2/1-2/10
Wednesday night Rose had a stuffy nose. Nothing big, it was kinda normal. I checked on her later to see she threw up twice. It was not great, but that is a normal cold. She did a small fever, gave some small Tylenol for it. She took her morning nap on me. Something she had not done in a while. Her fever started to get worse and Paul was holding her, while I fixed lunch. We checked it has gone up and she was starting to act sicker. I called the doctors office to get an appointment and while on the phone she went into a seizure. I called 911 and Paul took the phone and I took her. We followed what they said. We started dripping luke warm water on her to help bring her out of it. They told us she would scream she did not.
The emergency people arrived and they took her out to the ambulance. They started working on her. I grabbed a few things and they said that one of us would have to ride with her. I went with Rose. On the ride to the ER in Worcester she stopped breathing. She would breath on her own and then stop. They said it was because of the medication she was on. It was not a fun thing to watch. The one of the EMTs gave some advice about what to do next time. More on that later if I remember to type it up.
We arrived at the hospital and went straight to pedi ER. She was then surrounded by more people than I could count. They started working on her right away. They then started to put a tube down her throat so she could breath. It was not fun. I got ask questions about what happened at least 3 more times. Paul arrived and I just wanted to cry. They got the tube down and then took an ex-ray to check it. They also sent her to get a cat scan. This was to check her brain and see if they could see any damaged. That came back clear. She did have at least 3 other minor seizures. It was not fun. They had her drugged to the teeth and then did a spinal tap. It still took 6 people to hold her down to get the tap done. They checked for spinal meningitis and a few other things (everything came back clear).
After that we headed up to picu. We changed cribs again got settled in for the time. It was not easy to watch her with everything. They got her ready and we had more visits from doctors and nurses and lots of different people. She still have fevers off and on. It was not great. We got ready for a little bit of a stay. It was not a fun time.
They kept putting more and more drugs in her to keep her under so the breathing tube would stay in. They gave her enough to knock out adults and she kept waking up. Every time she woke up they gave her more to put her under. She did back bend off the crib and moved tons. They gave her the “Most Active Award” from the doctors. They said seeing her is believing. Each new doctor or nurse said they could not believe how active she was.
They had to re-put in the feeding tub after we got there. We had to go through another room to get to ours. It was kinda strange. Thrusday was a long day. Paul stayed the night and helped take care of Rose. She was active and they had to put in different IVs, because she lost one of them. That was going to be a common theme.
Friday they gave her an MRI (which came back clear with nothing showing) and I saw Dr. Domino her normal doctor. He had just found out about everything. He stopped in to see how thing were going. I told him the story. He was great during all of this. Rose got a stuff animal that said she had been scanned there. We headed back up to the PICU. We did have friends that stopped in to see Rose. It was great to see them. Paul went home and got clothes for me and took care of the fuzzies. Things from here get all gray some things run in together.
Some time on Saturday I think is when we had our first EEG (which came back she was really drugged but okay). It seemed like days of tests and fighting to put her back to sleep with drugs. She had at one time 9 IV bags hanging from her. It was not fun to watch. They gave her over 16 different IV lines. She would get one it and lose it.
We had nice nurses and doctors. Every nurse we had came in during times that was not their shift to see Rose and check on her. It was nice to see people care.
When it got time to start thinking about removing the breathing tube we started to cut back on meds. it did not work very well. Rose went blue the first day and then the second day they tired she went blue 2 more times when her O2 levels dropped. It was not much fun. Each time they tired to get her off it would cause more problems. Each day for 2 or more days they said they would try to get her off she would just get more active and cause more problems. They had to give her something different to knock her out and it did work.
After a long day and night we got the tube out on the 6th. It was not normal how they did it, but it was the only way to get the tube out of her. It was hard to watched. She came out of this very dazed, but she did say mama asking for me. It was nice and hard at the same time. Rose did not want to be touched. We started to feed her some water with extra minerals in it. She threw it up each time we tired. We spent part of the day in the same room and moved to a new room in the ICU. It was the less watched area and it was nice to see she was getting better.
Rose spent 2 nights there and they did another EEG. She let me hold her more and we started to feed her food. She started to eat better and it made me happier to see some normal things coming back. She did not keep food down the first time we gave it to her. She threw up lots and them mucus from the lungs. It was not easy to watch. I could not deal with it because of how I was feeling. Gramda and Paul dealt with more of it.
Then we moved on the 8th at night to the floor. The normal pedi ward. It was a change on things. She did not have to be monitored 24/7 on machines. They only did vitals. I did try hard to get us home a day early. It did not work. We spent a long night and worked towards getting home. She started new meds and it was nice to see that we could possible go home.
We headed home. I was happy and Rose was so-so about it all. It was another change for her. She had been moved lots. She did not act like herself.
