Tuesday, October 29, 2013

Yesterdays Procedure

I feel like it's rare that I get to blog about good news. However after yesterdays procedure I can see I feel like we are getting very close. I had prepared myself for months of going to Pittsburgh every other week so that if we stopped before Christmas I would be thrilled..

So yesterday after the procedure we met with the doctor and he said he was able to balloon the bile duct with a 4mm balloon. He also found a piece of plastic in the liver (from the transplant that didn't get washed out in the bile) that he said MIGHT have caused the blockage. He was able to remove it. We are scheduled for another procedure next Wednesday. They won't know until they get in there but they will either be removing the drain or ballooning one more time and then removing the drain. So if all goes well two more trips to Pittsburgh tops.
Two thumbs up after the procedure

I'm so thankful and blessed it is working out like this. The trips are rough on all of us. Lynlee goes through so much and I'm still so exhausted today. Her labs are perfect right now so we know that everything is doing what it's supposed too.

Just playing a little golf waiting to get discharged.....

Thursday, October 24, 2013

Photo Dump

I thought I'd do a picture dump since I never got around to posting most of these.

 Lynlee and Daddy at the petting zoo

Brody doesn't look happy at all

Field trip with the school
 Our little drummer

 Lynlee fishing in the hospital  with Nana and Grandma
Putting puzzles together

Sunday, October 20, 2013

Birthday Weekend recap

I've been wanting to blog for days. We are home. Everyone is adjusting pretty well to everything. We go for labs in the am and Lynlee has her next procedure on Monday the 28th.

We got home late on Wednesday and had a birthday party to plan by Saturday. Talk about last minute. But we did it.

Lynlee had her party yesterday and she was such a hostess. She loved every minute of her Sofia party. She wore her dress, ate her mac & cheese, and opened presents.

This morning we asked her if she wanted to do anything special on her birthday but she said that she wanted to stay home. I was kind of glad that was her answer. We had the best day here. We did puzzles, played doctor, went out to dinner and had ice cream.

I have a hard time believing she is four. I'm so beyond proud of her. She inspires me on a daily basis and makes me want to be a better person. I love her more than I ever thought possible and love her more every day if that is possible.

Happy Birthday Sweetheart.

Tuesday, October 15, 2013


It has been a long day. I'm tired, emotional, and ready to go home. We think we will go home tomorrow. Oh I hope so. I've forgotten how bad hospital stays are.

The day started with the nurse waking me before 6am holding Lynlees IV in her hand. Somehow in the night she kicked it out. Of course she needed labs and an antibiotic so I was holding her down screaming all before 7am.

Lynlee had her procedure today. She did well. Everything went well. It was almost 2 hours long and after 90mins I could feel my heart racing. I hate waiting. She has a drain through her bile ducts into the intestine and a drain bag. The doctor sad there was then one duct had a narrowing and as far as they could tell that was her only problem. We will be back in 2 weeks for another procedure to balloon and go from there. They can't tell me how many times it will take yet.

In all honesty, I don't think I prepared myself for the drain and the drain bag. I knew it would be sticking out of the skin but didn't realize the bag would be HUGE and almost impossible to hide. I'm sad that Lynlee doesn't like it and knows it shouldn't be there. I don't want her to feel different but I can tell she does. She looked down at it today and in the saddest voice said momma no. My hear broke into pieces. I hate not being able to fix it when she is sad and doesn't like something. And Ryan and I have some decisions to make about school. I'm not sure she can go and play and be like the other kids with this hanging out of her body.

I can feel this post isn't my normal peppy self and well I'm not feeling that way tonight. I'm still so thankful that it isn't rejection but this is hard too. I wanted it to be nothing and for us to go home in a day or two and everything go back to normal. We are hopeful that this will be done in just a few procedures but have to realize it could be more than a few.

I do want to thank each of you for commenting on my Facebook post. I haven't had the time to respond but I am so thankful for you guys. And for everyone texting to check on us, calling, and for remembering Lynlee in your prayers. We are so blessed for each of you.


Sunday, October 13, 2013

Hospital Stay

Most of you know that we are in the hospital as I type this. I haven't had much time to blog the past few days (weeks for that matter) but this isn't how I wanted to start it.

Last Monday we had labs and they were perfect! The best we've ever had! So they made a med change to lower her rejection meds and wanted labs in a week. We went back Friday for the repeats and they were scary high. Pittsburgh wanted us to come up immediately so we could see what was going on.

Yesterday Lynlee had an ultra sound and a biopsy. They both showed there was issues with the bile ducts. The good news was it wasn't rejection but we didn't want it to be this either to be honest. She will have to have a procedure to put a drain into the bile and then we will come back every few weeks to "Balloon" the ducts and fix the problem. They are hopeful to believe it will be fixed in just a few procedures since it was caught on the early side.

The first procedure will take place on Tuesday and we should be discharged on Wednesday. Right now our stay is pretty laid back. We see a nurse about every 8 hours when she gets her antibiotics and that's it. You would think she would be miserable and crying to go home but its the opposite. She is still saying she wants to stay here "no home." I guess she has all the attention in the world here, has watched the Disney Channel since Friday, has a cool bed and gets to order Mac & Cheese every single day. What more could a kid want.

And in general the rest of us is hanging in there. I can't remember the last time we were hospitalized which is a good thing. Ryan and his parents were here all weekend and they all went home today. So Lynlee and I have done puzzles, colored pictures, and if I see Good Luck Charlie one more time I might throw up.

I'll try to keep everyone updated as best as I can. No news is good news. I really won't know anything else until the procedure is over on Tuesday.