Progress Doesn’t Come Without Some Set Backs

Another week under our belt and not a day has been without action. We were really feeling hopeful Kyle would be getting closer to downsizing his trach and pushing on to swallow tests so he could attempt to eat or drink. But sadly, after a few days of walking 3 times a day, one lap each time, he started showing extra signs of fatigue. My concern grew during his second round of collar trials, because he never slept once in the 48 hours (same to his prior 48 collar trial).  I knew he was exhausted, and every time he started to slightly nod off I could see his oxygen saturation levels starting to nose dive. He would wake himself up by jolting a bit and this would just continue throughout the day. I raised my concern with the nurse letting her know that I started seeing a scary correlation between him being off the vent and not sleeping. She said she would keep an eye on it and express my concerns to the doctors. 

Later that day, one of the walks left Kyle feeling dizzy, and confused. He said he felt like he was in a bumper car as he started swerving all over the hallway on his roller cart. They then decided to cease the collar trials and place him on the ventilator so he could rest. I continued to feel like something wasn’t right. He kept falling asleep and having his eyes roll back in his head and then briefly became non-responsive to me. I kept trying to ask him where he was, and then he would say USA (which of course was correct) but then he would follow it up with “Party in the USA”. If anyone knows my husband they know that Miley Cyrus is not a typical musical choice for him. This response definitely raised a red flag. I pushed the nurse to contact the Respiratory Therapist. Once the Respiratory Therapist arrived they increased the sense of urgency because they knew Kyle’s normal demeanor. 

Once they took an ABG (arterial blood gas) to determine his CO₂ levels, PH, Oxygen Saturation, etc. They then determined he his CO₂ levels were extremely high. Not as high as before when he was in the 100’s but he was still on the higher end of 80’s. The doctors started showing more interest in his recent regression. Another blood test showed his Creatin levels had shot up to 1.7 which made for a concern with the kidney team. Now, with Kyle on the vent and his respiratory stabilized he was finally sleeping. They decided to check him out from head to toe to make sure they weren’t missing anything. They decided to put in an A line (in his leg) so they could more quickly draw ABG’s and monitor his CO₂ levels. As they started to place the A line his blood pressure drastically dropped and they had to give him a blood transfusion to increase his pressure as well as other medications to help aid the drastic decrease. 

Once they had stabilized him they decided to do an overhaul of tests: kidney ultrasound, heart EKO to check for hypertension, heart ultrasound, CT Scan to check lungs, MRI to check brain activity, bronchoscope, and ran blood cultures to determine if there was an infection they were overlooking. I felt a sigh of relief that they were exhausting every resource to find an answer to the recent issues. After they reviewed each test everything was coming up negative. Of course I was happy but I couldn’t help but be concerned with the lack of answers. Later the neurology team came to our room to discuss his recent episode, and they said the MRI showed signs of an acute stroke. Of course the word stroke, made me cringe. The lobe where the fluid had drained from his brain was most associated with low blood pressure. All of which made sense seeing as he had such a pressure drop the night before. The team evaluated him, and said there would be no long-term effects of the stroke as strokes are quick and show immediate signs. So any damage that had occurred would have already been done. To be extra pre-cautious they did an ultrasound at the base of his neck where he had the EKMO to make sure it wasn’t causing any issues. They said everything looked great. The doctors admitted they had no idea why he had experienced all the other symptoms and would keep a close eye on him.

The only irregularities I saw in him was his inability to hear out of his right ear. Of course he can’t hear out of the left ear due to a Mastoidectomy he had many years ago. So his inability to hear made for an interesting time. They contacted ENT (Ear Nose & Throat Doctor) to view his ear and they found that there was no nerve damage that they could tell, only some fluid in his inner ear, which they would treat with drops. 

We add Kyle's progress to the board everyday.

As a few days went by they kept him on the vent and continuously checked his CO₂ levels and placed him back on vent to rest whenever CO₂ got too high. He did this repeatedly which I believe helped him build up more strength. He was able to sleep on the vent much better. and started using his passy muir valve more which was very encouraging. His walks started increasing everyday. Over those days the team continued to review his stats and contemplated the option of using hyperbaric oxygen therapy to help his contorted left lung, and ischemic feet. 

Dr. Daneshmand decided it wouldn’t hurt to try the therapy. The only downfall of the procedure was he was susceptible to seizures in the tank due to his previous acute stroke. They told us it was a very controlled environment and they would be able to assist with any emergencies. The risk was minimal, but the big requirement for the dive was to have tubes placed in his ears to avoid any excess pressure during his dive. Thankfully Kyle already had one tube in his ear, so they attempted the painful procedure of placing a tube in his left ear. ENT made multiple attempts at placing a tube but he had previously had reconstructive surgery in attempt to help his hearing but it had failed and left scar tissue. They decided a small slit in his ear would be enough to release any built up pressure for the dive.

One of Kyle's feet, the skin is slowly sluffing off.

The following morning the team assembled his gear and wheeled his bed to the chambers. It felt as though we were entering a completely different hospital. They had a historical display showing the history of hyperbaric chambers and the research they had done for the Navy, NASA, etc. It was an amazing display. The control center looked straight out of the 70’s as the doctor described but they were no other facilities as unique as Duke. I was in awe of the procedure, and was amazed at how it helped so many patients struggling with a variety of things. Kyle got his own chamber but most other patients sit in the same chamber as one another and hang out for the 2-hour treatment, and play cards. I couldn’t shake the oddity of it but liked the idea of a procedure that didn’t inflict pain. 

Once Kyle was set for his dive I waved him goodbye and the team worked with him for a few hours. They said that everything went well and would like to continue the therapy for the next 14 days. I look forward to seeing results as his feet could use all the help that can get, and his lung is a precious commodity.  

As of today, he had completed just shy of 48 hours on his third round of trach collar trials but his CO₂ started creeping up so he was placed on the ventilator. We continue to push through as the holidays approach. We are looking forward to see our immediate families in the coming weeks. We wish everyone the happiest of holidays! Remember to hold your loved ones close and never forget the true meaning of Christmas. Everyday is precious.