I'll first apologize for the silence...we initially didn't have access to a computer and then plans took a totally different direction and I had no extra energy(& limited time) to even try to explain what was going on. We are in Cincinnati...tomorrow Carson will go back to the OR at 9:05 am ET for the doctors to further evaluate his airway.
But let me back up, we had the first scope last Wednesday and we got basically the same report...we would go forward with surgery on Friday with a likely stent, possible graft, and stomal revision as necessary. Thursday, we did get to go to the zoo, and we had a blast (wow, that seems like a long time ago)!! Some of the boys' favorites were the baby cheetahs, the train ride, monkeys, penguins, polar bear....let's just say all of it!
Friday, we headed into surgery...first update was that they would be doing a rib graft (ugh, took a little air out of our sails) but then the last update we got (4.5 hours later) was that they did NOT do a rib graft. Long story short, they took a different approach. First off, they knocked Carson's two front teeth out during the scoping process (that just put a bad taste in my mouth to think of them getting rough with our baby). Carson now has a t tube (similar to a trach but it is a long open piece down AND up in the airway from his stoma with a port to the outside of his neck. (Its probably easiest to just google 't tube' to understand it). They did move his stoma down. The T tube takes the place of the stent...in theory this sounds great...you can put a cap on the exterior portion and then breathe out of your nose and mouth like normal. However, Carson has not been able to tolerate 'capping'. After a couple scopes (in his room), it has been determined that he needs to go back to the OR (tomorrow) and they will see WHAT is covering the top portion of the tube and then decide WHAT needs to be done. Although, Carson seems to be feeling better, less pain, etc. we are in a holding pattern until we see what they do tomorrow. Lots of things up in the air still...so more chances to put in all in God's hands (and these doctors') and just trust.
This stay has been harder for me...I thought I was prepared going into the surgery, but many little things along the way have tried to take that peace away. I have felt the range of emotion... numbness, peace, anger, frustration, hope, despair, but I do choose to just trust, take the next step next and stay in the moments. This is hard at times, because with this t tube, we have to administer a medication (sodium bicarbonate) into the airway EVERY 4 hours (through the day AND night). It is very irritating to the airway, it is scary for Carson, and causes a lot of discomfort as you have to cough a lot. Carson fights it more some times than others (& I really don't blame him). I don't blame Carson a bit but you can imagine the frustration that comes out in lots of unpleasant forms (he is at the mercy of the doctors, nurses, and us with little say in his care, he can't make much noise at all, he is stuck in a boring hospital room, and he has some pain). With that said, we are continually amazed at his attitude the majority of the time and his willingness to find joy in between medication times.
Prayers for tomorrow are appreciated...just for clear thought for the doctors and a good solution that allows Carson to continue on improving and get home. Prayers also that the Ronald McDonald House will open up (we were very disappointed as we thought we would be in there a WEEK ago and there is still no openings available...long story here but it did not work out as expected). Kellen and Mom have been staying in a hotel. Prayers for all of us to just take one step at a time, finding the joys in each day, the miracles amongst the pain, and peace that God only gives.
I will post pictures as soon as I can. Thank you so much for the many prayers (& I hope this makes a little sense...its a lot of new info, even for us!
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