We seem to have settled into a nice, normal routine again recently – if normal can include monthly flights to Minnesota 🙂 Isaac loves school, I got to go to his class Halloween party this week (he is THE cutest Buzz Lightyear ever!), and seeing him in action is still so much fun. Before he realized I was there I got to see him truly in his element – talking away and interacting with his friends. Seeing Isaac being normal still amazes me, he is growing up so fast and becoming such a sweet little man.
We did pay a visit to Isaac’s Dr. Carroll today – he’s been breathing funky this week and seemed a bit winded – it seems (at this point) that nothing major is going on – we’re stepping up nebulizer treatments and keeping a close eye on him. After the disaster of last winter (with frequent pneumonia) we tend to get a bit paranoid at the slightest sign of “sick”. Sometimes it’s hard to imagine Isaac getting a normal cold or virus – so often this turns bad for him so quickly.
While we visited with Dr. Carroll today I finally voiced my realization that Isaac will more than likely not be trach free this winter. It stinks, realizing it may not be in his near future – but the stars are probably not going to align for this to take place until spring. It is very difficult to get in with Dr. Preciado (I emailed his scheduler on Monday and have still heard nothing regarding his next appointment), this is the first reason I see things taking longer. Dr. Preciado wants Isaac capped for 4 weeks before pulling the trach, it is not likely (based on Isaac’s history) that he will stay healthy enough during the winter to handle capping for 4 straight weeks – that’s just the reality of winter + Isaac!
I have to admit that I’m still pretty okay with this dragged out timeline – Isaac had a rough winter last winter, and we are actually seeing him get stronger and feel good – this may put him in a better position to get the trach out later.
Sometimes we just have to take stock and put things in perspective….. tonight I found out that another sweet little boy has gone to heaven – his mom has helped care for Isaac several times when he’s been admitted to Fairfax Hospital – and Everett is part of a pretty amazing family. His mom, Heather is one of the founders of a local group (Tubie Kids), kind of a support group for families of tubie kids. We heard about the group when we brought Isaac home the first time and have turned to them repeatedly with crazy tube questions, or frantic requests for G tubes! When I am exhausted, or at the end of my rope I think of families like Everett’s – his mom often worked a 12 hours shift in the Peds unit, only to return to Everett’s room (in the same hospital) when he was admitted there for a quick nap and a day of caring for him. They have three older daughters, two of them also have health issues. In spite of all they were given to handle his mom remained upbeat and positive – and she perservered. She didn’t complain, and has always been a great resource (both inside and outside of the hospital).
It sounds like Everett had a very good day yesterday, and passed unexpectedly – it’s hard to be upset about the possibility of keeping a trach a little bit longer when you think about families like Everett’s. It’s awful to watch Isaac go through what he goes through, but we don’t face the possibilities that so many other families face.
So, please keep the Allen family in your thoughts and prayers – they are facing an unimaginable task right now, hold your babe’s tight and appreciate every moment.