8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: Hospitalization 2014 - Part 2

Friday, July 25, 2014

Hospitalization 2014 - Part 2

So I am going to continue our saga regarding Caleb's hospitalization.  If you didn't see the first part, you can see that here.

So Caleb had three nuprogen shots and his bone marrow responded and actually made too many nutrophils.  By Monday, we were now seeing the infectious disease doctor to see if he had any recommendations about Caleb's incision and what to do about the vagal nerve stimulator.  Finally, Caleb's neurosurgeon came in that evening while I was home taking a break.  He didn't want to take the device out, especially since there wasn't certainty that there was infection on the device.  The next plan was for the infectious disease doctor and the neurosurgeon to talk and try to come to a meeting of the minds.

Even after that discussion, the neurosurgeon was not intending on taking the device out because he wanted to talk to Caleb's neurologist who happened to be out of town that week.

The next day I sat down with the neurosurgeon, the hospitalist and our nurse and had a discussion about our options.  Tony and I had decided to let the neurosurgeon talk to Caleb's neurologist and see what happens after he finishes all the antibiotics.  The infectious disease doctor said he believes that if there is infection on the device he will get another infection in two to three months and then we will have to make the decision about whether or not to take out the device or put him on a low dose antibiotic daily.  But all of this is also contingent on what is going on with his neutrophils.

You see, after we left the hospital on the 10th, we had an appointment with Caleb's pediatrician to follow up and recheck his labs.  That day his nutrophil numbers looked really good.  But Caleb had started having at least one episode of vomiting a day and he had never gotten his appetite back. 

By Saturday, Caleb was unable to keep anything down, including his medicines. I ended up taking him to the ER and learned that his nutrophils had dropped 600+ points since Wednesday.  The ER doctor called Caleb's pediatrician and she said to have him come in Monday and we would recheck everything again and see how he's doing.  Caleb still wasn't eating, but he was at least drinking, even though he was still vomiting. 

But by Tuesday, he wasn't even drinking and he was vomiting multiple times.  I called the pediatrician and she told us to take him to the ER.  We arrived at the ER at 7:00 p.m., was in a room at 2:00 a.m. and they admitted him at 5:00 a.m.  What a long night.

So we've been here since Wednesday morning and they really haven't done much.  We did try to get an upper GI, but Caleb refused to drink the contrast.  Caleb's neurologist came in last night, after they finally added him as a consulting doctor - darn HIPPA laws!!!!  And he adjusted Caleb's VNS down as he's thinking that might have been part of the vomiting problem.  And today has been a much better day in that regard.  He's eaten and drank and taken his medicine and kept it all down!  Thank you, Jesus!!!!!!

Caleb's nutrophil numbers have continued to drop.  We will need to follow up with the hematologist when we get out of the hospital, since he does not come to this hospital to see patients.  Until then we will be sticking close to home with him to hopefully avoid him getting sick since he is immune-compromised.  I just hope it doesn't take long to get an appointment.  Tony and I have already talked about wanting to have a bone marrow biopsy done to see why his bone marrow keeps losing the nutrophils.

I'm praying hard that we can go home tomorrow.  I'm really tired of being contained in this room!

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