Eli had a very good night. He was easily agitated (again, agitated = pi**ed off). Some of that was due to the anesthetic wearing off. It made him very jumpy. Sometimes, even when he was sleeping well, his body would twitch or jerk and that would hurt and wake him up which resulted in a very sad cry. We had his lullaby cd playing non-stop from 7pm last night to 10 this morning.
So far today he has been seen by a cardiologist, a cardiology resident, the surgical nurse practitioner, the surgeon, the hospital intensivist, and another resident. Of course none of those exams coincided with the others so he's been examined by six doctors so far today plus his nurse has to examine him every two hours. But that's why we're here and everyone is pleased with how he's doing. His nurse today is Brittni, who is probably our favorite nurse through the past two and a half years. She is so excited to see him and can't believe how much he's grown from a baby into a little boy.
Chest x-ray this morning showed some fluid on his lungs. That is not surprising at all and a diuretic has been started to help get rid of that fluid. Eli's face, legs and feet are swollen too and you can hear crackles in his lungs. The Lasix should help with all that. He'll have another chest xray tomorrow morning to show if the diuretics are working. If not, they may have to take other measures (for example, a chest tube to drain the fluid from the lungs).
His oxygen has been weaned down to .25L and his sats are low to mid 90s. If the oxygen is turned off he drops to the low 80s so for now he'll stay on oxygen. His fingers and toes are still very pink which is just amazing to see.
Eli's pacemaker is set at 120 beats per minute. After surgery it was 150 bpm, but was turned down after his other vitals stabilized. Dr. Steinberg will keep adjusting it over the next few days to get the right settings for Eli.
Eli's urinary catheter was taken out this morning and he was able to get rid of the machine that monitors oxygenated blood flow to his brain and kidneys. Two of the IV drips he was on have been stopped. One was to help his blood pressure, which has been stable. The other was one of his pain meds. He's very sleepy today and not waking up much, so they want him to start waking up a little. He's still got one continuous pain med through his IV and then some we can give as needed. So far we haven't needed to use that one. Slowly he's getting rid of some of the equipment
He's been doing so well that there's actually talk of him being moved out of the PICU tomorrow or Sat. There are many things that have to occur before that move happens, but just the fact they can even think about moving him from the PICU is exciting.
If anyone is wants to send cards to the boys, all four of us would love it. If you already have our home address, feel free to use it. Message me via email or FB if you want it, or send it to
Zachary and/or Eli Veale
201 East Main Street
Suite 401
Washington, IN 47501
Thank you all for your prayers, messages of encouragement, and concern. We feel so loved!
Thursday, April 18, 2013
Fontan Surgery Day, 04/17/13
Holy cow. I was wrong about Tuesday being a long day, Wednesday was LONG!
We were up at 5 to have Eli at the hospital by 6:30. All the preop stuff went very smoothly and Eli only asked for a bottle once. Part of Tuesday's preop post was a prayer request for 8am Wednesday morning. You have no idea how appropriate that time frame was because right at 8 was when we laid his sleeping cuteness on the gurney and he was wheeled away from us to the OR. I couldn't watch him go. However, it was easier when I saw what time it was and knew many, many people were praying for him at that very moment.
Once we checked in with the Surgery Waiting Room staff, we got on the computer to see if we had an internet connection. Thank heavens we did because that's what made the day bearable for me! I was completely engrossed in watching Facebook blow up with Eli's MVPs tshirt pictures, sharing surgery update posts, reading encouraging messages, and just being incredibly humbled by the outpouring of support for our miraculous baby, affectionately known as "Cheekers" (because of those adorable chubby cheeks!)
If you read Tuesday's post (click here if you want to read it), you know that his preop echo led to a change in surgery plans. His Fontan and pacemaker placement were expected to take a minimum of four hours. He was taken back at 8. Surgery doesn't start immediately. After making sure he's really asleep via gas, then they start placing IVs, central lines, arterial lines, urinary catheter, and clean his chest for surgery. All that took place up to about 9:40 when the surgery actually began.
About 1pm, the OR nurse called out and reported to our liaison who in turn reported to us. Eli was doing very well. Dr. Abraham determined it was the proper time to repair Eli's mitral valve because of pretty significant regurgitation (backflow from the lower left chamber to the upper left chamber). That's what he worked on for the first 3 1/2 hours of surgery. Then he was able to start on the originally scheduled parts of surgery. We were told to expect another three hours. It ended up being a little less than that for actual surgery time, but he was kept in the OR while Dr. Steinberg adjusted the pacemaker settings. Eli also received some blood transfusions because of significant loss during surgery (huge thank you again to anyone who's donated because of Eli's story!).
We got to talk with Dr. Abraham who explained more about the mitral valve repair (in a very generic nutshell: he put some stitches in around it. You must know there's more to it than that if it took 3+ hours to do it). About an hour later we got to see our baby :)
He was already off the ventilator before he came to the Pediatric Intensive Care Unit (PICU). He was brought from the OR straight to the PICU, no recovery area. The PICU is so specialized that it serves as the recovery area for their heart babies.
Because he was off the vent, he was able to speak. It was a very sleepy croak with his eyes closed, but he was asking for Mommy & Daddy when we got in the room. He was fussy and moving a lot as two nurses worked around him trying to finish sorting his multiple lines and other tasks. He was very agitated but able to calm when we rubbed his head and held his hand while talking to him.
That's basically how the evening and night went. He fussed but was able to be calmed. He was getting too sedated with the pain medicines he was on so they were cut back. That's when the fun really started. He got more and more agitated (by the way, agitated is slang for really pi**ed off!). After he was awake enough with stable vitals, his IV pain medications were increased and he did get comfortable again. It's a fine line between keeping his pain under control, but not decreasing his respirations and blood pressure too much.
He looks so good. I can't stop saying it. Here's the big news....Are you sitting down? His fingers and toes are PINK!!!! He does not look like he just ate a blue popsicle. His overall color is sooo good. After surgery he was on two liters of oxygen. Overnight it was decreased to one liter. His sats have been about 95%. That is absolutely mind boggling to us. Eli's sats are mid 90s! He's pink!
Ahhh, we're very relieved. He's still in serious condition but doing very, very well. The power of prayer is incredible!
Wednesday, April 17, 2013
Pre Op Day, 04/16/2013
Today was a very long day. We left Washington about 7:30 (had planned on 7!). The weather was kind of sketchy in areas, but we made it through without difficulty. Well, I guess we didn't have problems. I was asleep soon after getting out of town. I was up until 3:30 to finish packing. DO NOT feel sorry for me about that night -- that's procrastination at its finest!
