So, after a few hours we were admitted to the PICU at Children's Hospital. Wen we were wheeled up to our room, there were about twelve doctors waiting for us in our room. They were all robed up, masked up and gloved up. I was overwhelmed, thinking, wow, what a great hospital. It was not until a few days into our stay in the PICU that I realized, this was, indeed not the norm. Most kids are wheeled in to meet with the nurse, if that. I am glad I did not know that at the time. It would have scared me too much.
We had an MRI scheduled for 3:00, but it kept getting bumped back. When she finally went down, it was just crazy. They decided to put a breathing tube in, just in case. My daughter was on a breathing tube. This really did scare me. To wheel her down to the MRI area, took a lot of work. They had so many meds on her bed, just in case, they had a defibrillator. They had so much stuff that this bed, which seemed so big at first, was packed with stuff. We waited outside the MRI room for an hour, then got a call from Catherine that she was there with our stuff. We walked upstairs. She came up to our room with us. That is when the doctor walked in and said she had good news. Catherine went to leave the room. I said to stay. They told us she had PRES, and it was 100% reversible. I think I breathed for the first time all day. Then I cried. Then I smiled. Then I cried again. They brought her up a while later and said they would monitor her for a while and treat her and let body recover then take the breathing tube out. PRES, is pulmonary reversible endoslophy syndrome. Usually caused by high blood pressure. Often seen in chemo patients. No one could figure out why Maggie had it, but went about treating it. They were more concerned with treating it at the moment then determining how it got there. That was hard for Sean and I to accept, but we understood it was more important to treat.
They decided to put in two IV lines directly to her veins (a central line directly to the heart). One through her neck, one in her ankle. This was a sterile procedure that went on right in the room, but sent Sean and I across the hall to the family room. We just plopped down on the couch and stared forward. A nurse came in and recognized me from teaching at HHS. I knew I had been crying all day, and I looked a mess. When I told her what room our daughter was in, she kind of gasped and said "oh, that room has been very busy tonight." It had been. Crazy stuff was going on in there.
The night doctor decided to take her off her breathing tube around 3:00am. That was good news but I was afraid. I was afraid that she would not be better. The doctor assured me that when we took Maggie off the tube we would have our old Mags back. She was wrong. It took days for Maggie to move (other then swinging at the doctors every time they tried to touch her), longer for her to speak, sit up, eat, or do anything which I would consider normal. Even in her coma-like state, she had spunk. She pulled out her breathing tube twice. Even under our careful watch. She punched a nurse in the arm. She kicked at, swung at, or glared at any medical professional that was near her. She would nod her head at a doctor if they asked her is she wanted them to leave. When she was finally allowed to try eating, she refused to eat anything they offered her.. she wanted a cookie or dumplings! I kept trying to explain that she was normally such a fun, happy girl.
The nights were rough. She would desat almost every night. Her lungs became blocked. We had to have respiratory therapist in around the clock. She coughed constantly but was too weak to cough hard or sit up in order to get all the gunk out. It was scary, and tiring, and hard. It seemed the nights were the hardest. She would basically sleep all day, but at night, she would struggle so hard with breathing that we would be up all night watching the monitors or performing chest therapy. One night her lungs were so blocked the doctor wanted to put the breathing tube back in. I really did not want this. at. all. I was determined to do anything we could to avoid this. The doctor was skeptical. We called in the attending who said she would give us the night to try to clear up her lungs. Sean and I banged on her back and her chest every ten minutes for hours. We would count backwards from ten like a rocket blast off and try to get Maggie to cough. I remember making the biggest deal out of a good cough... kind of like what you would do the first time a toddler walks! It really meant that much to us. They had to suction down her nose into her lungs a few times. I had to leave the room for this. Sean was amazing and helped the nurses hold her down while they did this yucky thing to her. Just hearing it from the hallway upset me. It took a few days to figure out what caused Mag's breathing to go so bad so quick. We began to wait out the rough times and let Maggie come through it again. It was hard, but the nurse was right, she could do it herself, after about a half hour. A half hour of alarms going off and her breathing rates slowing so much. A long half hour. A scary half hour. Once her breathing was a little better, we could move on to other things.
We began speech, physical and occupational therapy around day 5 or 6. That was very hard to watch. She could not swallow, even water. She could not sit up or hold her head up. She was in so much pain even when she turned from side to side. She screamed in pain. She begged not to do it. I really had no idea that a body could deteriorate that quickly. I thought the therapists would come in and she would bounce right back. She did not. I realized that the first few days I was just worried if she would survive or not. I was scared all the time. all. the. time. I did not cry; I just acted. Sean and I got things done. We made decisions together. We worked very well together in the hospital. We supported each others' decisions. We compromised. We did what we felt was best for Maggie. It was not until Maggie was awake and we began therapy and we talked to the doctor about her recovery that I really felt sad.
One night Sean and I were eating dinner in the family room across the hall, while Maggie slept. It was around 11:00pm. The doctor came in and sat with us for about 45 minutes. He was great. We talked about Maggie, but also about his family, his kids, schooling, insurance. It was the first "adult" conversation we had in a while. But when he left, I called my friend Tory and cried, for really the first time since the first day. He gave us what he thought was the timeline to Maggie's recovery. Two more weeks in the hospital, then a month or so at rehab. Rehab? This was the first mention of that. Why would she need that much rehab? Why would she need any rehab? Sean was saying this is all good news, she is doing better, getter better...recovering. This I understood, but now I stopped being scared, and changed to being sad. I was sad for her. For us. For the situation.
After nine rough days in the ICU, we moved up to neurology floor. It was an adjustment. No 24 hours supervision. No one to one nursing care. No monitors, no beeping, no breathing treatments... all good things to not have, but hard to come down from all that action. After being in the room for a while, a doctor finally came in to introduce himself, so different than our introduction in the ICU. I asked where all the monitors were. He said the did not have them. I said, how will we know if Maggie is breathing. He said, "We'll say, Maggie, are you breathing?" Yes, this was going to take a while to get used to! We had watched monitors and had one on one nursing care for nine days. We survived on very little sleep; we met with doctors and therapists regularly. We literally woudl walk out our door and there would be a nurse sitting at the window looking into our room and ask if we needed anything. On this floor if you walked in the hall, there was no one there. I called a nurse on the call button once and it took over a half hour to get a reply. I wanted to go back to ICU... how crazy is that. Once, when Maggie was writhing in pain and we were waiting, for what seemed like ever, for medicine, Maggie even said, can we go back downstairs (to ICU... and trust me, she was pretty angry there!).
to be continued...
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