Saturday, December 31, 2011

I seriously almost went to bed without blogging. I'm tired and it's been a long day. I could careless that it's New Years. Am I ready for a New Year? Yes! I'm ready to have a year free of Citrullinemia. Free of ammonia checks. I want a happy and healthy New Year. But doesn't everyone?

Like I said, it's been a long day. Lynlee spiked a fever is before 10am this morning and had a small rash. By this evening the rash is spreading and has had the fever on and off. They gave her some Benadryl and it's helping and brought the fever down. They are pretty sure it's an allergic reaction but we aren't sure to what. Her antibiotics were changed today and added a feed. So it's process of elimination now.

The good news. Her liver is doing awesome, everything is were it's supposed to be. And after we get rid of the line infection we should be good. We will be on antibiotics for 14 days so that goes our chance of being released next weekend. I'm glad I didn't get my hopes up.

Lynlee is getting stronger every day. She almost walked around the whole unit today. She is sitting up so much better. And ate some ice cream today.

Well we aren't ringing in the new year. We are getting as much sleep as you can in a hospital!

Happy New Year everyone!

Friday, December 30, 2011

We were awaken at 3:30am this morning to Lynlee crying. I was laying in bed with her and saw her food was stuck in the bed rail. We ended up getting the nurses, lotioning her foot up and finally getting her foot out. The nurses said this was a 1st to them. Leave to Lynlee. Other than that, we all slept thru the night. It was the best nights sleep that any of us has got since we've been moved to the floor. I think Lynlee is finally getting used to being here.
Her pain meds went from every 4 hours to "as needed" today. I struggle so much with as needed. I never want her to be in pain but I never want her to be drugged up either. She went 6 hours the first time and then 8 hours and we gave it to her before she went to bed.

She's had a very active day today. She walked down the hall and back.. I was holding her hand the whole way but not because she wanted me too.. She hadn't walked since last Friday so I was very nervous. I expected her to take a few steps not take off running and that's exactly what she did.

We also gave her some milk today. She drank a couple ounces out of a cup and then we had some pudding for dinner. She had around bites and gagged. It was probably my fault. I was sooo excited she was eating that I kept shoveling it in her instead of pacing her! We will get there..

We were told today that our tentative date to get released from the hospital and sent to the Ronald McDonald house is next Friday. I know it's just tentative so I'm trying not to get excited.

We did have a wonderful visit today with Aunt Kristie, Uncle Jason, and Lexi.. We are so blessed to have such a wonderful family and support system.. My mom (Nana) and everyone is coming tomorrow. I can't wait to see them!!

I've tried for the past 30 minutes to add photos but nothing seems to be cooperating with me tonight. So we are heading to bed. Maybe next one will have pics :)

I still would have chosen you!

I found this poem today! I had to post it :)

 I Still would have chosen you - By Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you

If God had told me, "This soul would one day need extra care and needs", I still would have chosen you

If He had told me, "This soul may make your heart bleed", I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you

If He had told me, "All that you know to be normal would drastically change", I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you.

Thursday, December 29, 2011

The rest of the day was good. Lynlee is feeling the best she's felt since surgery. She's getting a little energy here and there but is still very weak. We are down to one IV line and the gtube line right now so getting her in and our of bed is more easy and we don't freak out since there isn't something sticking out of her neck.

She got a good wipe down today and got her hair washed.

She sat up a lot and played in bed.

By the way her stitches are looking amazing. We were lucky enough to get a half moon shaped. Most of them get an upside down T.

We took a few rides in the wagon around the unit.

That's her new cheesy face. Eyes closed! HA!

We drank bunches of water and some apple juice..

Pooped!! (I know this might be TOOOOO MUCH INFO, but it's huge in the post transplant world!!!) She's so going to kill me for all of this one day :)

And enjoyed the view.

                                  She will never know what the pictures means to me!

It seems that both her port and the EJ that came out of her neck are growing cultures. Gram Positive to be exact. They think that since both of them are they might be contaminated but they are running a antibiotic for the next 7 days just to be sure.

Pappy was the last to leave today. Ryan and I have been very spoiled by the company and support we've had. This is the first night we've been alone!

I think that's the run down of everything. I still can't believe tomorrow has been a week. I can't believe how far we have come in one week. She is so unbelievable. We are truly blessed.

