warning now to the next person who says anything about the "convenience" it is that I'm a nurse and have a child with such medical issues. It is not a convenience and I'm tired of people assuming I'm automatically equipped to deal with this because I passed a test that gives me the privilege to sign RN after my name. There is no class that teaches nurses to change tubes in your own child's body, to explain to your other child that the baby in the magazine without tubes is "normal," to wonder if there's anything you could have done differently during pregnancy to save your child and family from this, to hold your screaming child through yet another blood draw or dressing change, to hand them over to the medical team who literally have his life in their hands, or to watch your child suffer surgery after surgery after procedure after blood draw after surgery in hopes of saving him from death. It also infuriates me for all the wonderful heart parents (my husband especially) who aren't nurses and their heart warrior is doing well despite their lack of a nursing degree.
I don't mean to give the impression that we have a crappy life and I'm unhappy or anything. Yep, it's been a hard four months and counting. Life is hard, but compared to what? Not having Eli? Unthinkable. These are the boys we've got, the life we've got, and the life we're looking forward to living. There's not much we'd change...probably just a little more sleep (then maybe I could safely work a shift at the hospital?!?!).
We have had fun in the past few weeks too. If you read the last post you know we went to Holiday World last week. We thought about not taking Eli, but decided it had to be a family vacation and we are a family of four. It's another example of trying to balance keeping him healthy while trying to be normal. Bryan and I have had two dates and also got to attend his high school reunion. While there, I got to talk with a few of the other "Wives of the WHS Class of '93." One of them I've known since my high school days. She very nicely asked me if I was always so upbeat. Her question really shocked me because I don't feel like I am all the time. I usually feel like I'm a disorganized mess who barely keeps my head above water. She said that my attitude always seemed positive even when things weren't going well. It made me realize that I do have a pretty good attitude. I hope that doesn't sound conceited. I just mean that I've learned I cannot let this get to me all the time. We're learning to handle it the best way we can. I have my moments. I have lots of moments. One of them is illustrated in a rant a couple paragraphs above this. But I have other moments, positive moments that I wouldn't trade for anything.
The latest on Eli? He's nuts. Seriously, the kid is crazy. He's a lot of fun, he's silly, he's affectionate, he's moody, he's clingy, he eats like a horse, he barely eats at all, he adores his brother, he hits his brother, etc, etc, etc. He's talking a lot more now. He can name most of the Cincinnati Reds players by sight (Bryan's doing). He's starting to get into dinosaur play and even proudly announces that his favorite is T Rex (Zachary's doing). He's still pretty wary of strangers because he can't let himself trust a new person too soon. I don't think anybody would be surprised to hear that after all he's had to go through! Eli is learning a lot from Zachary and the two of them are constantly imitating each other. If Zachary is comfortable with someone, Eli opens up a little more. When it's just the four of us, Eli has us laughing all the time with his antics. He'll definitely be a class clown someday.
In other news, Zachary is starting kindergarten Friday. I am so excited for him because he's getting excited. I'm also very sad. I cannot believe my baby is going to be away from me for that long five days a week and I'm supposed to be okay with it. We were just separated for seven weeks. I feel like we just got back some semblance of family life and now a large part of it is changing again. Yes, I know that's selfish, but it's how I feel and I do think I'm justified to feel that way. I have given serious thought to homeschooling. We won't be doing that for two major reasons: 1) Zachary needs the interaction with other kids his age and 2) I don't want to homeschool! I am many things, but I am not an educational teacher. Can you imagine the backward, socially inept fools graduating from my classroom? I know, I know: Teaching starts at home. I get that and think we're doing a good job so far, but we're at the point that I'm looking forward to using his teacher, homework, schoolbooks, and newfound knowledge to guide us through the next levels of his education. I am not against those who homeschool. I think it's an incredible thing to be able to do that for your child. Who knows what the future holds? It may be something we have to consider for Eli someday. Or Zachary. Until then, off to school Z goes! Be on the lookout for first day of school pics.
Specific Prayer Requests:
- that we're able to accept and deal with whatever we need to do about Eli's continued effusion, fevers, and lab work. That this appointment with infectious disease goes well and they have an "easy fix" for Eli
- for Zachary to have a wonderful experience at school. Yes, he had great experiences at preschool for two years with very caring people, but now he's entering a new school with an all day, five days a week schedule. This will set the tone for his next thirteen plus years of education and I really want it to be positive for him
- for Bryan and me as we continue to strengthen our family, our marriage, and as individuals
As always, thank you so much for the kindness, caring and prayers.
His first couple weeks at home were pretty uneventful. Well, uneventful as in his breathing wasn't labored, we had no issues with his newly implanted pacemaker, and basically no surprises. What was eventful was adjusting to his new medication regimen, including being on oxygen anytime he was asleep and all the equipment that goes with being on oxygen (and trying to keep oxygen on a two year old), getting back into some sort of a routine, resuming nighttime feeds of a special formula that could only be at room temp for four hours but had to run for nearly twelve (meaning mom or dad was up several times a night to add formula and administer nighttime meds), and adapt to the low fat diet he had to be on for several weeks to fight the effusion. Not to mention, trying to adjust to being at home after spending seven weeks in the hospital. Eli started having night terrors (which NEVER coincided with a formula addition) and he still has them sometimes. He did that after his second open heart surgery and it's lasting longer this time. That makes sense to me because he's older, he remembers more, and he was in the hospital for much longer.
