MP 38

Annie: It has been a busy week! On 6/18 (Father’s Day) the doctor came to Matt’s room before 9am and said, “Let’s get you outta here!” Matt cheered, “YES!” with his arms flying up in celebration. The doctor then asked, “How has your eating been going?” and our reply was suddenly sullen…”he hasn’t been eating by mouth.” The doctor was surprised to hear that no SLP had come, so he assured us that he’d put Matt on the ASAP list for a bedside swallow evaluation.

We ended up waiting in the room till nearly 3pm, not daring to leave and perhaps miss the SLP. When the SLP came, I was impressed with her treatment of Matt as well as her ability to explain what she was doing. We told her Matt’s history of sudden difficulty with swallowing and my suggestions for how he could try to swallow more safely. She started with Matt having just an ice chip and he produced more wet sounding coughing. She stopped the evaluation right there and said that doing a instrumental evaluation would be more helpful for figuring out where the swallow is “going wrong” and to see if there are techniques or food textures that would make swallowing safely more probable. She recommended that Matt have a FEES (fiberoptic endoscopic evaluation of swallowing)–the same through the nose camera that he’d had in December 2019 (and in July 2022–which we hadn’t previously shared with y’all) rather than a modified barium swallow study because she didn’t want barium accidentally getting into his lungs given his compromised condition (aspiration pneumonia).

We questioned how Matt’s swallowing could have declined so suddenly and she mentioned that it’s possible that the accidental middle of the night and not quite awake yet aspiration of the water could impair the function of Matt’s lungs and set up a chain reaction of the timings being slightly off for breathing with swallowing…we are praying that that is what happened.

Knowing that we had the formula supply and knowledge for how to continue doing PEG tube feedings, we opted for getting discharged and setting up the outpatient evaluation for later. I stopped by the pharmacy in the hospital to pick up the 5-day course of antibiotics and asked the pharmacist about how to correctly prepare the tablets (and Matt’s other medications) for being put through the PEG tube. He got me a tablet crusher device and gave me some tips on it as well. When I remarked, “it’s only 5-days, I can do this!” he smiled in surprise at my positivity and said that he rarely hears things like that from his patients.

It was a relief to get back home and a tangible reminder of God’s providence that Matt hadn’t yet had the PEG tube removed and that I hadn’t yet found a place to donate the extra supply of formula. It was also a bit discouraging that Matt’s increasing independence had been rolled back–he still relied on me for all driving, setting up appointments and communicating with providers, and he now needed me for all meals, meds and hydration too.

On Monday, 6/19 Matt said he was feeling a little depressed and asked to go with me on my errands. Quick trips into PetSmart and Target were on my list, so for the first time since December 2022 or perhaps early January 2023 Matt went into stores. We enjoyed being out and being together.

Throughout the week I diligently took Matt’s vitals in the morning and evening. All good. We’d get especially excited when his oxygen saturation (often a 97) hit 99! Matt was given a spirometer by his night nurse on 6/17 for him to work on improving his lung volume–he inhales against a little bit of resistance and tries to keep the blue bead floating between the arrows. He kept up with using the spirometer and worked to make gains. He’d frequently comment on what his level was in terms of the height and age of a woman (e.g., ‘I have the same breathing as a very short 60 year old woman’)–he didn’t yet have the lung volume on the men’s scale. He began to have more “productive” coughing (some yellow, greenish phlegm) in the early half of the week which told us that doing the antibiotics had been the right call as well.

On Wednesday 6/21 we went back to the hospital, this time for a planned EKG. It was a very quick test–it took longer to set up the electrodes than the 10 seconds it took to capture Matt’s heart rhythms. The tech said that it looked like a nice normal rhythm, but that the cardiologist would review it and send the results onto Matt’s oncologist. The reason we had the test done is that the anti-seizure medicine Matt is currently taking has a potential interaction effect with the targeted anti-cancer medicine he’s on which could cause heart issues (too slow a heart beat necessitating a pacemaker). We will eventually get an appointment with neurology to see if there is a different medication that would have less of a potential effect as well as to discuss the timing of decreasing and or ceasing the anti-seizure medication.

Thursday morning we had a 5-minute follow-up telehealth visit with the doctor that saw us in her clinic the week prior–she was glad that Matt was doing so much better. After that Matt made a list of 4 things he wanted to accomplish that day and on it was a haircut. He hadn’t had one since early February, so I grabbed this picture when the sides had been done, but before touching the top. He got the other 3 things done too.

On Friday evening we got to do our new Sabbath tradition of lighting a candle to remind of Christ’s presence (cute ceramic holder from IKEA), reading a Psalm aloud (Psalm 92 this week) and a short prayer too. We missed out on the candle bit last week with Matt being on oxygen and all.

On Saturday Matt had an eye doctor appointment and after all that busy-ness in the week we decided to go to one of our favorite nearby nature spots for some rest: Lake Wilderness in Maple Valley. We shared positive appreciation memories with each other, the initial step of the emotional healing modality Immanuel Approach/Immanuel Prayer by Dr. Karl Lehman. We’ve learned about this approach initially from Annie’s dear friends back in Portland and further through the book The Other Half of Church (Dr. Jim Wilder) and through the Face to Face Ministries podcast.

Through all the twists and turns of this week, we have enjoyed greater honesty and vulnerability with each other which has just made us love each other that little bit extra.

We’d like to get back into church community as soon as we can and have appreciated being able to at least watch a livestream of the service at Maple Valley Church. Today’s was especially heart grabbing for Matt as a guest pastor shared his health journey which Matt felt paralleled his pretty closely–and it also gave us both encouragement to let Christ shine brightly through us even though this season can feel bleak at times.

Just a few minutes ago, Matt hit his height and age target on the men’s scale of the spirometer for the first time!

Please pray for: Matt’s continued improvement in his lung volume/breathing, improvement in Matt’s voice loudness and stamina, Matt’s swallowing ability to be restored (FEES evaluation on 6/29), peace, clarity and the sense that Matt is listened to in our first in-office oncologist appointment (6/28)–and for normal healthy blood panel results. We’re really working at “being in the present moment” and waiting on God’s guidance, but we are humans with the capacity to plan (and get anxious), so we also ask for your prayers in our ability to listen to the Lord and discern wisely and for people to come around us who can speak God’s wisdom into our circumstances–at this point top of the list is future work.

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