Once in Indy we ate a quick lunch and headed to the office to start Eli's pre op obligations. Bryan and I went into the exam room with him while my mom, God love her, took care of Zachary in the lobby. They always find things to do no matter what their surroundings so I knew he'd be entertained.
On the agenda for Eli was an echocardiogram (ultrasound of the heart and vessels), an EKG (shows the electrical rhythm of the heart), chest x-rays, bloodwork, and meetings with Dr. Steinberg (cardiologist who will place and set the pacemaker) and Sara (surgical nurse practitioner). Because of Eli's recent bout with bronchitis, it was decided to obtain an RSV swab with his labs. If it came back positive, surgery would be rescheduled. Everyone agreed his lungs sounded clear and he didn't exhibit any signs to indicate a positive test, but no one wanted to chance it. It was the last thing he had done and we got a call three hours later from Sara: Negative for RSV, surgery as planned on the 17th.
During the echo, Dr. Steinberg noted that Eli's mitral valve insufficiency was worse than they originally thought. We've known about this since his first surgery and, in fact, it's somewhat expected with Eli's condition. However, it's progressively getting worse and now there's a decision to be made. A valve replacement is not an option, Eli needs to keep his valve. Dr. Abraham (surgeon) reviewed the echo & talked with Dr. Steinberg & Dr. Parikh (Eli's main cardiologist). He will decide what to do once he's "in there" tomorrow and can better determine what option is best. Are you asking, "what are the options?" Because if you are, that's a fair question. To be completely honest, we didn't get into all that with them. It had been a long day already and we weren't halfway through our Pre Op Checklist. We know they will do what's best for Eli and we will find out what that is after surgery. We didn't need to stress over something we can't control.
"Why does the discovery of increased mitral valve function change surgery?" Another great question, blog readers! Eli is scheduled for a Fontan with pacemaker placement. We've been told to expect a minimum of 4 hours for surgery. Eli's heart does not have to be stopped with this surgery (something I didn't realize until today!), but if there is repair work to do on the mitral valve, his heart will be stopped and he'll be placed on the heart/lung bypass machine. All that means the surgery will be longer, more invasive, and have a longer recovery. The advantage to doing it now (if Dr. Abraham thinks he can improve the valve's efficiency) is that Eli's already going to be asleep, chest open and the docs will be working in that area anyway, so why not proceed at that time.
We had expected today's appointment to be two to three hours. It was five and a half. Eli tolerated it very well. Zachary did great, although he once told Mamaw Betty that Eli's check up was taking an awfully long time. We left the hospital just in time to get into rush hour traffic. By 6:00 we were at my sister's house and she was cooking supper for us (mmm, mmm, good!). We had to work to get Eli settled down for sleep tonight. He can't have anything to eat or drink after 11pm so we wanted to get a good tube feeding into him up until that point. He finally settled down for daddy and is sweetly sleeping beside me as I write this. I should go to sleep, but I really just want to lay awake and listen to his breathing and feel him kick me in the face/groin/leg/chest (he's an octopus when he sleeps).
The boys love taking baths in my sister's large tub. They had a long one tonight and I kept leaving the room (Bryan and Ashley were in there!) because it was too emotional. In no way do I want either of my boys to hurt or be sad, but it was hard to hear their laughter tonight because I don't know how long it will be before they laugh and play together again. I was trying to soak it up, but it was painful and I had to leave so the boys wouldn't see me cry.
Please wear your Eli's MVPs shirts on Wednesday. Surgery is scheduled to start between 7:30 and 8am. Many people have told me they're going to have a moment of prayer for Eli at 8am Wednesday morning. I love the idea and am asking you to do the same. Thank you!
Sometimes we don't get a good internet connection at the hospital. Ideally, I'll update our FB page with the surgical updates as we receive them and then do a daily blog post about that day's events, but if I can't connect that will not happen. Please don't assume no news is bad news on our end. We will find a way to get updates out there, but it may not be as timely as I'd like.
Specific prayer requests:
- for Dr. Abraham and the surgical team to be well rested and have their game faces on!
- for Eli to be strong and amaze us with his resilience yet again
- for Zachary as he tries to understand what is going on. It's hard to explain this to him without freaking him out. He's never seen Eli right after an operation and we're trying to prepare him for that.
- for our family who is traveling in a few hours so they can be with us during the surgery.
Thank you all so very much. I will keep putting updates out as much as I can with regards to internet and available time. Until then, remember to cherish Every Little Beat...
Once in Indy we ate a quick lunch and headed to the office to start Eli's pre op obligations. Bryan and I went into the exam room with him while my mom, God love her, took care of Zachary in the lobby. They always find things to do no matter what their surroundings so I knew he'd be entertained.
On the agenda for Eli was an echocardiogram (ultrasound of the heart and vessels), an EKG (shows the electrical rhythm of the heart), chest x-rays, bloodwork, and meetings with Dr. Steinberg (cardiologist who will place and set the pacemaker) and Sara (surgical nurse practitioner). Because of Eli's recent bout with bronchitis, it was decided to obtain an RSV swab with his labs. If it came back positive, surgery would be rescheduled. Everyone agreed his lungs sounded clear and he didn't exhibit any signs to indicate a positive test, but no one wanted to chance it. It was the last thing he had done and we got a call three hours later from Sara: Negative for RSV, surgery as planned on the 17th.
During the echo, Dr. Steinberg noted that Eli's mitral valve insufficiency was worse than they originally thought. We've known about this since his first surgery and, in fact, it's somewhat expected with Eli's condition. However, it's progressively getting worse and now there's a decision to be made. A valve replacement is not an option, Eli needs to keep his valve. Dr. Abraham (surgeon) reviewed the echo & talked with Dr. Steinberg & Dr. Parikh (Eli's main cardiologist). He will decide what to do once he's "in there" tomorrow and can better determine what option is best. Are you asking, "what are the options?" Because if you are, that's a fair question. To be completely honest, we didn't get into all that with them. It had been a long day already and we weren't halfway through our Pre Op Checklist. We know they will do what's best for Eli and we will find out what that is after surgery. We didn't need to stress over something we can't control.
