I went in to get the trache procedure done on September 16. The whole thing was quite an experience; I don’t think it’s possible for us to have a smooth hospital stay. The procedure itself took place at about 7:30 in the morning and went fairly smoothly according to my surgeon, Dr. Parikh. The only problem was that he thought my airway was too small for a size six so chose to use a four. When I woke up, I was on a vent and felt a good amount of panic, since I couldn’t get used to the lack of air moving through my mouth and nose. It felt like I was suffocating. That feeling got worse when the doctor gave the go ahead to turn off the vent to see if I could breathe on my own. According to everyone watching, I was doing great, but without feeling the air move in and out, I couldn’t fully convince myself I was actually breathing.
According to Jin, the pulmonologist who had come to see me during this time had a fit because Kennestone was not equipped to handle my recovery or provide training for my caregivers. There had been a major miscommunication between the various doctors. The pulmonologist wanted me moved to the Windy Hill Internment Center, but since that sounded a little questionable, Jin called Dr. Lin at Shepherd’s to see if I could transfer there. It took a few favors and a lot of discussion with our insurance, but Jin eventually had it worked out. I would stay at Kennestone through the night and transfer to Shepherd’s in the morning.
That first night was miserable. I was hot and sweaty, still uncomfortable with my new method of breathing, and my every movement resulted in a coughing fit because the trache kept rubbing the inside of my throat. Plus, I had my first introduction to suctioning through the trache which made me go wild eyed with panic. Trying to breathe through the trache was bad enough but having all control over my breathing taken away pushed me over the edge. It took me a while to get myself calmed down. Jin and Dad stayed the night to watch over me, and poor Jin ended up in a chair right below the air conditioning vent and in line with the mounted fan I needed to stay relatively cool. He was bundled with four blankets and still freezing. Needless to say, we all had a rough night.
The next morning, Jin found his plans for transfer had been canceled by someone in Shepherd’s outpatient center. After more calls, the transfer was rescheduled, and I had my very first ride in an ambulance. Not an experience I want to repeat. I hate being moved while lying down, and the loading into the ambulance itself was very rough. So I was battling both nausea and a constant need to cough. Plus, I was just so hot and couldn’t feel any airflow in the back of the rig. I made it all the way to Shepherd’s before the nausea finally won. Thankfully, it wasn’t too catastrophic. The trip through the hospital didn’t help matters, but I finally made it to my new bed without incident. My new room was huge but to my dismay, there wasn’t a fan in sight. For some reason, a cool breeze really helps when I’m feeling nauseous, plus having air blowing towards me helps me pretend I’m still pulling air through my nose and mouth. I was so happy when Chris showed up with a clip-on fan. It was my salvation.
Shepherd’s is a very nice facility, but the nurses, while extremely nice, were a bit too strict for my tastes. I’m used to being able to talk around the nursing staff, but they were adamant about turning me every three hours regardless of how much I argued. Turning from side to side, helps keep gunk from collecting in one area to keep the lungs healthy. While I agree with the theory, every three hours seemed excessive. The next few days was a blur of turning, coughing, nausea, and visits from nurses taking my vitals. Jin stayed with me the whole time, and Abbie suffered with him with the exception of a few trips home to get a few things. A huge thanks to everyone who brought food and kept them company. They were probably going a little crazy trapped in the room.
Jin started a rumor we’d be going home on Tuesday when I was admitted and amazingly everyone fell in line. Unfortunately, we weren’t comfortable leaving on that day because my oxygen level dropped dramaticly twice without any apparent reason, but the doctor was trying to discharge me. It was a unique experience. Dr. Lin stepped in and said we could stay, which turned out great since a doctor was willing to swap my size four out for a six the next evening. He was extremely reluctant, but he did it and the swap wasn’t as horrible as I imagined; taking the stitches holding the size four in place out was actually the worst part. And what a difference! Breathing was noticably easier right away and the bigger suction cathaters were able to get a lot more on a single pass. The swap also saved me a trip back to Dr. Parikh since the stitches had been removed.
Once the trache was swapped, we were free to go, but it took a while to get packed up and get me moved into my chair. Then we had to delay a little longer when my oxygen level dropped into the 80s while waiting for the elevator. After that, everyone decided I should go home on the vent rather than just the filter as planned. I was actually relieved at the change, since I was already in panic mode and having the vent on took away one worry. It’s easier to calm myself down when I know my breathing should be taken care of. I hadn’t wanted Luke’s first sight of me to be with the vent, but he didn’t seem bothered by it when we finally made it home. He takes so much in stride; it amazes me.
