So Long Make a Wish Trip...Dear Son in the ICU on a Ventilator

We were scheduled to leave for Florida for Dear Son's Make a Wish trip next Monday... but now that won't happen.

On Saturday evening, Dad picked up Dear Son around 7:30 to take him overnight. He works 12 hour days so that is when he picks him up. Around 10 p.m. Dear Son broke out in a fever (he had been totally fine all day Saturday) so he called me and said that he had a fever. He said he was going to give him some Tylenol and I told him to watch the fever since Dear Son can deteriorate fast meaning his breathing can get very labored. I asked him to call me at midnight when Dear Son gets his meds if things get worse. I talked to Dad the next morning and Dear Son still had the fever so I told him to give him the "adult" dose of Tylenol. (Dad had given 500 mg. and the bottle said you could give up to 1000 mg. which he did.) Dad had difficulty controlling the fever with Tylenol and around 3:30 in the afternoon he called me and said that it was too early to give more Tylenol but the fever wasn't going down. He was bringing him back home to my house.

By 6 p.m. I had arrived home and Dear Son still had a fever. His breathing wasn't great but it wasn't terribly hard yet. His fever was around 101.4, I really don't remember right now but I knew he had to be seen to figure out the source of the fever. Dad wanted to take him to a local ER but I wanted to take him to Big Academic Medical Center since I knew if things headed south, they could treat it and it would save a trip from the local ER transferring him to Big Academic Medical Center. I paged his pediatric neurologist (who functions like our pediatrician) and he said to take him to the ER immediately.

We arrived at the ER and they took his history. Some time later (I don't have a lot of time right now so I'll try to give you the abridged version.) the Supervisor of the Physicians (that's how he referred to himself) came in and checked him out. He said the physical exam shows sepsis and they are treating him as such until they have more information (they took blood work). He asked if I wanted to donate Dear Son's organs (I said no.) and asked me if thing proceeded what decisions have I made (meaning do I want a Do Not Resusitate) and I said that no, I could never do that. The ICU doc came down and assessed him and they asked me the same questions. How depressing...

Around 2 a.m they transferred him to the ICU. The fever continued to go up and they couldn't get control of it. They put him on an In-rebreather at 12 liters of oxygen and had started him on Vancomycin and Zosyn. Neither appeared to be working. Dear Son has an allergic reaction of sorts to Vanco-he gets Red Man Syndrome. It's not a "true" allergic reaction but it means they have to run the Vanco very slow and give him Benadryl which they did. Of course, being the Dream Mom Super Organizer that I am, I have his allergies or reactions to Vancomycin and Zofran documented on his Emergency Information Sheet.

In desperation yesterday (my words), the ICU Attending told me that she contacted Infectious Diseases. She said that they may have to vent Dear Son but she wanted them to come and look at him to see if they were missing anything. She said that they can't get control of his fever. They had been giving him Tylenol and Motrin to get it down and it wasn't working. (As an FYI, I had taken Dear Son on 10/26/09 and gotten his seasonal flu shot and pneumonia vaccine at Big Academic Medical Center but couldn't get the swine flu injectable vaccine because they ran out.) They had previously contacted Dear Son's Pulmonary Doc (She's the Head of Pediatric Pumonary.) there and informed her what was going on and had gotten instructions for the chest pt vest and nebulizer schedule. They had been giving Dear Son nebulizer treatments as soon as we got to the ER so this was just a more schedule. As Dear Son deteriorated, they called her again to see if she could come see him right away. The ICU doc said that they were going to turn the In-rebreather up to the maximum setting to help Dear Son. By now he was on 18 liters of oxygen which is the maximum for that (Some places the max is 15 liters from what I understand but here it's 18 liters.).

Eventually, the Big Wig at Infectious Diseases thinks he's figured it all out. He's really nice and it's a good conversation. He thinks it's a viral pneumonia and they put Dear Son on the Bi-Pap machine at 100%. Dear Son does better and we are all happy. Once he gets some rest from breathing too hard, they'll try to reduce it to 60% over time. His fever begins to come down and we are now one happy family.

During the day, Dear Son had been crying out repeatedly, which was stressing me out and I couldn't figure out what was wrong. I asked if there was something for pain for him but eventually, when I saw his fingers moving, I figured out it was seizures (fevers can raise the seizure threshold) and I used his VNS magnet and they stopped. He didn't cry anymore and things were good.

I left the hospital last night after Dad arrived to get some sleep at home. I have to work today and then I would come after work and be there the rest of the week.

That was yesterday. I had a good night's sleep and Dear Son appeared to be on the mend.

In the last hour, things have dramatically changed. His fever began to spike in the morning and his breathing deteriorated. I just got a call that they had to put him on a ventilator asap and put a central line in. Things are not looking good.

I need to cancel work and get back down there. I don't know when I can update you again. Please pray for Dear Son. I don't know if this post makes sense or if I included everything but I don't have time to proof it right now.