"Why does the discovery of increased mitral valve function change surgery?" Another great question, blog readers! Eli is scheduled for a Fontan with pacemaker placement. We've been told to expect a minimum of 4 hours for surgery. Eli's heart does not have to be stopped with this surgery (something I didn't realize until today!), but if there is repair work to do on the mitral valve, his heart will be stopped and he'll be placed on the heart/lung bypass machine. All that means the surgery will be longer, more invasive, and have a longer recovery. The advantage to doing it now (if Dr. Abraham thinks he can improve the valve's efficiency) is that Eli's already going to be asleep, chest open and the docs will be working in that area anyway, so why not proceed at that time.
We had expected today's appointment to be two to three hours. It was five and a half. Eli tolerated it very well. Zachary did great, although he once told Mamaw Betty that Eli's check up was taking an awfully long time. We left the hospital just in time to get into rush hour traffic. By 6:00 we were at my sister's house and she was cooking supper for us (mmm, mmm, good!). We had to work to get Eli settled down for sleep tonight. He can't have anything to eat or drink after 11pm so we wanted to get a good tube feeding into him up until that point. He finally settled down for daddy and is sweetly sleeping beside me as I write this. I should go to sleep, but I really just want to lay awake and listen to his breathing and feel him kick me in the face/groin/leg/chest (he's an octopus when he sleeps).
The boys love taking baths in my sister's large tub. They had a long one tonight and I kept leaving the room (Bryan and Ashley were in there!) because it was too emotional. In no way do I want either of my boys to hurt or be sad, but it was hard to hear their laughter tonight because I don't know how long it will be before they laugh and play together again. I was trying to soak it up, but it was painful and I had to leave so the boys wouldn't see me cry.
Please wear your Eli's MVPs shirts on Wednesday. Surgery is scheduled to start between 7:30 and 8am. Many people have told me they're going to have a moment of prayer for Eli at 8am Wednesday morning. I love the idea and am asking you to do the same. Thank you!
Sometimes we don't get a good internet connection at the hospital. Ideally, I'll update our FB page with the surgical updates as we receive them and then do a daily blog post about that day's events, but if I can't connect that will not happen. Please don't assume no news is bad news on our end. We will find a way to get updates out there, but it may not be as timely as I'd like.
Specific prayer requests:
- for Dr. Abraham and the surgical team to be well rested and have their game faces on!
- for Eli to be strong and amaze us with his resilience yet again
- for Zachary as he tries to understand what is going on. It's hard to explain this to him without freaking him out. He's never seen Eli right after an operation and we're trying to prepare him for that.
- for our family who is traveling in a few hours so they can be with us during the surgery.
Thank you all so very much. I will keep putting updates out as much as I can with regards to internet and available time. Until then, remember to cherish Every Little Beat...
Sunday, April 14, 2013
Not Always Singing in the Shower
Some people sing in the shower. I do sometimes. Not well, but that's never stopped me. For as long as I can remember, I've had a radio playing in the bathroom while I shower. Not sure why, but it's part of my routine. Sometimes singing is just a way to pass the time while you're lathering, rinsing and repeating. But other times it's a welcome distraction.
As a busy momma to these two boys, I cherish my "alone time" when I finally get to shower! However, as much as I look forward to a hot, relaxing shower, a small part of me wants to avoid it. In the shower is usually when I stop "holding it in" and let the tears run free from my eyes. I try to distract myself with the radio. When that doesn't work, I make up alternate personas for myself and mentally live them out. I've been an Olympian, a songwriter, a model, a coach, and a multitude of other things, none of which are remotely close to my life. I am not wishing for another life, I don't want to trade the people I have, and I am not interested in becoming someone I'm not. It's more like when you're reading a good book and slip into the role of one of the characters, except this isn't a book.
I let the tears out. Sometimes I cry through the whole shower and let the tears mix with the water and wash down the drain, never to be seen again (well, until my next batch of tears is ready to show up). Sometimes I'm too mentally exhausted to let it happen so I get lost in the radio or in my ridiculous imagination for a few minutes. It may be a silly coping mechanism, but it's mine and works for me.
Why am I telling you this? Not so you'll feel sorry for me. I really don't want that. It's just to let you know that I have my moments. I let it out. It often happens in the shower. I guess it's because there's no covering anything in there and it's easy to bare the soul as well. I don't know why exactly, but that's my "weak spot."
Through the past two plus years, I've lost count how many comments I've heard or read regarding how we hold it together. "How do you do it?" "I don't know how you do it." "I couldn't do it." "You're so strong."
I think we do a pretty good job. Most of the reason is because of the boys themselves. Eli is too young to understand something is "wrong" with him. It's all Zachary knows because Eli's the only baby he has around. In the past, when Zachary would see a picture of a baby without a shirt, he was confused because that baby didn't have scars on his/her chest or two buttons (one belly button and one MicKey feeding button). His baby did so he thought they all did! This is the norm for the boys, their comfort level, their needs and therefore our life. We don't know any different.
I know people mean it as a compliment when they ask the above questions or make the comments. I understand that and appreciate it. But you must know, I don't hold it together all the time. In my head, I feel like I have to make an effort to talk about something other than Eli's health, upcoming surgery, or its impact on our future. I feel like I'm just the same as most other parents because they would do anything for their children. The difference is that Bryan and I are called to do some very different things for Eli than other parents have to for their children. Those things have incorporated themselves into our lifestyle, become part of our routine and we can't imagine a day when we don't do those things.
That doesn't mean I'm happy about it. However, an altered lifestyle to fit around Eli's needs and Zachary's needs as a sibling to Eli, means that Eli is still here. The fight to keep him here will be met with fierce competition on our part. But that daily fight does take its toll.
I'd be lying if I said I always held it together. I don't. Most of the time I can, and without much effort. But sometimes I can't. Random tears will creep up on me when I'm doing some of the most mundane tasks like folding laundry, doing dishes, peeling vegetables, or rocking Eli to sleep for his nap. I'll hear a song on the radio or read a touching poem and think "that would be nice at his funeral." We have had to prepare ourselves for the possibility that he may not be with us long and that's crept into many facets of our lives. Don't take that to mean that I sit around thinking morbid thoughts. Believe it or not, to find something pleasing enough to consider it a part of a loved one's funeral is a comfort. A way to pay respect and tribute to the way the person touched your life.
