Neurology multidisciplinary appt

This appointment was scheduled only 2 months after the last (April 21) because we didn't want to wait too long to check Jason's weight and to touch base with the team. We saw several team members, but I'll touch on the items that needed attention.

Weight: Jason has gained close to 2 pounds in 2 months by doing the change in tube feeding back in the beginning of May. This may not seem like much, but remember that he lost 20% of his weight in a 3 month period. So, not only has he NOT lost any, he put on 2 pounds. This proves that the feeding is adequate. He has also tolerated the full tube feeding for 6-7 weeks :) He has no complaints in the GI area at all. When we did bolus feeding, he did have some issues, so all is well. All vital signs are also good. For the first time since BEFORE Jason got the trach, his heart rate is less than the 120s. Maybe these antibiotics that we started 8 weeks ago are working.

Sores: We see a home health nurse every week at home. She comes by to renew our supplies and to update measurements/pictures for the record. We can also use the information for documentation for insurance as well. Back on May 30, Jason went to a physical therapy/seating appointment to see if we could get changes done to his power wheelchair for pressure relief. We got an update on this order while at the appointment. The orders have been signed and the wheelchair representative should be able to fulfill the request through insurance and get to our house within the next few weeks. We also asked about getting a pressure reducing mattress in our bedroom. Using documentation from home health and the physical therapist-we are hoping that this will happen in the next few weeks as well. OH-AND they are all improving. It is a SLOW process, but they are improving. Since the last post (Month of May) concerning these, one has completely healed and none of the wounds have eschar (dead tissue) in the wound beds!

Respiratory-we did see our favorite respiratory therapist, but he really just came in to meet Annalise! No interventions are done in the clinic because Rob, RT, comes to our house every 3 months to manage the machine. We also order monthly supplies via the telephone. He is too sweet-he brought us a new carrier case for the trilogy-after a year-that case was too dirty for my liking! A culture from one of the trach change broncoscopy cultures came back with a positive bacteria 2 days prior to our appointment, so a message was sent to our lung team. The response was that Jason's trach is just colonized, so no need to change the plan. Information on this: Colonisation vs. infection We will see the lung team for a broncoscopy and trach change on June 28.

Occupational therapy came in to review lifting techniques. This was important to support what we've been doing as I have not been able to lift Jason since the birth of our baby AND won't be able to do so for a total of about 6 weeks. Jason's parents have had to step in and do a 2 person lift technique and use our hoyer lift for all movements. Them being able to discuss and confirm all the techniques made everyone feel good about home life.

We saw a representative from the MDA association, research, nutritionist, nurses...

We saw a speech therapist and discussed our issues with Jason's computer-see blog on communication back in May. She has shown us a way to make bigger keys to hopefully help Jason "pick" the correct selection with his eyes, but honestly, it seems like a "band aid" and we hope to spend more time working on making his computer more user friendly for him over the summer as well.

We saw the doctor, of course who told us about the lung cultures. Otherwise, nothing new to report or change.

Our next neurology appointment is September 10 with a nurse practitioner. In the meantime, we hope to have all changes done to the power wheelchair as far as pressure relief AND possibly have a pressure relief mattress in the bedroom as well.