Wednesday, November 26, 2003
Long time no blog. I just got out of the hospital after nearly a month's stay. I'm 14 weeks pregnant and at home on hyperalimentation, aka total parenteral nutrition (TPN).
My trusted doctor of several years dropped me because my case was getting too complicated, and he doesn't have medical malpractice insurance. I was devastated. I tried to get on with other doctors but they either didn't accept my insurance or didn't accept anyone as sick as I am. My former doctor's partner referred me to the same doctors who mistreated and neglected me in the first horrific pregnancy. I absolutely refused and felt completely abandoned and lost. I ended up basically picking a name out of a phone book, but that experienced doctor didn’t have time to see me. Instead I got the 34-year-old whippersnapper fresh out of residency. I lamented this “curse,” but it was God’s blessing. Medically speaking, this doctor was the best thing that ever happened to me.
He is taking super care of me and Tummy Lumpkin (TL). Matria called me one morning and evidently I didn't sound "right" to the nurse. She got me in to see the doctor right away. He took one look at me, put me in the hospital, and prescribed TPN. My nutrition was plummeting. For example, normal albumin (protein) levels are supposed to be around 22 and I was at 2. I haven't eaten anything in several weeks, but the TPN is keeping me alive.
Let's take a moment to talk about attractive OBs. No one wants this. Well, no one who is too sick to wax her legs, pluck her brows, shave her pits, brush her teeth or bathe regularly. It's intimidating to be so unpresentable around one who does not possess wrinkles and jowls and maybe even a merciful, strategically-grown facial malignancy. What I wouldn't give for a doc with a bulbous nose or a crooked smile right about now. For the seriously ill patient only a crusty, old, unattractive OB will really do. We're talking about a doctor of Walter Matthau proportions. But no, I had to get the Keanu Reeves of OBs, and yes, my gastroenterologist asked him to perform a rectal, which he did much to my humiliation.
That's the way it goes.
In the hospital I was having some problems like fevers, funky liver enzyme levels and gallbladder problems. I've got sludge (gut mud made out of tiny bile stones), and I may or may not need to get the gallbladder removed before this is all over. That's no big deal. The liver stuff is pretty important. If I get fatty infiltration of the liver, for example, that's not good. I could croak or something, so they have adjusted my TPN-related lipids.
During my stay I started sipping melted ice. I can get down about a half a cup of water a day this way. I am ELATED about this! Something goes down my throat and into my stomach! It makes me feel a little normal.
FYI, if you have suffered some devastation or another and are in the hospital with your face smashed in and your brain in a jar by the bed, every one of the hospital staff who enters your room will ask, "How are you doing today?"
For the first week I just sort of gave them a puzzled look and said, "Hanging in there." After nearly a month of this it got on my nerves and this is how it went:
Them: How are you doing today?
Me: I'm eating through a tube, and you?
And the award for the most asinine comment goes to a nurse who asked me "Well, have you tried eating a sandwich?" I felt like saying, "Nah, it’s just too much fun risking my life to eat through this tube."
Nuts.
The hospital sonographer said she has seen 9-week-old twins batting the yolk sac back and forth like a balloon. She also sees little 14-week-old boys holding their danglies. It starts in the womb, ladies. Doc says I can get one of GE's new 4D sonograms if we can make it to around 30 or so weeks. I'll post that too.
This new OB is having a hard time getting information from the old one who wants nothing to do with any of this (liability and apathy). For this reason, the new doc is watching the cervix closely before just automatically doing a cerclage (for the incompetent cervix issue). This means pelvics galore.
Any type of "spelunking" is not good for a gal with my abortion issues. I'm approaching the 15th week, and that week is always emotionally difficult, considering the fact that in my first pregnancy my very-much-wanted child died in an HG-related termination.
Well, I'm feeling pretty bad right about now, so I need to get back to my cell. Lots to do today. I need to change my ondansetron (Zofran) site, so I'm going to be pulling a tiny catheter out of one leg and then shoving another one in the other leg via needle. After that it will be time for me to lance a finger for the hundredth time to check my blood glucose level (a must when on TPN). If it’s too high I will jab myself with two units of insulin. If it’s too low I will know it, because I will see dead relatives floating around the light at the end of the tunnel. D'har.
