Wednesday we were 2 hours from home bringing Nadia to see a specialist; Dan and Alyssa were with us. Earlier in the day Alyssa was a bit whiney and had a temp of 100.3 before I gave her Motrin. I rocked her, sang to her, and fed her a warm sweetened bottle of milk (used ONLY for bonding purposes...feed something sweet and pleasant in the bottle while rocking in mama's or daddy's arms, while make eye contact and hearing his or my soothing voice). She eventually seemed fine again and was even dancing around the kitchen.
When we left for the doctor, she was fine. However, once we were there she felt REALLY warm...hot actually. I tried to get a temp reading on her but that doctors office did not a temporal thermometer and she wouldn't take it under her tongue. I rushed around the building carrying my inconsolable baby, at that point, to various doctors offices trying to get a temp but no one would help us. If we were at home I would have taken her temp, given her tylenol and a luke warm bath and watched her. Heck, if I had a thermometer and some meds I would have done all but the bath there but I had nothing and she was crying and crying.
Finally someone told us that through various buildings we could get to the ER and we should probably just take her...especially she was just home and hadn't even seen a doctor yet. We scheduled her visit for next week thinking we would give her the first week to settle in a bit first.
Dan took Alyssa to the ER while I went ahead with the doctors appointment with Nadia and planned to meet up at the ER afterwards. Alyssa had a temp of 103. She cried nonstop for nearly 2 hours straight! Her face looked freckled from what seemed like maybe popped blood vessels but we were told was probably a viral rash.
Due to be newly home, having Downs, and born with a heart deformity (though she had surgery at about 8 months old), they had concerns that this could be more than just the flu. They did a chest xray, drew blood from two entry points (one point to be used for an IV as well), used a catheter to draw urine for a urinalysis, nasal swab for the flu, throat swab for Strep, and took a rectal temp. Talk about one very unhappy little girl and a heavy hearted mommy and daddy.
The only thing they could find was high white blood cell count. Unfortunately, that in itself is not diagnostic. An increased count could mean anything from kidney failure, infection, to high stress. Well, certainly she has bee experiencing high stress!!
They decided to give her IV antibiotics as a precautionary measure and have us bring her back the following day for more IV meds. When the IV was finished we were to be released...but then she threw up.
Her temp kept creeping back up and with her throwing up they needed to be sure she could keep fluids down. They gave her Motrin and Zofran for nausea. She drank some PediaLite and seemed to be okay and sent us on our way.
We drove 2 hours home after 6 hours in the ER. We were all exhausted and it was now nearly 10:00. I wanted to get the girls in bed and collapse into a deep sleep to be done with this day. However, that was not to happen.
I had changed Alyssa into her sleeper pajamas before leaving the hospital. When I pulled them down to put her on the potty, I found her covered in a flaming red rash! It was on the back of her neck into her hairline, on her shoulder blades, in her armpits, inside her elbows, behind her knees and worst around and beyond (in every direction) where her pullups touch. I feared she was having an allergic reaction to the antibiotics.
So I whisked her off to the ER. There are others closer but not with beds if she needed to be admitted and I felt certain that she would be as her temp was also back up. We drove 50 min to the hospital.
The doctor there was very concerned for the same reason the others were. If she were most any other kid we'd probably have chalked it all up to something viral like the flu that has been going around (our house had not been hit with it yet so Alyssa would be the 1st). The doctor was most concerned that she could have an infection in her heart and if he released her "we could have a really bad outcome." Dear Lord! Being in the special needs community praying for so many very, very sick kids, with many leaving this world for the arms of Jesus, there was no way I was taking her home until we knew for sure. The problem was that for her to be admitted meant starting over!! They could not just take the test results from the other hospital. All the poking and prodding would have to be done again. My heart broke for her. I tried so hard to not let them but there was no way I could risk her life over it. And so it began :(
She started heaving again but she was bone dry, nothing but saliva would come out.
They alternated between Motrin and Tylenol to keep bringing her temp down and gave her Benedryl. They ran all the tests and set her up a room for overnight observation at the children's hospital. However, the one closest to there was full so we were sent another 30 min further from home to another. We were taken by ambulance and arrived there after 4AM on Thursday morning. Have I mentioned how exhausted we were?! I mean, I was totally wiped but my precious baby was so sick and every time she'd fall asleep they'd poke or prod at her again so she was feeling it worse for sure!
By the time we got to the children's hospital and into a room her rash had begun clearing up and was completely gone by morning (the real morning, like after they allowed us to get 3 hours of sleep).
She then seemed to be perking back up. The doctor said that because the rash cleared up so easily with Benedryl it was probably not from the meds but from a virus. She felt it was all probably from a virus and since she was doing better (we made sure she would take some fluids by mouth and keep it down first) that we could go and they made us a follow up appointment with her pediatrician for later today.
When we got her home her temp was up again. I gave her Motrin and we took a long 2.5-3 hour nap. She woke up seemingly back normal and has been since! 24 hour flu??
It was scary. It also would have gone much differently if we had been home when it all began. I can look back now though and easily see many blessings from it, in addition to her good health (now):
We snuggled for nearly all of the 20 hours!When all was done she would look to me and say "ma!" and even climbed up on my lap and kissed my cheek twice.
While it was crazy and wild, I wouldn't have wanted it, and never want that for her or any of my other kids (or anyone else's) again, I am thankful for the bonding time. She has definitely taken on a new level of attachment to me and that I wouldn't change for the world.
Nadia keeping a close watch on baby sister in the ER