Jordan’s “Irons in the Fire”

Two weeks ago I was feeling so completely overwhelmed with all the details of Jordan’s care that I could hardly keep my head functioning right. I chose to write down the things that were swimming in my mind, and it’s no wonder I felt heavy-hearted! The list helped get it out of my brain though, so despite that the list looks long and overwhleming in and of itself, freeing up the brain space made it much more manageable!

Here are the pieces:

Feeding – consult coordinating Speech and OT (for g-tube) –  completed 10/19

                        DOES NERVE RE-INERVATION PLAY A ROLE IN HIS EATING?      

Jordan has been cleared for pureed foods and we are increasing those daily. The Speech and Language Pathologist will be finishing her report and sending it to school so they can feed him regular food at lunch. She is also checking with one of the ENT doctors about performing a vocal cord scope on Jordan to check the function there. Additionally, she will ask about cranial nerves and whether nerve surgeries would repair not only the 7th (facial) nerve but also the 6th which affects the swallow and vocal cords. If the sleep study comes out ok – showing no obstruction – it is also possible to inject collagen in the slow vocal cord to fatten it up a bit so the two meet better.

Nerve surgery – ENT and Duke Medical CenterWe are considering facial nerve surgery for Jordan. We have heard mixed reports, some kids have had fantastic results with the two-part surgery and others have had very little effect. We may contact one of the Nuerosurgery Residents (Dr. Grant) who helped with Jordan’s first surgery and now works back at Duke. He is a colleague of the best facial nerve surgeon in the country, Dr. Marcus. We would be able to do a consultation across the country through the sending of medical records and current video of Jordan’s facial movements.

Hearing – Audiology & ENT – deciding on surgery (BAHA), but need to know if he’s a candidate. Does the source of the loss matter? Audiology completed on 10/6. Ent scheduled for 11/17.

              – Audiologist recommended not only the classroom FM system but also the personal FM system (microphone on teacher goes through headphones to Jordan instead of just an amplification through classroom speakers). Questions remain as to whether the nerve that enervates the ear can be tested and if the loss is neural or cochlear in source. We have to wait until the ENT appointment to figure out his candidacy for certain.

Recurrent Strep – Sleep Disorders Clinic – Sleep consult was completed on 10/7 with Amber McAfee, ARNP (one of Jordan’s former floor nurses in 1998-99)

Sleep – Sleep Disorders Clinic, Pulmonary Clinic – The plan following the the sleep consult included the following: 1) Obatin sleep study (scheduled for 1/26, but due to urgency of Jordan’s case he was placed at the top of the cancellation list. The study was completed on 10/13.) 2) Follow-up after sleep study with results and recommendations will be done with Dr. Luke Hoffman (Currently on staff with Children’s Pulmonary Dept., he was a resident that worked with Jordan during his chemo days!).

An brief exercise tolerance test was conducted during this clinic appt. With mild exercise of walking the halls of the clinic, Jordan’s heart rate jumped all the way up to 144 BPM (target heart rate with exercise for his age is 131). We will be discussing this issue with Dr. Hoffman and possibly heading to cardiology…

Pulmonary – f/u on sleep study, and pulmonary work-up – We are working with Dr. Hoffman to get this scheduled. When I called the clinic they told me to call back in a few weeks because he was scheduling into next year and they didn’t have the next year’s calendar in their system yet…

School – hearing, vision, comprehension, time in Intensive support vs. general education room – Ongoing. The school is having discussion with Audiology about the personal FM system, silent reading time is being replaced with audio books/DVDs, and Jordan alternately likes or dislikes his mainstream teacher. Comprehension has become an issue in that he does short passages adequately but if he is given a chapter he has a much harder time summarizing at the end. His new IEP will be done in mid-Nov.

Vision corneal scar – Saw Opthamology 10/23. Dr. Caderra is pretty impressed with the healing that Jordan’s body does, and despite the fact that he currently has decreased sensation in his left eye (which makes healing slower) it is possible that in a couple years we could consider a corneal transplant or graft so he could see better from that eye. The doc could hardly believe that Jordan can now close his left eye at will and the corner of his mouth also pulls up slightly!

Physical therapy – exercise intolerance? addressed above, still in progress with Pulmonary. HippotherapyTherapeutic Riding. Jordan has been on the Little Bit Riding Center’s waiting list for 2-1/2 years. Vestibular therapyDid 6 sessions in the spring

Vision therapynot done, not covered

Neuropsychologist – Dr. Martin. Counseling, processing – Still considering this

Caregiver – Need to find one – Playing phone tag with an agency

DAFO ankle splints – in process – Been cast for new ankle braces with a little more support; awaiting delivery

Bless you if you made it all the way through this! It’s not very exciting to read, but it is our life!!

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2 Comments (+add yours?)

  1. Aubrey Cranson
    Oct 25, 2008 @ 00:31:11

    Oh my goodness! Honestly, I think I would be walking around with a little handheld recorder and just start taping my thoughts instead of trying to keep them all in! You are amazing to me with all you juggle on a daily basis. I’ll be praying for you guys.

    Reply

  2. Gramma
    Oct 27, 2008 @ 13:21:19

    That’s a lot of stuff to handle, Steph! Yet it sounds like there are some good possibilities for Jordan’s ongoing benefit and I’m so thankful his doctors are making some solid suggestions. And maybe there’s a chance he’ll be seeing Dr Grant at Duke? aka a possible visit to Gramma and Gampa????Woo hooo!!

    Reply

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