I was very happy to be home in my own bed where I could at least see Luke a little and hear him talk and play. Plus, I know Jin and Abbie were more comfortable at night. Unfortunately, my almost constant cough meant Jin was still awake most of the night.
That following week was not fun. The first weekend I was home I had trouble bearing weight and couldn’t really communicate, since I had trouble keeping my eyes open. We finally figured out the Xanax was to blame, but I needed something to help keep me from panicking. My heartrate kept climbing and I was constantly dripping sweat. I just couldn’t seem to convince myself I could breathe. Drexinger brought some Lexapro by, but it made me extremely nauseous. I finally let Dad give me an Ensure only to have it all come back up as soon as it hit my stomach. What a mess. I felt too sick to move, so Abbie ended up cutting my shirt off before cleaning me up as best she could. Jin bullied me into the shower when he got home. Unfortunately, my cuff was deflated so we were worried I might have aspirated.
The day after I threw up, my chest felt tight and I just generally felt like crap. All the doctors Jin called were worried I might have aspirated and developed pneumonia so wanted me to go to the ER. I was not happy about this plan, since I absolutely didn’t want to get out of bed. The car ride to North Fulton was as miserable as I expected, but the cool outside air felt amazing. The ER was a little busy, but we were shown back very quickly and my blood was drawn, an IV was started, and a chest x-ray and EKG were done in record time. I suppose there are benefits to having a trache.
The chest x-ray was clear but my white blood cell count was extremely high. The normal high end is 10,000 and mine was 32,000. They had already started IV antibiotics, so there wasn’t much more to do but get me settled in ICU. Jin worked his usual magic, and he and Abbie were allowed to set up camp in my room.
I think Jin’s updates caused a minor panic among friends and family. Susan flew in last minute from California when she heard I was being admitted. I felt a little bad that she was so worried, but she was extremely helpful; all the time she spent in hospitals has made her an expert on different medications. She’s an amazing resource. Having Susan there during the day also allowed Jin and Abbie to sleep without worrying about keeping an eye on me. For the most part, the nurses were very willing to break the visiting rules since it freed them from my care. We only had one confrontation towards the end of our stay. An older nurse came into my room and found four people visiting. She actually went and tattled to the duty nurse who then came in to say only one person could stay. It took awhile to explain that would be impossible, since I need almost constant care and the nursing staff could not give me the attention I would need. Plus, they wouldn’t know my communication shortcuts. We were all pretty irritated, but the duty nurse eventually agreed to allow two people to stay.
The chest x-rays stayed clear and I felt pretty good after a few days on the IV meds, but they wanted to continue IV antibiotics until my white blood cell count was normal. It turned out my trache site was infected and I had thrush in my mouth and throat. By the time my count was normal, we were all very excited to go home. Jin and Abbie were completely worn out, and I was ready to sleep without nurses coming in at all hours.
We went to see Dr. Parikh early November for a follow-up since Jin suspected there was still something going on. He confirmed I had thrush, but it required a simple 5 day regiment of diflucan. He also swapped the trache since we were coming up on two months. Since the trache site was tender, this was absolutely no fun! It took a while to stop coughing up nasty globs of blood afterwards. Jin and Abbie agreed the empty hole in my throat looked pretty disgusting. For my part, it felt a little weird breathing through the opening without the trache in place.
By mid November, I was feeling miserable again. I started getting crazy congestion and Luke was sick as well, so Jin wound up going to the ALS Walk solo. I felt pretty guilty, but considering I only got worse, it was a good decision. Based on what Jin told the doctors, they thought I had an infection in my lungs, which meant I was back on antibiotics. Callahan also proscribed albuteral for the nebulizer to be administered every 3-4 hours. I had to come up with a pretty aggressive schedule to fit everything in. With my sleeplessness and nausea, it was hard to work in 4 ensures and do the shaker vest 2-3 times a day.
Unfortunately, I’ve been nauseous off and on since then. I’ve had a few good days and have managed some fun outings, but I continue to have trouble keeping food down. Jin is pretty worried about my weight loss. We are now using a feeding pump to keep a constant slow drip going to help control the nausea. It also lets us feed overnight if I didn’t get enough during the day. I think the pump is helping a little and I’m also on a Zofran regiment. We’ll see how it goes.
Overall, I haven’t seen any benefits from the trache yet. I’ve been in and out of more hospitals in the last few months than ever before. And I haven’t yet become accustomed to having plastic permanently reside in my throat; it’s uncomfortable and often triggers my gag reflex. I’m trying to remember, though, that it’s only been 2 1/2 months. Surely, this has to get better!
I can’t begin to tell you how thankful we are for all the prayers and support. I don’t know how we would have managed the last few months without such wonderful people helping out.