After things started to settle into somewhat of a routine, one night we noticed he had a fever. I don't remember exactly what the temp was that night, but it was well over the temp we were told to call the doctor about. The fever broke after one dose of Tylenol, but it happened again the next night. And the next. He was pretty normal during those days but spiking fevers at night. Of course our family doc was on top of it, but since we had an upcoming cardiac check up, we waited to see what they wanted to do. The cardios told us if it happened again to take him for lab work while his fever was high (and before administering any meds to bring it down). So the next night, I carted Eli off to the hospital about 10pm when he spiked his fever. He had two cultures and other blood work drawn. The cultures came back negative, but some of the other lab work was kind of off.
As oddly as the fever spikes began, they subsided. What we were left with were random, daily low-grade fevers. For the most part they didn't seem to bother Eli much. His oxygen saturation levels were pretty consistent and his play time, appetite, and sleeping weren't changed much (as much as you can be consistent for a post-op two year old!). We began a course of having a chest xray and blood work about every two weeks.
After his last round of xray and blood work, Dr. Abraham (cardiac surgeon) said he wants Eli to be seen by the Infectious Disease doctor who handled the case while Eli was inpatient. If you don't remember, Eli was diagnosed with staph aureus in his blood a few days after surgery. Because of that, he was given a PICC line and about five weeks of antibiotic infusions. We expected to come home with the PICC line and administer the antibiotics ourselves, but since other factors kept him inpatient for so long, he finished the regimen and did not have to come home with the PICC line.
So now we will take him back to Indy next week to see Angie, the nurse practitioner for Dr. Belcher (Inf Disease doc). Angie used to be the NP for the PICU (pediatric ICU) at Peyton Manning Children's Hospital and has been part of Eli's care since the afternoon he was flown there. She was involved in his care for his first two open heart surgeries and we when we went in for Eli's third we were sad to hear she had left her job in the PICU. As fate would have it, she was working for the doctor who was called in to consult and treat Eli. Of course we wish Eli didn't require care from this department, but since he does, it's a huge comfort to know it's someone very, very familiar with his case. We were very comfortable with and liked Dr. Belcher a lot, but Angie had an opening before he did and we are just as comfortable with her. Frankly, she'll report to him anyway, so in this case it's like having two experts involved.
What do we expect from this appointment? I'm not sure. I think we may be past the point of "give it two more weeks and we'll see what the labs show." This is just me guessing. I think he'll probably have another round of antibiotic treatment. That itself doesn't bother me. What I'm worried about is how it would be administered. If it's an oral med (which we would put through his Gtube) that would be manageable. If it has to be intravenously administered (into the bloodstream) that means he'll have to have a PICC line again. That would be, at minimum, an outpatient procedure where he is sedated and they surgically place the line. If he has that done, I don't know if they would keep him overnight or longer to make sure it's working before sending him home on antibiotic therapy. Then there's the whole issue of having a two year old with a direct line deep into his body requiring special care. Again, this is me thinking ahead (good idea? We'll never know!). You may be wondering why we would actually do anything if he's acting okay. Well, there's a chance ID (infectious disease) will "just watch" a while longer. What we have to remember is that Eli had a very serious blood infection and sternal incision abscess recently. Is that totally cleared up? His sweet little heart had many incisions during his Fontan and mitral valve repair, the infection in his bloodstream could easily get into those incisions and cause major problems. He also has a pacemaker. If his body is reacting to the presence of the pacemaker, it may have to come out.
There's a lot of what ifs we have to consider while trying to not get stressed about it until we have to! It's really hard not to think about how serious this could get. Life has been tough since the Fontan. Obviously the length of his hospitalization was not what we expected. Once we got home, things did not get any easier. We would do anything for either of our boys, but it's still hard operating on very little sleep, dealing with insurance issues and case managers, keeping up with all the medications, and still trying to deal with all the normal, daily life things that need done like laundry, dishes, grocery shopping, meals, and spending time with the boys that doesn't revolve around medical issues.
Someone was surprised recently when I mentioned I hadn't been able to work since before Eli's surgery. She asked if it was because I had to give Eli medication throughout the day. I told her it wasn't hard to give the medications, frankly a monkey can do that. In all honesty, Eli pushes a lot of the meds through the tube himself. Zachary has made it his job to hang the bag and enter the settings on Eli's feeding pump each night. The hard part is keeping track of what needs refilled when, keeping all his supplies stocked appropriately, keeping enough oxygen tanks on hand along with tubing and monitor sensors, and making sure we have the right formula, bags, tubing, extra buttons, and cleaning supplies stocked for his feeding tube. Thankfully all that's through one pharmacy, and they honestly make it as easy as they can for us, but I'm still on the phone with at least one department once a week (if not more) to keep up. That's not to mention scheduling his appointments, going to his appointments, going for his different tests, scheduling and being present to get the deliveries from the pharmacy, and calling status reports to doctors. I haven't even mentioned there are two kids to take care of in the midst of all that. In addition I had a serious health issue that couldn't be ignored about a month ago. All of that and more while trying to do those daily chores, all the extra medical-related stuff, and, more importantly, trying to make our family feel like a family again after a really rough, some could even say disappointing four months. So, no, I haven't had the opportunity to "work" yet. I haven't had more than two hours off from this job since the end of March. A paycheck would be nice but it would be hard to beat the precious slobber and sneaky tickles I get at this job!
