Monday, September 8, 2008

I wish Needlenoggin could go to Little Monkey's hospital

Seriously. Because Little Monkey's hospital has never let us down, not with Rorysaurus or Little Monkey. They are kind, compassionate and their care is uncompromising.

However, Needlenoggin is too old by a few years, so he was at Highland. After some coaxing, he got a visit by a Patient Advocate. She was able to wrangle up Kristi (a neurologist there who was one of the ones who cared for Needlenoggin before and is a lovely, competent, kind woman) and the attending doctor (Eric something), who came and evaluated Needlenoggin , got him a CT scan and an xray of his arm to determine what was going on with his decreased function, and were able to get Needlenoggin shipped back to Santa Clara Valley Medical Center. This was important, because Needlenoggin had NO physical therapy during his 7 day stay at the county hospital, wasn't taken out of bed once, didn't see a doctor for a four day stretch (although they came and looked at him while he was asleep, they never woke him to talk to him), for a while he was not given his correct medications, and they only did some of his care regimen once in the seven day stay, so he was wracked with pain (when they finally did it on Monday (?), I was on the phone with my mother and could hear him screaming over her voice, the hospital noise and all the nurses).

So, going back to SCVMC seemed like a really, really good idea. When the EMTs came to move him, however, Highland was unable to find a slider board to get him onto the gurney, and took no steps to get one, so, with staples still in his back, the 2 EMTs and 3 nurses had to use TRASH BAGS and his sheet to move his 250lb frame into the gurney, and even with 5 people, they struggled.

However, sometime after his last check at SCVMC (before his 8/29 transfer to Highland), he developed DVT (Deep Vein Thrombosis) clots in both of his legs, which were triggering spasms so violent that he kicked one of his nurses in the chest on Sunday night. They are attempting to dissolve the clots with extra blood thinner, but if that doesn't work, he'll need more surgery. So, he's in severe, severe pain down there, has a uterine tract infection (they assume) and says he feels like he's in an abdominal binder all the time, since he's feeling constriction and is having a hard time breathing. They've reduced his anti-spasm medication and his anti-anxiety medication to half doses because they make him tired and the sleepiness during the day bothered on of his doctors there. (What he explained to me was that after a full day of therapy, he was exhausted and fell asleep. They were unable to wake him and thought he'd fallen into a coma, and rushed him into a CT, only to discover that he was just sleeping soundly. This freaked out one of his doctors, who cut his medication. However, when Needlenoggin was healthy, waking him was a chore, and it would sometimes take me 15 minutes of calling and shaking and pinching to get him up, so this doesn't signal, necessarily, a real problem). He was also not given his anti-depressant at all by the night crew, and while I was down there, was in tears with worry and pain and having panic attacks. I simply cannot see how while they are dealing with these clots and spasms (that cause him to scream and bite his lips until they bleed) sleepy is seen as more of a problem than screaming.

His nurse, ("Evil") gave him one does of pain medication, and when, an hour later, her was screaming, told him she'd just given it to him. She refused to identify his medications to me when she gave them to him, and was defensive and angry. In her whole shift, she hadn't turned him once (to prevent bed-sores) and had yelled at him about watching his fluid intake. He's been on a very, very low fluid regimen (told not to drink his water, only the juice and coke (?) that they bring him with all of his meals) because otherwise his output in a four hour period is over 1000ml. This only presents a problem because the nursing staff doesn't want to empty his bladder more than once in ever 4 hours, not because he's in any way over hydrated, so after yelling at him about drinking all the fluid that they serve him, they put in a continuous catheter. This caused him a lot of pain, and he asked the nurse to check it. She told him it was draining, which meant it must be in properly, and released a little pressure on it so he'd "stop whining." When he complained about his phantom binder, she rebuked him for not remembering that his binder had been taken off. At this point, Needlenoggin told me to take her out of the room, and then told his other caregiver (and asked me to inform the charge nurse) that he would not longer accept any care from "Evil". The charge nurse then took over his care.

When he's not medicated correctly, he can't see or hear little kids (like the on that visits his roommate) without getting very depressed, nor can he see Rorysaurus without getting all worked up and depressed.

Since my visit last night and my mother's repeated phone calls, he has been medicated correctly and has also been cared for by more competent nurses. I discovered that his roommate had previously refused to have this woman care for him, and so she'd then been assigned to my brother.

Oh, and the Medi-Cal paperwork that was sent as a follow up includes a questionnaire about how far he can walk (?!), and he was sent four pages of someone else's application (has a different Social Security number and case file on it) and was not sent a 12 page section of his! No wonder his application is still "PENDING"!

In other news, we took Little Monkey to his pre-op appointment today. His surgery is now scheduled for 12:10 pm, and is expected to be 5 hours long. Poor little guy. He got a little pinprick (blood draw) and other than that this appointment was easy. it will be tomorrow that will be very, very hard, especially since I can't really shake the feeling that I'm going to lose him this time. I worried last time (what parent wouldn't) but I believed we'd get through it. This time, all I can think about is the "what-ifs" and worry that noon tomorrow is the last time I'll see my son.

Keep us in your prayers...we'll need them.