Thursday, December 27, 2012

Christmas, updates, clinic, and tickets

     Ahhhhh, Christmas, I love's always such a bummer when it's over!  Despite Britt's sore throat from her tonsillectomy, and Brock being in a wheelchair, we had a great Christmas.  Thankfully, Abby was feeling good too!  We were able to do most of our regular Christmas traditions, and then we even added a few more new ones.  This is the first year......ever..... that I haven't given any neighbor gifts or friend gifts, I just couldn't get it together enough to get it done, and a Christmas card just wasn't going to happen this year either, but that's okay, we did what we could.  Even though it was a pretty small Christmas, we as a family, knew that we had a lot to be grateful for.  The holidays always make me feel so thoughtful, yet curious, about Abby's donor family.  I can't help but wonder who they are and how they spent their Christmas.  I hope they were able to feel some peace through the holidays.

Abby and her cousins loving the chocolate fountain I bought for my mom and dad , it definitely was a hit for everyone!

The traditional nativity.......kind of anyway!!  We even tried to get Maggie involved, she was disgusted with all of us!

Update on the kids:

Brock went to his post-op appointment last week.  Dr. Leitze said things were going as planned.  He took the splint of Brock's ankle and then told him to try to move it around a little bit.  This was too much for Brock, unfortunately for him, he has the same weak stomach as me.  He went completely pale and broke into a sweat.  We thought he was going to pass out for sure, but he hung in there.  He's still not allowed to put any weight on it until at least January 14th when he sees the doctor again.  The crutches and wheelchair were tricky the past couple of days while we were in Salt Lake in the snow, but he managed without any falls!

This is what it looked like when the doctor took the splint off,  maybe you can understand why Brock was feeling queasy!

Finally today, day 14 of the tonsillectomy, Britt is feeling better!  It has been a rough 2 weeks though, she has been feeling really crummy every single day for 14 days.  It was miserable, just like everyone told us it would be.  Britt was great though, she was so tough the whole time, even when we were all making fun of how she's been talking.  Just in case you're wondering, it sounded a little like Young Frankenstein in this song or like the guy with his tongue pierced in the movie Rat Race, listen here, just start the clip at 1:00 (this is one of my favorite clips anyway, a hilarious movie too, you should watch it if you haven't before!) Yes, we couldn't help but tease her, my brothers especially enjoyed the teasing, it was just so hard not to.  But really, she was such a good sport and I think that finally today she's made the turn around and is almost back to feeling really good again!  Unfortunately, she wasn't feeling good enough to come to Salt Lake with with the rest of us, so she just hung with grandma and grandpa while we were gone.  We sure missed her though.
This is the back of Britt's mouth when she was able to open her mouth again.  Pretty gross, but the scabs are all gone now :)

Abby had clinic today.  I wasn't very excited to have to go to Salt Lake, some down time at home sounded pretty good to me, but it was time, so we knew we had to go.  We ended up leaving on Christmas night because of the storm that was coming in.  Clinic wasn't until Thursday morning, but we had to be up there by Wednesday at 4:00 to meet some amazing people!!  A few weeks ago, I got a call from our social worker at Primary Children 's.  She knew we had been going through a rough time and that Abby had had a hard year, and was wondering if Abby would be interested in some tickets to a big event in January.  A family had purchased some tickets and had decided to donate them to a patient at Primary Children's that was feeling well enough to use them, luckily for Abby, Julianna had thought of her!  I said that of course she was interested, I think that Abby really needed a boost.  So, yesterday we were lucky enough to meet the Cook family and they gave Abby her gift.  What great people they are too, I don't think they could even realize what their gift meant to Abby, it was amazing!  Sometimes, it's the unexpected things that make all the difference!
What an amazing family-thank you for making Abby so incredibly happy!

Here's the tickets!  I don't think there's anywhere in the world that Abby would rather be on January 5th than watching JB in concert!!

Abby hasn't stopped talking about it since yesterday, she's so excited!  Brock and I are both shocked that we weren't the people that Abby invited to go with her, she decided on Britt instead!  The two of them are going to have the greatest time ever, we promised to take lots of pictures and post it to the blog.   I'm so grateful for people like the Cook family.  We've been so blessed to meet many selfless people the past year and a half, that's the greatest part of what we've been going through.  We get to see  the good in people, and we get to be a part of their lives.  We are grateful.