While I'm on my emotional high horse, I'm giving fair warning now to the next person who says anything about the "convenience" it is that I'm a nurse and have a child with such medical issues. It is not a convenience and I'm tired of people assuming I'm automatically equipped to deal with this because I passed a test that gives me the privilege to sign RN after my name. There is no class that teaches nurses to change tubes in your own child's body, to explain to your other child that the baby in the magazine without tubes is "normal," to wonder if there's anything you could have done differently during pregnancy to save your child and family from this, to hold your screaming child through yet another blood draw or dressing change, to hand them over to the medical team who literally have his life in their hands, or to watch your child suffer surgery after surgery after procedure after blood draw after surgery in hopes of saving him from death. It also infuriates me for all the wonderful heart parents (my husband especially) who aren't nurses and their heart warrior is doing well despite their lack of a nursing degree.
I don't mean to give the impression that we have a crappy life and I'm unhappy or anything. Yep, it's been a hard four months and counting. Life is hard, but compared to what? Not having Eli? Unthinkable. These are the boys we've got, the life we've got, and the life we're looking forward to living. There's not much we'd change...probably just a little more sleep (then maybe I could safely work a shift at the hospital?!?!).
We have had fun in the past few weeks too. If you read the last post you know we went to Holiday World last week. We thought about not taking Eli, but decided it had to be a family vacation and we are a family of four. It's another example of trying to balance keeping him healthy while trying to be normal. Bryan and I have had two dates and also got to attend his high school reunion. While there, I got to talk with a few of the other "Wives of the WHS Class of '93." One of them I've known since my high school days. She very nicely asked me if I was always so upbeat. Her question really shocked me because I don't feel like I am all the time. I usually feel like I'm a disorganized mess who barely keeps my head above water. She said that my attitude always seemed positive even when things weren't going well. It made me realize that I do have a pretty good attitude. I hope that doesn't sound conceited. I just mean that I've learned I cannot let this get to me all the time. We're learning to handle it the best way we can. I have my moments. I have lots of moments. One of them is illustrated in a rant a couple paragraphs above this. But I have other moments, positive moments that I wouldn't trade for anything.
The latest on Eli? He's nuts. Seriously, the kid is crazy. He's a lot of fun, he's silly, he's affectionate, he's moody, he's clingy, he eats like a horse, he barely eats at all, he adores his brother, he hits his brother, etc, etc, etc. He's talking a lot more now. He can name most of the Cincinnati Reds players by sight (Bryan's doing). He's starting to get into dinosaur play and even proudly announces that his favorite is T Rex (Zachary's doing). He's still pretty wary of strangers because he can't let himself trust a new person too soon. I don't think anybody would be surprised to hear that after all he's had to go through! Eli is learning a lot from Zachary and the two of them are constantly imitating each other. If Zachary is comfortable with someone, Eli opens up a little more. When it's just the four of us, Eli has us laughing all the time with his antics. He'll definitely be a class clown someday.
 |
| We enjoyed some of the Fourth of July festivities offered at our local park. Both boys have had haircuts since this picture, but this photo shows both of them smiling at the same time with eyes open and no one is hitting or roaring like a dinosaur. These are our precious babes!!!! |
In other news, Zachary is starting kindergarten Friday. I am so excited for him because he's getting excited. I'm also very sad. I cannot believe my baby is going to be away from me for that long five days a week and I'm supposed to be okay with it. We were just separated for seven weeks. I feel like we just got back some semblance of family life and now a large part of it is changing again. Yes, I know that's selfish, but it's how I feel and I do think I'm justified to feel that way. I have given serious thought to homeschooling. We won't be doing that for two major reasons: 1) Zachary needs the interaction with other kids his age and 2) I don't want to homeschool! I am many things, but I am not an educational teacher. Can you imagine the backward, socially inept fools graduating from my classroom? I know, I know: Teaching starts at home. I get that and think we're doing a good job so far, but we're at the point that I'm looking forward to using his teacher, homework, schoolbooks, and newfound knowledge to guide us through the next levels of his education. I am not against those who homeschool. I think it's an incredible thing to be able to do that for your child. Who knows what the future holds? It may be something we have to consider for Eli someday. Or Zachary. Until then, off to school Z goes! Be on the lookout for first day of school pics.
