Dear Son Medical Update: Making Progress

It was a very long day yesterday. The day started at around 4:15 a.m. with Dear Son choking and struggling to breathe. The hard part was that normally, if Dear Son has a problem, there is time to do some things to help him, like I did yesterday. Unfortunately, he went downhill so very fast, that I had to call 911 immediately. They took him to Local Hospital however he was a bit out of their league. He oxygen saturation was 85%. He was crying out and struggling to breathe. I asked about a nebulizer and after a while they started one and gave him a breathing treatment for an hour. I had tried to do that at home however he wasn't stable enough and I thought he was going to choke to death.

Once we arrived at the Local Hospital, things didn't improve much. The biggest issue was that Local Hospital doesn't see many of these kinds of patients so they are in over their heads. They didn't seem to know what to do. I had asked to transfer him to Big Academic Medical Center (BAMC) and gave them the numbers to his doctors. The ER Doc said they couldn't transfer him because they didn't have any rooms. One of the issues that also made it challenging was that normally when Dear Son has issues, I page Ped Neuro Doc (who functions as his primary) and he's able to get us a room. He was on vacation and wasn't available. He always takes such good care of Dear Son and I that I admit we are probably a bit spoiled. It was harder having to go through the "regular" channels to get things done. He has a great reputation of taking good care of all of his patients though.

I paged the Head of Pulmonary at BAMC, who is Dear Son's doctor. She was called in last fall to care for Dear Son and I've only seen her once or twice in clinic so I don't know her very well at all. I talked to her at 6:35 a.m. and she said that the ICU had rooms as of Sunday night and that it didn't matter if they had rooms or not, that he needed to be in the ICU at BAMC right away, given his history. If for some reason, they didn't have room after he arrived, they could always transfer him to the other Big Children's Hospital but that he didn't belong at Local Hospital. She was leaving on a road trip in an hour but she said she'd call the other Attending Pulmonary Doc and her Pulmonary Fellow to take care of Dear Son and get his admission started.

Unfortunately, nothing had happened so I made a million more phone calls until things go done. The Pulmonary Fellow had been dragging her feet and was waiting for all of the blood work to be completed at Local Hospital before she even CALLED the ICU! Had she made the phone call, they would have known Dear Son's history and admitted him! This fellow is new and didn't seem to know the procedures very well. Ugh! On a positive note though, I was able to talk to Ped Neuro Nurse at BAMC and she was able to help facilitate everything so that helped immensely. I was very appreciative of that.

In the meantime, the Local ER Doc refused to transfer Dear Son. Dear Son kept crying out and struggling to breathe. His oxygen saturation stayed around 86-88% for several hours and finally around 10 a.m. the transport unit arrived to take him to BAMC ICU, some six hours after our ordeal had begun.

As you know, I came home to grab a few things and then head to the ICU. Once I arrived, it was a little unnerving since it brought back all of the memories of last November when he was on a ventilator. When I walked into the hospital, it was as if all of the oxygen had been sucked out of the room. I took a deep breathe and went up to the ICU. Last November was probably the absolute worst hospitalization Dear Son ever had. Not only was he terribly sick, but it was just plain difficult. The hospital staff didn't know the policy for contact isolation for the swine flu so each person would tell me something different. Finally, I spoke with the Head of Infectious Disease there and he was able to clarify the policy for the staff. Dear Son's Ped Neuro Doc did a great job too going to bat for us. In addition, they also made a huge nursing error and forgot to remove some elastic stockings on Dear Son and it tore up the entire backs of his knees and he was left with huge open wounds on them that took months to heal. I contacted the higher ups and they addressed the issues. I vowed I would never go back again. The bottom line was that I didn't have very good memories. To make matters worse, just last week, I had ordered medical records of the hospitalization and they NEVER even mentioned or documented the error! I was furious!

So yesterday, when I arrived in the ICU, they had Dear Son in the EXACT SAME ROOM that we had last year! All of those horrible memories flooded back. The good news this time was that the staff couldn't have been nicer and Dear Son didn't have to be vented and they were able to care for him. I was thankful that they were able to get him in yesterday and there weren't any issues unlike the swine flu hysteria that engulfed the ICU last fall when we were there.

Once he arrived, they were able to stabalize him, put him on more oxygen and normalize his oxygen saturation. The ICU Attending was one of the physicians that took care of him last year and is one I liked. By late evening, they had run several blood tests and done a chest xray and found he had a right lung pneumonia. They assume he aspirated his secretions. Luckily, we caught it early and he was able to move to a regular floor and out of the ICU.

Dear Son has breathing issues last night but looks much improved today. He is on 4 liters of oxygen and breathing much better. They are giving him chest PT four times a day. In addition, his blood work didn't look very well. We had an issue earlier this year with his blood platelets being low due to one of his seizure medications. At that time, we had decreased the medication but ended up adding it back after a few weeks. Currently, they'll hold the med and then re-introduce it once the levels come back up.

In addition, they'll be performing a sleep study on him. As you are aware, Dear Son had seizure issues this summer (he has intractable seizures) and he had choking issues when his seizures weren't controlled. The Pulmonary Doc asked me about them and since he's had some issues, she decided she wanted more information and will be doing a sleep study.

We'll probably be there a few more days. Dear Son looks much better today. Not only is he breathing better but his eyes aren't rolling back in his head like they were yesterday. They need him to breathe on his own without oxygen before they'll let us come home. At that time, I'll need to do the chest PT twice a day for twenty minutes.

Dear Son is still sleeping a lot. I worked today so Dad took over early this morning until I get back this evening. I'll be there the rest of the week however it looks like Dear Son should be o.k. and that they caught the pneumonia early enough. I'll doubt I'll be able to post again until I come back home in a few days but it looks like we are out of the woods so to speak. Thank you for all of your wondeful comments and prayers for Dear Son.