The first night home was okay it is hard to wake up Rose to give her meds to her. Second night she did almost the same thing. it is hard to just let her go and cry. She needs to cry, but just have to figure out when it is bad cry and when it is a cry just to cry or is it a cry of withdrawal?
Rose is doing much better today. It is hard, but we are making progress.
I'm sure I don't remember everything that has happened. I'm sure Paul remembers some that I don't, but that sums it up in a small way.
The emergency people arrived and they took her out to the ambulance. They started working on her. I grabbed a few things and they said that one of us would have to ride with her. I went with Rose. On the ride to the ER in Worcester she stopped breathing. She would breath on her own and then stop. They said it was because of the medication she was on. It was not a fun thing to watch. The one of the EMTs gave some advice about what to do next time. More on that later if I remember to type it up.
We arrived at the hospital and went straight to pedi ER. She was then surrounded by more people than I could count. They started working on her right away. They then started to put a tube down her throat so she could breath. It was not fun. I got ask questions about what happened at least 3 more times. Paul arrived and I just wanted to cry. They got the tube down and then took an ex-ray to check it. They also sent her to get a cat scan. This was to check her brain and see if they could see any damaged. That came back clear. She did have at least 3 other minor seizures. It was not fun. They had her drugged to the teeth and then did a spinal tap. It still took 6 people to hold her down to get the tap done. They checked for spinal meningitis and a few other things (everything came back clear).
After that we headed up to picu. We changed cribs again got settled in for the time. It was not easy to watch her with everything. They got her ready and we had more visits from doctors and nurses and lots of different people. She still have fevers off and on. It was not great. We got ready for a little bit of a stay. It was not a fun time.
They kept putting more and more drugs in her to keep her under so the breathing tube would stay in. They gave her enough to knock out adults and she kept waking up. Every time she woke up they gave her more to put her under. She did back bend off the crib and moved tons. They gave her the “Most Active Award” from the doctors. They said seeing her is believing. Each new doctor or nurse said they could not believe how active she was.
They had to re-put in the feeding tub after we got there. We had to go through another room to get to ours. It was kinda strange. Thrusday was a long day. Paul stayed the night and helped take care of Rose. She was active and they had to put in different IVs, because she lost one of them. That was going to be a common theme.
Friday they gave her an MRI (which came back clear with nothing showing) and I saw Dr. Domino her normal doctor. He had just found out about everything. He stopped in to see how thing were going. I told him the story. He was great during all of this. Rose got a stuff animal that said she had been scanned there. We headed back up to the PICU. We did have friends that stopped in to see Rose. It was great to see them. Paul went home and got clothes for me and took care of the fuzzies. Things from here get all gray some things run in together.
Some time on Saturday I think is when we had our first EEG (which came back she was really drugged but okay). It seemed like days of tests and fighting to put her back to sleep with drugs. She had at one time 9 IV bags hanging from her. It was not fun to watch. They gave her over 16 different IV lines. She would get one it and lose it.
We had nice nurses and doctors. Every nurse we had came in during times that was not their shift to see Rose and check on her. It was nice to see people care.
When it got time to start thinking about removing the breathing tube we started to cut back on meds. it did not work very well. Rose went blue the first day and then the second day they tired she went blue 2 more times when her O2 levels dropped. It was not much fun. Each time they tired to get her off it would cause more problems. Each day for 2 or more days they said they would try to get her off she would just get more active and cause more problems. They had to give her something different to knock her out and it did work.
After a long day and night we got the tube out on the 6th. It was not normal how they did it, but it was the only way to get the tube out of her. It was hard to watched. She came out of this very dazed, but she did say mama asking for me. It was nice and hard at the same time. Rose did not want to be touched. We started to feed her some water with extra minerals in it. She threw it up each time we tired. We spent part of the day in the same room and moved to a new room in the ICU. It was the less watched area and it was nice to see she was getting better.
Rose spent 2 nights there and they did another EEG. She let me hold her more and we started to feed her food. She started to eat better and it made me happier to see some normal things coming back. She did not keep food down the first time we gave it to her. She threw up lots and them mucus from the lungs. It was not easy to watch. I could not deal with it because of how I was feeling. Gramda and Paul dealt with more of it.
Then we moved on the 8th at night to the floor. The normal pedi ward. It was a change on things. She did not have to be monitored 24/7 on machines. They only did vitals. I did try hard to get us home a day early. It did not work. We spent a long night and worked towards getting home. She started new meds and it was nice to see that we could possible go home.
We headed home. I was happy and Rose was so-so about it all. It was another change for her. She had been moved lots. She did not act like herself.
The first night home was okay it is hard to wake up Rose to give her meds to her. Second night she did almost the same thing. it is hard to just let her go and cry. She needs to cry, but just have to figure out when it is bad cry and when it is a cry just to cry or is it a cry of withdrawal?
Rose is doing much better today. It is hard, but we are making progress.
I'm sure I don't remember everything that has happened. I'm sure Paul remembers some that I don't, but that sums it up in a small way.