Last Wednesday, the doctors decided we would switch Cohen's gtube to a gjtube. What this would mean was he would be fed in his small intestines instead of his stomach since that may have been causing the spit up therefore leading to the scariness that occurred on Tuesday with Ryan and I. He had been doing ok that day but seemed to have a slight cough and was occasionally "choking" on what seemed like saliva. When this would happen, his oxygen would drop to the 80's which was a very new thing for him because he always tended to be in the 90's for the most part.
At around 3:30 two nurses came upstairs to his room and the three of us wheeled Cohen in his little bed to the elevator. As we were getting on the elevator, he began to cough and seemed like he was having some trouble getting the spit up. The travel monitor began to make sounds and the nurses who were with me started to get a bit nervous. They pushed his bed quickly down the hallway and began talking about how they needed to find suction. They kept repeating this and then one said, "Get him into a room now with suction!" Where we were in the hospital it seemed very isolated and empty. We were going down for a routine procedure in the imaging room, not an operating room. They pushed his bed quickly into a bright room and tried attaching the oxygen mask to his face. I stood back with my body against the wall of the room and was paralyzed. No thoughts were going through my mind, I couldn't talk and for a second felt like I had stopped breathing. Another nurse came in and asked if they needed help. The look in their eyes said it all and she pushed THE BUTTON....the CODE BLUE BUTTON! I knew what this button meant because I have seen it before living in the hospital for the past few months but never in my room. Usually nurses, doctors, residents, fellows, whoever is around when they hear the signal going skipping down the halls to the patients room and flood in without any purpose but to be there in case they are needed. A nurse turned to me and said, "Everything is ok, but he's needing a little extra help, so we are going to get some. There will be a bunch of people coming into the room in a minute so I don't want to alarm you." Alarm me? I was for some reason speechless and had no emotions. I continued to stand there as I watched the back of Cohen's neck while they help him upright on his bed turn slightly blue and that was enough for me to leave.
As I walked into the hall in utter shock, about 15 doctors and nurses were running past me. A receptionist on the floor led me to a room for me to wait. Meanwhile the doctor that was going to perform the gj procedure came to meet me apparently unaware of what was happening. He began to speak about the procedure and what was involved. Apparently he had no idea because as I began to cry a few nurses rushed in to let me know that he was not coming back up on his own and they would need to put in a breathing tube to help him. This was a nightmare! I called Ryan as quick as I could to let him know the news.
After about 15 minutes they said they had the tube in and he wasn't quite stable but they needed to get him back up in the room where they had everything readily available. I followed them closely walking behind and only seeing the top of Cohen's head. The nurse was "hand-bagging" him meaning pushing a bag to keep his lungs inflating since they needed to hook up the ventilator once he returned to his room. Once we arrived back at his room 1632, it was nothing but more chaos. Cohen's IV had fallen out and even more nurses came to assist. They pushed a cart right up against his room wall that had every drug imaginable and as I stood there waiting for Ryan to come meet me, they began to pull up various medicines into syringes. There was so much activity and it happened so fast it is hard to say what exactly happened in those 20 minutes but they were finally able to get an IV into both of his feet so that they could give him some pain medicine and sedation. He was finally somewhat stable but the doctors were very worried about how much support he needed from the ventilator at the time, it almost seemed like his lungs needed a lot of support to keep them open. He was heavily sedated that night.
The following day he had various moments of huge desaturations where he was again needed to be hand-bagged to bring him back up. Through Thursday and Friday his desaturations increased and it was taking the doctors more to pull him out of it. Code Blue happened three more times!
There was a follow-up echo done of his heart and it seemed as if he was having pulminary hypertension. Up until this point, Cohen still had a small hole in his heart, but his heart was functioning great! During the echo they were able to see that occasionally the blood was reversing directions which was not good. This meant that instead of blood going from the heart to the lungs it was reversing, causing there to be a lack of oxygen in his lungs and making him have these huge desaturations. After the second one, they decided it would be best to paralyze him. For over 24 hours, Cohen was unable to move anything for his own safety so that he would not be breathing over the ventilator.
On Friday they sent off usual blood work and determined that his hemoglobin was very low so he endured his first blood transfusion. This helped his numbers increase and it seemed to help him in general with dealing with the breathing tube. They also decided it would be best for him to still get the gj so he went downstairs again but this time with two anesthesiologists. They made sure to keep him paralyzed for even this minor procedure because he seemed to desaturate from very small upsets. The doctors also wanted to get a central line put in. This is like an IV but only longer and put into a larger vein (artery) which leads to the heart. The good thing about doing this was the nurses/docs would be able to pull blood from it without poking him each time and also it would stay in! Over the next day, he became slightly more stable, and they tried to decrease the support from the ventilator. During most of the weekend he was doing better and after getting the gj tube put in, he was able to finally eat!
Today we discussed why he has begun to have pulminary hypertension. THis is usually a diagnosis that is secondary and caused from something else. There was most likely something else that was causing Cohen to have this, act this way, and need the increased support from the ventilator. The pulminologists now think that Cohen may have a rare lung disease. This is what I have thought all along and though I'm not a doctor, my "mom instinct" has always thought that due to his increased need for oxygen, the sound of his breathing, and the increased work of breathing. They decided to send some more blood to help determine if he has a rare genetic lung disease (which will take weeks-month to hear back about). But at this point they are also considering doing a lung biopsy to determine whether or not they can use the tissues collected to look for other lung issues.
This is again another waiting game but I feel more confident now that things are starting to show and hopefully pointing the doctors in the right direction.