Update on Jacob

[JacobKaden]

First, thank you so much for everyone's support during this very traumatic ordeal. I sincerely hope that none of you EVER have to endure something like this with your child!

Jacob's ENT scoped his throat yesterday. The good news is he has no granulation tissue, the malasia is definitely resolved and the right cord is definitely working as it should. Because the left cord is fixed in the midline position and totally paralyzed, he believes his airway is just not big enough yet to allow his right cord to protect his airway on its own. The plan - time, growth and development. He does not want to consider doing any type of intervention on the left cord yet, because that will definitely decrease his voice quality and may cause aspiration. He also said there may be some things they can do to stimulate the left cord, without surgery - I did not know this, so this is encouraging.

He would rather Jacob's airway grow naturally, as his voice quality can become "quite good" with one cord, as long as his airway is big enough.

The "down side" - he will not even consider scoping him again for 12 to 18 months and more likely 18 months. As we know, airways do not grow all that quickly. At the end of the day, I am just so grateful Jacob is alive and breathing comfortably again. As challenging as it's going to be with his growth and development and our day to day lives, I know we will find a way to manage. DH and I realize that we have to just "get on with our plans/lives", knowing the "trach" will be a part of it.

We feel like we've been in "taxi mode" for a while and now all of us have to "take flight", with the trach. Knowing we can't do a whole lot about verbal communication for sometime, as they upsized him to a 4.0, so won't be able to use a PMV until he grows some more. I was not happy about this, due to more speech delay, but for safety reasons, he needs to be able to breathe well on a half size smaller trach, in case of emergency and he needed to be vented on a 3.0, which had been our half size smaller Thank God, we never needed to put a 3.0 in during an accidental decan - we would have freaked! So, a 3.5 has to be the "back-up" trach. We are going to focus on getting him out more, social stimulation, and lots of OT and PT.

For ourselves, we are going to focus on buying a new home that will accommodate Jacob's needs and getting DH back to work. Thankfully, Jacob is much more medically stable than he was a year ago, so we both believe Jacob can be cared for part time by his nanny, while DH works part time. I also think this will be good for DH. He's been doing this full time for over a year now.

He "may" be discharged today. If not today, then definitely tomorrow.

[alizesmom]

No real comment, just thinking of you guys. Karen

[faywrayy]

Kim, I admire your strength. I can put myself in your shoes and I know that I'd figure it out somehow, but I think I'd be wallowing quite a bit right now. You're a strong woman and you have a plan that sounds like a good one. I'm thinking only the best thoughts for you and dh and Jacob.

[suzanne2545]

You must be just drained, Kim. Hugs. Suzanne

[Ann]

Thanks for the update. I'm sorry things didn't work out as planned (do they ever?), but it sounds like you and your husband have the right attitude. I really like your analogy of having found your wings. It's so true that you have to try and enjoy the here and now because none of us knows what tomorrow will bring.

[T-bone]

Oh Kim, I am so sorry about all of this.
I hope that he gets to come home soon.

Just take it one day at a time.

Love,
Tess

[drct1245]

Kim,
What an exhausting 24 hrs. I am glad everyone is doing better. Good luck to DH as he enters the work force again. Ayden actually has a 4.5 and does a lot of talking, so there is hope that Jacob will be able to make sounds down the road.
thanks for taking the time to update us....

[JWorthington]

I am sorry things didn't work out as planned, but it's good that you are planning your future and it will do dh good to get back out to work. Good luck

Julie