Specific Prayer Requests:
- that we're able to accept and deal with whatever we need to do about Eli's continued effusion, fevers, and lab work. That this appointment with infectious disease goes well and they have an "easy fix" for Eli
- for Zachary to have a wonderful experience at school. Yes, he had great experiences at preschool for two years with very caring people, but now he's entering a new school with an all day, five days a week schedule. This will set the tone for his next thirteen plus years of education and I really want it to be positive for him
- for Bryan and me as we continue to strengthen our family, our marriage, and as individuals
As always, thank you so much for the kindness, caring and prayers.
Saturday, August 3, 2013
Veale Vacay, 2013
Bryan took the past week off work. The four of us really needed to make some sort of an attempt at a family vacation. With Zachary about to start kindergarten we had to make it happen now. And we did. Of course we still have some concerns with Eli's health (I'll touch more on that in another blog sometime), but we knew we needed some Family of Four time.
Right now it's very late and I'm tired. I'll blog about the early part of our vacation in another post, this one is about today's adventure: Holiday World.
The Veale Family Fun Facts About Holiday World:
- the time spent from leaving our driveway to parking at HW is exactly thee length of Sid the Science Kid's movie
- we found out today that I am NOT allergic to bee stings (but I gave my sis-in-law a quick overview of my medical history complete with blood type just in case I was)
- you can have a lot of fun in the waterpark without riding anything....the big slides had lines that were too long for our liking so we stuck to the wave pool and the slides in the kiddie/wading pool. After a while Zachary even started going down them by himself instead of on the lap of an adult! Eli and Bryan went down a couple, but Eli was not happy (that's the mild version of his emotions about the slide)
- after much prodding, pleading, and a weak attempt at tough love, Eli became the king of the wading pool...up to 3" deep
- Zachary has some great dance moves he can bust out at any random moment. In the water, waiting in line, or even as we're walking to our next destination. Sometimes Eli would imitate the moves for added enjoyment. However, the dance parties only lasted a few seconds with the exception of one several minutes' long display at the end of the day
- my mom is a better shot than I am. One of the rides is equipped with laser guns. The goal was to shoot the targets and a hidden turkey (we were in the Thanksgiving area of HW) would pop out. Each target/turkey was worth 30 points. We had two trips through and my combined score was a mere 450 to her 500.
- not that this should surprise anyone, but Eli does enjoy things he initially protests. At first he didn't want to ride anything, but after some persuasion he rode a few things and actually had fun. As long as it wasn't a slide. Or a kiddie canoe. Or something that keeps him more than two feet from one of us.
- Bryan and I may not have/make time for regular exercise, but days like today (pulling a wagon with 100lbs of children plus another 20 or so pounds of necessities) up and down the hills and paths of HW is a good workout
- August 2 (only one week before my Z's first day of kindergarten) will now be known as "Jessica's first tan lines of 2013"
- the pedals in the old time cars are REALLY hard to keep pushed down to power the car. An incidental revelation on this ride was confirmation that five year olds definitely do not have the agility/power/reasoning to successfully drive a vehicle. No, that doesn't surprise us, it's just that today's experience with Zachary behind the wheel (while I tried to keep that blasted pedal pushed to the floor) leaves me with the need for some Tylenol. Or a hot tub. Or a masseuse.
- Eli can fall asleep within 10 minutes of getting into the van for our ride home....Zachary was out very soon after Eli was.
- we listened to at least 15 more minutes of Sid the Science Kid before my mom pointed out that the only ones awake to hear/watch it were well over 35 years old.
We had a great time and I'm so glad we took the boys. It was the first time for each of the boys. I thought about getting a waterproof camera to document the day, but decided against it. My reasoning was that I wanted to experience the fun in real time and not be behind a lens all day. That and the fact that I didn't think about getting one until midnight last night and I was not going to buy one then.
Upcoming blog posts will be about the earlier days of our vacation and an update on Eli's health. Thanks for reading and caring!
Right now it's very late and I'm tired. I'll blog about the early part of our vacation in another post, this one is about today's adventure: Holiday World.
The Veale Family Fun Facts About Holiday World:
- the time spent from leaving our driveway to parking at HW is exactly thee length of Sid the Science Kid's movie
- we found out today that I am NOT allergic to bee stings (but I gave my sis-in-law a quick overview of my medical history complete with blood type just in case I was)
- you can have a lot of fun in the waterpark without riding anything....the big slides had lines that were too long for our liking so we stuck to the wave pool and the slides in the kiddie/wading pool. After a while Zachary even started going down them by himself instead of on the lap of an adult! Eli and Bryan went down a couple, but Eli was not happy (that's the mild version of his emotions about the slide)
- after much prodding, pleading, and a weak attempt at tough love, Eli became the king of the wading pool...up to 3" deep
- Zachary has some great dance moves he can bust out at any random moment. In the water, waiting in line, or even as we're walking to our next destination. Sometimes Eli would imitate the moves for added enjoyment. However, the dance parties only lasted a few seconds with the exception of one several minutes' long display at the end of the day
- my mom is a better shot than I am. One of the rides is equipped with laser guns. The goal was to shoot the targets and a hidden turkey (we were in the Thanksgiving area of HW) would pop out. Each target/turkey was worth 30 points. We had two trips through and my combined score was a mere 450 to her 500.