In no way am I ready to let go of Eli. I do not think he will pass away because of this surgery. He has too much trouble left to cause! I read a book called Heart Warriors: A Family Faces Congenital Heart Disease by Amanda Rose Adams. Her son is also a CHD warrior whose defects are similar to Eli's. Many things about that book touched me but one phrase in particular has stuck with me:
As a busy momma to these two boys, I cherish my "alone time" when I finally get to shower! However, as much as I look forward to a hot, relaxing shower, a small part of me wants to avoid it. In the shower is usually when I stop "holding it in" and let the tears run free from my eyes. I try to distract myself with the radio. When that doesn't work, I make up alternate personas for myself and mentally live them out. I've been an Olympian, a songwriter, a model, a coach, and a multitude of other things, none of which are remotely close to my life. I am not wishing for another life, I don't want to trade the people I have, and I am not interested in becoming someone I'm not. It's more like when you're reading a good book and slip into the role of one of the characters, except this isn't a book.
I let the tears out. Sometimes I cry through the whole shower and let the tears mix with the water and wash down the drain, never to be seen again (well, until my next batch of tears is ready to show up). Sometimes I'm too mentally exhausted to let it happen so I get lost in the radio or in my ridiculous imagination for a few minutes. It may be a silly coping mechanism, but it's mine and works for me.
Why am I telling you this? Not so you'll feel sorry for me. I really don't want that. It's just to let you know that I have my moments. I let it out. It often happens in the shower. I guess it's because there's no covering anything in there and it's easy to bare the soul as well. I don't know why exactly, but that's my "weak spot."
Through the past two plus years, I've lost count how many comments I've heard or read regarding how we hold it together. "How do you do it?" "I don't know how you do it." "I couldn't do it." "You're so strong."
I think we do a pretty good job. Most of the reason is because of the boys themselves. Eli is too young to understand something is "wrong" with him. It's all Zachary knows because Eli's the only baby he has around. In the past, when Zachary would see a picture of a baby without a shirt, he was confused because that baby didn't have scars on his/her chest or two buttons (one belly button and one MicKey feeding button). His baby did so he thought they all did! This is the norm for the boys, their comfort level, their needs and therefore our life. We don't know any different.
I know people mean it as a compliment when they ask the above questions or make the comments. I understand that and appreciate it. But you must know, I don't hold it together all the time. In my head, I feel like I have to make an effort to talk about something other than Eli's health, upcoming surgery, or its impact on our future. I feel like I'm just the same as most other parents because they would do anything for their children. The difference is that Bryan and I are called to do some very different things for Eli than other parents have to for their children. Those things have incorporated themselves into our lifestyle, become part of our routine and we can't imagine a day when we don't do those things.
That doesn't mean I'm happy about it. However, an altered lifestyle to fit around Eli's needs and Zachary's needs as a sibling to Eli, means that Eli is still here. The fight to keep him here will be met with fierce competition on our part. But that daily fight does take its toll.
I'd be lying if I said I always held it together. I don't. Most of the time I can, and without much effort. But sometimes I can't. Random tears will creep up on me when I'm doing some of the most mundane tasks like folding laundry, doing dishes, peeling vegetables, or rocking Eli to sleep for his nap. I'll hear a song on the radio or read a touching poem and think "that would be nice at his funeral." We have had to prepare ourselves for the possibility that he may not be with us long and that's crept into many facets of our lives. Don't take that to mean that I sit around thinking morbid thoughts. Believe it or not, to find something pleasing enough to consider it a part of a loved one's funeral is a comfort. A way to pay respect and tribute to the way the person touched your life.
In no way am I ready to let go of Eli. I do not think he will pass away because of this surgery. He has too much trouble left to cause! I read a book called Heart Warriors: A Family Faces Congenital Heart Disease by Amanda Rose Adams. Her son is also a CHD warrior whose defects are similar to Eli's. Many things about that book touched me but one phrase in particular has stuck with me:
"I put my son through hell to save him from heaven"
That is so true. The surgeries, the blood draws, the therapies, the medicines, the restrictions, the extra hand washing, the overprotectiveness, the fear, and the drive he HAS to have to stay with us are a lot to ask. Especially of someone so young. And, Eli, I'm so very sorry you have to endure all you do, but I am not willing to let you go. I will spend the rest of my life crying through every shower I take if it means I get to see your smiling face when I'm finished. And now all you who are reading this now know my secret to surviving: I'm human.
Saturday, April 13, 2013
Oh, Mr. Postman....
We've had a lot of support since Eli was diagnosed in January of
2011. It's been pretty amazing. We always knew we had great family
& friends, but to see it in action is very humbling. The decision to start fundraising for Eli was a tough decision
for us. We work for what we have. We know others do too, especially in
this economy. We know that our children are not the responsibility of
others. However, we finally decided that only those who wanted to help
would do so. If they didn't want to, no pressure and no hard feelings.
The response has been incredible.
Here's a few examples of the support we've recently received:
--The shirt sales for Eli's MVPs raised more than we ever imagined. My most recent count was 183 tshirts and 59 hoodies for Eli's MVPs. We wanted to make sure Zachary felt included in this, especially since he's never once complained that Eli had shirts and Z didn't. So we had a shirt designed for him and sold them to family & friends at cost so Zachary could have a visual reminder that he's just as cool and important as Eli. We sold more than 30 "Zachary's Fan Club" shirts.
--In addition to shirt sales, we had a lot of donations. We often had people pay for more shirts than they ordered and told us to keep it for Eli's fund. Some didn't even order, they just gave money. Thank you doesn't seem sufficient.
--Bryan's work held a benefit luncheon for us this week. A committee passed out fliers to advertise within their district and when the day came there was a wonderful spread of hot dogs, coney sauce, chips, desserts, and drinks. They also had a dessert auction. People were asked to make a $5 donation for the meal. I don't know how many people showed up, but it was a lot! Many were wearing Eli's MVPs shirts which was awesome to see! Other districts have heard Eli's story through their office communications. From his story being shared across the state, we've gotten more shirt orders, donations, and messages of encouragement.
--After the story about Eli ran in our local newspaper (click here to read the article), we had a phone call. It was from a woman who read the story and was touched by what she read. She said that she was praying for all of us and would add Eli to her church's prayer list. Just the fact that this stranger took a moment to reach out to us was very sweet.
--The Facebook page has grown tremendously! One day last week I challenged people to share Eli's page on their personal pages to gain more "likes." The challenge was to get 21 more "likes" to put us at 200 total before his surgery (at the time it was 13 days away). In about four hours' time we were well over 200. As of now we're up to 271, almost 100 more than when I initially issued the challenge. I don't know everyone on the page anymore and I'm okay with that. One of our goals with starting the page and making it public was to increase the general public's knowledge of CHD. We're getting there! If you're on FB and haven't liked his page yet, do so by clicking here.
