Yesterday was a big day and overall successful, however didn't pan out as we expected. I have now learned to expect the unexpected...nothing seems seems exactly how I've envisioned it. Not that it's a bad thing but when I have something pictured in my mind and then it changes, it's a little frustrating.
We arrived at the hospital yesterday around 11:30, we were in our pre op waiting room just before noon. Hunter played with some toys, bubbles and watched some cartoons all while the nurses, doctors, etc came in several times to go over Hunters medical history etc etc.
Dr. Rutter the ENT, wasn't too concerned about hunters rash, we think it's probably his mild eczema Anyways. The only concern was that Hunter just got over a cold in the last week and he was a bit concerned the single stage procedure (where they take the trach out at the same time) would be a bit too much on him, recovery wise. Single stage they would keep hunter sedated for approx a week with a ventilator breathing for him, and then slowly wean him off the meds and get him breathing on his own. From what I know from other parents who've been down that road is it's not fun at all and a very hard recovery. I did wonder why then he didn't ask if we wanted to reschedule for a later date if that was his only concern. Of course I forgot to ask before they had already started surgery with the double stage route.
Double stage is essentially the same surgery but the trach stays in while his new airways heals. A stent in holding the graft in place supporting his new airway while it heals. Then weeks down the road the stent gets taken out, followed by the trach being removed in 4-6 weeks. There are pros and cons to both ways of doing this.
I'm disappointed because I envisioned coming home trach free, but it's not the way it was supposed to happen and although I'm a bit bummed...the most important thing here (as Jeremy said to me) "we still have a very happy, otherwise healthy boy who doesn't care that he has a trach or not at this point". I thought how perfectly said that was. So whether the trach came out now or comes out in a couple months, it ultimately doesn't matter.
With the double stage procedure, he didn't have to go to ICU, he went right up to the Complex Airway Floor where he's been doing well. He's definitely in pain and we've been giving him morphine and Tylenol and those seem to help. Today he's been pretty sleepy, then wakes up irritated (understandably) then we get him situated again and he drifts off to sleep again.
Later today or possibly tomorrow we will attempt having him eat thickened liquids and see how he tolerates it. Some kids do fine other kids just don't tolerate the stent in at all and have a really hard time swallowing and get sent home with a feeding tube through there nose until it's time to come back and get the stent taken out. Hoping he tolerates feeding.
I will update more later..thanks again for all your thoughts and prayers..
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