I think I'm heading for bed. I should go to CNN or something to catch up on the real world. I haven't watched anything other than Barney. I have no idea what's going on in the real world. I haven't had fresh air since we walked in the door at 10am on Friday. Maybe that should be my goal for tomorrow? or Saturday? We will see :)

It's never a good thing when you wake up at 2:10am and you hear your nurse say "Oh Shit!" I jumped out of bed ran over and Lynlee had pulled her G-Tube out. I popped it back in for them (if I don't then it's this huge process, that we don't want to deal with.) Then  I was told her temp was 101.5. Now I'm the one thinking Oh Shit!

The new few hours were kinda busy. I did doze on and off while Ryan stayed up with Lynlee. They gave her some Tylenol. Started her on an antibiotic and pulled out the line in her neck. They are pretty sure it was infected. The bandage on it was changed 3 times yesterday! They sent out cultures of everything including her drain tubes and we will have results in about 24 hours.

It's 10:30am now. Both Lynlee and Daddy have got some sleep. Both seem to be doing better :)  Lynlee's temp is completely normal. We did get another IV put in because we are going to need some blood today.

We are hoping that is all the excitement of the day. Keep ya posted!

Wednesday, December 28, 2011


As soon as Lynlee woke up this morning I kinda thought her prograf level was high or something was wrong. She looked good, but just acted pretty whiny and irritable. And yes it was. They say it's completely normal and will take time for it to get adjusted. The only side effect I really hate is that she's so shaky. I feel sorry for her.

Other than that today was a great day. Her swelling is almost gone. They've got rid of a few more meds and another IV came out this afternoon. Her ultra sound looked good today and her liver function test are down in the 200-300. Normal is below 70 but we started in the 3000 post op so things are looking great.

We were more than picture happy today..

Thank Goodness Lynlee can watch Barney over and over again!!

Sweats and glasses....The only clothes I wear, and I don't even feel guilty about them here.. (FYI, I do shower tho incase your planning a trip to visit!)

Pappy brought us some shaved ice from the Rita Stand. Oh I wish I had got a picture for you guys. We got Mango and it was delish.

We must have been brave because then we ordered Chinese from across the street. Our first non cafeteria food since we came. It was okay. I've had sooo much better and probably worse too..

We got our first package in the mail today.. Thanks so much Megan, Scotty, and Kinley! We love it!!

Lynlee got her oxygen off again!! Her breathing seems much better since the swelling is down.

And I saved the most exciting news for last... I said yesterday that Lynlee was drinking water.. Well she has went from loving it to be obsessed with it, ha ha.. All day long we give water.. Tomorrow will be hard because they are preparing her to have food by Friday or Saturday so will have to lay off the water so her belly can get adjusted. Now it all pretty much runs out anyway because her gtube is being vented 24/7.

Some how we got a sippy cup. Not sure from what floor but it was a huge hit today. I will never be able to explain what seeing this means. In 2 years Lynlee has never taken more than 2 sips of anything at a time and now this.

Tuesday, December 27, 2011

Tuesday. December 27, 2011

Today was an okay day.

We had a bumpy start to the day. Lynlee was coughing a lot and her oxygen level started decreasing. She has a lot of fluid around her lungs from all the fluid from surgery. So they put her on some oxygen and gave her some meds to pee a lot and in a few hours she was better. 8 hours later she is a new kid.

She figured out how to get her NO,NO's off. Those are the arm restraints you see in all the pictures of her. She can literally throw them across the room and then watch out because she is pulling every line in site.

They did two ultra sounds today because in the morning ultra sound her wave in the artery changed. It was the same wave in the afternoon so all is good there.

Her numbers are still coming down great!

And speaking of great..... She drank almost a whole cup of water today!! I can't tell you how thrilled I am that she is drinking! She has never taken more than 2 drinks and she probably didn't swallow them. So for her to be asking for a drink gets me so excited! I can't wait to introduce food to her! I really think she will eat! I can't wait!

We also had a visit from Aunt Janna and Uncle Kevin! And that is never complete without a little dancing!! She is shaking her booty in her bed :)

Well this momma is hoping to call it an early night. They are checking vitals every 2 hours and it makes for such a long night!

Monday, December 26, 2011

We're moving on up... To 7B

Hello from 7B the transplant floor. It's 9:30pm and Ryan and Lynlee are both sleeping (do you see a trend here? haha)

We've had another blessed day. Lynlee was moved to the floor this evening and I can't tell you how much better it is to be here. She's in a bigger bed which she seems to be so much more comfortable in and the environment is just better here. She kept asking to watch Barney on her monitor in PICU. HAHA So we weren't even down here 5 minutes and Barney was playing through the xbox. That's right there is an xbox in our room!