Please know that we are so thankful for anything and everything you've done for us. I'm running out of ways to express our gratitude. From the bottoms of our hearts, thank you for the prayers, orders, donations, meals, hugs, encouraging words, and anything I may have forgotten to list. Even with all that, we still have people asking "what can I do" and "call me if you need something, anything!"
We've gotten those comments all along, but especially these last few weeks. Most of the time our answer is to pray. In recent posts we've also asked that people consider organ donation and make their wishes known to family & friends. We also ask that you donate blood whenever possible. Some readers have contacted us and told us that because of inspiration from Eli, they have signed up to be an organ donor and/or donated blood. Those comments have been so rewarding! To those of you who have done either or both, THANK YOU!
Here's something else we've decided would help us out and ANYONE can do this: Send mail. Send a card, a letter, a postcard, whatever works for you. Throughout all of his surgeries and hospitalizations, we haven't received much mail and no hospital deliveries. Please don't think I'm complaining. Eli was too young before, but now he's old enough to get some enjoyment from something like that. In this age, most of our communication is via phone & internet. I've tried to save most of the electronic comments and well-wishes from people, but it's just not quite as special as holding a card in front of you from a loved one. Eli will have lots of time in a hospital bed and we're stocking up on things to occupy his interests. Getting mail to open and look at will help keep him busy. It will help Zachary feel more included as we endure another separation from our firstborn who is just as special to us with his whole heart as our half a heart child is. You don't have to get some fancy card that costs $4. They're kids who are pretty easy to please. They'll love a picture drawn on a piece of paper, a note written beside a funny picture from a magazine, a short message about how your day is going and what you're doing. It will also help keep me & Bryan in touch with the world outside Peyton Manning Children's Hospital. It's unbelievable how easy it is to forget the outside world while there. In some ways that's nice to shut off the bad things in the world, but we miss a lot of the good too.
If you have our home address, you're welcome to send it here. If you want it, message me and I'll send it to you. I'm not posting it here because I don't want it out floating in cyber space. Or you can send it to:
Zachary Veale or Eli Veale
201 East Main Street
Suite 401
Washington, IN 47501
That's a local business who will gather any mail received for the boys and bring it to us while we're at the hospital. After Eli's admitted I will post the hospital address, but it doesn't do any good until we have a room number for him (which we won't have until after surgery).
Thank you to anyone who is willing to help with this project. It will excite the boys so much to receive a bunch of mail!
Here's a few examples of the support we've recently received:
--The shirt sales for Eli's MVPs raised more than we ever imagined. My most recent count was 183 tshirts and 59 hoodies for Eli's MVPs. We wanted to make sure Zachary felt included in this, especially since he's never once complained that Eli had shirts and Z didn't. So we had a shirt designed for him and sold them to family & friends at cost so Zachary could have a visual reminder that he's just as cool and important as Eli. We sold more than 30 "Zachary's Fan Club" shirts.
--In addition to shirt sales, we had a lot of donations. We often had people pay for more shirts than they ordered and told us to keep it for Eli's fund. Some didn't even order, they just gave money. Thank you doesn't seem sufficient.
--Bryan's work held a benefit luncheon for us this week. A committee passed out fliers to advertise within their district and when the day came there was a wonderful spread of hot dogs, coney sauce, chips, desserts, and drinks. They also had a dessert auction. People were asked to make a $5 donation for the meal. I don't know how many people showed up, but it was a lot! Many were wearing Eli's MVPs shirts which was awesome to see! Other districts have heard Eli's story through their office communications. From his story being shared across the state, we've gotten more shirt orders, donations, and messages of encouragement.
--After the story about Eli ran in our local newspaper (click here to read the article), we had a phone call. It was from a woman who read the story and was touched by what she read. She said that she was praying for all of us and would add Eli to her church's prayer list. Just the fact that this stranger took a moment to reach out to us was very sweet.
--The Facebook page has grown tremendously! One day last week I challenged people to share Eli's page on their personal pages to gain more "likes." The challenge was to get 21 more "likes" to put us at 200 total before his surgery (at the time it was 13 days away). In about four hours' time we were well over 200. As of now we're up to 271, almost 100 more than when I initially issued the challenge. I don't know everyone on the page anymore and I'm okay with that. One of our goals with starting the page and making it public was to increase the general public's knowledge of CHD. We're getting there! If you're on FB and haven't liked his page yet, do so by clicking here.
Please know that we are so thankful for anything and everything you've done for us. I'm running out of ways to express our gratitude. From the bottoms of our hearts, thank you for the prayers, orders, donations, meals, hugs, encouraging words, and anything I may have forgotten to list. Even with all that, we still have people asking "what can I do" and "call me if you need something, anything!"
We've gotten those comments all along, but especially these last few weeks. Most of the time our answer is to pray. In recent posts we've also asked that people consider organ donation and make their wishes known to family & friends. We also ask that you donate blood whenever possible. Some readers have contacted us and told us that because of inspiration from Eli, they have signed up to be an organ donor and/or donated blood. Those comments have been so rewarding! To those of you who have done either or both, THANK YOU!
Here's something else we've decided would help us out and ANYONE can do this: Send mail. Send a card, a letter, a postcard, whatever works for you. Throughout all of his surgeries and hospitalizations, we haven't received much mail and no hospital deliveries. Please don't think I'm complaining. Eli was too young before, but now he's old enough to get some enjoyment from something like that. In this age, most of our communication is via phone & internet. I've tried to save most of the electronic comments and well-wishes from people, but it's just not quite as special as holding a card in front of you from a loved one. Eli will have lots of time in a hospital bed and we're stocking up on things to occupy his interests. Getting mail to open and look at will help keep him busy. It will help Zachary feel more included as we endure another separation from our firstborn who is just as special to us with his whole heart as our half a heart child is. You don't have to get some fancy card that costs $4. They're kids who are pretty easy to please. They'll love a picture drawn on a piece of paper, a note written beside a funny picture from a magazine, a short message about how your day is going and what you're doing. It will also help keep me & Bryan in touch with the world outside Peyton Manning Children's Hospital. It's unbelievable how easy it is to forget the outside world while there. In some ways that's nice to shut off the bad things in the world, but we miss a lot of the good too.
If you have our home address, you're welcome to send it here. If you want it, message me and I'll send it to you. I'm not posting it here because I don't want it out floating in cyber space. Or you can send it to:
Zachary Veale or Eli Veale
201 East Main Street
Suite 401
Washington, IN 47501
That's a local business who will gather any mail received for the boys and bring it to us while we're at the hospital. After Eli's admitted I will post the hospital address, but it doesn't do any good until we have a room number for him (which we won't have until after surgery).
