Day 6

Collin had a rough night last night. He had to have all of his dressings (bandages on his central line, port & heart line) changed last night. It is very painful for him even with adhesive remover. His skin is like paper right now & is very sore. We also gave him a bath. I can only use bath wipes for now, but it is better then nothing. I stayed over at the hospital with him since he started waking up yesterday. He was in a lot of pain and moving a lot, so they put him back on the sedative, only an extremely low dose. That way it would help get rid of the pain so that he could sleep. He becomes very agitated very easily. Collin slept most of the day today. When he woke up when I was talking with the doctors in the hall. They don't discuss what is going on in the patient rooms, so they don't scare or disturb the children. They do it just outside their rooms. He became agitated because I was not in the room with him. His nurse tried to calm him down so I could continue to talk with the doctors. It is not just a couple of his doctors, it is all of them. ICU, stem cell, kidney, also his nurses and residents that have been taking care of him. That way they can choose the best approach for the day. When his nurse couldn't calm him down, I went in and firmly told him to settle down. I said "Mommy is talking to talk to your doctors about what to do about that tube in your mouth. I can't talk to the the doctors if you are in here making a fuss, so you need to settle down do Mommy can talk to the doctors about that tube in your mouth". He settled right down. He later started moving around a lot when I came back in the room and spoke to him. The head ICU doctor also came in. She wanted to see what he was doing. She said it appeared that he was in a lot of pain. In their discussion, they had decided to take him off the sedative drip and keep it as needed. They also increased his Fentenyl, which is his pain medicine. They didn't want him to sleep all the time. After the ICU doctor saw what he was doing, she decided to keep him on the sedative drip for today. She didn't decrease the pain med back down. So he slept most of the day as a result. He probably needed it. About 3:30pm, the nurse made a suggestion to the resident that his pain meds or the sedative be cut back. He agreed and cut the sedative back. At 4:00pm his nurse and I suctioned out his mouth. He has a lot of "ooze" that comes from his mouth. It is blood & saliva. It is as a result of the mouth sores and mucus from the chemo. It will go away once the breathing tube comes out. When we suctioned out his mouth he woke up. I had been waiting for him to wake up all afternoon so that I could work with his arms. When I was not at the bedside, we had to keep his arms in "no nos". They are just the braces that they put on the kids when they have an IV in so that they don't pull on it. The also can be used to keep them from pulling on other tubes, such has breathing tubes. They just went on both arms at the elbows. So that way he could still move his arms, but not reach up and pull on the breathing tube. I wanted to take the "no nos" off. While they were off he didn't go for his breathing tube like he did yesterday. Instead he would scratch his head. It was in itch scratch. If he wasn't scratching his head, he was touching his head. He didn't have his eyes open. I kept my hands around the breathing tube so he could move freely and not pull on it. He was also moving his legs. He was not in pain. I could tell because he wasn't moving like he was when he was in pain. After about 20 minutes I noticed that the burp cloths that we had put under his chin and up to his lip was getting soaked with blood much faster then normal. It was soaked. The nurse paged for the resident right away. By the time he got to the room we had the "no nos" back on him. He was fine with it because he had fallen back to sleep. The resident asked for a platelet count right away. Then he suctioned out Collin's mouth, but couldn't see anything because he couldn't open very wide and there was still blood in his mouth. He called for an Ear, Nose and Throat doctor or come down and look at him. When she got there, she asked for me to leave the room. She was out of the room and talking to me within a few minutes. She needed to discuss with one of the other docs about what to do. She soon returned and asked me to step out again. They found the source of the extra blood. He had rubbed the inside of his lower lip raw from the breathing tube. They put some medicine and special gauze in and put a stitch through the gauze and to a roll of gauze to keep him from accidentally getting the gauze caught in his throat. It helped a lot. He also received a platelet transfusion. Those always help with the blood in his mouth. Don't worry, having a bloody discharge from the mouth is normal for stem cell kids when they are put on a ventilator. A bit of other update is that they are starting to wean him off of the vent. They reduced the rate of breaths per minute from 14 or 12. He is breathing way over that. He was up in the 24 to 40 breaths per minute range. Almost every breath he was taking on his own. Also, the fluid that was around his lungs (not in them) had cleared away. When his kidneys were failing he retained a lot of fluid. Part of that was around the lungs. This fluid reduction is part of the reason he is doing so well with his breathing. His belly is still swollen, but it is going down slowly. His face has had come down some as well. The dialysis is working on getting the extra fluid off of him. The did put him on a slow saline drip to make sure he doesn't get dehydrated and replace the fluids that the machine is taking off. They are not concerned at this point that he will retain the fluids. They do have him on TPN to help keep his nutrients going. He did have trouble keeping his blood pressure up overnight. They had to put him back on the Dopamine. They had him on the highest rate that he has been on in the last few days. That is OK, if that is what is needed. It seemed to help his blood pressure when he would receive calcium, so they had him on a calcium drip to help keep it elevated. I guess his body is angry because it isn't getting his chocolate milk anymore. He is a huge chocolate milk drinker. To help with trying to stabilize his blood pressure, the kidney doctor reduced the rate of filtration on the dialysis machine. It was set higher on Friday since he had the MRI with contrast. He wanted to make sure that all the contrast was out and also give Collin a boost in the reduction of swelling. He lowered it back down to were it was prior to the MRI, which should help with is blood pressure. He seemed to do better today with it, so hopefully tomorrow he can be taken off the Dopamine. He has had a lot of skin problems. He has had a lot of blisters. Especially in his arm pits and on the inside of his legs. They have tried everything that we all could think of to help with it. We have even put a type of dressing on them that is used on burn victims. That didn't stay on very well. So his nurse and I decided that we would stop putting his diaper on. He is not urinating right now, because the dialysis machine is doing that for him (it runs around the clock). He also isn't having many bowel movements anymore. We still put the diaper under him, but didn't close it. The hope is the air will help dry out the opened blisters and help them heal faster. Collin hates having the diaper on. Even with him not being fully awake yet, he also tried to pull that off. When we didn't put the diaper back on him, he wasn't so agitated. We also started putting is arms above his head. One arm at a time. We would have to tie them there, but it didn't bother him. It actually probably felt good. We hope, that by letting these larger wounds get more air, they will heal faster. They were looking better when I left the hospital to come to the Ronald McDonald House. The hope is that he will be off the vent in about a week or so. It could be sooner. We hope so, but until his stats (blood pressure, heart rate, oxygen levels & respiratory rate) stabilize and he is more awake he has to stay on it. For the most part it is his blood pressure that isn't stable. His oxygen levels could be better, but they aren't falling to dangerous levels. They are a little low, but not enough to be concerned with. Also his blood counts from this afternoon showed he had an ANC greater then zero! I know it wasn't very high, but having an ANC is great news! ANC is the overall number of the blood components, i.e. white blood cells, other infection fighting components. This is great because that means he is on the uphill swing! It still can go back down again, but it is great that we are now on the climb back up. Hopefully, as his ANC number gets higher, he will become more awake and get better faster. That is all I have for today. Thank you for keeping us in your thoughts and prayers.