The 20 days have been spent by our main hospital between appointments, therapy and an unexpected hospital stay.
Surprisingly we are still holding together alright but are tired.
Jilli had one of her crash events almost two weeks ago and spent several days in the hospital. It by far was one of our smoothest hospital stays yet. I called our Special Needs team on our way to the ER and they called the ER who was waiting for us when we got there. The ER did everything we needed them to and got us up to a room. The floor doctors were great and our team worked together really well!!!
Jilli threw us a few curve balls. Normally she has lung swelling during these events that cause her to need steroids and Xopenx however this time the swelling was not as bad (maybe from just having stopped steroids from the last crash) so we did not have to use those meds which is good. It also provided some answers to some things because we have always treated these events with steroids because we had to but this one we were able to ride out without so we were able to piece some things apart and figure out what is steroid side effects and what is part of these crashes. It helped to answer some questions.
This time instead of being tachycardia she alternated between tachycardia and bradycardia. She had an event in the ER that was particularity concerning. We already know that the bottom of her heart is thickening and I am sure extreme heart rate fluctuation does not help. Her blood pressure also ran low most of the hospital say.
Her dysautornomia symptums flared like normal during a crash.
We have to use medication to get her intestines moving again during these events because her gastroperisis becomes worse then normal (its bad on a good day) but this time our normal mix did not work and instead caused a rectal bleed. This was a first as we have done this same routine many times without a problem. Our floor doctors came up with a new plan that worked thankfully. IT was also very helpful that our GI doctor was on the floor that week and able to help bounce a few things around with us.
However while there were some aspects of this crash that were not as bad (she never completely lost her speech although she did not make a lot of sense on her first day in the hospital) the bounce back from this crash has been a lot harder... on all of us.
I am not sure if it is since she just had a small crash a few weeks ago or if it was us not using steroids this time but her energy this time has been so much lower after. She has been SO emotional and has had multiple melt downs which is not normal for her. Things that would normally not be a big deal to her send her into tears. We have needed to be more strategic about what we do while trying to build stamina.
One of the hard things after these crashes is that she forgets about safety and makes choices she normally would not. Its also hard to see her so emotional and so frustrated. It is also hard to parent when you know their choices are coming out of a physical problem however the choice they are making still is not ok.
Her heart rate at night has still also been running high for her which means that her body is still working hard.
Today though, thankfully, was the first day that I really saw a good turn which is interesting since she woke up at 4:45am! She was able to play with friends today and was much less emotional. I am hoping we have really turned a corner and are on the med.
We have tried to do a couple of fun things while here. We had already bought tickets to China Lights a while ago so we decided to use those the other night when it was a perfect fall night. We had also planned a while ago to go to a Halloween event at the zoo with Jilli's friend Grace on Saturday so we did that for a short time.
Tomorrow we see a few more doctors and have PT on Wednesday... and then HOME!!!
Thank you so much to everyone who has loved on us these few weeks. Its been a roller coaster and I have cried more then once, but I am so thankful for the people who have loved us!
No comments:
Post a Comment