Thank you to anyone who is willing to help with this project. It will excite the boys so much to receive a bunch of mail!
Thursday, April 11, 2013
The Countdown Continues
By this time next week, Eli's surgery will be over and he'll be spending his first night of this leg of his journey in the PICU (pediatric intensive care unit). What is this surgery? What will they do? In a nutshell, they're changing how the "used" blood (unoxygenated) returns to his heart. It will be rerouted to bypass the right side of his heart (the side that doesn't work) and go straight to the lungs to get oxygen. From there it will go to the left side of the heart to be pumped out to the body. This surgery is called a Fontan. For more information on the Fontan, the previous operations he's had, and what his defects are, click here.
He will also get a pacemaker. Why does he need a pacemaker? During Eli's last heart surgery (the Glenn or Hemi-Fontan) his heart rhythm changed. We've been told that a change in rhythm is common for these kids, but most don't happen until sometime after the Fontan. We like to think of Eli as an overachiever. Part of Eli's heart isn't firing properly. That affects his heart rate. A kid his age should have a heart rate of around 120. Eli's average is 80. When he's really mad he might get to 100. When we get upset our heart rates usually go up. Eli is two, his way of showing he's upset is by crying. If Eli is crying about something, it makes him feel bad. Physically feel bad, not emotionally "oh, woe is me" bad. He feels worse as he's crying, but again, he's two, so he doesn't know that. He just knows he had something to cry about and now he feels worse. So he cries more. That makes him feel even worse. It's a viscous cycle. It's hard for us because we don't want to give in to every single cry and make him think that crying gets him what he wants. On the other hand, we have to do what we can to calm him. Otherwise we'll be cleaning up vomit, his head will be very sweaty, his lips, nose, and fingers will be blue and it will take a LONG time to make him feel better. We try to use a lot of distraction but sometimes that doesn't work and we just give in. A pacemaker will help increase his heart rate and keep it in a steady rhythm. Dr. Steinberg (cardiologist who will put in the pacemaker) told us more than a year ago that he was not worried about Eli's heart stopping. If that was a concern, he would've had a pacemaker long before now. It's just not ideal for a single-ventricle baby to further stress his heart with an abnormal rhythm. Eli has tolerated that rhythm (a junctional rhythm for all my medical buddies reading this!) for over a year. The goal was to do it with the Fontan and that's where we're at now.
Here's what we know about pre op and surgery day so far. Tuesday, April 16, Eli has an appointment with the surgical nurse practitioner and Dr. Steinberg. They will examine him and explain more about the surgery to us. Eli will also have an echocardiogram (ultrasound of the heart) and an EKG (shows the electrical activity/rhythm of the heart). When we're done there, we'll be escorted to the hospital where he will have some xrays and bloodwork done. All in all it will probably be about three hours. We'll have the rest of the afternoon and evening together and we'll spend the night at my sister's house. Early Wednesday morning, April 17, Bryan and I will take Eli to the hospital. What time? We'll find out Tuesday. We don't have anything else going on Wednesday so we're pretty flexible with whatever they have scheduled ;) My sister & mom will bring Zachary to the hospital at some point. We haven't decided if that will be before surgery so they can see each other one more time, or if we'll wait until surgery has started. That will be determined later depending on moods and required times!
Eli's hospitalization is expected to be anywhere from a week to a month. It all depends on how his body tolerates this new "plumbing" they're doing. One complication that may arise is fluid on his lungs. The length of stay is directly related to how his body deals with the fluid (if there is any) and what interventions the doctors need to take to aid with that.
These past few days and the next few are busy for us. We're trying to have a lot of family time. We're trying not to think about it despite it always being on our minds. We're trying to finish shirt orders. We're trying to clean house, turn in our recycling, and take care of some yard work so we don't come home to the house the way it is now! We're trying to pack.
That's a task that almost deserves its own post! We have to pack in stages. We'll spend one night at my sister's so we don't need a lot for one night. Zachary will be staying longer with her so he'll need several days' worth of clothes, plus some of his favorite games, dinosaurs, loveys, movies, and art supplies (he plans on making a lot of cards while we're apart!) The day of surgery, we will have a bag of things to occupy our time in the waiting room. That bag will probably never be opened, but the effort must be made. It also needs to contain a few things for Eli that we'll give him when we finally get to see him after surgery. We won't know what room he'll be in until after surgery, so our bigger, several-days'-worth-of-stuff-bag will stay in the van until that evening. We'll need spare pacifiers, his lullaby CD, a DVD with noise he likes (something familiar & comforting), and a favorite stuffed animal or two. Yes, he'll still be unconscious, but in the past he knew his own things and he's even smarter now. Finally, we'll have two bigger bags to rotate between the van and the hospital room. That's so we don't have to be down to our last pair of underwear before doing laundry (there's a washer & dryer on one of the pediatric floors). We don't pack a lot for ourselves, but we will have a lot of Eli's favorite toys, books, DVD's, etc for him once he's awake and needs to stay in his bed but doesn't want to.
We're also stocking up on cards, small gifts, stickers, etc to mail to Zachary while we're apart. He'll be with my sister for the first few days and get to visit, but he will be back home with family before we are. Last time, we mailed one or two things every day so he constantly had something from me, Bryan, Eli or any combination of us. Something else we did last time and will do again is to let him pick out two folders (or if there's time, we'll make them). One folder will stay with him and the other with us. While we're apart we fill it with notes, pictures, anything that makes us smile and think of the other. When he comes to visit on weekends or when Eli's discharged home, we'll exchange the folders. Last time we made a treasure map for him. He didn't know about that until the end of one of his visits. We gave it to him when he was getting ready to leave so that he had something to look forward to when he got home. The next day he and Mamaw used the map to find the "X" that was in our yard and dig up the treasure. It was a box with goodies in Ziploc baggies. He had lots of stickers, a couple new movies and a book. He liked it a lot and we'll do something similar to that again. The point is something for him to look forward to at home even though the four of us aren't there together.
Another big project we did for both boys last time and are updating for this time, is a personal photo album. There's one for each boy and they're filled with pictures of family and friends. Zachary'swas mostly the four of us since that's what he was without. Eli's included more extended family & friends since that's what he was without. Both have been used a lot since that last surgery just because they're fun to look at. I wish I had stayed on top of updating them as time went by like I initially planned, but life gets in the way!
We're open to any suggestions for things to occupy Eli in the hospital or things to do for Zachary while we're apart. Comment on this blog post, send a message through FB, or email us at elismvps@yahoo.com
Thanks for your concern and support.