- not that this should surprise anyone, but Eli does enjoy things he initially protests. At first he didn't want to ride anything, but after some persuasion he rode a few things and actually had fun. As long as it wasn't a slide. Or a kiddie canoe. Or something that keeps him more than two feet from one of us.
- Bryan and I may not have/make time for regular exercise, but days like today (pulling a wagon with 100lbs of children plus another 20 or so pounds of necessities) up and down the hills and paths of HW is a good workout
- August 2 (only one week before my Z's first day of kindergarten) will now be known as "Jessica's first tan lines of 2013"
- the pedals in the old time cars are REALLY hard to keep pushed down to power the car. An incidental revelation on this ride was confirmation that five year olds definitely do not have the agility/power/reasoning to successfully drive a vehicle. No, that doesn't surprise us, it's just that today's experience with Zachary behind the wheel (while I tried to keep that blasted pedal pushed to the floor) leaves me with the need for some Tylenol. Or a hot tub. Or a masseuse.
- Eli can fall asleep within 10 minutes of getting into the van for our ride home....Zachary was out very soon after Eli was.
- we listened to at least 15 more minutes of Sid the Science Kid before my mom pointed out that the only ones awake to hear/watch it were well over 35 years old.
We had a great time and I'm so glad we took the boys. It was the first time for each of the boys. I thought about getting a waterproof camera to document the day, but decided against it. My reasoning was that I wanted to experience the fun in real time and not be behind a lens all day. That and the fact that I didn't think about getting one until midnight last night and I was not going to buy one then.
Upcoming blog posts will be about the earlier days of our vacation and an update on Eli's health. Thanks for reading and caring!
Tuesday, July 2, 2013
Feverish Update
Eli has still been running nighttime fevers and some low grade fevers during the day. Our last post explained why we took him to the hospital for blood work last Thursday night. On Friday we found out his CBC was normal, including a normal white blood cell count. One of his cardiologists called that afternoon to get another update. We were still waiting on some of the other blood work to come back, but he felt safe saying it's probably a virus and just has to run its course. He wanted us to call back on Monday to update them how the weekend went. The fevers continued through the weekend, but Eli was also playing and being his normal self most of the time. His appetite was even starting to increase.
We called Indy with an update on Monday morning. Later that afternoon, Sara called. She's Dr. Abraham's (surgeon) nurse practitioner. She wanted to hear for herself what was going on with Eli. She said she'd call if they wanted to do anything different. We later got a call from Dr. Amy's office saying that Dr. Amy & Dr. Steinberg (Indy cardiologist I spoke with on Friday & pacemaker guru of the group) had spoken with each other. One of Eli's blood tests (C-Reactive Protein) came back elevated (52). That test is an indicator of an inflammatory reaction taking place within the body. The doctors want to repeat that lab this coming Friday. Also, because he was still running an occasional low grade fever accompanied by the nighttime spikes, Dr. Amy wanted to see him in the office today to evaluate him again.
The doctor appointment went well. Eli has no obvious signs of infection (no red throat or infected ears, incisions look good, etc). His lungs sound good, but we went ahead with a chest x-ray because he's tricked us before with respiratory issues despite sounding clear. A quick glance at the image didn't show anything significant although we don't have the radiologist's interpretation yet. Eli was running a low fever again through the day (99.6) which is normally not concerning except it's accompanied by the late evening temperature spikes.
Our best guess at this point is that he has an inflammatory response occurring due to the surgeries he's had since mid-April. To recount he's had:
- the Fontan which also included mitral valve repair
- pacemaker placement (this was done at the same time as the Fontan and MV repair, but it is its own incision)
- multiple lines and drains due to the Fontan (two JP drains, an arterial line, and a central line)
- a staph infection in his blood which required removal of the central line and placement of a PICC line
- two pigtail chest tubes
- an abscess on his sternal incision which resulted in another trip to the OR and a wound vac for twelve days, including seven dressing changes
- a third trip to the OR for the diaphragm plication (to lower the right side of his diaphragm as it was creeping up and crowing his lung) which is another incision on his little chest
- another JP drain after the diaphragm plication
Yes, it would make total sense if he has an inflammatory process still going on! We hope that's all it is. That or a viral bug that is just about done with him!
Specific Prayer Requests:
- prayers of thankfulness that Eli is actually feeling pretty good through most of this
- prayers that his fevers stop and his next CRP level decreases (indicating a lessening of the inflammatory response)
- prayers that the four of us are able to take some type of "vacation" prior to Zachary starting school in a few weeks
- prayers for health and strength for some family and friends....there have been some things happen to some loved ones (info that is not ours to pass along and really should remain private anyway) and they could use some extra support!
Thank you for the prayers. Thanks for caring and taking the time to read. We hope each of you remember the true beauty of the Fourth of July holiday and that it's not just about cookouts and fireworks. Stay safe everyone and remember to cherish Every Little Beat...
