Summer Days

Noah has been home for a couple of days now and we are trying to get as much enjoyment out of these last summer days as we can. I'm hoping for some nice hot weather yet! Noah loves the outdoors and spends lots of time in his swing or just sitting on the deck watching Kailyn & Joshua play. I am trying to just let go of so many things around the house and the yard that sit unfinished. Perhaps in another season of our lives they will become important again, but for now, family is our number one focus. I still haven't completely unpacked my bags from the hospital and it seems like I will never be able to. All the plans we make these days are very tentative as we know it is not a matter of if, but when the next ER visit will be. We are getting used to living life in crisis mode and unfortunately, our kids are getting used to hearing "if Noah's not in hospital, then maybe...". I know it's hard on them and they know far more about hospital life than any child should, but for them, this is the norm. I'm not sure any of us would know what to do with ourselves if things settled down for good. And so we just try to pack in as much as we can while Noah is at home.

In hospital we stopped Noah's tube feedings completely to give his gut a rest for a while. He seems to do better with tolerating his feeds if we rest his gut every so often. And he is always so much happier when we don't feed him. If only I could trade him my love of food for a while!! So we are doing full TPN 18 hours a day. This means he is fed everything he needs directly into his veins through his central line (technically the line he has right now is called a PICC). The tricky part about this is that for those 18 hrs each day, he is not very portable as he is attached to a big double pump and an IV pole. His time off is from noon until 6pm, so we try to plan our day around that time. Because of his hypoglycemia issues, right now this is the most time he will tolerate off the TPN. Next week we have an appointment with the Rehab Center for Children to see what they can come up with so we can attach his pumps to his stroller. The good news is that for now, Noah's liver seems to be tolerating the TPN and his triglycerides that were an issue before, now look great!

Because of the new clot Noah developed in July, we have to continue to anoxyparin injections twice a day until October. Noah is also on IV antibiotics again every 6 hours for another 4 weeks that we give him here at home. Once his antibiotics are done, he will have to go back into hospital for another surgery to reinsert a new more permanent central line in his chest, likely around the end of September. (IF we can get this line to last that long!) During that hospital stay, Noah's GJ tube will get reinserted as well and we will try to restart some tube feeding.
I've included some pictures of our last few days. Some of Bison Transport family day at the Winnipeg Stadium (Noah was not impressed with the dressed up Bomber characters), and our afternoon visiting Aunt Bertha in Steinbach.

Once again, a huge thank you to all of you who have been praying faithfully for us and for all the support we have recieved these past months. Thank you for the meals delivered to our house and for the coffees and treats brought to me in the hospital. We appreciate the reminders that we are not alone in this journey.