Wednesday 8 May 2013

Fresh Start in a New Month

Have you ever been really glad to see a month end and a new one begin? This year May felt like a new start. The month of April and the end of March were not the most pleasant of times for us this year. April brought layoffs at the company Husband works for. For the first time in 8 years, he was laid off.

Sleeping while the nurses got things sorted out.
March ended with Kiddlet in the hospital; April began the same way. She's okay now, but boy did she give us a scare. Kiddlet had been complaining about a stomach ache for 3 days; on day 4 she had a slight fever and was really tired. Day 6 she started vomiting every 3 hours; more often if she tried to drink something. Most frightening was the small blood clots in her vomit the first time. I hauled her to the emergency room where they collected blood and urine samples and did chest and abdominal x-rays. We were told everything looked normal, prescribed an antacid and sent home. The vomiting continued right on schedule and by the evening of day 7 it was clear that she was becoming dehydrated.

Strong-Willed One wanted to see Kiddlet's iv.

The next morning (day 8) I took her to the pediatrician. Now, I like our kids' doctor, I really do, but that particular morning she wasn't really hearing me. She gave me directions on what to feed Kiddlet and how often and said to come back in a few days if things didn't get better. I looked at her and explained again that Kiddlet could not keep water down, that it had been 2 days since she could keep water down for more than a few minutes. The doctor looked at me and said, almost as if testing to see how serious I was, "than I'll have to admit her." My response? "Thank you," with a sigh of relief.

She would fall asleep in the oddest positions.

I honestly believed that once Kiddlet was rehydrated she would perk right up and come home. Nope. A few hours after the iv was started, the diarreah began. A few hours after that it turned bloody. Kiddlet was lethargic and slept most of the time. They gave her Gravol for the nausea and she threw up anyway. Day 8 an ultrasound was done; I was told it looked normal.

Waiting for the ultrasound.

Day 8 was also the day Husband was able to come up to the hospital. We happen to be a one vehicle family and I had our van. A former co-worker that Husband is still in touch with heard what was going on and offered to make the one hour drive and bring Husband to see us and retrieve the van. (Huge thank you to Husband's friend and my friend who took Strong-Willed One and Little Guy so this could happen!) The day Kiddlet was admitted to the hospital, a belated birthday package came in the mail. This timely arrival meant a surprise gift for Kiddlet.

Opening presents.
Coloring with Dad.


Day 9 she finally seemed to be doing better. Fluids were staying down, she was allowed soft foods and she was sitting up and talking. That lasted until the middle of the afternoon. I was so disappointed. We really thought she'd be going home the next day.

Day 10, the day before Easter, was a roller coaster kind of day. Very Dear Friend came out to the hospital to stay with Kiddlet while I took her car, went to my in-laws to shower and then to my sister-in-law's for the family Easter gathering and to see Strong-Willed One and Little Guy. Just before Very Dear Friend arrived, the new on-call doctor came to see us. She was really concerned by Kiddlet's condition and some questionable spots on the ultrasound. This doctor ordered a CT scan. Very Dear Friend arrived, helped Kiddlet drink down the very vile fluid for the scan and pretty much held our hands through the insertion of a second iv line for the x-ray dye. After the scan, the nurse said it will be at least an hour before the doctor would be in with the results and I should go ahead and leave. I was able to have my shower, then, while walking to my sister-in-law's house, I got a call from the doctor explaining the CT showed a thickening of the bowel and possibly a need for her to be scoped. This meant Kiddlet was being transported to a Children's Hospital and I should get back as soon as I could. I phoned my mom and asked her to come be with us, said a quick hello to my kids and the family and left Husband to make overnight arrangements for Strong-Willed One and Little Guy so he could join us. (Huge thank you to our family who stepped up and cared for the kids!) While all of this was going on, Very Dear Friend had packed up all our stuff so I didn't have to worry about missing anything. We made arrangements for her to meet Husband with the bags (couldn't take them with me) and got Kiddlet strapped in to the transport stretcher. As we were leaving, Husband called to say he would be late; he had a flat tire.


Transported to Children's Hospital.

We arrived at the Children's Hospital around 8:30pm the same day the CT was done. Shortly after,  Husband, my mom and my step-dad arrived; we settled in for the night.

The next morning (day 11,) was Easter Sunday. We had three different groups show up with Easter gifts; we were blown away.

Dad opening her first Easter gift.

This was also the day the gastroenterologist came to see Kiddlet. He listened to the story from the beginning, did an exam and asked Kiddlet if he could take off her socks and look at her feet. No one had done this before; she'd had her feet covered from the day she was admitted to the hospital. On her feet was the beginning of a rash called purpura.

The small red dots are the beginning of purpura.
                                                          
Other foot.

The doctor diagnosed Henoch-Schonlein Purpura (HSP). That the doctor was able to make this diagnosis so quickly is very impressive. Kiddlet did not have the majority of the symptoms and to this day we have no idea why she got the HSP. Anyway, the treatment for HSP is Prednisone steroids. Within hours of the first dose, Kiddlet perked right up. She was sitting up and telling me all about the things she'd noticed during transport, how much she wanted to eat noodles and macaroni and cheese and more noodles and a strawberry jam sandwich.

Making use of one of the Easter gifts.

 The next day they stopped administering the anti-nausea medication and Kiddlet was able to go to a craft session where she got to paint a t-shirt and bring another painting craft back to her room. By day 13, Kiddlet's iv was turned off and she was given permission to go to the playroom. That evening she took her medication orally which meant the iv was no longer necessary. Day 14 she was released to come home.
 
Snuggling with her new bunny from the Ronald McDonald room.

The Children's Hospital had a Ronald McDonald Family Room.

This place was such a huge blessing. The volunteers were amazing, there was always coffee on, a kitchenette stocked with donated food we were able to help ourselves to, stuffed animals for patients who needed a friend, a washing machine and drier (no cost) and lounging areas.




 
Kiddlet came home on a Wednesday. That Friday she was feeling well enough that we let her do a half day at school. She came home and fell asleep less than 10 minutes later.
 

Sleeping after her first half day back at school.

Kiddlet has been home for 5 weeks now and is doing fantastically. She has had her first follow up appointments with both the gastroenterologist and the nephrologist (for her kidneys, a common complication of HSP.) Both doctors are pleased with her progress and have no concerns. She sees the gastroenterologist again at the end May and the nephrologist at the end of June.

We are blessed with amazing friends and family. We had a number of people willing to take Strong-Willed One and Little Guy the week following Easter so that Husband could return to work; thank you. I also want to thank Mom and Step-Dad for coming to be with us and everyone who sent up prayers.

After tumultuous April, May is off to a good start. Kiddlet is doing well, Husband has been called back to work and gardening season is upon us.

2 comments:

  1. This is so crazy to see and read. It just made me feel so relieved that things are better and it reminded me of how scared I was. I love that little one so much. And the rest of you too. Glad things are on the upswing. :)

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    Replies
    1. Me too! Putting this post together was actually kind of brutal. I cried more while working on this than I did while we were in the middle of everything.

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