We called Indy with an update on Monday morning. Later that afternoon, Sara called. She's Dr. Abraham's (surgeon) nurse practitioner. She wanted to hear for herself what was going on with Eli. She said she'd call if they wanted to do anything different. We later got a call from Dr. Amy's office saying that Dr. Amy & Dr. Steinberg (Indy cardiologist I spoke with on Friday & pacemaker guru of the group) had spoken with each other. One of Eli's blood tests (C-Reactive Protein) came back elevated (52). That test is an indicator of an inflammatory reaction taking place within the body. The doctors want to repeat that lab this coming Friday. Also, because he was still running an occasional low grade fever accompanied by the nighttime spikes, Dr. Amy wanted to see him in the office today to evaluate him again.
The doctor appointment went well. Eli has no obvious signs of infection (no red throat or infected ears, incisions look good, etc). His lungs sound good, but we went ahead with a chest x-ray because he's tricked us before with respiratory issues despite sounding clear. A quick glance at the image didn't show anything significant although we don't have the radiologist's interpretation yet. Eli was running a low fever again through the day (99.6) which is normally not concerning except it's accompanied by the late evening temperature spikes.
Our best guess at this point is that he has an inflammatory response occurring due to the surgeries he's had since mid-April. To recount he's had:
- the Fontan which also included mitral valve repair
- pacemaker placement (this was done at the same time as the Fontan and MV repair, but it is its own incision)
- multiple lines and drains due to the Fontan (two JP drains, an arterial line, and a central line)
- a staph infection in his blood which required removal of the central line and placement of a PICC line
- two pigtail chest tubes
- an abscess on his sternal incision which resulted in another trip to the OR and a wound vac for twelve days, including seven dressing changes
- a third trip to the OR for the diaphragm plication (to lower the right side of his diaphragm as it was creeping up and crowing his lung) which is another incision on his little chest
- another JP drain after the diaphragm plication
Yes, it would make total sense if he has an inflammatory process still going on! We hope that's all it is. That or a viral bug that is just about done with him!
Specific Prayer Requests:
- prayers of thankfulness that Eli is actually feeling pretty good through most of this
- prayers that his fevers stop and his next CRP level decreases (indicating a lessening of the inflammatory response)
- prayers that the four of us are able to take some type of "vacation" prior to Zachary starting school in a few weeks
- prayers for health and strength for some family and friends....there have been some things happen to some loved ones (info that is not ours to pass along and really should remain private anyway) and they could use some extra support!
Thank you for the prayers. Thanks for caring and taking the time to read. We hope each of you remember the true beauty of the Fourth of July holiday and that it's not just about cookouts and fireworks. Stay safe everyone and remember to cherish Every Little Beat...
Friday, June 28, 2013
Fever Time :(
I just got Eli to bed. It's almost midnight and I just got the monkey in his crib. Why so late? Well, he's running a fever. This has been happening off and on in the evenings since Sunday night. Today he ran a low grade fever all day and then spiked to 102 after 9:30pm. He did wait until after we saw which NBA team drafted Cody Zeller. He & Zachary were very excited for the draft and were yelling "Victor!" (Victor Oladipo, IU player drafted #2 overall) and "Cody!" Well, that's what Z was yelling. Eli's sounded more like "Vicar!" and "Tody!" It was so neat to see IU guys drafted #2 & #4. Good guys too.
Anyway, back to Eli. He's had these temperature spikes in the late evening since Sunday. One dose of Tylenol had taken care of it, but why was he getting them in the first place? We really didn't worry the first night, but when it kept happening we knew something was up. We still don't know what. On Tuesday (06/25) he had a scheduled check up with the cardiology team in Indy. I say team because it was with several people. Luckily they're all in the same office so it was them who had to take turns seeing Eli, not us rushing around to accommodate them! We saw Dr. Parikh (Eli's main cardiologist in Indy), Dr. Steinberg (cardiologist in charge of the pacemaker), and Sara (surgical nurse practitioner). Overall, the appointment went well. They're happy with how he's doing. He'd even gained a little weight since discharge which made me happy because he doesn't eat as much at home as he did in the hospital. He eats, but he's a busy two year old who has much better things to do than sit down and eat more than three bites at a time. We basically offer him food every 20-30 minutes all day, every day.
Eli had an echo, EKG and his pacemaker was interrogated. That means they hold a device over the area of his body that has the pacer and it feeds info to a machine. They use the machine and that device to check and change settings on the pacemaker as needed. Eli has a dual lead pacemaker which means there's a lead in his atria (top chamber of his heart) and in his ventricle (lower chamber of his heart). Yes, I said chamber for each because Eli's heart is soooo much not like ours that he basically now has one atria instead of two and one ventricle instead of two. Dr. Steinberg has said all along that Eli only required atrial pacing, but since he was in there and you never know what a single ventricle kid will need in the future, he went ahead and placed a dual lead pacer. Now the lead going to the ventricle isn't working. That's really no big deal because Eli wasn't using it anyway, but it is kind of annoying. Dr. Steinberg said we'll just remove it or change it when it's time to change the battery or the atrial lead. Good news is that the important lead, the atrial lead, is working very well. The only thing he changed was Eli's rate. When Eli is awake he's paced at 80 beats per minute, when he's asleep it's 70 beats per minute. If he's really active or upset, he can go higher. The pacer doesn't stop his heart rate from rising because its purpose for Eli is to keep his heart rate up. Prior to the pacer he was in a junctional rhythm which resulted in a very low heart rate for him.
