In the past two months that I didn't blog there have been many cute, happy, funny, and wonderfully memorable moments, comments, and goings taking place. However our "rad" family's most dominating experience during my no blogging time wasn't so cute and happy or a wonderfully memorable experience.
Most of everyone that reads my blogs knows already that my sweet two year old, Tori, was in the hospital for a week. She was in the hospital being treated for a urinary track and kidney infections, as our team of doctors tried to figure what else was wrong with her. Tori ended up being diagnosed and treated for Kawasaki disease.
Kawasaki disease is a rare condition that involves inflammation of the blood vessels. The experts don't know what causes it or why it even happens but if a child goes untreated then damage to the coronary arteries and heart can occur. Thankfully Tori is now all better and after two echo cardiograms her heart shows no sign of damage.
So let me tell you the story...
On Wednesday March 3rd I took Tori into the pedestrians office becuase for for a week she kept getting fevers on and off after being treated for an ear infection and I also noticed that a few red bumps on her back and forearms. I met with the physician assistant and she really didn't know what to say to me, nor did the doctor she brought in to give Tori a second look. They gave me an order to get Tori's blood work done if I felt like it was needed. With that I was even more worried, but I went home.
When I got home Jake and I decided to wait one day to get blood work done. The next day, March 5th, Tori was worse. She had a high fever, she had more of a rash, and was crying that her bottom hurt. I first took her to an insta-care to see if a doctor there could tell me what to do or give a prescription or something to help Tori. I never saw the doctor, the nurse talked to me and said it might be best to take her to the emergency room.
I took Tori to the emergency room, and she was promptly admitted. They found she had an UTI, but wanted her to stay for a day becuase they thought she was sicker than they knew at the time.
As her blood work, mucus, and urine lab results came back the next day (Friday, March 5th) the numbers did in fact say she was sicker than just an UTI, but the doctors didn't know with what. Her symptoms weren't normal for any one thing. Plus, if there is more than one thing wrong with you doctors have a hard time figuring out what to do.
On Saturday and Sunday it was same as Friday, more blood work with abnormal results, and still no idea what was wrong with Tori. Her rash did clear up on Saturday and Sunday, but she only looked a little better. It didn't mean she was better and it definitely didn't mean she felt better.
Tori was miserable for those four days. The UTI made it hurt to potty, and she was tired and very unhappy. Tori cried when a nurse or doctor walked in. She was traumatized by having her blood being drawn daily.
As the nurses would draw her blood Tori would scream," MOMMY, DADDY, I AM DONE! I AM DONE, PLEASE!" For the first couple days I could hold her as they drew her blood, but it soon came so impossible for me hear her crys. So I would go out in the hall walk far enough away not to hear her scream, try to think of something other how miserable Tori was at that moment, and when the nurses were done I would go back to Tori and try to comfort her.
Another hard thing for me to go through was splitting my time between Tori and Macy. No matter with which child I was with I felt like the other needed me. Someone was always taking good care of both Tori and Macy when I was away but I always felt torn.
The hardest day was Monday, March 8th. Monday Tori woke up in a much better mood. She look good and was having an easier time going to the bathroom. Her fever had broke and stayed done since Sunday afternoon. The resident even mentioned that Tori looked great. I got my hopes up that Tori was ready to go home. But then the specialist came in and said her blood work hasn't seemed to improve and wanted to more testing to my seemingly healthy and happy girl.
This news threw me so far back, I asked him to wait to do more blood work for a few more hours just to see if Tori's fever would or wouldn't spike again within 24 hours of her last fever. The specialist agreed. But like clockwork Tori's fever spiked to 103.something after 23 and half hours of her last fever. So more blood work was done and talk of treating Kawasaki disease began.
Tuesday, March 9th, Tori was sedated and was given an echo cardiogram to give the doctors a baseline of the condition of her heart. She then started treatment for Kawasaki disease. Tori was given antibodies and proteins from blood donors that has been purified and purified some more for 24 hours. She also started to take a high dose aspirin regiment. It was amazing, Tori seemed to improve almost immediately. Only hours after her treatment started Tori was so much happier, had a better appetite, and started to play more.
On Wednesday, March 10th, I realized just how hard all of this had been. It hit me like a ton of bricks. Tori was doing much better, we were going home the next morning, and all was well. I no longer needed to be super woman. I didn't need try to be strong and keep my emotions in check because the hard stuff was over. With that came a release of all the emotions I was keeping in check that week. I cried over everything that wasn't perfect, and nothing seemed right other than Tori coming home.
Finally on Thursday, March 9, Tori was released from the Hospital, and was well enough to come home. For a few weeks after to continued to take asprin daily, and gained all her energy back. Now she is as perfect as can be. We hope we never have to stay in the hospital ever again.
It is hard to imagine but Tori's rash became worse than this. Eventually her entire body was red and swollen from all the rash spreading.
Tori was able to play a little bit while he stay. She enjoyed pulling the wagon around for a little while but she discovered that she was trapped in the hospital and became very unhappy. She started to try to run away into different peoples rooms.
The day Tori was discharged we brought Macy to help Tori home. I just love Macy's face in this picture.
Yepee, we are one our way home!
I want to give a speial thanks to the many wonderful poeple who brought us treats, babysat Macy, prayed for Tori, and helped us in any way.
The day Tori was discharged we brought Macy to help Tori home. I just love Macy's face in this picture.
Yepee, we are one our way home!
I want to give a speial thanks to the many wonderful poeple who brought us treats, babysat Macy, prayed for Tori, and helped us in any way.
2 comments:
How awful Sylvia. I'm sorry this happened, and I'm glad she's well and home again.
I'm so glad she is better now, too. How scary for you guys! I'm so grateful for all the wonderful people in that hospital that helped both our kids get better.
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