PICU

I am home tonight from the PICU. Craig came and traded me, it has been a very long 2 days. She is currently stable. That means that her blood pressures have returned to normal. When I arrived at the hospital on Friday her blood pressure was 61/23. That is bad. They started administering dopamine to try to raise her blood pressure and started dumping tons of fluid in her, it took several hours to start to stabilize her blood pressure. It took until the next morning for her blood pressure to return to normal. Her heart rate during the low blood pressure time ranged from 170-199.
Craig did a pretty good job describing what was wrong with her, it is with her colan. It is called Colitis. What we think happened is that she got c-dif again. That is that really bad bacteria that lives in hospitals and lots of other places too, but it is very prevalent in hospitals. Because we just finished chemo last week the c-dif began to ravage her colan. Luckily she developed a fever on Wednesday night that caused us to go back into the hospital. It scares me to realize what would have happened had we have not been there when she went into shock. The drs think what happened is that her body began to react to the infection in her colan as if it had an infection in her entire body. An infection in the entire body is called being septic, so Avarie was in what is called Septic Shock, her body was shutting down because of this infection. The surgeons were prepared to take her to emergency surgery, they were standing by when we went for the second CT, luckily they did not see a perforation, or a hole in the colan. Only one of the worst cases of colitis they have ever seen. She is being very closely monitored right now. She had to have a catheter put in to track her urine output accurately, and she has heart monitors everywhere and an IV in each arm in addition to the one in her port. She has her pulse ox which is the little thing they wear around their finger to measure pulse and oxygenation levels, and she has her blood pressure cuff on constantly to keep monitoring her blood pressure regularly. She has wires coming from everywhere it makes it hard for her to get comfortable.
She is in a lot of pain with her stomach. It is so swollen she looks like she is 7 months pregnant. She went from having a very deep inny bellybutton to an outty and the skin is stretched so tight. It is so hard to see her like this and the Dr's think it will be a while before it gets better. She is being pumped with tons of antibiotics and has been taken off of all food and water, she is being fed through her IV's with TPN. She cries for food and water almost all day, but we don't want anything in her bowels. Her bowels need to heal.
At this point surgery is starting to look more unlikely. We are so grateful to hear that. Of course they are quick to point out that at any time things can change, her colitis has not gotten any better, but it hasn't gotten any worse either. We are encouraged by that. We think the antibiotics have stopped the growth of the colitis and now we are just waiting hoping to see things start to go down. On Friday when this happened they had said that surgery was likely, and they started to trying to prepare us and her for that possibility. It was and is a very scary thing to think about them doing because Avarie has no immune system right now. She just finished chemo last week and her immune system has been completely down. The Dr's have started giving her a shot to help it return faster. From a cancer point of view we wanted her counts to stay down longer, but from the current medical situation she is in she needs it back ASAP. So far the shots are helping much, we didn't expect her counts to start returning until this next weekend, but we are now hopeful that with the shots it will be any day now.
We had started to schedule for her bone marrow transplant. We spoke to the OHSU earlier this last week and they had set the first week of June for her transplant. We were starting to get things in order for that, but now with this transplant will be put on hold. She is just too sick and we expect this to take a while for her to get better from. She needs to be healthy(as healthy as a kid going through chemo can be) and stronger physically to survive the transplant. It is scary to think of postponing it because it means she will now enter the maintenance phase of chemo before we are able to take her to transplant. The maintenance phase of chemo is when the chemo is lessened and it is also her greatest chance of relapse. So hopefully we can get her healthy and strong before too long and get her into transplant, but we won't do it until she is ready and that may be more like the end of summer now. I don't know for sure on that, but either do the Drs they just keep telling me its a wait and see thing. The Drs can't give me really any idea of what to expect, but this is not something that happens all the time. And every person is different how they respond to things, they just have no idea how this will all go for Avarie. We just know that best case scenario we will be in the PICU until the end of this week and then moved into a regular room where we will be for several weeks. So basicly we are in for another long stay at the hospital, hopefully it won't turn into months like last time.
I am headed back up tomorrow to trade Craig out again, and I will most likely be there the rest of the week. It is just too hard for Craig, emotionally and physically. The PICU is a room with a big glass wall that has to have the curtains open the whole time so that the nurse can see Avarie at all times. A light has to be left on at all time in the room, in addition to the lights in the hallway and there is no bed for parents to sleep in, there is a recliner. I fit OK in the recliner, but I was not blessed with height. My husband on the other hand is going to have a hard time trying to sleep in a chair too small for him with someone watching him the whole night and if anyone knows Craig then they understand that the light is a big problem for him. He likes complete darkness when sleeping. I have moved him towards the light in our 10 years of marriage, but he still prefers the "darkside" and has a hard time with light at night. He is also having a very hard time dealing with seeing Avarie like that. I think moms just deal better with these things because that is our baby and we have too. Not that Avarie is not his baby too, I think it is just different for a mom. So I am off to bed tonight to try to get the best nights sleep I can. We will try to update soon.