Recommendation from KKI

I hope this post doesn't sound negative, I really don't want it to. I am just utterly completely overwhelmed and unsure of everything after receiving KKI's final recommendation today.

We met with a team consisting of a doctor, a behavioral therapist, nutritionist, and a speech language pathologist. They asked us for Hudson's entire medical history, reviewed his records with us, and then the observation portion began. They watched us attempt to feed Hudson pureed baby food, and then watched him drink from his bottle. They watched a video I had made at their request of him being fed in his home environment. The doctor examined him, and then the team stepped outside to discuss their findings and form a recommendation. The entire evaluation took a little over 3 hours.

A little background on the program, there are 2 programs the team can refer a patient to if they decide treatment is appropriate. One is the day patient, the other is the inpatient program. Patients in both programs complete the same therapy Monday-Friday, but the inpatients have therapy Saturday and Sunday as well. Day patients get to leave the hospital at 5, and go to their homes/hotels, and are free for the weekends. I was REALLY really hoping they would refer Hudson to the day patient program, but no chance.

The team returned and said their recommendation for the inpatient program is based on Hudson's medical history and current feeding protocol. Since he takes no food at all right now, only formula, they want him to have therapy during the weekends as well. They are also concerned with his potential to decompensate rapidly due to mito, and they want his status monitored closely while they adjust his feeding/fluid intake. Inpatients are attended by doctors at Johns Hopkins. The team was pretty honest I think about their expectations for Hudson. They said they feel that they can get him eating, but how much or what of is very uncertain. Hudson has a history of being completely G-tube dependent when sick, and they said there's nothing they can do to change that of course. Ultimately the team said what his doctors in Houston did, we won't know what he or his body is capable of unless we try.

I am relieved that they think they can help him, even a fraction of an improvement would be huge for Hudson. I worry very much about the inpatient aspect of it though. We've done inpatient stays of course, but this is 8-10 weeks of intense therapy in a hospital when he isn't sick. Inpatients are given 4 hours a week of "leave of absence" to venture out into the city. The rooms aren't private, which is baffling to me, I guess good old Children's Memorial Hermann has spoiled us! I worry what being in a hospital for 2 months will do to Hudson, and to my sanity! The therapist reassured me that their days are extremely structured, in the hospital that is always the most challenging part when Hudson starts feeling better, keeping him occupied! I'm just overwhelmed at the thought of doing it by myself I guess, in Houston Jake is always there to rescue me. If it would be beneficial and improve Hudson's quality of life then I feel like we owe it to him to try. The wait list is 2-3 months, so a nurse should be calling us soon once a more firm admit date is worked out. Thanks for checking in on our little guy.