He will also get a pacemaker. Why does he need a pacemaker? During Eli's last heart surgery (the Glenn or Hemi-Fontan) his heart rhythm changed. We've been told that a change in rhythm is common for these kids, but most don't happen until sometime after the Fontan. We like to think of Eli as an overachiever. Part of Eli's heart isn't firing properly. That affects his heart rate. A kid his age should have a heart rate of around 120. Eli's average is 80. When he's really mad he might get to 100. When we get upset our heart rates usually go up. Eli is two, his way of showing he's upset is by crying. If Eli is crying about something, it makes him feel bad. Physically feel bad, not emotionally "oh, woe is me" bad. He feels worse as he's crying, but again, he's two, so he doesn't know that. He just knows he had something to cry about and now he feels worse. So he cries more. That makes him feel even worse. It's a viscous cycle. It's hard for us because we don't want to give in to every single cry and make him think that crying gets him what he wants. On the other hand, we have to do what we can to calm him. Otherwise we'll be cleaning up vomit, his head will be very sweaty, his lips, nose, and fingers will be blue and it will take a LONG time to make him feel better. We try to use a lot of distraction but sometimes that doesn't work and we just give in. A pacemaker will help increase his heart rate and keep it in a steady rhythm. Dr. Steinberg (cardiologist who will put in the pacemaker) told us more than a year ago that he was not worried about Eli's heart stopping. If that was a concern, he would've had a pacemaker long before now. It's just not ideal for a single-ventricle baby to further stress his heart with an abnormal rhythm. Eli has tolerated that rhythm (a junctional rhythm for all my medical buddies reading this!) for over a year. The goal was to do it with the Fontan and that's where we're at now.
Here's what we know about pre op and surgery day so far. Tuesday, April 16, Eli has an appointment with the surgical nurse practitioner and Dr. Steinberg. They will examine him and explain more about the surgery to us. Eli will also have an echocardiogram (ultrasound of the heart) and an EKG (shows the electrical activity/rhythm of the heart). When we're done there, we'll be escorted to the hospital where he will have some xrays and bloodwork done. All in all it will probably be about three hours. We'll have the rest of the afternoon and evening together and we'll spend the night at my sister's house. Early Wednesday morning, April 17, Bryan and I will take Eli to the hospital. What time? We'll find out Tuesday. We don't have anything else going on Wednesday so we're pretty flexible with whatever they have scheduled ;) My sister & mom will bring Zachary to the hospital at some point. We haven't decided if that will be before surgery so they can see each other one more time, or if we'll wait until surgery has started. That will be determined later depending on moods and required times!
Eli's hospitalization is expected to be anywhere from a week to a month. It all depends on how his body tolerates this new "plumbing" they're doing. One complication that may arise is fluid on his lungs. The length of stay is directly related to how his body deals with the fluid (if there is any) and what interventions the doctors need to take to aid with that.
These past few days and the next few are busy for us. We're trying to have a lot of family time. We're trying not to think about it despite it always being on our minds. We're trying to finish shirt orders. We're trying to clean house, turn in our recycling, and take care of some yard work so we don't come home to the house the way it is now! We're trying to pack.
That's a task that almost deserves its own post! We have to pack in stages. We'll spend one night at my sister's so we don't need a lot for one night. Zachary will be staying longer with her so he'll need several days' worth of clothes, plus some of his favorite games, dinosaurs, loveys, movies, and art supplies (he plans on making a lot of cards while we're apart!) The day of surgery, we will have a bag of things to occupy our time in the waiting room. That bag will probably never be opened, but the effort must be made. It also needs to contain a few things for Eli that we'll give him when we finally get to see him after surgery. We won't know what room he'll be in until after surgery, so our bigger, several-days'-worth-of-stuff-bag will stay in the van until that evening. We'll need spare pacifiers, his lullaby CD, a DVD with noise he likes (something familiar & comforting), and a favorite stuffed animal or two. Yes, he'll still be unconscious, but in the past he knew his own things and he's even smarter now. Finally, we'll have two bigger bags to rotate between the van and the hospital room. That's so we don't have to be down to our last pair of underwear before doing laundry (there's a washer & dryer on one of the pediatric floors). We don't pack a lot for ourselves, but we will have a lot of Eli's favorite toys, books, DVD's, etc for him once he's awake and needs to stay in his bed but doesn't want to.
We're also stocking up on cards, small gifts, stickers, etc to mail to Zachary while we're apart. He'll be with my sister for the first few days and get to visit, but he will be back home with family before we are. Last time, we mailed one or two things every day so he constantly had something from me, Bryan, Eli or any combination of us. Something else we did last time and will do again is to let him pick out two folders (or if there's time, we'll make them). One folder will stay with him and the other with us. While we're apart we fill it with notes, pictures, anything that makes us smile and think of the other. When he comes to visit on weekends or when Eli's discharged home, we'll exchange the folders. Last time we made a treasure map for him. He didn't know about that until the end of one of his visits. We gave it to him when he was getting ready to leave so that he had something to look forward to when he got home. The next day he and Mamaw used the map to find the "X" that was in our yard and dig up the treasure. It was a box with goodies in Ziploc baggies. He had lots of stickers, a couple new movies and a book. He liked it a lot and we'll do something similar to that again. The point is something for him to look forward to at home even though the four of us aren't there together.
Another big project we did for both boys last time and are updating for this time, is a personal photo album. There's one for each boy and they're filled with pictures of family and friends. Zachary'swas mostly the four of us since that's what he was without. Eli's included more extended family & friends since that's what he was without. Both have been used a lot since that last surgery just because they're fun to look at. I wish I had stayed on top of updating them as time went by like I initially planned, but life gets in the way!
We're open to any suggestions for things to occupy Eli in the hospital or things to do for Zachary while we're apart. Comment on this blog post, send a message through FB, or email us at elismvps@yahoo.com
Thanks for your concern and support.
Wednesday, April 3, 2013
Escape
Eli has been trying to escape. Okay, not necessarily escape, but he loves to go bye-bye. He hates being "left behind" and I don't blame him. However, he has to realize that he can't leave the house any time he wants to and that at the ripe old age of two years and five months, he is not as street-savvy as he believes himself to be.
Today he tried to leave five different times. The first time was adorable. He came to me wanting help to put on his Elmo backpack. Once it was on he left the room. I thought he was playing in his room. Instead, I heard the door to the garage open. I followed and asked him where he thought he was going. He looks up at me and says "Doc Amy. No boo-boos. Hugs." I got him back in and promised that he would see Dr. Amy soon and get a hug and no boo-boos (shots).
