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 (TPN). I won't even go into the hospital stay.
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. Tried to get on with other doctors but they either didn't accept my insurance or didn't accept anyone as sick as myself. After my former doctor's partner referred me to the same doctors who TOTALLY neglected/mistreated me in the first tragic pregnancy, I absolutely refused and felt completely abandoned and totally lost. I ended up basically picking a name out of a phone book, but that experienced doctor didn't have the time to see me. Instead I got the 34-year-old whipper snapper fresh out of residency. I cried out to God. He was the best thing that ever happened to me.
My new doctor (who is "easy on the eyes," btw) is taking super care of me and TL (Tummy Lumpkin). Matria (home health that specializes in HG care) 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 and put me in the hospital for 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 good looking OBs. No one wants this. Well, no one who is too sick to wax their legs, pluck their brows, shave their pits, brush their teeth or bathe regularly. It's intimidating to be so ugly around one who does not posess wrinkles and jowls and mebbe a visibly precancerous skin tag here and there. 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... a doctor of Walter Matthau proportions. (No offense, Walt.) 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 thorough 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 (like 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... well 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 about a half a cup of water down 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 assinine comment goes to a nurse who asked me "Well, have you tried to eat a sandwich?" I felt like saying, "Why on earth would I do that when risking my life to eat through this tube is so very entertaining?"
Nuts.
Got to hear TL's heartbeat several times in the hospital. Got good pictures. One pic was taken at 12 weeks, 4 days or so, and you can see TL's hand clearly. You can count all five fingers.
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. Tried to get on with other doctors but they either didn't accept my insurance or didn't accept anyone as sick as myself. After my former doctor's partner referred me to the same doctors who TOTALLY neglected/mistreated me in the first tragic pregnancy, I absolutely refused and felt completely abandoned and totally lost. I ended up basically picking a name out of a phone book, but that experienced doctor didn't have the time to see me. Instead I got the 34-year-old whipper snapper fresh out of residency. I cried out to God. He was the best thing that ever happened to me.
My new doctor (who is "easy on the eyes," btw) is taking super care of me and TL (Tummy Lumpkin). Matria (home health that specializes in HG care) 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 and put me in the hospital for 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 good looking OBs. No one wants this. Well, no one who is too sick to wax their legs, pluck their brows, shave their pits, brush their teeth or bathe regularly. It's intimidating to be so ugly around one who does not posess wrinkles and jowls and mebbe a visibly precancerous skin tag here and there. 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... a doctor of Walter Matthau proportions. (No offense, Walt.) 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 thorough 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 (like 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... well 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 about a half a cup of water down 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 assinine comment goes to a nurse who asked me "Well, have you tried to eat a sandwich?" I felt like saying, "Why on earth would I do that when risking my life to eat through this tube is so very entertaining?"
Nuts.
Got to hear TL's heartbeat several times in the hospital. Got good pictures. One pic was taken at 12 weeks, 4 days or so, and you can see TL's hand clearly. You can count all five fingers.
(Gee, what lives in the womb, has five fingers and looks like a baby?) 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.) I will post pictures of TL when I'm well enough to do so. It may literally be after the pregnancy is over. 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.
The doc is having a hard time getting information from my old doctor who wants nothing to do with any of this (liability and jaded callousness). For this reason, 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 I lost my first, very much wanted child 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 levels (a must when on TPN). If they are too high I will jab myself with 2 units of insulin. If it is too low I will know it, because I will see dead realitives floating around the light at the end of the tunnel. D'harhar.
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...the body kicked in 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 and check my keytones and phone a bunch of info in 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," working 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) 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 that evaluation, 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, that 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 steadfastily 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 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 immature personalities all day long. My son has begun to feel unsure about himself and his choices. Show and Tell... At first he wanted to bring a fetal model in 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 a baby doll in and no one made fun. Once he learned that it was OK to bring a baby in he wanted to bring the model in. Now we have to wait until flipping "F" week. So here I am, "pro-life Mary," and my son is introducing a developing baby as a "fetus." Great.
I can't be there for him. The whole thing is depressing.
I missed Reformation Day (super fun fall harvest type dress-up festival...much more fun than the modern trick-or-treating roulette), 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.
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 thusfar cost my insurance company over $60,000 (and I'm only 14 weeks). They have some sort of contracted deal that they don't have to pay as much as it would normally cost, so maybe they haven't actually spent the above amount. Still, I'm racking up red points for them, and they no likey.
At no time did anyone ever suggest termination to me. My current doctor has only ever worked dilligently 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 called to make sure I "knew" that I had the option to terminate the pregnancy. I told them I'd sooner die. I should have hung up on them instead. I think it's disgusting how they would prey on a woman who had 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 really have to imagine. I've been there. 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.)
Winston Churchill said "Give us the tools and we'll finish the job." Well amen. HG moms need care not despair. I'm glad that this time I knew the difference.
The doc is having a hard time getting information from my old doctor who wants nothing to do with any of this (liability and jaded callousness). For this reason, 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 I lost my first, very much wanted child 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 levels (a must when on TPN). If they are too high I will jab myself with 2 units of insulin. If it is too low I will know it, because I will see dead realitives floating around the light at the end of the tunnel. D'harhar.
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...the body kicked in 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 and check my keytones and phone a bunch of info in 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," working 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) 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 that evaluation, 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, that 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 steadfastily 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 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 immature personalities all day long. My son has begun to feel unsure about himself and his choices. Show and Tell... At first he wanted to bring a fetal model in 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 a baby doll in and no one made fun. Once he learned that it was OK to bring a baby in he wanted to bring the model in. Now we have to wait until flipping "F" week. So here I am, "pro-life Mary," and my son is introducing a developing baby as a "fetus." Great.
I can't be there for him. The whole thing is depressing.
I missed Reformation Day (super fun fall harvest type dress-up festival...much more fun than the modern trick-or-treating roulette), 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.
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 thusfar cost my insurance company over $60,000 (and I'm only 14 weeks). They have some sort of contracted deal that they don't have to pay as much as it would normally cost, so maybe they haven't actually spent the above amount. Still, I'm racking up red points for them, and they no likey.
At no time did anyone ever suggest termination to me. My current doctor has only ever worked dilligently 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 called to make sure I "knew" that I had the option to terminate the pregnancy. I told them I'd sooner die. I should have hung up on them instead. I think it's disgusting how they would prey on a woman who had 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 really have to imagine. I've been there. 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.)
Winston Churchill said "Give us the tools and we'll finish the job." Well amen. HG moms need care not despair. I'm glad that this time I knew the difference.
