Gosh, I don’t even know where to begin because things have been so tumultuous. As you are all aware, Scott is back in the SICU as of yesterday. However, I need to bring you up to speed so you can understand where we are now. I will start with Wednesday.
Upon my arrival on Wednesday I was greeted with Scott saying that he actually slept Tuesday night and he didn’t feel anxious at all. He was in pretty good spirits and his color looked great. It was apparent that he indeed had rested the previous night. This made me feel really optimistic that it would be a good day.
To start our day OT came in and gave him a really good upper body workout. He was focused and talkative during the hour long session. After OT I fed Scott a quick lunch of mashed potatoes (his current favorite) and applesauce. Following lunch, they got Scott lifted into a wheelchair and moved down to PT for a gym session of leg therapy. This was the first day Scott had progressed from bedside therapy to the gym. When he finished PT they moved him back into his room but kept him in the chair for speech therapy. The speech therapist had Scott do some movie/tvtrivia while practicing the timing of his speech. When on a ventilator, you have to speak at the top of a breath which means that you usually can only get two to three words out per breath. As you all know, Scott is a rapid speaker so this is a difficult feat for him! He did a great job timing his speech with his breath but midway through the session he had a bout of coughing that persisted for about an hour so they had to get him out of his chair back into bed so respiratory could come in to give him a treatment to try to pull up whatever was causing him to cough.
As I have mentioned in previous posts, Scott in unable to bring up the secretions in his lungs really well because the muscles that assist him in making a really productive cough are paralyzed. RT has to put a tube with a suction down into his trach to pull the secretions out. In order to do this, they have to remove the tube connecting Scott to his vent while they suction. Essentially, Scott is “holding” his breath while the suction is down the trach. Usually this only takes a few seconds, however, during this particular suction the RT had to keep the suction down for a long time because she had a really thick mucus plug that she couldn’t pull up. This freaked Scott out. He got really worked up because he couldn’t breath and it scared him. He told the RT that was the worst suction he had ever had because she had to stay down so long and because the mucus was so thick it hurt him coming up. She explained to Scott that it is imperative for her to pull these thick mucus plugs because they can obstruct his airways. Although it’s uncomfortable it is essential to get them out.
After Scott calmed down the evening progressed well. My parents came up for a visit and Scott immediately asked them if they feel he has made progress. Scott hadn’t wanted visitors so my parents hadn’t had the opportunity to see him since Bronson. Scott asks his family and I daily if we feel he has made progress and we tell him yes but since we see him everyday he doesn’t believe us. Needless to say, Scott was happy to hear from my parents that indeed they too see a remarkable improvement in his progress.
During the visit Scott asked my parents to call my sister. In an emotional conversation, Scott told Angie he is so thankful that she saved his life and he is happy to be alive and he wants to fight this battle. It was so incredible for all of us to hear Scott say this since he had been so depressed the previous days. I can’t tell you the relief I felt to hear him say those words. I felt as though we turned a page in his recovery. He sounded so determined and confident again.
The rest of Wednesday evening went well and Scott was really relaxed until RT came in for a treatment. The therapist did the chest percussion therapy and administered the medicine into his vent to help his lungs. Everything was going smooth until the RT mentioned suctioning. Immediately, Scott got upset. His heart rate went up to 130bpm and he was pleading for the RT to not suction. He said his last suction was terrible and his lungs felt fine and he insisted that he did not need the suctioning. The RT listened to his lungs and checked with the doctor and they came to an agreement that they would hold off on the suction until Scott settled down since his heart rate was so high. Since his blood pressure was a little low and his heart rate was accelerated they gave him some fluids because it would help level things out. Shortly after the fluids were given Scott calmed down and eventually fell into a peaceful sleep. I left Wednesday night confident that Thursday was going to be a good day.
On Thursday morning as I was getting ready to leave for the hospital I received a phone call from Scotts doctor informing me that Scott was in critical condition and sent down to the SICU. Apparently, while RT was working with him a plug moved and obstructed his airway blocking him from ventilation. The heart doesn’t like being deprived of O2 and when it is it slows until it eventually stops. Scott had to be given an injection of a medication to jump start his heart and CPR had to be administered to resuscitate him. When I arrived at the hospital they were able to get him to a stable point but he was closely being monitored because his blood pressure was extremely low.
Things remained stable for a couple hours and then Scott crashed again. They called a code and we had to watch as staff rushed in from every direction to aide Scott. It was terrifying. They had to give him another injection of medicine for his heart and they pulled his trach out to replace it with a larger size so they could get into his lungs easier. This was discouraging because Tuesday night they had just removed his size 7 trach with a size 6 which was a step in the right direction towards our goal of ultimately removing the trach. During this event Scott had a size 8 trach put in.
After about 15 minutes they got Scott to a somewhat stable place but told us that he is being closely monitored as it appears his bottom lobes were collapsed again. He can no longer eat or drink and will have to retake his swallow study to earn those priveledges again. He also is unable to talk again so we’re back to reading lips.
Today they did another bronch on his lungs which is sort of like putting kerby vacuum with a camera on it into his lungs. They pulled an incredible amount of thick “goo” out of his bottom lobes. I was told that the bottom of his lungs were completely occluded with thick superglue type mucus plugs.
It looks like we will be in the SICU for a couple days. Scott is extremely sedated. He hasn’t said more than a couple sentences today. His blood pressure has stabilized but it’s still pretty low. No one is really sure why this happened but they are going to be taking things slower and watching him closely. I’m sure that Scott is going to be highly discouraged so please pray for him.
This has been one sharp downward turn on this roller coaster we are riding. Scott and the rest of us need your prayers. It is terribly exhausting and frightening to go through an ordeal like this. It strains every fiber of the body. I think we are all shaking our fists in frustration. I knew we would take steps backwards but I feel like we’ve had everything taken from us from the trach reduction, eating/drinking, and even talking! Please pray. I know Scott will bounce back but I’m fearful of his confidence level. Pray that he gets stronger both physically and mentally.