I cannot honestly say it has been a perfectly smooth transition into the g-tube world with Kiran, but we are definitely transitioning. I had a couple days that were quite overwhelming last week – I even asked my mom to come spend the day with us one day, which is a huge deal, for me to ask for help.
I am getting the hang of it. We added an overnight feed to our schedule, which allows us to only have to fit in four bottles during the day instead of 6. Our days are less hectic and more full of other things, and that feels pretty darn good.
Kiran’s sleep has been quite disrupted by something. Before we went in for his g-tube placement surgery, he was sleeping pretty well through the night. He would wake up around 3 am needing a diaper change (darn Lasix pee!), but he would go to sleep quite quickly after that. Since we have been home from the hospital, he has been a lot more fussy. He will often wake two or three times throughout the night. Instead of it being as simple as going in and putting the pacifier back in his mouth, I often find myself going in 3-5 times with every wakeup before he finally settles back into slumber. I don’t know if this is just because his routine was disrupted with the hospital stay, if he is still sore recovering from the surgery, or if it really is darn teething this time! (It seems so, but haven’t I said that before!?!)
We saw Kiran’s cardiologist this week. Not much has changed, but he feels we have a good case to present to Stanford in moving the timeline of his surgery up from December. His heart is enlarged, his lungs are overcirculated or wet, and his oxygen saturation levels are climbing – all of these things indicate he really will not be stable until December. Dr. M. said especially the overcirculation in the lungs – if left this way too long, it can cause scarring. I hope Dr. Hanley’s surgical team at Stanford will listen and take us seriously. I keep telling myself, when it comes to this situation “Trust the process.” I hope I am right in doing so.
The early access vision person was in this week as well, and Kiran has moved up another two points on his visual assessment! He has had a steady increase of two points every month since she started coming. This is great news – slow and steady progress! I am still anxiously awaiting our full day at the genetic eye clinic in Iowa City in early July … I hope this time we really will get some answers!
All in all, things have been going pretty well over here as we get used to yet another change in our routine. We love getting to see Kiran’s full handsome face with no tape and no tube in his nose!