Labs are still looking good. Her prograf level (which is her rejection drug) has been a little high today so she's been a little shaky and nauseated but nothing we can't handle. The doctors said it would take about a week or so to get her level really straightened out.  They did stop her pedalyte until the nausea goes away. They might have went a little fast on the feeds.  And her swelling is starting to come down. Even from this morning I see a difference.

But I'm loving the chubby cheeks. I'm thinking we might keep them.

Everything is happening so fast. I honestly can't believe that 72 hours ago she was in surgery for the transplant and tonight we are hanging out watching Barney. I was expecting to be on a ventilator waiting for her to be sewn up now. The doctors keep saying how great everything is going and saying other things. I can't even type what they say because I'm so afraid of jinxing us. I literally typed it and back spaced. I shush them every time they say something. I'm usually not a pessimist, but I know our luck. I'm just afraid that if something is too good to be true it probably is. I'm hoping I'm wrong. That we've lived our share of hell in the past and it might have tested us but we are a strong family and our faith is still there.

Ryan and I are so good now. We have a sense of relief about us, and not just us the whole family. We are so blessed to be surrounded by family and friends. We've had family with us here from day one and the support we have from you guys keeps us going. I don't know that we will ever be able to thank everyone for the love and support we've got. But we do appreciate it. We appreciate the calls, the texts, the facebook comments, and last but not least the prayers. God does amazing things. He answers prayers. If you don't believe that call me, text me,or facebook me we need to chat..

I sent this picture to my sister-in-law because she was making fun all my 31 product, but I thought I'd share it with you guys simply because it makes me smile. This was me on my way to do laundry today. See I accomplished something. A shower and 2 loads of laundry.. Whew, what a day :)

Also so many people are asking us for our address. Here's the address for the Ronald McDonald house:

The Plaza Building
Room 1106/Arbogast
451 44th Street
Pittsburgh, PA 15201

Until tomorrow! Good night all.

12/26 update!

Well it's Monday.. Monday morning to be in fact. 7:30. I'm up sitting in the room while Ryan and Lynlee are sleeping. For the first time last night I let Ryan stay with Lynlee while I went to the Ronald McDonald house and slept. That tells you two things. One, that I was really tired and two, that I really feel comfortable with how Lynlee is right now.

Her liver numbers are coming down beautifully and everything is looking good. They started her on some pedialyte last night (very little like 5cc's per hour) and today we will find out if we are moving to the floor.

Yesterday afternoon was filled with worry. When they were on the 3rd ultra sound of the day we knew they couldn't see something.. As the ultra sound tech went and got someone else and then so on we were scared. The docor soon called and said they couldn't see one of the vessels in Lynlee's liver. The liver they used had two work vessels and at that time they couldn't find one of them. They wanted to take Lynlee to do a CT scan of the belly. After waiting for hours for the scan and finally meeting with the doctor around 9pm last night this is what we've learned.

          The liver they used did have two vessels but now only one vessel is supplying the liver with blood flow. The vessel that isn't working might have never worked or it has clotted, either way it's okay. The one vessel is doing its job. The liver is getting adequate blood flow.  If we would have used a living donors organ she would only get one vessel that way also. They could go in and try to fix it but then they could hurt the working vessel and we would be looking for a new liver. So that could hurt her more than fixing her. He also said that this doesn't mean we will have any problems in the future. They have full hopes that Lynlee will have this liver her whole life and live a long life just like me and you. And that is the only thing I want.

Sunday, December 25, 2011

Christmas update!

Last night was an okay night. Lynlee and I were up about every hour from 11pm to 4am. Her artial line in her wrist was not cooperating. It made her blood pressure look like it was lower than it actually was and had our machines going off all night. Around 4am they gave her more pain meds and we slept til about 5:30 when they were doing a chest xray and an ultra sound of the new liver.

We woke about 8. When I woke Santa had came. I'm so shocked that the kids in the hospital get soo much. God bless the people that donate!

Things are going better than we expected. Her ammonia is down to 38 on its own :) The took out her artial line, her urine cath, her nasal canala, and her drain that went down her nose to take pressure off her stomach. My medical/technical terms are slow these days.

