After two weeks of Katelyn taking a nap (or 5) every day, I took her into the pediatrician (Friday). This just wasn't her normal behavior. She never takes naps, and if she happened to, she wouldn't go to bed at night. But she was sleeping lots and still begging to go to bed at night. The doctor checked her for some normal things that would cause tiredness like anemia and a bladder infection. Both tests came back negative so the next day (Saturday) he send us to the lab for some blood work. Her results came back all negative- even for mono.
Monday she developed some new symptoms. I noticed when I got her out of the bathtub that she seemed a little wobbly. Unsteady on her feet. By the end of the day it had worsened. The next morning I was really alarmed when she was still doing it and her speech was not always clear. We immediately went to the doctor (Tuesday). He was quite concerned and sent us immediately for an MRI. I later found out he was looking for a brain tumor. SCARY! But the scan came back negative. So now we knew what was not going on, but not what it was. He sent us home while he did some searching and calling. Wednesday I talked with the doctor on the phone. He was still searching and wanted K to be seen at Primary Children's Hospital. So we made a plan to head up the next morning to the ER there.
December 4, Thursday morning we left. I picked up Jeff on the way at his office. Mid drive the doctor called me. (Jeff was driving.) Change of plans- go to admitting. OK. We had packed a few things in case we were admitted, but we weren't really prepared. Ryan (2 months old) was with us too.
We were admitted. The parade of doctors began. Pediatricians and Neurologists, all wanting to hear the same story again and again. It was decided that they would perform a lumbar puncture on my sweet Miss K. :( So she couldn't have anything to eat or drink since they would be putting her under. She dealt with the IV insertion amazingly well considering she had already had that done once for the MRI and had been poked for blood draws 3 times already. They did the procedure in her room as Jeff and I were in there too- pacing in the little corner that wasn't occupied by all the doctors and nurses. The results came back perfect.
Ryan can't bear to watch the LP. Neither can mom or dad.
Ryan can't bear to watch the LP. Neither can mom or dad.
Later that night Katelyn got all hooked up for an EEG to monitor her brain waves while she slept. The doctors were looking for seizures. She got an awesome hat and about a gazillion wires stuck to her head for the night. The next day the results look normal.
K sleeping soundly in her bed. Rice Krispie treat still in hand.Friday morning comes. The doctors are deciding whether to run more tests or not that require anesthesia. Katelyn is begging for food. They finally let her eat at 11am when they decide the plan for the day. A few more blood tests and more waiting. In the afternoon they convene and decide on a diagnosis.
Post-viral Cerebellitis-
They put it together like this- she had a virus (no symptoms other than tiredness). The virus settled in her brain. Her body is fighting the virus, but also her brain. Swelling occurs in the cerebellum impairing her motor skills (ataxia) and her speech. There is nothing they can do but let her body recover on its own. K should be better in 3 weeks. They will keep her another night for observation and we go home on Saturday.
Ethan and Erin come up for a visit. They think the playroom is the best and want to come back soon. Me- not so much. Two nights of no sleep with a 4-year-old and newborn are not so great.
K gets to ride in the wagon on the way out. She was so happy to leave!
Post-viral Cerebellitis-
They put it together like this- she had a virus (no symptoms other than tiredness). The virus settled in her brain. Her body is fighting the virus, but also her brain. Swelling occurs in the cerebellum impairing her motor skills (ataxia) and her speech. There is nothing they can do but let her body recover on its own. K should be better in 3 weeks. They will keep her another night for observation and we go home on Saturday.
Ethan and Erin come up for a visit. They think the playroom is the best and want to come back soon. Me- not so much. Two nights of no sleep with a 4-year-old and newborn are not so great.
K gets to ride in the wagon on the way out. She was so happy to leave! Fast forward another 6 weeks--
K is not better yet. She is slowly showing signs of some improvement. She is not so ataxic. Her newest symptom of tongue thrusting that showed up 2 days after leaving the hospital has lessened. Now we are left with 1-2 naps a day and a very moody and unreasonable girl at times. I know that she is probably just sick of being sick. I am too. I want my sweet Miss K back, with her spunkiness and teasing of her siblings.
So please excuse my lack of posting. Things around here aren't as they should be. I am trying to get caught up on some things. So look for some back dated posting.
And when it rains, it pours. My sweet sister has relapsed into TTP. She had her baby delivered by C-section on January 10 (3 weeks premature). He is big and healthy. My sister is still fighting to get better. She had her spleen removed last night to try and get rid of all the bad B cells in her body that are killing off her platelets. So far it seems to have helped. My mom has flown in to help take care of baby Jeremiah and big brother Abram. Please keep us all in your prayers. I know it can help.
How can something so sweet cause so much trouble?
K is not better yet. She is slowly showing signs of some improvement. She is not so ataxic. Her newest symptom of tongue thrusting that showed up 2 days after leaving the hospital has lessened. Now we are left with 1-2 naps a day and a very moody and unreasonable girl at times. I know that she is probably just sick of being sick. I am too. I want my sweet Miss K back, with her spunkiness and teasing of her siblings.
So please excuse my lack of posting. Things around here aren't as they should be. I am trying to get caught up on some things. So look for some back dated posting.
And when it rains, it pours. My sweet sister has relapsed into TTP. She had her baby delivered by C-section on January 10 (3 weeks premature). He is big and healthy. My sister is still fighting to get better. She had her spleen removed last night to try and get rid of all the bad B cells in her body that are killing off her platelets. So far it seems to have helped. My mom has flown in to help take care of baby Jeremiah and big brother Abram. Please keep us all in your prayers. I know it can help.
How can something so sweet cause so much trouble? Baby Jeremiah Blake Wilson
8 lbs. 40z. 21"
9 comments:
Oh Amy! I cannot imagine what you're going through! You are so strong. I love you, and I'm so glad we're neighbors and friends. I'm here if you need me for ANYTHING! You guys are constantly in our prayers.
I'm glad that she is doing better now, that is really scary! And it is so true how much of a toll babies and childbirth can take. Good thing they are so cute :) hope your sister gets better really soon.
K's case has made me think of Mystery Diagnosis and also just made me feel bad for her and you. You are helpless to fix it and you want to so badly.
I keep you in my prayers because I don't know what else to do.
I'll add your sister to our prayers, too. That is tough.gl
I'm so sorry that all of this has happened! Poor girl. And poor you! Keep us updated on how she is doing.
You are all in my prayers every night. Game night...what are you all doing on Friday night?
Friend I miss your big smile. I am really sorry that this has happened to your cute family. I hope she recovers really fast, nothing is worse then a sick child. By the way your baby is to die for,he is the cutest thing that I have ever seen.
Shanna
Amy we will keep K and your sister in our prayers. Let us know if we can help in any way!
I am so sorry, you are still in our prayers.
Oh my gosh, Amy. How terrifying. I would have been FREAKING OUT. Poor K. My little man's problems all started out with a stupid virus, too. Blah. The worst part is not letting her eat. That doesn't go over well with little kids. :) I hope she's gotten better by now. Poor little K.
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