Annie: June 28th we had our first visit to the oncology clinic. Matt’s doctor said that clinically he is doing well and so she said he could stop taking the (nasty) steroid. His blood labs were pretty good too. Matt had been concerned that his hemoglobin levels would be down and so preemptively had been taking wheatgrass juice (through the PEG tube) to help and it seems to have done the trick! Hemoglobin numbers are heading back up near normal range. The oncologist scheduled Matt for 4 weeks later and wanted him to have a brain MRI done prior to meeting back with her on July 24th.
On June 29th Matt had the swallowing evaluation done. Two SLPs (and me as the third in the room!) performed the evaluation having Matt try small spoonfuls of water, some applesauce and crushed pear all dyed blue. They had him try some different chin positions while swallowing too. While it didn’t appear that there was any major difficulty with the swallow itself (a little weakness perhaps), upon having Matt clear his throat or voluntarily cough, blue residue was visibly coming from his airway. They stopped the evaluation and recommended that he continue using the PEG tube. One of the SLPs would thoroughly review, frame-by-frame, the video that was taken to see when and where the liquid and food was slipping by.
We got a phone call from the SLP later that afternoon saying that she had to really slow the video down to see that just before the swallow started, a little bit of liquid/food spills into the airway (where Matt’s paralyzed vocal cord is) and his body is not sensing it at the level of the vocal cords, but only further down in the airway. So Matt remains reliant on the PEG tube for all eating, drinking and medications. We scheduled an in-office follow-up to learn some swallowing exercises.
On July 1st we had an outing to nearby Clark Lake and Matt did the most challenging hiking he’s done in a long time. Such a beautiful place.
We had a tame Independence Day, watching the musical Hamilton and turning on all the fans/sound machines to drown out the fireworks from neighbors–to keep our senior dog from barking all night.
Our 17th wedding anniversary was on the 8th and we revisited the Bellevue Botanical Garden, now splendidly in full bloom.
Yesterday (10th) we had the follow-up with the SLP and Matt learned several exercises to strengthen the back of the tongue and throat, and also some swallowing-based exercises. The SLP is the most concerned about the loss of sensation that Matt experiences, not feeling it (i.e. coughing immediately) when something gets to his vocal cords. She recommended that Matt get on the waiting list to see the laryngologist at UW. Matt still has some residual coughing from having had aspiration pneumonia, but once that is resolved, the SLP thought that Matt could try moistening his mouth with an ice chip and see if that triggers any coughing with a swallow–to see if any sensation is returning.
This news is frustrating and disheartening, however, we are grateful that the PEG tube is still in place and that Matt is now independent with feeding himself that way–and he’s getting more efficient with it too. He has also mostly taken back communicating with healthcare and service providers.
On Friday morning (14th) Matt will have his first appointment with a neurologist–we have a lot of questions about the anti-seizure medication/side effects, risk of future seizure activity and brain/nervous system function. Too bad Matt’s MRI is scheduled for later that afternoon–it would be nice to go into the neurology appointment with that fresh scan.
Please pray for: Matt’s coughing to swiftly conclude and sensation/motor function be restored to his vocal cord, our appointment with the neurologist (would like for Matt to not need medication/or a reduction of medication/different medication–fewer side effects), Matt to be at peace during the MRI (and not cough)/encouraging results, Annie’s diligence in attending to her own physical/mental/emotional health, Annie’s seeking the WA state school-SLP license (this could open up financial/benefits options if needed), upcoming change to insurance August 1st (going from company paid COBRA to self-paid insurance).
Matt & Annie - Journey 