Thurs. 5/15/08 11:23 p.m.
Hi All,Well, we made it to Houston Tuesday. Flew from Colorado
Springs. Went to the home of a Cushing's support board member, then
she took us to the airport. She had surgery about a year and a half ago. She had alot of good post op tips for me. We will stay at her house when fly back to CS.
We met another support board member when we got to Texas. She lives here and offered to pick us up at the airport. That was so nice of her. We went out to eat before she brought us to the motel. I don't think she tries to meet everybody, but unfortunately we're like minor (major) celebrities on the board as both kids have Cushing's. I'd rather we didn't have reason to be so well known.
Bill got in on Wednesday, he'll leave next Wed., we should leave next
Sat.We got through all our pre op appointments this morning, it actually took all morning. Dr. McCutcheon is just as nice as he seems in his emails. He really takes an interest in his patients (and non patients as he willingly reads MRIs for anyone who asks him too, he read Justin's for me).Jess reports for surgery at 10:15 tomorrow morning so her surgery will be about noon.
Tomorrow afternoon I can call and find out what time Justin reports on
Monday.On Monday another girl (19) from the support board is coming in for surgery on Wednesday. I'm so excited to be meeting her and her family. Her mother called me last night and we talked like we'd known each other forever. We each understood what the other was
going through. While the support of everyone on the board is great, it was such a relief to talk to another mother.
Thank you all for the support you have given us. This week
has been a long time coming and it's hard to believe it's here. I
am absolutely not stressed about her surgery tomorrow. It's post op and the unkown for months after that has me concerned. And then of course we're working on Bill's testing. It really hit home today how very misunderstood Cushng's is. We were filling out alot of paperwork and the gal said "Oh well, at least it's something easy"!!! Easy? HMMM she should try to live with this.
Better stop with that or I will start a full blown rant!I'll let you all know
how surgery went when I can get to a computer tomorrow.Judy
Fri 5/16/08 11:18 PM
Jess got out of surgery a little after 5 p.m., didn't actually start until a little before 2 p.m.Dr. McCutcheon talked with us afterwards and said he had rmoved a tumor from the right side of her pituitary just where he had showed us on the MRI. He said there was a "tongue" attached to it reaching across the top part of the gland and it was attached to "something". He said the "something" didn't really appear to be tumor but it for sure wasn't normal so he removed it. It will also have path done on it. Not sure how long it takes to get the path labs. But sometimes they don't stain positive for ACTH but the patient still had Cushing's. It's just that if the path is positive then there is a "positive" diagnosis.She is in bed sleeping, I came to the computer station for a few minutes. The laptop I have with me doesn't want to accept the password. She's still pretty zoned out. Not sure what to expect tomorrow. Dr. McC was certain he got all the tumor and there was no spinal leak.Well, that's the update for now. Somebody want to tell Dad that things are okay for now.Justin reports at 10:15 on Monday.Judy
Tue 5/20/08 7:15 AM
Justin got out of surgery about 5:00 last evening. His report isn't quite as good as Jess' He has a CSF leak (spinal fluid) and they plug it up with a piece of fat taken from elsewhere in the body. I know, that sounds gross! Because of this he will be in bed on his back until Thursday. He will then be able (and encouraged) to get up and walk. hopefully the plug will take and the leak will be repaired. If all looks good on Thursday he will be dismissed Friday. Last night Bill said they were going to monitor him every hour. I haven't seen him since surgery. I was with Jess. She was dismissed yesterday about the time Justin was being taken back to the holding area for surgery. She was feeling so good that we almsot let her overdo, just walking and waiting for Justin's surgery to be over. So I brought her back to the hotel and Bill spent the night with Justin. We'll switch this morning.Dr. McCutcheon said that Justin's was not a clear cut tumor, in fact he wasn't sure he could call it a tumor at all but it was definitely abnormal. He said when they first looked at the pit the right side was enlarged and then when they cut in they found a "growth" that was sort of dumbell shaped going clear across his pit. He told us it was possibly that dreaded word (I had told him I dreaded hearing this on either child) hyperplasia. That means the mass is not clearly defined and could very easily have a few stray cells escape the knife. I believe Bill said he has a lumbar drain in place.I'll get Jess up soon to take her Cortef and then will probably head to the hospital. MDA is a great hospital but it gets a little old. I believe there are more people inside MDA than there are living in Colby! More cars too!Judy
