Friday, April 16, 2010

Violet's hospital stay


Dave and I stayed overnight in the hospital last night with our daughter Violet.
It was probably one of the longest day/night's ever.
Thank goodness Shannon was there with us when we got there. She keep Violet busy with games and toys.
Then it came time to "hook" Violet up. This was to test if Violet was having any seizures that were keeping her from sleeping.
26 wires were hooked up to Violet. During that time Shannon and I worked hard to keep her occupied. I brought a portable DVD player with me that I borrowed from my aunt, but the battery died 5 minutes into Mickey Mouse Clubhouse (her fave show of all time). So Shannon and I sang, counted, did everything we could think of. Dave was getting Violet something to drink, and couldn't be let into he room, because then it would disrupt the process.
Violet cried and cried. In the end her head was wrapped tightly, then all the wires were wrapped, which connected to a heavy small bag that she had to carry like a messenger bag, which then attached to a wall monitor. She was under video surveillance the entire stay.
After the crying she eventually calmed down, especially when she saw the playroom.
I thought- wow, it's not that bad. But then I found out the playroom closed at 6 P.M!!! Which is nowhere near the time she goes to sleep. And it didn't open until 10 A.M! Dave and I were jumping trying to entertain her for 14 hours in a very tiny room!!!! She slept better there than at home, she still woke up every 5 minutes but she did go back to sleep until about 5 A.M. We were exhausted, mentally and physically. I had not been feeling well for days now, and Dave was still sick with a sinus infection- so we were not up to par at all.
The rest of the day we spent chasing her because she wanted to run all over the pediatric neurology unit.
The doctor eventually came and told us, she's not having seizures, but they need to do more testing. Probably an MRI, eventually and she had her blood taken twice for genetic testing, to make sure her autism won't get worse.
I told the doctor my kids and I are always sick, we get sick every month. To which, FINALLY, a doctor said "That's not normal. We have to find out what's wrong."
Thank GOD! So both my children and I, hopefully soon will be having more tests done. And hopefully get some FUCKING answers.
Violet is a warrior, she is amazing. Everyone loved her there. Thank you to all the wonderful nurses that helped us during our stay. Thank you to Shannon and my awesome social worker, and honorary family member, Michelle, for coming, showing support and helping us through this difficult times. We loved you both so much.

*photo of my princess and her lovey, Gorilla.

Peace, love and baby bottles,
Till next time.

3 comments:

  1. I'm so glad hun...
    I don't know why I thought they would give violet something to help her sleep. I think I had all of this confused with EEG deep sleep studies.
    Now I know why you were so stressed....:-(
    But I'm soo glad it went well and that thanks to this, other issues are going to be looked into.
    Tell the doctors to check for environmental factors to your illnesses. The one common denominator to all u guys getting sick besides the possibility of a genetic factor is that u all live in the same place.
    Tell them to check for metal deposits in your blood, like lead, or it could even be mold. You guys live in an old school apartment which I believe is pre-war which means the possibility's are higher.
    Leave no stone unturned...
    Love u guys...

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  2. Thanks my sweet princess!
    Yeah we're getting for mold in the house, tomorrow we're having an inspector come to the apartment.
    Just trying to get doctors to listen. And now Levi might be delayed.
    I love and miss you chickie. I hope you feel better soon.

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  3. Kids do get sick. I had to keep Sabrina out of school for 20days so she could build up her immune system. One term she caught everything. And there are days at school where there are 4 kids. All the rest are sick.So don't stress just see wht is happening and do the best you can. ALL OF YOU NEED A REST!.

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