MP 37

Annie: I’ve had it in my planner to do an update for a couple of weeks now…here we go. On June 7th Matt got to reduce the steroid more from the week prior and also had a virtual appointment with his oncologist. She was very pleased at the amount that the tumors in the brain had shrunk and assumed that that was also taking place in the rest of the body. We asked about whether or not Matt still needed to have the PEG (feeding) tube since he hasn’t used it for anything since May 21st. She said that it’s a soft call, but maybe too early to decide since he hasn’t had any chest CT scans since early May…so it could come out if it is really bothersome and if it fell out (yikes!) there wouldn’t be any real need to get it back in…she’d prefer to wait until Matt gets his yet to be scheduled next chest CT scan.

Later that same day Matt met his new primary care doctor. She’s a native Portlander too! Not knowing the hospital/clinic campus very well I took us to the wrong building initially so Matt had to do quite a bit of walking with the walker which he tolerated well enough.

The next day (6/8) Matt’s mom came back into town and we went up to the Bellevue Botanical Garden–we highly recommend it. He left his walker in the car and opted to hold onto my arm for reassurance. We walked slowly and took sit breaks. It was a lovely time to do something normal.

I told Matt that an outing like this would probably get us “kicked out of” eligibility for home health and what do you know the next day (6/9) Matt graduated from home health physical therapy. He got some more advanced balance exercises to practice and was told that he probably didn’t need the walker anymore either. So, he stopped using it. Matt’s brother sent him the wooden cane he’d used while recovering from surgery on his broken foot. Matt used the cane for stability while doing solo laps around our yard.

Wednesday the 14th the steroid got further reduced (yay). We’d noticed that he’d started to get a bit of swelling to his face and neck “moon face” which is pretty typical of being on steroids. Over the next few days the “moon face” subsided. On Thursday (15th) Matt got discharged from home health services by the nurse. A funny aside is that her blood pressure cuff and temporal thermometer never seemed to work anytime she’d come, so I always brought out my cuff and thermometer…I wonder what she did at other people’s homes. Her pulse oximeter and stethoscope worked just fine (shrug).

In the middle of the night (Friday early morning, the 16th), Matt had a little tickle cough that woke him up. He sat up and took a swig of water and started coughing immediately and violently (causing a little bit of a bloody nose too). He tried another sip and had the same experience–clearly the water had gone down the wrong pipe! He kept coughing for at least the next hour–wet, gurgley, foamy, phlegmy coughing. We both googled quite a bit about what could be happening and my legs started to shake with adrenaline and I got lightheaded. The coughing finally subsided sometime in the 3am hour and Matt was able to fall back asleep after I set up a wedge pillow for him to raise his torso up. I didn’t really fall back asleep.

Always an early riser, Matt got up before me and had a few more wet productive coughs. He got some more water to drink and had more coughing. He took his temperature too. I woke up to a ding from a group text sent to me and the home health nurse by Matt. He told her that he couldn’t swallow without coughing and that he had a temperature of 100…”should I go to the ER?”. Her reply was, “Yes.”

I jumped out of bed and asked Matt for all the details on what he was experiencing. I retook his temperature and it was 99.6 and again and again until it was in the 98.7 range. I ended up calling his primary care doctor to see if we could get in there since it didn’t seem as dire. The coughing didn’t happen immediately with a swallow but was delayed by 5 to 45 seconds. We were able to get an appointment for the morning with another doctor in the group for 10:40am.

At the doctor’s office Matt’s oxygen saturation level was 91–which is on the low side, but everything else was fine. Lungs sounded clear too. I asked if the doctor could recheck his oxygen level and she did. At first the machine read 88 and I asked if the machine could be malfunctioning. The doctor checked herself and it also read 88–yep malfunctioning. She got another machine and pretested it on herself and a nurse before bringing it to Matt. He got a 92. Still low. The doctor ordered a chest x-ray be done. She thought it would be too early to see if there was pneumonia from aspiration (getting liquid/food etc. into the lungs), but it would be good to check. She also thought that getting a modified barium swallow study might be needed at some point. She sent us off with instructions to go to the ER if Matt’s oxygen level goes below 92 consistently or if he spikes a fever of 100.4 or higher or if he has worsening shortness of breath. She let us know we could get a pulse oximeter at any pharmacy for home use.