The echo and EKG were good. Eli wasn't thrilled about the echo, but he's so used to these things now that he doesn't actually fight us. He'll scream and reach for us, but he doesn't fight the procedure. Eventually he settles down and doesn't scream, although he doesn't act happy until it's over and he'll put his hands out, shrug a shoulder, cock his head to the side and say "All done?" It's very cute. The echo showed that he does still have some pleural effusion present, but it isn't any worse than before.
When we mentioned the fevers to the cardio team, they weren't too worried. At the time he'd only had two nights of fevers so they said if it continued to get two blood cultures and a couple other blood tests. Getting the tests isn't such a big deal. The part that was going to be tricky was they wanted them while he had the fevers, before any meds were given. He wasn't feverish until the late evening, so that meant we would have to go to the hospital after hours, get out outpatient admission done through the ER (not an ER visit though!), and then go to the lab.
So, that's what we did tonight. The past couple nights he had very low grade temps. Then he had a low grade fever all day today which spiked to 102 this evening. I went to change and gather our blood work order and insurance info. In the meantime he fell asleep on Bryan's lap. Hoping the fever had broken didn't work because I took the temp again and it was the same. So he was woken up as I lifted him off his comfy spot on Daddy's lap and took him to the hospital. We didn't have to wait too long, but from start to finish the whole thing took a little over an hour. Because they needed two blood cultures from him, he had to be stuck twice. Again, he screamed the whole time, but didn't fight it. I don't blame him for screaming. He wasn't feeling well, couldn't have any medicine for it, and it was waaayyy past bedtime in a not so fun place. Luckily, the guy who drew the blood only had to stick him once on each arm. He was very good and I was incredibly grateful for that.
The only other change we're making to Eli's routine is to resume a regular diet (instead of low fat diet) as of Monday July 1. That means instead of this special formula he's getting at night, we'll go back to cans of PediaSure for the nighttime feeds and he'll drink 2% or whole milk instead of skim. We also don't have to watch his diet (any more than a reasonable parent should anyway!). After being on a regular diet for a week, he'll get a chest xray and some blood work. That will show how his body is tolerating the fats well and if it changes the effusion in any negative way.
Tonight's update sounds pretty depressing, but honestly he is doing well. He plays a lot, he's nuts, he runs races (by himself or with us), he plays drums, he doesn't turn blue and he's pretty happy most of the time. He's been a little fussier with these fevers, but who isn't?
While I have your attention, I'd like to ask for prayers for a new heart warrior. Liam was recently diagnosed with cardiomyopathy. His mom was one of our nurses during Eli's seven week stay, and Eli was very comfortable with her (that was a HUGE deal!). The day Eli was discharged, Liam was taken to the ER for what they thought were asthma issues. An incidental finding that his liver was lower than normal lead to a chest xray. That revealed an enlarged heart, which lead to an echo, which lead to the diagnosis that their precious 3 1/2 year old son will need a heart transplant. A few days later, Liam had a cardiac MRI to determine more details about his heart. In the recovery room, he went into cardiac arrest. They were able to bring him back and put him on ECMO (heart & lung bypass machine that does the work of those organs allowing Liam's to rest). He was transferred to Cincinnati Children's Hospital a few days later. He is now off ECMO which is wonderful. Things are still very serious for him as the medical teams continue to determine what damage has been done and how long before he will need a transplant.
All this has come as a shock to his parents who just thought their son had asthma complications. I completely remember the overwhelming feelings of shock, disbelief, numbness and grief that we went through when Eli was diagnosed. These parents have been very strong, but need more prayers for them and for Liam. I know they're staying in the nearby Ronald McDonald house and their family & friends in Indy are working on fundraisers for them as they begin this journey they never expected to take. Please keep them in your prayers.
Specific Prayer Requests:
- for us to find out what is causing Eli's fevers
- for the perfect heart to be donated to Caleb
- for Liam to continue to do well and for his family to deal with these life-changing events
- for Eli to do well when his diet is changed
Thank you all for the prayers!
Anyway, back to Eli. He's had these temperature spikes in the late evening since Sunday. One dose of Tylenol had taken care of it, but why was he getting them in the first place? We really didn't worry the first night, but when it kept happening we knew something was up. We still don't know what. On Tuesday (06/25) he had a scheduled check up with the cardiology team in Indy. I say team because it was with several people. Luckily they're all in the same office so it was them who had to take turns seeing Eli, not us rushing around to accommodate them! We saw Dr. Parikh (Eli's main cardiologist in Indy), Dr. Steinberg (cardiologist in charge of the pacemaker), and Sara (surgical nurse practitioner). Overall, the appointment went well. They're happy with how he's doing. He'd even gained a little weight since discharge which made me happy because he doesn't eat as much at home as he did in the hospital. He eats, but he's a busy two year old who has much better things to do than sit down and eat more than three bites at a time. We basically offer him food every 20-30 minutes all day, every day.
