JUST WHAT I NEEDED

Last night, we saw Jacob’s ENT doctor again. Dr. A. simply sat back as Jacob was showing off at the doctor’s office yesterday. Jacob was vocalizing, and in between he was flashing off his famous smiles! Dr. A said flat out that he would NOT trache him at this time. He admitted again that traching Jacob back in 2007 would not have been the right decision (something Dr. A was pushing for), and is not the right one now either.

He felt Jacob has way too many vocalizations that he would loose with the trache. He does feel that the “pulmonary toileting” (smart vest, nebulizer treatment, deep suctioning, and soon cough assist) we do 4 times a day seem to be working pretty great right now, and would just not do anything further at this point. The trache might be a step in the future, but not right now. Dr. A. didn’t loose his eyes from Jacob, and said “There are good and bad days, the good days are the ones that make up for the hard ones, especially the ones being really hard. As long as Jacob is acting like tonight, we will do whatever we can for him”. I was surprised, felt hope inside. A doctor had actually verbalized exactly how I am feeling about Jacob. Not all days are good, some are right out not good at all, BUT the good ones so make up for the bad ones, and that’s why we’re continuing the good fight.

It was not just a follow-up doctor’s appointment, it was so refreshing to have someone simply say what is on his mind, and give us some good advice. I am getting really tired about the trache discussion coming up all the time, but no one truly wanting to take a stand – only stating the pros and cons. We had the same old discussion with pulmonology this week, and it’s not helpful any longer. Tell me what you think! I know it’s not a straight-forward matter, and that’s probably why we all have it spinning in our heads – but I did leave ENT with a feeling that we will leave this matter alone for a while. Not forever, but for now.

We’re picking up Jacob’s therapies again. We added physical therapy to his OT, speech and music routine this week. We found a great therapist who is focusing a lot on stretches and massage, and oh boy did Jacob have a good time! He went straight to sleep after the session was done. We also had no idea how stiff his muscles are. In May, we’re planning to be back at the pool at Bal Swan again for warm water therapy! I think Jacob is ready.

This afternoon, we had two med students over. It’s part of their curriculum to visit with a family heavily involved in the medical field. We showed them Jacob’s care, and sat down and just talked about our lives and what we would like to see in doctors. They both left, so excited about their future jobs, and that they had met us. We’re living our lives, and by simply doing that, you can touch someone else’s life – like our dear ENT doctor last night.

Love, Maria.