Clinic went well today.  Abby's echo looked great and her heart sounds really good.  Her labs all came back looking good too!  As for now, we aren't making any changes in her meds.  The only thing that's been a problem recently is that the swelling in her feet has gotten worse, last night was the worst it's ever been.  She said it felt like needles were stabbing her in her feet.  I took a picture to show the transplant team today.
 Notice the left ankle especially, it's been getting especially huge, and look how red her feet are too.  Since her pressures in the cath lab have been looking good, The transplant team has a few other ideas about what might be going on and they are going to do some research and talk to a couple of other doctors so we can see if we can figure it out.  They think that maybe it's something other than her pulmonary hypertension that's causing this.  Hopefully by our next clinic visit in one month, they'll have some more information or be ready to run some other tests.  Abby was willing to live with a little swelling now and then, but then it got worse and is extremely painful, and that's not okay.  Last week I spent some time talking to Dr. Guthrie, Abby's GI doctor, to see if we could figure out her stomachaches too. He thought we should try Abby on a non-dairy diet.  She's been doing it for one week now, and she hasn't had one stomach complaint since!!  I think it's weird that an allergy like that can just pop up out of nowhere, but if going non-dairy is working, we're sticking with it!  We'll keep trying it and then we're scheduled to see the GI team on the same day as cardiology-January 23rd is going to be a busy day for us.  It's a relief to at least have something we can try, I was feeling like everyone had given up on making Abby's stomach feel better.  It always feels good to have a plan.  Now we just need to keep Abby healthy through the rest of the "sick season!"

I will admit that it's been a rough month around here, but I think we're handling things really well.  I was talking to a friend the other day that's going through a rough time, and he said to me, "I know things are hard for me right now, but then I look at you and I feel grateful for my struggles!"  I didn't think about it at the time, but after we got done talking, I had to laugh a little.    I'm glad that I can be the one at the bottom of the barrel, I can be the one to make everyone feel better about their situation!  "At least I'm not the Doman family right now!"  HA!!!!  Really though, I hope that people don't truly see us in that way, because we don't.  Things are hard, but they could be so much worse in so many ways.  We try to look at it as being blessed.  My dad was lucky he didn't have his heart attack while he was out running in the desert, we're lucky he's still with us today.  Brittany and Brock are getting closer and closer to being back their normal again.  I know that Brock will never take being able to walk for granted again.  We were able to spend Christmas home, all together.  Sure, Abby has had a rough year and a half, but she's been able to be home and happy, and just a normal kid most of the time.  Maybe this past month had to happen so that when we get through it, I'll be more willing to accept our "new normal" of Abby with her new heart.  I know that I'll be grateful when we get back to that normal, I'm looking forward to it.

Thursday, December 13, 2012

And the tonsils and adenoids are gone!!!

To say that this past week hasn't been the greatest, is really the understatement of the year.  To sum it all up, it has not been fun, not fun at all.  I can not wait until all of my loved ones are back to feeling good and being happy again, that time cannot come soon enough.

Today, was Britt's big tonsillectomy and adenoidectomy day!  We had to check in this morning at 7:30, and I couldn't believe it when we were back home by 11:00.  Dr. Chase described her tonsils as being "very angry,"  what exactly that means, I don't know, but he said they definitely needed to come out.  Her adenoids were also too big and needed out as well.  When Britt woke up, she said her tonsils and adenoids were still sitting on the table in a little cup next to her, she thought that was pretty cool.  Too bad she wasn't able to take a picture so we all could see.  So far Britt is feeling pretty good, but we know that the next 10 days or so are going to be rough.  We've loaded up on popsicles and gatorade and smoothie stuff and we have the humidifier going.  Hopefully, we'll be able to stay ahead of the pain with her pain meds and that she'll be feeling better by Christmas.  Britt was so nervous, but she was a rockstar, even waking up from anesthesia wasn't too bad, and that's been hard for her in the past.  So far, even though it's only been a few hours, everything has gone much better than expected!

