Recovering at the Ronald McDonald House
Again, I apologize for the update-for some reason it was deleted.
Right now it's been one month since heart transplant surgery and he is recovering well.
He still has several vomiting episodes and withdrawal symptoms so its hard to watch him have side effects. He was recently admitted again to the hospital because we had a vomiting episode where he choked and was not breathing correctly. We ended up back in the ICU because he was still fresh from heart surgery so they wanted to monitor him to make sure everything is ok. His heart is doing very well, we feel it was a reflux issue between the feedings and the volume of formula. We were in the hospital for about one week and now we are back at the Ronald McDonald house.
It's been about 3-4 weeks now staying at the Ronald McDonald house and the facility here are gorgeous. They prepare lunch and dinner everyday by people who volunteer and other organizations. It i's still difficult to get a routine down on giving his medication and trying to get sleep is definitely hard to maintain some type of balance. He is on about 16 medications and we administer about every 3-4 hours. We also are trying to get a routine to take his vitals every morning and night, his heart beat and respiratory. We have doctors appointments once a week and they adjust his medications so we are trying to get organized and make sure we have the right dosage and times. Each clinic visit is not easy, he has to get a blood test before seeing the doctor, so we have to wait to get seen by lab. Then we go into the doctored office, nurse takes his vitals and weight and then we get an EKG. After that we meet with the nurse again and then wait to talk to the doctor. Then when we after we discuss any concerns we have, we head for an echocardiogram. After that we hear back from the nurse about his lab work and then discuss any changes to his medication. Then after that we have speech, physical, occupational therapy afterwards. It varies each visit, but it definitely takes a lot out of us when his doctors visit are done.
Plus leaving the house is not easy, we always forget something. It's not only getting a baby bag ready, we have to get his feeding tube, formula, medications, stethoscope, etc.... It's a lot.
Since Miles is still fresh from surgery he is still considered to be in isolation because of his immune system so we would like everyone to please understand that we cannot have visitors. Miles cannot be in a room with more then 5 people. Any type of sneeze, cough, or runny nose can seriously effect him and end up back in the hospital. We want to do the very best for him so please respect our request. It's not just hard for others but its hard for us to continue to give him the best of care. We knew it was going to be hard to take care of him after surgery, but this is super hard. It's like being home again with a newborn but 100x more difficult and stressful. Every breathe he takes and cry, we always wonder "is he ok?"
Lurie Children's will forever be our second home so it will definitely be a learning process to get a rhythm of this. After 6 months he will be okay to be seen by several people butler likely after a year from surgery he will definitely be okay to be around more people. We are forever grateful for everyone's prayers and support. I can not thank all if you enough!! It's truly a blessing what he have been through and I believe it was defintely the power of prayer.
Again, we are trying to do our best and learn the best way to take care of Miles and this will be an adjustment for the rest of his life. He is definitely a special baby who needs all the support and love to get him through this time. It is really up to us to make sure the heart is being accepted to his body and that it keeps it. Please keep praying for him and the other families who have to go through this. It's is very difficult to see other children who are still waiting for a heart or in a worse situation like Miles. We are so blessed Miles is strong and pulled through this. We will also continue to have fundraisers for Miles so please keep checking in.
Many thanks to our family and friends and also to strangers. We are over whelmed with support and we will always remember your prayers and donations.