Many of you know that we have been fighting with our insurance for over 6 months to approve a cochlear implant surgery for Chris. We have known that this was coming for a long time, and his audiologist finally said he was bad enough last Fall. But the insurance begged to differ. They said he heard some beep on the hearing test that disqualified him, saying his hearing wasn't bad enough. But that is not Chris' issue. He can hear noise, but he has no idea what you are saying. Most people don't realize that when you talk to Chris, he is mostly just reading your lips. But a cochlear implant will really help with that. His mom has 2 and she teaches 1st grade. Finally the insurance called Chris and let him sit in on a conference call and he was able to fight his case, stating how hard it is for him to work, talk on the phone, participate in group conversations and meetings, etc. So after the 3rd appeal they finally approved it and he had surgery on Wednesday June 22.
Chris' Dad and Stepmom came to SL to wait with me during the surgery. It took much longer than I expected. The surgeon told us it takes 1 1/2 hrs to just get everything set up, and another 2-2 1/2 hours to put in the implant, so to expect about 3 or 4 hours. It was right about 4 hours when he came out and said he was done, and we waited for another half hour or so before he was out of recovery and we could see him. The surgeon said they tested all the electrodes and they all work, which I guess means that it was a success.
I have to admit, it was super weird being on the waiting end of things this time. Now I know what Chris goes through when I'm in the ER or in surgery. It was hard! And it has been really hard to see him sick. When we went back to see him, he had just thrown up. He said he was fine when he woke up but as soon as they started wheeling him to the room that we saw him in, it hit him. We learned very quickly that any kind of motion would not be his friend. Poor guy was sick again several more times on the way home, and again the next morning. I learned to give him the nausea medicine and make him wait 1/2 hour-an hour before taking pain medicine because that was also making him sick. Yesterday he was super dizzy all day and spent most of the day sleeping and laying down. But today has been much better. His pain hasn't been too bad and for that I am very glad. He has repeatedly told me, "thank you for taking care of me." It has humbled me so much. I realize how much he does for me when I'm sick and that I should thank him more. Seriously, he is awesome for doing this all the time.
They will be able to hook up the device in 4 weeks. From there it will take awhile for sound to actually sound like speech but if all goes well, in just a few months he should see a huge difference. Then we get to do it all over again with the other side.
He was ready to go home.
As far as my health goes it has been up and down the last couple of months. I had a couple ER visits back in April and beginning of May. The first was from being so nauseated I couldn't stand it. Later I figured out that it was from the shot I was giving myself every week. Usually the day afterward I would be super sick but I learned to start taking the nausea medicine before the shot and that helped a lot. The next time was because of pain and they said I had another cyst on my ovary and a UTI. But then I really started to feel better. I have had 3 Remicade infusions now and I think it has helped a lot already. But my liver labs started to go high, probably from a combination of the methotrexate (the shot), TPN, and Remicade. So we stopped the methotrexate and stopped TPN for a couple of weeks. Which was sad, because after 3 months on the methotrexate, my hands were finally pretty much pain free. I got to enjoy that for a couple weeks and then they went back to being swollen and painful after we stopped the methotrexate. We re-stared TPN once my labs improved but they have still gone up and down from week to week. We are trying to get off the TPN as soon as possible. I'm almost to my goal weight so I think I'll probably only be on it another couple of weeks.
During this time I was also having problems with my port. Probably 2 out of 3 times, when the home health nurses come to access my port, they can't get it in. And it has happened to multiple nurses. And it happened at the hospital when I went for one of my Remicade infusions. They home health nurses would usually try 2 times, then send me to the ER. Most of the time the ER could get it on the first try, but not always. They said it was kind of turned to the side, so it was really hard to tell where the needle went. When I received the port it was super easy to see it and tell where it was. But since I have gained weight, it has become much harder. I had asked my GI doctor if we could consider getting it fixed so I didn't have to go the ER every week to get it accessed, and at first she said yes, but then she said we should take it out since I won't really need it much anymore once we stop the TPN and because of the risk of infection. That made me super disappointed so I made an appointment for the 27th (this coming Monday) to have her actually look at and talk about it more. I really want to keep it for Remicade, ER visits, blood draws, etc. I had a CT scan yesterday and it was nice they didn't have to poke me 4 times to start an IV. But now I think they have it figured out-lots of times they feel like it goes in the right place, but then can't get blood return. So they have figured out now if they push harder then it usually goes in. The home health nurse got it on the first try this time.
For the last almost 3 weeks I have had a low grade fever almost everyday. It started Monday June 6. I went to see my primary care doc because I was still having UTI symptoms. Turns out the antibiotic given to me in the ER was not sensitive to the infection but no one called and told me. My temp was 99.3 in his office. I didn't think much of it because I get low grade fevers when I have things like that, or even when I'm having a Crohn's flare. But the next day I had a fever too. I left that day to go Tulsa for Convention and the whole time I was gone I could tell a couple of times a day that my temp was up. I honestly thought it was most likely the UTI. The thermometer I had wasn't working very well so I bought a new one as soon as I got home and sure enough, over the next 3 days I was getting a fever between 99.0 and 99.6. Also, one night I noticed a little bit of pain in my port. Up until then, everything else was fine. My stomach was fine, my port was fine, etc. I saw my primary doctor the next day, on Wednesday Jun 15th. By then the pain was much worse in my port and got even worse as the day went on. Not terrible, but it was burning and throbbing some. My temp was again 99.3 in his office. I hadn't told my GI doctor because I was afraid she would jump to conclusions and insist on getting the port out without even looking at it or doing any tests. But my primary care doctor said he suspected my port had some sort of infection and he gave me an antibiotic and had me make an appointment for a few days later. The plan was that if things were improving then we would just finish the antibiotic. If not, we could try a different antibiotic, or consider taking the port out. My primary care doctor also tested for a UTI, just to make sure the other one was gone, and it was negative.
