I haven't written on this blog in quite some time. Last week I was fortunate enough to bring my daughter Mackenzie home from the hospital after spending 52 days in critical care.
She went in to the hospital with a fever of 106 and with having a seizure. I had been out to dinner with a friend and was still 30 minutes from home when the nurse called me. I tried to make it home before the squad arrived so that I could be sure to ride in with her, but I was maybe 2 miles from the house when they arrived. I turned around and went straight to the hospital.
This isn't the first time I have had to go alone to the hospital to meet one of my kids coming in by squad and it never gets any easier. My mind races a thousand different directions and all of them ending in the nightmare of her dying before I can get to her. You'd think dying would be horrible enough, but for some reason knowing she would be passing on surrounded by strangers is worse still. Luckily she and I made it there roughly the same time and I was able to quickly assess her and see for myself that the seizure had stopped. Her previous seizures, which had been over 12 years ago, have been irretractable (status) and they have had to intubate and induce a coma in the hopes of stopping them. So seeing that the seizure had stopped on its own was a relief. Seeing her respond to me was another relief. Prolonged seizures can sometimes cause brain damage and I didn't know how long she had been in one. We spent quite a few hours in the emergency room and she even seemed to stabilize some on her own with a few breathing treatments and some more Motrin. Her chest xray was even clear. But her fever was not coming down fast enough and because of the meds to stop her seizure were given, her breathing was slowing down. She needed to be admitted.
A few hours later and we are being admitted into the critical care unit. The nurse practitioner and the attending physician were just outside the room speaking with me as Mackenzie was being assessed by the nurses and respiratory therapist. The NP told me what all she planned on doing for her and then the attending spoke up and said that she needed to be tested for the flu. The NP had not included that test in her plans because they had yet to have anyone test positive this season. The attending wisely said "there is always the first". Mackenzie was tested and found to be positive for influenza A. I was glad to have something identified so quickly and was hopeful that this meant she would have a short stay.
She was put on a bipap mask since her breathing was so diminished from the antiseizure medication. She did well while on the mask and the next day the new NP gave the order to take her off of bipap and put her on just a nasal cannula. She seemed to be fine at first but then she started struggling. I asked to speak to the doctor and the same NP came in the room. The Advanced Nurse Practitioners are seen as being the equivalent to a Fellow there, something I don't agree with at all. This NP did not examine her or listen to her lungs or anything but still ignored my request to put her back on her bipap. I got the normal "she only needed it because of the Versed, Mom. She's doing fine". I didn't agree so I asked to speak to the Attending. It was close to 3 hours later before the same NP came back in and said that it was decided to keep her on the nasal cannula. I hated that our stay was going to start this way. I hate arguing with the so early in the "game" because I know that just means that we will be treated like shit the duration of our stay. But sometimes you just have to. I had to. Eventually he responded to every request I made with "we just aren't going to do that, Mom". Finally I got him to agree to getting a blood gas since we couldn't agree and he refused to let me speak to anyone else. A blood gas was obtained and even though I don't remember all of the numbers, I remember one.... her pH..... her pH was reading 7.22. Mackenzie was in respiratory acidosis due to the ego of this NP who would not listen to me and my assessment. She went back on bipap.
I was doing my very best to channel Mike and what he would have me say when I needed to speak for him to get his needs met at the hospital. My was of communicating before Mike was very curt and exact, after Mike, I am more "do you think we could consider?"..... It is exhausting to me, but he is right..... it usually works.
At this time, Kenzie was stable enough that I could reflect back on the last time she was there. The last time she was there was just a couple months after Mike had passed away and I was not in the best mental state. I didn't seem to be this time either.
In order to keep this blog shorter, I'll stop with this. It also never gets any easier to see people approach your child who is sick and scared, and not even address her at all. Not one little acknowledgment that she is a person with any thoughts or feelings. They just start doing things to her without one f-ing word. I try to gently coach them by talking to Kenzie on their behalf telling her what they are doing and that she's ok. But what I really want to do is hurt them..... every single one of them who show no respect for my daughter's life, I want them to have to experience everything they are doing to her without any ability to communicate or stop anyone. Don't worry..... I never have. I never will. But telling them isn't enough. In order for them to change how they treat my daughter, they will need to experience something personally traumatic. And that is a damn shame.
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