We went to the car and called to get the x ray appointment set up for 1:20 pm. On the way home Matt suggested we stop at the pharmacy near our home to get a pulse oximeter. At home, he kept getting readings in the high 80’s, but even down as low as 85. I checked myself too and got 97. The doctor called us with the results of the x-ray saying that because there are many “hypodensities” (tumors), it’s too hard to tell if anything else is going on. She had also called Matt’s oncologist and they both agreed that because Matt is at a higher risk for potential infection/complications that he would be put on a 5 day course of two antibiotics as a precaution. I asked her how accurate home use pulse oximeters are since Matt was getting readings in the 80’s and she advised…go to the ER. I got off the phone, took Matt’s temperature…100.4. Off to the ER we went.

It wasn’t busy (thankfully) so Matt was triaged quickly and given nasal oxygen right in the waiting room. I had brought the oximeter with me and Matt was now reading at 97! Oh wow. He had blood drawn and they wanted to “culture” it to check for bacteria in the blood stream (his temp was now 99.4). His white blood cell count came back slightly elevated so they did start him on IV antibiotics and classified him as “septic”. He failed the nurse’s bedside swallowing test (more wet coughing after taking several sips of water in succession) so she said he shouldn’t eat or drink until an SLP had done an evaluation.

Side note, yes, I’m an SLP. Yes I learned about swallowing (and disordered swallowing) in depth and even did a clinical placement in an acute care setting where I participated regularly in bedside swallowing evaluation and modified barium swallow studies. But that was 16 years ago…I’m knowledgable, but it’s not my area of competence anymore–gosh it would be really handy right now.

Matt was admitted to the hospital and I was able to help with the transition to his new room even though it was past visiting hours. He was still given his normal medication to swallow with water and continued to have some coughing after swallowing. He wore nasal oxygen continually (2 liters of oxygen per minute) and the plan was to wean him off of it as his oxygen saturation levels improved. I eventually went home alone and as I unpacked my backpack and repacked an overnight bag for Matt I had a big, snotty, and cleansing cry.

I woke up (well, I didn’t really sleep all that great) to another text alert. Matt’s oxygen saturation was in the normal range and his temperature was normal too (praise the LORD). I brought the tube feeding supplies to the hospital (from the back of the cupboard…unused for nearly a month) knowing that Matt was not supposed to eat by mouth. Eventually the doctor came by and said Matt’s white blood count was normal and he was no longer in “sepsis” and just being treated for hypoxia (low oxygen) and being given antibiotics for “potential” aspiration pneumonia. He said that the SLP would come by to do the bedside swallow eval…but the nurse had already said that she didn’t see that an SLP was on for the weekend.

Aargh…how do I get my skills up to snuff really quick?!!

So, we have now returned back to tube feeding to reduce the risk of getting food and drink into Matt’s airway, bummer. He’s still taking his meds by mouth with sips of water (water is the least likely liquid to cause bacterial growth–well maybe vodka, but we’re dry these days). I suggested a few strategies for swallowing and doing a chin tuck swallow with a short cough and immediate second swallow seem to help remedy water going the wrong way. Over the morning Matt’s oxygen level continued to improve so that he was able to go down to 1 liter per minute. He faithfully did his PT exercises and we saw his oxygen level rise even more, like even to 100%. We had been cautioned that moving around (like to go to the bathroom) would make his level dip down, but nope, we saw the opposite. When he was relaxed and snoozing (and snoring) his level would hover at 96–still just fine.

Around 2:30 the oxygen was turned off and Matt got to remove the nasal oxygen–well I had to free him from it since I MacGyver’d it to stick to his face–original product design failed to keep it in place. His oxygen saturation maintained at 97 or higher so he was also able to have the finger sensor removed. He was basically a free man aside from having to be stuck to an IV pole during antibiotic delivery.

I was able to leave the hospital for a few hours to run errands (i.e., give Faith a couple carrots) and give Matt’s mom and my dad a call. I’d been updating them through text all along and they had been so responsive with loving encouragement and prayerful support, but it was so good to hear their voices too. Returning to the hospital I took Matt on a little walk to the hospital lobby where they have a modern waterfall fountain.

He’ll be here overnight, but you can pray for: a swallowing evaluation to be done as soon as possible, getting good information from the SLP about how to safely eat/drink, no future problems with swallowing and a quick discharge from the hospital. Also pray for our patient endurance, encouragement and God’s supply to all our needs.