Tuesday, May 19, 2009

Spent the last 3 days in Children's Hospital with Josh (pics)

I took him out of his crib after being in it for quite some time and let him sit next to me on mine and daddy's comfy beds!
In his "jail" lol he was such a trooper though!

On his way to his lower brain stem MRI. Looking so happy, not knowing he would be sleeping in 20 minutes

Finally feeling a bit better and acting more like himself
Whenever nurses or doc's would come in he would look at them so concerned like "NOW what are you going to do to me??"
He will rip an IV out of his arm in a split second, so we had them put it in his foot this time. Then double taped it so when he yanked on it, it would not move. Then made this make shift sock with a washcloth. It worked great, he really didn't mess with it at all Hi guys Josh sure made the last few days interesting! Starting Friday, Josh came home from school Friday and I went to see what he was doing at 6:50. He was dead asleep in bed. We didn't think much of it. We figured he had a long day at school, so we let him sleep. Saturday came, he woke up later than normal and tried to take a couple naps thoughout that day also. Then again went to bed earlier than normal. We wondered if he was getting the flu or a cold. Hubby's son and a friend of Rayanna's were here for the weekend and on Sunday Josh woke up again really late. Around 11:30. He had breakfast, then had lunch at 2:30. At 2:45 he got up and went back into his room and tried to go back to sleep. Hubby got him up to come finish his lunch. We wondered if fresh air would do him some good so we took all the kids out back to play volleyball, frisbee and kickball. He was running around but kept sitting down for breaks. We came in the house awhile later to start grilling dinner. About 10 minutes after I started peeling potatoes I went to see what Josh was up to and he was asleep again.
We ate and had to drive Tyler and Ray's friend home so we decided to take him to Children's Hospital to be checked out because it is so unlike him to sleep the way he had been. We arrived there around 7:30 PM and went into the ER. We worry about inner Cranial pressure with him and have always known a shunt needing to be put in his head was a possibility. When we got to Children's and brought back his fever was about 103'. He layed down and went back to sleep again. While he was sleeping he started making these weird movements with his tongue, and his head started almost convulsing would be the best way to explain it. When the movement with his tongue started hubby went and grabbed the doc. The doctor watched the remainder of this happen and from the looks of his movements you would have thought he had just had a seizure. But he didn't. He was to responsive, even though he was lethargic.
They did blood work right away, and a CT, and a lung xray. This is where everything got so scary, and so familar from years before! His white blood count was off, implying he had some sort of viral infection going on. His sodium was very low. His blood pressure was extremely low. They said he had pneumonia in the bottom of his left lung, and said his left and right ventricles were extremely enlarged in the CT. Which would imply inner cranial pressure.
We already knew they would be admitting him. The ER doctor called the Neurology team and waited for a copy of a previous copy of an older CT to compare this new one to. For some reason the ER staff could not get their hands on a copy!?
Around 3:30 AM, the Neurologist came in and first said to us (With a hard copy CT in his hand) it was totally unacceptable that the ER staff hadn't located it before he got there. He said he woke a few people up but got his hands on it because we needed it period. That is where the relief came from. The Neurosurgeon told us they were enlarged, but that is normal for Josh. He told the hospital they needed to get a CD burned with these images because if we were ever to be somewhere, say up north and they would have seen these CT's they would have taken him in to shunt him immediately. So we were told they still wanted to admit him because of everything else going on, but it didn't need to be intensive care where they originally planned.
About 4:30 AM we got him into his room upstairs and settled. The strange this is his fever went from 103 to 94.3 in a couple hours period. He was so cold. His blood pressure was still pretty low when we got upstairs also. So around 6:00 AM after Josh was all tucked in, had his antibiotics started and was asleep. Dad and I layed down on our chairs next to him to try to sleep. We slept almost 2 hours, when the Neurosurgeon came back into our room and woke us up. He told us that him and a Chief doc and a few other's on the team had read all of Josh's old records and reviewed the CT's again and they believed that from something they saw on the CT's he had type 1 Chiari Malformation. We obviously woke up right away and they scheduled a sedated lower brain stem MRI as soon as they could. We were told if it were confirmed he had this, they would need to do a head surgery. We got downstairs to radiology around 11 and they had him alsleep a bit later.
He was brough back up to his room when the procedure's were done (they ran a couple other tests while he was alseep) and the waiting game began. It wasn't until this morning it was actually confirmed, they were wrong and he did not have it. So in a 24 hour period we were first told he had inner cranial pressure, to he had Chiari Malformation. All to be told in the end he had neither. THANK GOD! We were so relieved. We were also then told he didn't have pneumonia yesterday (Another thank god!) but man oh man were our emotions running high! He finally after 38 hours got to eat and he did great with it. He got to drink something after about 28 and was so happy because I am sure he was so thirsty!
So this morning they ran more blood work, his white blood cell count hadn't changed, but they had already treated him with some hefty antibiotics and told us we could go home. He was such a sweetheart being in the crib. He is 10, so he has not been in a crib for some time. But he doesn't understand to stay in a bed so we had to put him in one. He was great! He is feeling way better today, and we are home and happy ;)
It's been an exciting 3 days full of ups and downs and all arounds. But Josh is doing good and that is all that matters! Hubby and I are exhausted and it will be great to sleep in our own bed tonight that's for sure ;)
It is beautiful here in Minnesota today! Sun is shining, it is 89 degree's. Would be a perfect day to BBQ, if we weren't so exhausted!
I hope you are all doing good and having a good week!
Love & Hugs, Robyn

P.S I didn't spell check this so sorry for errors


  1. Wow, scary time. I have been there done that, so know how scary it can be. Glad it turned out well :o)

  2. Robyn,
    Sorry to read about what you went through with Josh. Glad he doing well and back home. Hope you all have a relaxing weeekend and enjoy that warm weather.

  3. I'm so glad everything turned out ok with Josh hon. I'm keeping him and your family in my prayers on the smoke. Try to get some rest. (Hugs)Indigo

  4. That is so scary Robyn. I am so glad things are alright. I am also praying for you all.

  5. glad josh is back home & doing better.
    always scarey stuff when something like this happens, esp to little ones.
    sending hugs, support, & prayers.
    God bless...

  6. It's so good to hear all turned out ok for Josh. What a worry it is when something like that happens. And what a relief when all is ok again.

  7. Thank God that Josh is okay. How is mom? I pray ok as well.


  8. I came by from call for support. I'm so thankful that Josh is doing better. I know it was such a scary time for you all. Keeping you all in my thoughts & prayers

  9. Wow Robyn what a day/night/day/night you had. Glad to hear Josh is better, I know it scared you. He is such a sweetie and a trooper

  10. So glad to read that Josh is better, know this had to be such a tough time for all of you. He's in my thoughts and prayers as are you dear. Did they ever come up with what caused this after all the possible causes came back negative; was it a virus?

  11. Chiari Malformation is what my son and husband have. We also have a young girl in our support group who has Chiari and the same condition as your son. Crainiosyntois? Not sure of the spelling.

    Glad everyone is home and feeling well.