Eli had an echo, EKG and his pacemaker was interrogated. That means they hold a device over the area of his body that has the pacer and it feeds info to a machine. They use the machine and that device to check and change settings on the pacemaker as needed. Eli has a dual lead pacemaker which means there's a lead in his atria (top chamber of his heart) and in his ventricle (lower chamber of his heart). Yes, I said chamber for each because Eli's heart is soooo much not like ours that he basically now has one atria instead of two and one ventricle instead of two. Dr. Steinberg has said all along that Eli only required atrial pacing, but since he was in there and you never know what a single ventricle kid will need in the future, he went ahead and placed a dual lead pacer. Now the lead going to the ventricle isn't working. That's really no big deal because Eli wasn't using it anyway, but it is kind of annoying. Dr. Steinberg said we'll just remove it or change it when it's time to change the battery or the atrial lead. Good news is that the important lead, the atrial lead, is working very well. The only thing he changed was Eli's rate. When Eli is awake he's paced at 80 beats per minute, when he's asleep it's 70 beats per minute. If he's really active or upset, he can go higher. The pacer doesn't stop his heart rate from rising because its purpose for Eli is to keep his heart rate up. Prior to the pacer he was in a junctional rhythm which resulted in a very low heart rate for him.
The echo and EKG were good. Eli wasn't thrilled about the echo, but he's so used to these things now that he doesn't actually fight us. He'll scream and reach for us, but he doesn't fight the procedure. Eventually he settles down and doesn't scream, although he doesn't act happy until it's over and he'll put his hands out, shrug a shoulder, cock his head to the side and say "All done?" It's very cute. The echo showed that he does still have some pleural effusion present, but it isn't any worse than before.
When we mentioned the fevers to the cardio team, they weren't too worried. At the time he'd only had two nights of fevers so they said if it continued to get two blood cultures and a couple other blood tests. Getting the tests isn't such a big deal. The part that was going to be tricky was they wanted them while he had the fevers, before any meds were given. He wasn't feverish until the late evening, so that meant we would have to go to the hospital after hours, get out outpatient admission done through the ER (not an ER visit though!), and then go to the lab.
So, that's what we did tonight. The past couple nights he had very low grade temps. Then he had a low grade fever all day today which spiked to 102 this evening. I went to change and gather our blood work order and insurance info. In the meantime he fell asleep on Bryan's lap. Hoping the fever had broken didn't work because I took the temp again and it was the same. So he was woken up as I lifted him off his comfy spot on Daddy's lap and took him to the hospital. We didn't have to wait too long, but from start to finish the whole thing took a little over an hour. Because they needed two blood cultures from him, he had to be stuck twice. Again, he screamed the whole time, but didn't fight it. I don't blame him for screaming. He wasn't feeling well, couldn't have any medicine for it, and it was waaayyy past bedtime in a not so fun place. Luckily, the guy who drew the blood only had to stick him once on each arm. He was very good and I was incredibly grateful for that.
The only other change we're making to Eli's routine is to resume a regular diet (instead of low fat diet) as of Monday July 1. That means instead of this special formula he's getting at night, we'll go back to cans of PediaSure for the nighttime feeds and he'll drink 2% or whole milk instead of skim. We also don't have to watch his diet (any more than a reasonable parent should anyway!). After being on a regular diet for a week, he'll get a chest xray and some blood work. That will show how his body is tolerating the fats well and if it changes the effusion in any negative way.
Tonight's update sounds pretty depressing, but honestly he is doing well. He plays a lot, he's nuts, he runs races (by himself or with us), he plays drums, he doesn't turn blue and he's pretty happy most of the time. He's been a little fussier with these fevers, but who isn't?
While I have your attention, I'd like to ask for prayers for a new heart warrior. Liam was recently diagnosed with cardiomyopathy. His mom was one of our nurses during Eli's seven week stay, and Eli was very comfortable with her (that was a HUGE deal!). The day Eli was discharged, Liam was taken to the ER for what they thought were asthma issues. An incidental finding that his liver was lower than normal lead to a chest xray. That revealed an enlarged heart, which lead to an echo, which lead to the diagnosis that their precious 3 1/2 year old son will need a heart transplant. A few days later, Liam had a cardiac MRI to determine more details about his heart. In the recovery room, he went into cardiac arrest. They were able to bring him back and put him on ECMO (heart & lung bypass machine that does the work of those organs allowing Liam's to rest). He was transferred to Cincinnati Children's Hospital a few days later. He is now off ECMO which is wonderful. Things are still very serious for him as the medical teams continue to determine what damage has been done and how long before he will need a transplant.
All this has come as a shock to his parents who just thought their son had asthma complications. I completely remember the overwhelming feelings of shock, disbelief, numbness and grief that we went through when Eli was diagnosed. These parents have been very strong, but need more prayers for them and for Liam. I know they're staying in the nearby Ronald McDonald house and their family & friends in Indy are working on fundraisers for them as they begin this journey they never expected to take. Please keep them in your prayers.
Specific Prayer Requests:
- for us to find out what is causing Eli's fevers
- for the perfect heart to be donated to Caleb
- for Liam to continue to do well and for his family to deal with these life-changing events
- for Eli to do well when his diet is changed
Thank you all for the prayers!
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