The second time was while I walked the dog in the front yard. I never go where I can't see the front door so it was easy to see it open and Eli step out. In his socks. I told him to go back inside and he did. He put one foot inside before turning around and starting down the walk. Albert & I changed our route and ushered Eli back into the house (with a few strong words and a stern look on my face). I must have been convincing because he didn't try again while Albert took me back to our original place for him to finish his business.
The third, fourth, and fifth times were this evening. Bryan and Zachary had left to shop for new shoes for Zachary's upcoming t-ball season. We knew last year's shoes wouldn't fit, but we didn't expect he would need three sizes larger. Silly us. Eli was left at home with me. It had nothing to do with me, he just wanted to go bye-bye. Never mind that he'd had two outings today (not the escape ones, legit outings in the van). He put on Zachary's shoes and headed to the front door. I let him because I knew it was locked and wanted to see if the two locks are any issue for him anymore. They're not. He was making his way to the porch with tears in his eyes and pleading "bye-bye!" as I brought him back into the house. I got him settled with some toys but as soon as I looked away, he was at the garage door and getting out. Again, I stopped him but he blatantly turned away from me and started back to the door. I picked him up, took the shoes off his feet and put him in his crib. He cried for a while but I left him in there because I knew he'd head straight to a door if I didn't. When I went to get him he was still crying as he stood at the rail of his crib with his arms over the side. I gave him a hug and said "I can't let you get away from me, you might get hurt."
Instantly I felt like a hypocrite. Here I am, spending the day keeping him by my side under the pretense of "not getting hurt" when in two weeks I turn him over to people who are strangers to him and they will hurt him. They will start IVs on him, give him medicines that make him feel weird, take his blood, put him to sleep, crack open his chest.... I could go on but that sufficiently describes some of what will happen in the first three hours he's at the hospital on the day of surgery. Yes, the purpose is to save his life, but he doesn't understand that. He understands boo-boos and owies. More than any child should.
That moment of instant hypocrisy describes how I've been feeling since we got this date scheduled. We KNOW he needs this. We KNOW we don't have a choice, it has to be done. But it's so hard to watch him play and realize that, at best, we're stealing weeks of his playtime and filling them with surgery, pain, doctors, nurses, therapists, tubes, IVs, monitors, oxygen, strange surroundings, and time away from his real family life. That's at best. At worst? I can't even think it. That's not true, I think it a lot. We have to. We have to prepare ourselves for the worst without dwelling on it. This surgery, in relation to the two previous heart surgeries he's had, is not the riskiest. That was the first one. Eli had a one in three chance of not surviving that operation. I don't know what the actual numbers are this time, but the last time (his second surgery) the risk of death was about 1%. I think this time may be a little higher, but not much. However, this is our baby and any percentage is too much. Our comfort is knowing that we're going to the right facility for us. We have the right doctors for us. We have amazingly supportive family and friends. We know the number of people praying for him increases every day.
We really know and believe all the positive things I just listed. We just can't help but worry he will "escape" from us one final time.
Today he tried to leave five different times. The first time was adorable. He came to me wanting help to put on his Elmo backpack. Once it was on he left the room. I thought he was playing in his room. Instead, I heard the door to the garage open. I followed and asked him where he thought he was going. He looks up at me and says "Doc Amy. No boo-boos. Hugs." I got him back in and promised that he would see Dr. Amy soon and get a hug and no boo-boos (shots).
The second time was while I walked the dog in the front yard. I never go where I can't see the front door so it was easy to see it open and Eli step out. In his socks. I told him to go back inside and he did. He put one foot inside before turning around and starting down the walk. Albert & I changed our route and ushered Eli back into the house (with a few strong words and a stern look on my face). I must have been convincing because he didn't try again while Albert took me back to our original place for him to finish his business.
The third, fourth, and fifth times were this evening. Bryan and Zachary had left to shop for new shoes for Zachary's upcoming t-ball season. We knew last year's shoes wouldn't fit, but we didn't expect he would need three sizes larger. Silly us. Eli was left at home with me. It had nothing to do with me, he just wanted to go bye-bye. Never mind that he'd had two outings today (not the escape ones, legit outings in the van). He put on Zachary's shoes and headed to the front door. I let him because I knew it was locked and wanted to see if the two locks are any issue for him anymore. They're not. He was making his way to the porch with tears in his eyes and pleading "bye-bye!" as I brought him back into the house. I got him settled with some toys but as soon as I looked away, he was at the garage door and getting out. Again, I stopped him but he blatantly turned away from me and started back to the door. I picked him up, took the shoes off his feet and put him in his crib. He cried for a while but I left him in there because I knew he'd head straight to a door if I didn't. When I went to get him he was still crying as he stood at the rail of his crib with his arms over the side. I gave him a hug and said "I can't let you get away from me, you might get hurt."
Instantly I felt like a hypocrite. Here I am, spending the day keeping him by my side under the pretense of "not getting hurt" when in two weeks I turn him over to people who are strangers to him and they will hurt him. They will start IVs on him, give him medicines that make him feel weird, take his blood, put him to sleep, crack open his chest.... I could go on but that sufficiently describes some of what will happen in the first three hours he's at the hospital on the day of surgery. Yes, the purpose is to save his life, but he doesn't understand that. He understands boo-boos and owies. More than any child should.
That moment of instant hypocrisy describes how I've been feeling since we got this date scheduled. We KNOW he needs this. We KNOW we don't have a choice, it has to be done. But it's so hard to watch him play and realize that, at best, we're stealing weeks of his playtime and filling them with surgery, pain, doctors, nurses, therapists, tubes, IVs, monitors, oxygen, strange surroundings, and time away from his real family life. That's at best. At worst? I can't even think it. That's not true, I think it a lot. We have to. We have to prepare ourselves for the worst without dwelling on it. This surgery, in relation to the two previous heart surgeries he's had, is not the riskiest. That was the first one. Eli had a one in three chance of not surviving that operation. I don't know what the actual numbers are this time, but the last time (his second surgery) the risk of death was about 1%. I think this time may be a little higher, but not much. However, this is our baby and any percentage is too much. Our comfort is knowing that we're going to the right facility for us. We have the right doctors for us. We have amazingly supportive family and friends. We know the number of people praying for him increases every day.
We really know and believe all the positive things I just listed. We just can't help but worry he will "escape" from us one final time.
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