21 Days of Hell

I remember that morning like it was yesterday. October 8, 2010, Harrison's nurse had called me early morning just to update me like they often did. Everything seemed great and I let her know we would be up later in the day to visit.
If you have ever been to a NICU, they have a waiting area and then a small room where you are required to scrub in for five minutes prior to entering the NICU. You sign in as a safety precaution, I imagine. There is a board that says which Pod each baby is in. As I understood it, the different pods are something of an indicator as to how close your baby is to coming home. Pod 1 being the most critical down to Pod 5 where you are nearly out of there. That's where my Harrison was where he had finally been put into an open bed earlier in the week.
When we got up there, a member of the staff met us in the waiting area, which was very unusual. We were informed that Harrison would be needing a spinal tap- that they thought something was wrong. They told us we might want to wait until they are done to go in. That didn't stop me. I scrubbed, but didn't sign in. When I got in there, the curtain was pulled shut around the incubator they had apparently switched him to that morning. I timidly pushed the curtain aside and had to weave my way through the crowd of hospital side that had gathered around his bedside. The baby I saw was green and puffy. That was NOT my baby. Was it?
I fought to keep my emotion from surfacing as they tried to explain what and why and how. I couldn't focus on anything they were saying. I didn't understand. What was happening? He was fine...

They started him on antibiotics the next day. I don't remember at what point they spit out the horrible word, meningitis.  Even though I knew the dangers that come along with reading about medical stuff, I did it anyway. I wasn't going to over react. I kept telling myself it would all be fine. My dad had suggested I write things down as I talked to doctors daily. It was a good idea really, but I couldn't do it for more than the two days. Instead, I would talk to a family member right after talking to a doctor so that I could have someone else remember for me. I didn't want to remember.

Here are the only notes I took during this:

October 11, 2010 11:55 AM -Rod

He is having a stable shift, doing well. Mild setting on ventilator. Every once in a while will stop breathing, but does breathe well. He is on antibiotics still. The Anderson tube has been turned off to see if anything accumulates over a few hours. Want to try to take it out by tomorrow. Not sure they will try feedings. 38.9 C , 102 F  temperature at about 9 PM last night. Not much has changed. Meningitis antibiotics were given after spinal tap number two. Long term, neurological follow-up is needed. Bad part that we may not know if what caused it, which organism. Still think it is viral. 21 days of antibiotics. With what Harrison is reading, doesn’t seem to have those problems. Will start feedings again possibly tomorrow or next day so long as his gut tolerates it. He could be ready to come home when antibiotics are done.

October 12, 2010 10:32 AM –Dr. Rich-Denson

Gone up on the ventilator support. Talked to Primary Children’s and they agree with what they are doing but would switch one of the antibiotics. Think the belly caused the meningitis. Got a head ultrasound that was read as grade 1. Concerned about the back part of his brain. CT scan of his brain today. Concerned about possible abscess?  Still not feeding him. Anderson tube is back on. Platlette count is a little bit better. CRP was not repeated, but will probably be done tomorrow. MRI instead of a CT. Has good kidney function to pee out the dye. Nothing is growing on any cultures. Think it might be bacterial because of high level of protein and the white blood cell count and how sick he is. Comfortable with the sedation. Lab tests show that he is responding to the measures they are using for him.  Dr Anderson tonight. Dr Christensen on tomorrow. Dr Clark the next four days.

October 12, 2010 3:53 PM –Dr. Rich-Denson

MRI was not normal. Called neuroradiologist at Primary Children’s. He saw  cells being damaged.

Virus attacking white matter of the brain. It can normalize or it could end in significant problems such as motor function. No way to know at this point. Called infectious disease person. Still don’t know. Herpes virus, Echles  virus. Both are community virus.  Look for it in the serum for either one of the viruses. Antiviral Repeat MRI in 10 days. Dr Headlend.  No abscess. Still treating for 21 days for each thing.  Worrisome and abnormal. Still supporting breathing. When he shows evidence that his gut is getting better and will resume feedings.

I had my older brother and step-dad give him a blessing. We didn't get to hold him anymore. They made us glove-up to touch him. I felt so broken. I hated that I couldn't take his place or even minimize any of his pain. The worst thing was his not being able to cry while the ventilator was in place. For all the crap he was going through, he should at least be able to cry! Needless to say, Harrison was moved back to Pod 1.

The pediatrician went over his MRI to show me just how much brain matter had been lost. I think that was the first time I cried in front of the staff. The way he explained it made me visualize his brain liquefying itself. If I can remember where I put the picture of the MRI, I will definitely post it later.

After two weeks, I was finally able to hold him again.

We finished the 21 days of antibiotics.
We were on the right path to go home.
I thought we might be in the clear.
What did I know?