At this point I decided to tell my GI doctor so I messaged her and of course she was worried. She wanted me to get blood cultures done, so I went and did that. They took blood out of my port and out of my arm. She also said I could come see her PA on Friday if I wanted. She usually sees patients on Fridays but she was on call, so I said I would see her PA. By Friday, they had preliminary results of the blood cultures being negative.
I drove to SL and I packed a small bag with a couple pairs of pajamas and my glasses and a comb, just in case I ended up getting admitted. Because lets be honest, it has happened the last 2 times I went to see my GI doctor and very well could happen again. My temp was 99.4 when I left my house but by the time I got there for my appointment it was only 98.8. And that's how it goes all the time. It goes up for an hour, then back down, then up for an hour, then back down. I felt pretty crummy though and driving was no fun. The PA had one of the other GI docs come in and look at my port. He thought it looked perfectly fine-it wasn't swollen, red, hot, etc. I told him the blood cultures were negative so far and he said we shouldn't remove the port unless there is a positive culture. It's a big deal to get a port and we want to keep it if we can. I was happy to hear that. The PA and I talked about how I was feeling, and everything that had been going on. He asked me if I wanted to be admitted and I told him if it would help me feel better, then yes. He kept saying that he thought that's probably what we should do. But he decided to run across the street and talk to my doctor. When he came back he said she was fine with leaving my port in but she didn't want to admit me because she didn't want to expose me to more germs in the hospital. They also said I didn't technically have a fever so they couldn't really use that as a reason to admit me. Which made sense but I was a little disappointed. I wasn't looking forward to driving home feeling the way I was. I was also thinking about the fact that Chris' surgery was on Wednesday and wanted to figure things out and feel better before that. He also took my temp a second time and this time it was 98.9. REALLY? When I needed it to be up, it wasn't. But I'm positive that within 10 minutes of leaving his office it was up again. I couldn't check because I was waiting to get blood drawn but I have gotten pretty good at telling when I have a fever and when I don't. Oh well.
He also wanted me to get more blood cultures done, but this time to test for a fungal infection. Apparently the TPN sitting in the line could potentially grow fungus. I know, gross. It was a long drawn out deal because the lab people aren't qualified to draw blood from a port, only a nurse can. So after waiting for probably an hour and a half, they finally had me go to the IV clinic and have them do it there. But they also did tests to check for CMV (an infection that can get in your gut and bloodstream that Crohn's people are more prone to-which I have had before), C. diff, and a UTI again. Everything ended up coming back negative.
The next step was to do a CT scan. My doctor is always concerned about me developing an abscess with the fistula I have (although the last couple CT scans I've had done in the ER looked way better where they couldn't even see the fistula or extra fluid that had been there for a few months). So I went and did that yesterday (Friday the 24th). Funny thing was I got to drink a bunch of chocolate milk instead of contrast. That was really nice, but it still made me sick because I had to drink so much of it. I don't really think I have an abscess because I think my stomach would be hurting more than it is (been there, done that). But it would be kind of nice if that was the problem because then we'd have and answer and know how to fix it.
So I kept my appointment that I made with my GI doctor for this coming Monday since we still haven't solved this problem and I'd like to talk to her in person. She will have the results of my CT scan too. Except I don't know what I will do if she decides she wants to admit me. Chris wouldn't be able to come to Salt Lake because he isn't supposed to drive yet from his surgery. And he kind of needs to go to work on Monday. If they know the problem and/or have a good plan, I could be admitted in Roosevelt. But if she wants to admit me to figure out what is going on, then I'd rather be in SL but again, I really wouldn't want to be there without Chris.
This last Wednesday, the day of Chris' surgery, I don't think I had a fever. At the time I thought maybe things were getting better and whatever it was was going away. The day before it was only 99.0 like once or twice. But the next night it was up to 99.5 again and has been every day since then. I think Heavenly Father just wanted me to feel good that day so I would be able to drive Chris home. Today it has actually been above 99 every time I have checked it, and most of the time been 99.4 or 99.5. Which concerns me a little that it isn't going away this time. I keep thinking maybe it's just something silly, like a sinus infection. I have been a little more congested and I have had a low grade fever with a sinus infection in the past, but I don't really feel like I have one. And every day for 3 weeks is pushing it. I do still have tiny pangs of pain every now and then at my port site, almost not noticeable though. So I kind of think it has been the port all along, especially since it was hurting before I started the antibiotics, but then why did all the blood cultures come back negative? It' s a mystery.
I'm just going to throw in there that I don't want it to seem like I'm making a big deal out of a temperature of 99. I know it's not a high fever, but coupled with how I feel and it happening every day for 3 weeks, that's not normal and we need to know why.
This week I also had my iron levels checked. In December my ferritin was 15. After an iron infusion it was 575. Now it is 90. Which is in the normal range but I bet I will need another infusion soon.
Well sorry that was so long, and sorry end with a cliff hanger, ha! I'll update when we finally know what the problem is.
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