We've been home from the hospital for a little over a month and a lot has happened! The first few weeks were a HUGE struggle. The idea of bringing home a fragile child like Matthew was very overwhelming (yet at the same time we could not wait to get out of the hospital).
One thing they told us was to keep Matthew away from germs at all costs. Well, the third day home Ellie came down with a cold, then Mark, then Amanda. Thankfully, Matthew was protected from it. We were also fighting the reflux battle during this time. Matthew would take a whole bottle and then kindly give the whole bottle back to us. Nothing like puke dripping down your back ;) Amazingly enough, Matthew was still able to gain weight at the rate they were hoping for (we weigh him every morning as part of his elaborate Home Monitoring Program). Our pediatrician has been very helpful regulating his meds for the reflux and we finally seem to be on the right track! He is eating like a champ and not crying through feeds because he is so uncomfortable. He is able to sleep because his belly is not bothering him and he hardly throws up anymore!! He's gained almost three pounds since we've come home!!! When Matthew's reflux is under control, he is a happy relaxed baby who likes to coo and smile - especially at his big sister.
Matthew has had many doctors appointments in the past month too, but thankfully they have all been in New Hampshire. His pediatrician (who has two other HLHS patients) says that Matthew is making progress in a number of areas faster than her other HLHS patients. Those things always make parents smile! His cardiologist in Manchester has also been pleased with the surgical results. People often ask us if the surgery worked and if he's "ok" now. Matthew's condition - and the surgeries - are very tricky. There is no single moment where we can say, "Ok, that surgery worked, he's ok now." As his surgeon put it: the further away we are from surgery and the better he's doing, the better it is, but these surgeries are not correcting the issue but are palliative. (Which leads us to believe things can change quickly, but we are believing for the best). The fact that he has not had any complications since we got home is a good sign for the future. He also has a visiting nurse come once a week, who is a super sweet lady and building a nice relationship with Amanda and Ellie. Matthew also has early intervention appointments beginning in the next week.
Needless to say life has been busy - especially for Amanda who is home all day with two kids and juggling all of these appointments and phone calls.
One of the biggest challenges has been keeping Matthew away from people. None of our doctors have wanted him in crowded public places, which has meant we have been doing lots of hibernating as a family. It's been especially challenging for Amanda because she is stuck at home a lot and missing some adult interaction. Hopefully, after the second surgery, he will be in a better place and we will be able to come out from our den :) But, we're willing to do whatever it takes to keep our boy healthy AND to stay away from extra trips to Boston. We'd appreciate prayers for continued health because 70% of HLHS patients are readmitted to the hospital prior to the next surgery due to simple things like a cold or the flu.
Speaking of Boston, we will be heading back to Children's in early November for a catheritization. This is a normally scheduled procedure before the second surgery and will keep us in Boston for a few nights. A week after the cath, Matthew is scheduled to have his second surgery (Glenn Surgery - click on the Achieving Fontan Circulation tab to read about the second surgery, which is called the Glenn).
It is overwhelming in a completely different way from the first surgery as we prepare for another stint in Boston. Thankfully recovery from this surgery in the hospital is - typically - much shorter than the first one. We'll post more specifics as we get closer.
We have been so appreciative of all the love and support from everyone. Please continue to keep us in your prayers - especially that Matthew would continue to do so well and we would have wisdom for how to best plan for our time in Boston (childcare, etc).