Ben had a couple doctor appointments this morning. One of them was with a different pain management doctor. He is an interventional pain management doctor if I remember right. And guess what... He actually has something that works for Ben! Instead of just telling us it's "chronic pelvic pain" he actually has a reason for the pain. Due to all the previous surgeries, there is scar tissue built up around one of the nerves. The Ilioinguinal nerve to be exact. So while there today he gave Ben a nerve block, which was a shot of steroids and something else that I can't remember. It actually took his pain from an 8 down to a 4! Granted it didn't last very long, but it still took it down for a little bit. We have another appointment on Monday to try a different nerve block and we'll see if one works better than the other. And if neither of them works super well, we can try them together or try another type of block. This new doctor also changed his meds up a little bit. He upped the dose of one (so he'll be taking the max dose instead of minimum) and changed the narcotic he's on. So we'll see how this works out. He is much more willing to help us out though. We realize the nerve blocks won't solve the problem, but they will at least bring the pain down to a manageable and functional level.
We also talked to our case manager yesterday, and he was going to work on getting the paperwork we need to get the med board started. Since the surgery obviously didn't fix the problem and he's still hurting, he was going to email the surgeon and have him put a note in the medical system saying there is nothing else he can do, and then our primary care doctor can write up the profile. Hopefully that all works out so we can this show on the road. So that is where we are right now. We've got some options to try for pain relief and we'll hopefully be starting the med board process soon. The sooner this all happens, the better. :)
Friday, July 22, 2011
32 Weeks
It's hard to believe we're almost there! We're down to single digit weeks! Things are still going great. As of my appointment last week (at 31 weeks) everything still looks good. Kaylin's heart rate was in the 130's, I measured 32 cm (so a week bigger than where I was), and I've put on a total of about 15 lbs total since the beginning of the pregnancy. The only concern was my blood pressure was a bit high. I haven't had problems with it during pregnancy, it's actually been really good, but I have had problems with it being high in the past. The doctor wanted to get it checked out to make sure it was just the stress of Ben being in the hospital rather than preeclampsia that had caused it to go up. So she ordered some lab work and had me go up to labor and delivery and have them check it since I was going to be up there anyway with Ben. I guess she wanted me to go get it done the same day, but didn't make that very clear so I did it a couple days later. Oops! Everything was fine though. I went over and they hooked me up to all the monitors- the blood pressure cuff, the one that checks baby's heart rate, and the one that checks for contractions. The first blood pressure reading they did was a little high, so they had me lay on my side and the rest of them were great after that. Kaylin wasn't as cooperative though. The nurse was able to find her heartbeat right away, but as soon as he took his gloves off she moved off the monitor. She did that a few times. She kept rolling around and kicking the monitor. Stubborn little girl! But in the end everything looked great. Her heart rate was good, my blood pressure was good, all my lab work looked good, and I wasn't having any contractions. So it was probably just the stress of everything that had been going on with Ben that had my blood pressure up. Guess I just need to learn to relax... Easier said than done, I know. Haha!
We can't wait to meet our little girl though! She already has quite the personality. She doesn't like to share mommy's tummy. Whether it's monitors at the doctor's office, my cell phone, the puppies laying on it, or daddy touching or laying on it, she doesn't like sharing and will kick or hit whatever is there. She does like playing with daddy though. He knows exactly how to get her to move when she's sitting too low or has a foot or elbow in an uncomfortable place, and how to wake her up once she does settle down. I love how excited he is for his little girl! He's going to be such a great daddy! :)
Thursday, July 21, 2011
Diagnosis: Chronic Pelvic Pain
I should have updated this several times, but I haven't. I've posted daily updates on facebook so if you've been following that, you pretty much know where we are. But if not, here's the rundown of the past week and a half...
