Out of Sorts

Last week I mentioned briefly that Travis would be having a tonsillectomy this week. They also performed an uvulopalatopharyngoplasty, (UPPP). I am getting the red underline telling me that I misspelled this word. I checked it twice.

Travis has been dealing with several chronic health issues. Five years ago he underwent a sleep study. The results were a bit scary. He was diagnosed with sleep apnea. The results showed that he stopped breathing several times each hour.

The doctor prescribed a CPAP (Continuous Positive Airway Pressure) machine. A CPAP machine uses a hose and mask or nosepiece to deliver constant and steady air pressure.

I worked hard to persuade Travis to use the CPAP. Adjusting to using a CPAP is difficult for the average person. Imagine how hard it would be for someone with extreme sensitivity issues. He was unable to tolerate the feelings of confinement from the face mask. He tried several different styles. His face also showed signs of irritation.

Not only was I not there to remind him to put it on at night, I was also not there to clean the hoses properly. Travis has had several bouts of bronchitis, and has been diagnosed with pneumonia on two occasions as well. I didn’t realize at the time that a hose and mask that are not well maintained can lead to bronchitis, respiratory and sinus infections, as well as pneumonia. His illnesses may have been related. Travis is a smoker, so there is that as well.

Another problem with using the CPAP is that Travis oftentimes falls asleep in his recliner. After sleeping there for a few hours, he would get up and head to bed. The CPAP machine records data and reports it to the provider. It was determined that he wasn’t wearing it for enough hours each night to warrant shipping of the supplies.

In the end, it just ended up collecting dust.

A few months ago Travis’s doctor ordered blood work. He does this on a regular basis as Travis has crossed the bridge from being considered pre-diabetic to having Type II Diabetes. He also orders tests to make sure other medications that Travis is prescribed are not damaging any organs.

Travis’s most recent blood work showed elevated red blood cells, hemoglobin and hematocrit. The doctor explained that Travis’s bone marrow was producing extra red blood cells to compensate because his body was not getting enough oxygen. He suggested that Travis participate in a sleep study. I explained that we had already had one done and that Travis was unable to tolerate the CPAP machine.

The doctor took a look at his throat. He was surprised to find that not only did Travis still have his tonsils, but that they were extremely enlarged and inflamed. He wanted to know why the ENT (Ears, Nose and Throat) doctor that ordered the sleep study five years ago did not remove Travis’s tonsils at the time.

I was unable to give him a good answer. All I know is that the topic never came up. Maybe Travis’s tonsils weren’t in as bad of shape at the time?

The doctor shared with us that Travis needed to have his tonsils removed. And that the recovery is much more difficult as an adult. Which is the only piece of the entire conversation that Travis latched on to. He referred Travis back to his ENT to have a look.

The situation was a bit complicated. Travis’s primary care doctor is in the UC Health network. He can see everything that Travis does within that network in this system. The ENT is in the Banner network. They have a separate system.

The ENT took a look and agreed that Travis needed to have his tonsils out. And his uvula removed. UPPP, (I don’t want to spell it or type it again!), is a surgical procedure or sleep surgery used to remove tissue and/or remodel tissue in the throat. These tissues include the tonsils and adenoids. UPPP involves removal of the tonsils, the posterior surface of the soft palate, and the uvula. In the US, UPPP is the most commonly performed procedure for obstructive sleep apnea.

The hope is that with Travis’s airway being wider, his breathing will become easier. My hope is that if Travis is getting a higher quality of sleep, he will feel better. Maybe lessen his depression a bit? Be good for his overall health?

The doctor was able to get the insurance to approve an overnight stay in the hospital. Coronavirus, (we call it Rona), complicated matters. I was allowed to go in with Travis for the pre-op routine. I am glad I did, because as Travis’s legal guardian, I know his complete medical history. Unfortunately, I was not allowed to go in during recovery. Travis was in the recovery area for three hours. The nurse shared with me that the doctor forgot to put the overnight stay orders in the system. He was in another surgery that would take a couple of hours.

The doctor did come out and talk to me after the surgery. Everything went well. We did talk about Travis spending the night. He asked if he needed to write a prescription for his regular daily medications. I said I had them with me. I was happy to use the ones he already had. Later we found out from the nurse caring for Travis that they are not allowed to give him medicine from home. Weird, right? Why would he ask me if he should write a prescription?

I was told on multiple occasions that Travis could have only one visitor for a total of 90 minutes. Thanks to “Rona”. I did stay a bit longer, but wanted to be mindful of the rules. The nurse did say that she would contact the doctor to get the medications figured out. I gave her the list. Tracy waited in the car while I visited.

The next day we went back in the morning. The understanding was that he would stay one night and be released the next morning. When I checked in I overheard the staff member taking temperatures tell the woman in front of me that visiting hours were over at 6pm. When it was my turn I asked about the 90 minute limit. Apparently that had been lifted a couple of days before.

When I got to Travis’s room I asked the morning nurse if they were able to give Travis his medications. She did not know what I was talking about. In the system it did not show that he received them. Deep sigh. I asked about the 90 minute visitation rule. If I had known it was lifted I would have stayed with Travis until 6pm. And seen to it that the medication issue was addressed. She said the surgery staff must not be aware that the visitation rules had changed.

I arrived at 10:30am. Travis was hungry. The morning nurse had assumed that Travis knew he could look at a menu and order at any time. The night nurse hadn’t shared that she helped Travis decipher the menu and pick from the liquids section. I immediately showed him the correct part of the menu and how to dial the extension.

I was disappointed. I was very supportive of Travis spending the night because I thought he would be in better hands. I had concerns about managing his pain, and how the pain medicines may interact with his regular medicine, and his mental health. I began to wish that I had just brought him home after the surgery. Not all of the confusion could be blamed on “Rona”.

Travis is currently staying with us. It has been as difficult for him as all the stories we heard over the last week of people that had their tonsils removed as adults. I bought the Sam’s sized box of pudding and Otter pops. The bucket of rainbow sherbet. Lots of broth… We had a bit of a scare when Travis began coughing up blood. The on call doctor had him hold ice water in his throat again and again until it stopped.

Thankfully it stopped because the next step was to take him to the ER for another surgery to re-cauterize. What a nightmare that would be!

During this time Travis has been unable to smoke. Not only is he going through nicotine withdrawal, he is also going through gaming withdrawal. Because our wifi sucks. Lol! Being in pain. Not being able to eat.

Travis is “out of sorts”. As much as he enjoys coming here when he needs to take a breath, he is a person of routine. He misses his home, he misses his cat, Alsoa. He misses his tribe.

Can you say a prayer for him? And while you’re at it, can you say a little prayer for me. And Tracy. (Are you singing the lyrics in your head? The moment I wake up, before I put on my make-up, I say a little prayer for you.”

Thanks!! We are beat.

“Caregiving often calls us to lean into love we didn’t know possible.” - Tia Walker

“God grant me the serenity to accept the people I cannot change, the courage to change the one I can, and the wisdom to know it’s me!” - Author Unknown