Brock has been wheeling around in his wheelchair for a week now, and I'm truly wondering how he's ever going to survive 5 more weeks like this.  He's so frustrated because he can't do anything by himself and it's driving him crazy, he completely hates it.  He's gone to school the last couple of days but come home at the end of the day in serious pain.  So, 2 of my 3 kids are now regularly taking Lortab, not good, I know.  Maybe I should start taking them too, it would probably be good for me!  Brock goes to his post-op on Monday, they'll take all the stitches out and maybe remove the splint, but I'm not sure about that.  One thing I do know is that I'm already tired of lugging that heavy wheelchair around and loading it in and out of my car, but I'm probably not as tired of it as Brock is!   needed to get out of the house for a while last night so he went down to watch the high school basketball game.  He came home even more depressed, he really misses playing.  It was hard for him to be just watching the game, he wanted to be out on the court.  This is definitely going to try Brock's patience, as well as mine and Britt's and Abby's.

Abby just can't fight this stomach virus she's had, and it's the weirdest virus I've seen her get.  I know that because she's immune-suppressed, viruses effect her differently anyway, but the last couple of weeks have been so up and down.  Some days she's nauseas and feels like she's going to throw up, other days it's coming out the other end, then she'll have a day where she feels okay and I'll think she's finally over it, but the next day it starts all over again.  She's going on 2 weeks of this now.  I haven't talked to the transplant team about it much because the symptoms come and go and they're not too severe, but the one constant is that she's sleeping about 3-4 extra hours each day.  School has been hit-and-miss as well.  I can say that when I hear about all of the sicknesses going around right now, maybe staying home from school is okay for Abby for a while.  She needs to get better though, this has been dragging on too long, she needs her friends and school, a lot.

So, as you can tell, things haven't been exactly fun around the Doman house, in fact, they've been pretty depressing.  Somehow, I've managed to stay healthy through everything, which is good, because I spend most of my time that I'm not working, doing things for my kids and taking care of them.  Or, visiting with my dad.  He ended up needing a second surgery last week.  His sternum wires had come loose and were rubbing on each other, and he got an infection.  During the surgery they reopened his sternum and cleaned out the infected tissue, then rewired his sternum  and put in a titanium plate to help to reinforce it.  They also had to get a plastic surgeon involved, they had to cut his muscles and use move them around to help to cover the sternum.  I told him that his new talent can be playing Christmas music on the titanium plate in his chest, he could probably become famous someday!  It wasn't an easy surgery and it made it so that he had to spend an extra few days in the hospitals.  He's home now and recovering, but it's going to be long recovery too.  I really want everyone to feel better by Christmas, I love Christmas.  Despite Britt's sore throats,  Brock being on crutches, and me being broke from paying for it all, I sure hope we can still find some way to enjoy it.

Abby goes back to clinic on the 27th.  Even though I haven't had much time to think about it, that thickening in her heart is still in the back of my mind.  Hopefully, her echo on the 27th will look perfect and that worry can go away!  If Britt and Brock feel good enough, we're taking them to Salt Lake with us and then we're going to do some shopping while we're there, that gives us something to look forward to anyway.  Then, someday, someday that I hope isn't too far away, I'm going to take a vacation somewhere where there's a beach and that it's nice and sunny and where everyone is healthy, ahhhhhh..........that's my peaceful place.

Wednesday, December 5, 2012

"...and Durango's for you, and Durango's for you....."

     Today was Brock's big day, the day he's been waiting for since since last year.  We've known he's needed surgery for a long time now, but Brock decided he wanted to play through the football season before having the surgery.  So, he's been hurting since basketball ended last year.  The problem was that he had an OCD lesion on his talus.  It looked almost exactly like this, but the chunk of cartilage and bone that had come loose and broken off was even bigger than this picture shows:

Dr. Leitze made 3 or 4 little incisions in his ankle to make the repair.  He said the loose cartilage was about the size of 1 square centimeter, which was quite substantial, even bigger than her thought it would be.  He removed that chunk, scraped off the bone, then drilled 4 little holes right in the talus, this allows pathways for new blood vessels to nourish the area.  This procedure is successful in about 80-90% of patients, Brock better be one of those.  Brock now has 5-6 weeks without putting any weight on his foot, then he'll start physical therapy.  Eventually, he should return to 100%.  The biggest problem is that his other foot still hasn't completely healed form the injury he got in his last football game, so he'll be in a wheelchair for a while.  What a hassle, but at least it will give both feet a chance to heal.
     This was Brock's first surgery, so we didn't really know what to expect from him.  We kind of laughed and made fun of him when they had to go get a bigger gown and booties for him to wear because he's such a big kid, but Brock really loved it when they had to get a bigger blood pressure cuff because of the size of his bicep!  Brock was pretty calm before the surgery, he wasn't even very nervous at all, I think he was more worried about the recovery than the surgery.  I was probably nervous enough for both of us!!
Here he is right before they took him back.  I love the hat, it's just so Brock :)  The surgery was only supposed to take a an hour, but the doctor didn't end up coming to talk to me for almost 2 hours, it took a little longer than he expected.  So, of course, every minute after 1 hour I started getting more and more worried.  But, thankfully, everything went as planned.  I was waiting for him in his recovery room, and I heard a lot of laughing when I heard them coming down the hall.  The nurses were totally laughing.  Apparently, Brock is a pretty funny kid when he's coming out of anesthesia!  They said he was hilarious.  The nurse said that Brock kept looking around the room and telling everyone that he was going to buy them all Christmas presents.  He kept pointing to each person in recovery and saying, "and for you, Durango's!  and for you, Durango's!  and for you, Durango's!"  The nurse told me he had promised up to about $600 in Durango's gift cards in the 15 minutes he was in the pacu!  He also said that Brock just kept overly and dramatically thanking everyone for fixing his ankle and for saving his life.  He wanted to give all of them big hugs to thank them!  They were all getting a big kick out of him!  He was wide awake by the time he got to me, it didn't take him long at all.  Then he started acting just like Abby does in recovery, he wanted to get out there ASAP!  So about 30 minutes later, we were out of there!  It was a long day though, we checked in at 8:15, and didn't leave until 3:00.  Now he just needs to be patient, follow the doctor's orders and recover.  He'll go back to the doctor in 10 days to get his stitches out, until then, he's supposed to just take it easy.  No school until Monday.

     The other big event of the day was that while I was waiting in the waiting room for Brock to be done, I saw my mom and dad walking down the hall in the hospital.  I guess that my dad woke up this morning feeling lousy and with his heart having some afib issues, so his cardiologist wanted him to come back to the hospital.  while I was in recovery with Brock, they were readmitting my dad.  They're still running some tests now to see what's going on.  Hopefully, it's nothing too serious.  But, my backup babysitters for Brock won't be able to help anymore, but I'll work things out.  Brock and I stopped by to visit on our way out of the hospital, and they were already trying to figure out what's going on.

 Lately, all of this medical stuff we've been dealing with, almost seems ridiculous.  How can we not just laugh?  It's either laugh or cry, I'd rather laugh, but sometimes I don't get to choose.  Whatever happens, just happens, I've lost most control of that now!  The saddest part of all of this is that next Thursday, I'll be right back at the hospital in the waiting room again, while Britt is getting her tonsils out.  But, for now, I can't think about that, I think it's better to only take things one day at a time.

     Abby spent the morning at the hospital with me.  She still hasn't been feeling great this week, she has zero energy and she spends a lot of time each day sleeping.  When she's awake, she feels okay, but has a headache.  but she's exhausted most of the time.  I haven't been able to worry too much about her, and I haven't even called the transplant team, I'm just watching her still.  She's had lots of swelling in her feet this past week too.  This is the picture she sent me from school last Friday to show me her cankles:

   The transplant team made some med changes last Friday, and we're still waiting to see if they'll start working soon.  If things don't change by this Friday, I'll be calling them to see what we should do next.  One thing I know for sure is that I can't go to PCMC for the next two weeks, not until Britt's recovered from her tonsillectomy, so I hope they don't want us to.  That would definitely cause some anxiety and problems.
     Another reason Abby came with me was because I was too nervous to have her go to school.  There were just too many similarities between today and the day she collapsed on May 18th.  I was too scared that she would go to school and I'd get a phone call from her school, just like when I was waiting for Britt's knee surgery last May.  It was just too scary, I'm kind of glad Abby didn't feel good enough to go to school today, it made the decision to let her stay with me easier.  There was a story on the news yesterday about a basketball player from Utah State that collapsed in practice.  The team trainer revived him by doing CPR and then using an AED.  They still haven't said what the cause of the collapse was, but I will be very surprised if it's not some type of cardiomyopathy.  Hearing the story and the family's reaction was so familiar, it brought everything right back.  When we heard the story on the news last night, all 4 of us just kind of sat there without talking for a few minutes, our eyes were wide and we just kept looking at each other.  I knew we were all thinking the same thing.  No matter how much time goes by, the memories of that day will always be right on the surface.