Ben has been in the hospital since the surgery and was finally released tonight. They couldn't get his pain under control, and honestly it still isn't. It typically sits at an 8-9/10. We had a few occasions where we were able to get it down to a 4 and 5, but it didn't usually last very long. The doctors were not very helpful. The residents from General Surgery that did the daily rounds, really did nothing. They put in consults with Pain Management, Gastroenterology, Urology, and Psychiatry. To no surprise, no one found anything wrong. They did a CT Scan last Thursday, thinking maybe they missed something, but everything appeared "normal." That's what they said anyway, but when reading the discharge paperwork tonight and seeing their report I would think otherwise. But what do I know?! So no one knows what to do and why he's hurting. They start some new medications, but they typically take at least a week to kick in before seeing any results. They started those Friday. Still haven't seen much of a difference. We had decided after talking to Pain Management on Sunday that we were going to try an epidural on Monday, just to try and numb everything up and give the other pills a chance to kick in. Come Monday morning, that plan was changed. I think mostly because the doctor we were working with all week changed because he was off. So this new doctor said our choices were to try a new drug called Ketamine or stop all the narcotic meds and just send him home. Since he really wasn't able to function even with the narcotics, we opted to do the Ketamine. He really didn't want to do it, but felt that was his only choice. The doctors thought it would work, the nurses thought it would work, I thought it might work. It didn't work. What it's supposed to do is reset the pain receptors in the brain causing you to think the pain really isn't as bad as it feels. For those it works for there have been great results. What they didn't tell us before hand was that it only works about 50% of the time. It has some nasty side effects too. They had to give him another medication to counteract the side effects, and as a result doesn't really have any memory of the 36 hours he was on it. And while we had our moments where he gave me and the nurses some good laughs, there were also some very depressing kinda scary moments. Last night he kept asking when he would be done, when we could go home, why was he still hurting, etc. It was so hard to see him like that. It kills me inside to see him in pain all the time anyway. I really wish I could just make it go away. And I wish I knew why he was hurting and how I could make it better. The doctors have us a whole regiment of medications for him to take (6 different pills, most of them twice a day). And now we just play with the medications until we find something that works. I hate having to tell him that, but that's all we can do now. There really aren't any more tests we can do. The doctors are pretty much stumped and don't know what to do. It really kind of feels like the past week and a half was just a waste. The surgery was supposed to help, not make the pain worse. I don't know what to do now though. I'm doing my best to keep a positive outlook, and I keep telling him (and myself) that we will get this figured out. But it's hard when he's ready to give up and is feeling hopeless. It's not like we're asking them to make the pain go completely away. We just want it down to a manageable level where he can function on a daily basis and we can just get on with our lives. Is that really too much to ask?! The pain management doctor explained this morning that chronic pelvic pain is not uncommon, they treat it all the time. If they treat it all the time, why aren't they finding anything to help us? He also said most people with it are able to learn to live with it and are able to go on with life. They aren't pain free, but they are functional. That's all we're asking, to be functional. So I guess we just wait and see what happens from here on out. Since we didn't get the problem taken care of, we're going to push to get the paperwork we need to start the med board and be done with the military. We're not impressed with the military medical system and are ready to be done period. We don't feel like we have the support of his command. Only one person came to visit him while he was in the hospital. His staff Sargent, and she was only there for a minute, quite literally. The missionaries did come visit with us for a bit before we were discharged tonight. We have a senior couple in our ward that work on behalf of the military, which is pretty cool. One of the chaplains up at the hospital gave them a call and they came up to visit. They are a really nice couple. Very grandparent like. And they are from Idaho! They called one of the other senior couples in the area and they came up and the two elders gave Ben a blessing before we left. If nothing else, I was feeling a tad bit better after that. I have a feeling it's going to be a long hard road ahead of us. I was hoping to have him feeling better before Kaylin gets here, but that hope is starting to fade. I'm hoping we find something to help him soon. I can't stand to see him hurt any more, and I know he is way ready to feel better. We've done everything the doctors have asked, and then some, and still don't have an answer or solution. So I really pray we get this figured out soon. In the meantime though, I think we're going to need lots of prayers, love and support.