Tue 6/03/08 6:59 PM
I started this update late last week and then never got around to finishing it. Sorry it's so long. Since starting this both kids have had episodes of overdoing. Justin's made him feel pretty bad for a couple of days, Jess just wants to sleep alot.It's easy to want to overdo when the replacement cortisol makes you feel good. They have to remember that their adrenal glands probably aren't working at the moment and they use up the replacement they take. Well, we've been home from Houston for almost a week and are settling back into a routineBoth kids seem to be doing remarkably well. I refuse to take that as a bad sign. I'm just waiting to see how it all plays out.Jess goes to sleep earlier than she used to, she doesn't get crabby near as often (yes, Jess, you got crabby). She said she no longer has food cravings like she used to. She has lost about 12 lbs, hasn't weighed for several days now. She also doesn't seem to feel sick if she doesn't eat on time. Now that I think about it that was probably her first sympton, long before she gained any weight, I remember if she got hungry she needed to eat of she'd feel sick. She also used to have an odd oder at times, pretty frequent as we got close to surgery. I haven't smelled it once since she came out of surgery. And no more hot flashes, I just asked her that.She's probably hoping that her hair eventually goes straight again! She said she doesn't feel a whole lot different than before surgery but I see some changes. She never had the time to get as sick as alot of other Cushies. Wonder if she's thanked Justin for paving the way for her?!LOLJustin amazes me. He's happy!! Or appears to be. I haven't seen that in a long time. Before surgery his 'happy' was more giddy or the actions of a very young child. He actually sets an alarm to take his meds on time. And he gets up in the morning to do it. This means he wakes up easily. It used to be torture to wake him up. It didn't matter whether he'd slept 4 hours or 14 hours, it was awful. And he always woke up angry, even if he woke up on his own he seemed angry. No more. He also answers the phone when I call and he never used to do that, in fact I think he tried to avoid me most of the time unless he needed something. Now, he seems happy to talk to me.He's been sleeping at night, most nights. I know one night friends came over to watch movies and they all fell asleep about 3 a.m. probably with the movies running.He's also pretty good about taking his meds on time because he came close to AI (adrenal insufficiency) the night he was discharged. He hadn't gotten his afternoon meds before he was discharged. By the time we remembered it he said he'd be okay, so I let it go. He woke me about 2 a.m. asking where his pills were, said he was starting to feel 'weird & woozy'. Felt better a little while after taking it. Later he told me that that was the way he used to feel before he'd go into his episodes where he would turn numb and have alot of other things going on. So it might be good that happened right away, now he knows what can happen and knows it's not goodHe started driving about the day we got home. I know.... but he did. He said it was probably worse to have been driving before surgery. He might be right, but it's a moot point now. There's probably other things that I can't remember at the moment. Oh, I know - it's the eyes, just like everybody elses', they now look alive. Oh, both have changed their body temp it seems. I've got to tell you that I have two great sisters, well really I have three great sisters but one doesn't live very close to us. They cleaned my house while we were in Houston. It made me cry when Sue told me on the phone when I called her one day from the hospital. I felt bad that they felt they needed to do it but was so relieved that they did. They also weeded the flowerbeds and mowed the lawn. It was so nice to come home to a clean house.I guess I should add that I feel better too. It's as if a weight has lifted. For the past week nothing has felt that difficult to do. Getting up and making it to work was such a chore the last couple of years, and I like my job! And housekeeping - forget it, which is why my sisters came over.I went grocery shopping tonight and used coupons for the first time in a year or more. Now, I love my coupons, but lately they were so hard to use because I couldn't figure out if using the coupon was a better deal than buying a different brand. So I just quit even clipping them. Even knowing we're heading back to Dr. F soon for Bill doesn't really phase me at the moment. It was only two nights ago he decided that he was ready to go. Now he's already doubting it. I told him that was normal, which is why he will listen to me when I say we're going. And I won't listen to him when he says 'maybe we should wait, I've lived with it this long, what's it matter.'Thanks to all of you for sticking with us through all this. Maybe we're about at the end. Judy
Tuesday, June 10, 2008
The following are emails I sent while in Houston for surgery and after returning home.