Actually, I bottomed out in the hospital because they were giving me too much insulin, and baby, it was freaky. I couldn't breathe, I was sweating, my heart was racing and my body initiated a POWERFUL sugar craving. And even though I'm still not able to eat, I would have donated a kidney for a mini Snickers bar.
On top of all this, I have to take my temperature, check my ketones, and phone in a bunch of info about pump totals and junk like that. This is all stuff I'd be too lazy to do if I was healthy, forget about being sick!
Quick update on husband: He's stressed being a "single" parent. He is hanging in there however. He is annoying me like crazy with all his complaints, but I couldn't do this without him, and I know he is taxed with so very much responsibility to carry alone.
Quick update on son: He goes to Pre-K where he is sometimes bored out of his skull. When our homeschooling was interrupted, we were learning world geography, and he was half-way through Kindergarten math. His Pre-K class however was learning their colors. And we're supposed to expect the kid not to have behavior problems? Plus, he takes after me, so naturally he's going to be a stubborn butt. I fail to see the problem.
The teacher has demanded that he be evaluated (aka diagnosed with something) by a psychologist. Meanwhile she was not fulfilling her end of the agreement to send home daily reports. We wanted to change his diet as well, but she gave us a week to see results. Ugh.
Anyway, she wants that "evaluation" and she will get it, because it's a private school, and they can kick your kid out for sneezing, while you still have to foot the entire bill. If we are seen as uncooperative it may not be good, and this is literally a day care situation. We are in a bit of a fix with that.
My son will get his big fat ADHD label, we will steadfastly refuse to medicate him and somehow all will be so much better than if the teacher had just given us some real time for the dietary alterations to kick in. To her credit, she is now doing well with the daily reports (after being called on it). Ugh. Ugh.
I have also noticed some of the results of being socialized by other children all day long. My son has begun to feel unsure about himself and his choices. At Show & Tell he wanted to bring in a fetal model to show how big his sibling was, but after a while he worried that the other kids would tease him. HE IS FOUR! It was letter "B" week and some other kid ended up bringing in a baby doll and no one made fun. When my son learned that it was OK to bring in a baby he wanted to bring in the model. Now we have to wait until "F" week for "fetus." Great.
I can't be there for him. The whole thing is depressing.
I missed Reformation Day (fake Halloween for Christians who dig Martin Luther), will miss Thanksgiving (unless they figure out a way to add turkey to my TPN) and will miss my son's birthday party. NOW THAT IS ROUGH!!! He's turning five and I'm not able to go to the party! Waaaaaaaaaaaaa! HG SUCKS!
This is the update. We are still alive. I would never have been able to make it even this far without God. Never. We would have been done for long ago.
Thank you for all your earnest prayers. He hears you. Please keep it up. I really like eggnog, and wouldn't mind being able to drink some at Christmas. He can raise the dead, people, so I think I have a pretty good shot at this eggnog thing.
P.S.
One thing I forgot to mention. This pregnancy has thus far cost my insurance company over $60,000 (and I'm only 14 weeks). They have a contracted deal where they don't have to pay as much as it would normally cost, so I doubt they have actually spent the above amount. Still, I'm racking up red points for them, and they no likey.
At no time did my health care professionals ever suggest termination to me. My current doctor has only ever worked diligently to afford me every available, positive option. He is even ready to put me on corticosteroids at week 16 as I requested. Everyone is aware that the goal is to fight HG and have a living child. While running up astronomical medical bills in the hospital however, my HMO caseworker called to make sure I "knew" that I had the option to terminate the pregnancy. I told her I'd sooner die. I should have hung up on her instead. I think it's disgusting how the HMO would prey on a woman who has endured months of severe suffering with months to go. I can imagine other women thinking, "You know, this could all be over in five minutes. Hmmm." Actually, I don't have to imagine. I've been there, done that, hated it. It is not the answer.
(TL sucking thumb at 12 weeks. Our first baby was three
weeks older when sadly, due solely to HG, we aborted.)