Ben has been in the hospital since the surgery and was finally released tonight. They couldn't get his pain under control, and honestly it still isn't. It typically sits at an 8-9/10. We had a few occasions where we were able to get it down to a 4 and 5, but it didn't usually last very long. The doctors were not very helpful. The residents from General Surgery that did the daily rounds, really did nothing. They put in consults with Pain Management, Gastroenterology, Urology, and Psychiatry. To no surprise, no one found anything wrong. They did a CT Scan last Thursday, thinking maybe they missed something, but everything appeared "normal." That's what they said anyway, but when reading the discharge paperwork tonight and seeing their report I would think otherwise. But what do I know?! So no one knows what to do and why he's hurting. They start some new medications, but they typically take at least a week to kick in before seeing any results. They started those Friday. Still haven't seen much of a difference. We had decided after talking to Pain Management on Sunday that we were going to try an epidural on Monday, just to try and numb everything up and give the other pills a chance to kick in. Come Monday morning, that plan was changed. I think mostly because the doctor we were working with all week changed because he was off. So this new doctor said our choices were to try a new drug called Ketamine or stop all the narcotic meds and just send him home. Since he really wasn't able to function even with the narcotics, we opted to do the Ketamine. He really didn't want to do it, but felt that was his only choice. The doctors thought it would work, the nurses thought it would work, I thought it might work. It didn't work. What it's supposed to do is reset the pain receptors in the brain causing you to think the pain really isn't as bad as it feels. For those it works for there have been great results. What they didn't tell us before hand was that it only works about 50% of the time. It has some nasty side effects too. They had to give him another medication to counteract the side effects, and as a result doesn't really have any memory of the 36 hours he was on it. And while we had our moments where he gave me and the nurses some good laughs, there were also some very depressing kinda scary moments. Last night he kept asking when he would be done, when we could go home, why was he still hurting, etc. It was so hard to see him like that. It kills me inside to see him in pain all the time anyway. I really wish I could just make it go away. And I wish I knew why he was hurting and how I could make it better. The doctors have us a whole regiment of medications for him to take (6 different pills, most of them twice a day). And now we just play with the medications until we find something that works. I hate having to tell him that, but that's all we can do now. There really aren't any more tests we can do. The doctors are pretty much stumped and don't know what to do. It really kind of feels like the past week and a half was just a waste. The surgery was supposed to help, not make the pain worse. I don't know what to do now though. I'm doing my best to keep a positive outlook, and I keep telling him (and myself) that we will get this figured out. But it's hard when he's ready to give up and is feeling hopeless. It's not like we're asking them to make the pain go completely away. We just want it down to a manageable level where he can function on a daily basis and we can just get on with our lives. Is that really too much to ask?! The pain management doctor explained this morning that chronic pelvic pain is not uncommon, they treat it all the time. If they treat it all the time, why aren't they finding anything to help us? He also said most people with it are able to learn to live with it and are able to go on with life. They aren't pain free, but they are functional. That's all we're asking, to be functional. So I guess we just wait and see what happens from here on out. Since we didn't get the problem taken care of, we're going to push to get the paperwork we need to start the med board and be done with the military. We're not impressed with the military medical system and are ready to be done period. We don't feel like we have the support of his command. Only one person came to visit him while he was in the hospital. His staff Sargent, and she was only there for a minute, quite literally. The missionaries did come visit with us for a bit before we were discharged tonight. We have a senior couple in our ward that work on behalf of the military, which is pretty cool. One of the chaplains up at the hospital gave them a call and they came up to visit. They are a really nice couple. Very grandparent like. And they are from Idaho! They called one of the other senior couples in the area and they came up and the two elders gave Ben a blessing before we left. If nothing else, I was feeling a tad bit better after that. I have a feeling it's going to be a long hard road ahead of us. I was hoping to have him feeling better before Kaylin gets here, but that hope is starting to fade. I'm hoping we find something to help him soon. I can't stand to see him hurt any more, and I know he is way ready to feel better. We've done everything the doctors have asked, and then some, and still don't have an answer or solution. So I really pray we get this figured out soon. In the meantime though, I think we're going to need lots of prayers, love and support.
Tuesday, July 12, 2011
Surgery #3
What a long stressful day. Ben had his third abdominal surgery this morning. Well, technically 4th, but I don't count the one he had as a kid. Just counting since he's started having all these problems with pain. But here's the scoop for the day... We never had a super good feeling about this surgery. Yes we were/are tired of the pain and something needed to be done, but something about this just didn't feel right. After his pre-op appointment last Friday we were about ready to say never mind and cancel it. But we didn't. We reported to the hospital this morning, and it wasn't until we actually talked to the doctor back in the surgical waiting area that I began feeling a bit better about it. Naturally I still shed a few tears. Anyone who knows me knows how easily I get stressed out. You would think I would be a pro at this surgery thing, but I still don't like it. Anyway, they took him back to the OR about 1030, I headed to the waiting room, and by 1130 the doctor was out to talk to me. My first thought was "Crap! Something's wrong, that didn't take very long." But it was just the opposite. Things went great. They went in and found several adhesions on the left side. Everything else looked good though. So they took down the adhesions and used a product called Seprafilm which is an adhesion blocker. It's supposed to help prevent adhesions from recurring, so we'll see if it helps. I really hope it does. So anyway, he's back in recovery and I'm still sitting there waiting to hear how he's doing. 2 hours later the nurse comes out and lets me know they can't get his pain under control so they are going to admit him. So now my first thought is " Does that mean the surgery didn't work? Are we doomed to chronic pain forever now?" Well I still don't know the answers to those questions. But it could be that he has just built up such a tolerance to pain medications that they don't work so well for him now. Seeing how that's really all they've done for him, is bounced him back and forth between different pain medications, it wouldn't surprise me if he has built up a bit of a tolerance. So after maxing him out on all they pain drugs they could in recovery, they admitted him, which was another mess. The original plan was to admit him, but after the surgery went so well those orders were deleted. So they had to go through the whole process of finding him a room and getting all that figured out. Such a mess. They finally get him a bed and I finally get to see him about 1430. We get him moved over and settled in the room, which is tiny. Who knew they still put 4 patients in the same room?! His "room" is literally like 6' x 6'. And in there you have the bed, side table, IV pole, etc. There really is no room for visitors. I felt like I was constantly in the way when they came in to take his vitals and everything. Once they got him set up, they finally started a pain medication pump, called a CPA or something like that. I can't remember what it stands for right this second, but it's a pump that allows him to give himself pain medication every 10 minutes. It took a while for it to kick in, but he was starting to feel a bit better tonight when I left. It is miserable in that room though. Other than being small, it's really warm, the nurse call button on the bed wasn't working, and the chair they had for me was super uncomfortable. I didn't want to leave, but I had to. One, because I was hurting so bad from sitting there it was killing me. Two, because it's a 4 patient room I'm not allowed to stay the night anyway. And three, we left the dogs outside all day and I needed to check on them. To add to all the stress of the day, they had decided to misbehave while we were gone. They knocked one of the boards out of the fence, tore down some of the chicken wire what we have around the bottom to discourage them from digging, and two different holes where they decided to dig. It was mostly Smokey doing the digging I think, which is a bit surprising. Misty is usually the digger. But he is all red now. Gotta love the red Hawaiian dirt! I really should give them a bath, but I am so exhausted and sore tonight that I just don't have the energy to do it. So they are going to bed dirty, and will probably get a bath tomorrow. So that was my day, more or less. I'm doing my best to stay strong and positive and not stress. It's not very easy sometimes though. But I'm hanging in there. I have my next OB appointment Thursday, so I'll do an update and me and Kaylin after that. Until then though, we are doing good overall. Thanks for all the thoughts and prayers on our family's behalf. They are felt and appreciated. :)
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