We learned that if everything goes as planned we will head out of intensive care tomorrow and get a big room on the floor. That way more than 2 people can visit at a time and Ryan and I can both stay in the room at night if need be. Yesterday we got into the Ronald McDonald house (a life saver!!) its even connected to the building. Ryan and my dad spend the night there last night.

Lynlee did get some blood today which is to be expected, and I got to hold her for the first time since surgery. My time was short since the ultra sound tech was back for more pictures but it was the best 30 minutes!! In case you didn't catch the picture on facebook here it is..

Oh and Merry Christmas everyone!!

Saturday, December 24, 2011

Here we go... let the roller coaster begin

I almost blogged last night at 2am, but I figured as tired as I was I wouldn't make any sense. Maybe I should have because I'm twice as tired tonight. I'd be lying if I'd say it hasn't been a rough, hard, emotional 48 hours at this point. I'll start at the beginning.

Thursday night at 11:15 we get our first call. Saying the surgeon said to call and to be on stand by. I thought I had prepared myself for that call. Let me just tell you that nothing prepares you for that call. I was so scared I was shaking. My legs were shaking, my voice was quivering. I remember setting in bed looking at Ryan and saying I don't know if I'm ready for this. We called a few family members gave them the heads up and I got my self under control. I pulled out my list and started packing. Probably 30 minutes later went by and the phone rang again. They wanted us in Pittsburgh at 10am Friday morning. By the time we made all the phone calls and continued packing it was 1:30. I think I slept an hour that night.

We get to Pittsburgh a little before 10, get admitted and go up to the room. The surgeon was heading out at 2pm to look at the liver. I know some of you liver moms will laugh but I hadn't prepared myself for the wait. I thought we were going to walk in the door say goodbye to Lynlee and she would be rushed to surgery. HA! Oh how I wish that would have happened. The waiting was awful. They did all her labs, started her on fluids and we walked the halls. Her mediport came out twice during the day and we had to re access. She took two 20 minute power naps all day long and was out of control. We were told that we would know something by 3 at the latest. At 3:30 we were told they were late going in. The donor family was having a very hard time letting go. God Bless their souls!!!!

I'll save you the long gory details of a crying child, anxious parents etc and give you something to smile about. We got down to the OR at 6:15ish.. Lynlee was wired for sound and was her usual self. She's a charmer. She had all the OR nurses dancing with her, playing and getting all the attention she could handle. Her's a few pics of her in the act..

She went into surgery around 8pm. We were given updates all thru the night. Around 12:15ish the new liver was in. By 5am she was out of surgery. She did amazing. We had expected them to leave her stomach open but the liver was such a perfect fit that they could close it. Wow, what a blessing. Ryan and I got into see her around 6am. As soon as she heard our voice she was fighting her breathing tube. By 7:30 she had reached out and grabbed my hand! Sigh.... And by 9:30 she was breathing on her own.

We thought it would take us days to get to where we are within hours. What a blessing from God. I worry, because I'm her mom and that's what I do, but I don't want this is to be too fast. I want her to rest. I know Lynlee and she doesn't ever rest. She has one speed and it's fast!! She is fighting so hard. She is saying momma and dada, answering yes or no questions and even tried to roll over. REALLY???

I'm trying not to get soo excited because I know the road ahead of us can be long and bumpy.. But I'm happy we are off to a great smooth start. Her liver numbers are coming down nicely.

Here's a nice little picture of her.

I know there is sooo much more to tell you and to fill you in on but I'm drawing a blank.

We are so blessed. Thank each of you that have said prayers. God is good!! Thank you for loving, caring and supporting us.

I'm honestly too tired to reread what I wrote so good luck. Hope you understood it. I'm off for some sleep. I'll try to update my blog as much as possible. So keep checking back in for updates

Thursday, December 22, 2011

Look who's grown!

Look who's grown so much in a year....

Christmas last year:

And Christmas this year:

She's going to be driving before we know it!

Saturday, December 17, 2011

More Randomness

It was another busy week last week. We have almost all our shopping done except two presents. I'm hoping to get both of them this weekend so next week I can stay out of Wal-Mart next week. And all of the presents we do have are wrapped. :)

Speaking of Christmas, we gave Lynlee her slippers that came in the mail the other day. I didn't think she would wear them, but she loves them. She even has them on as she naps right now.

I'm so glad we decided to "act" like we would be home for Christmas. I think it's made the waiting easier. I know they could call anytime but now I'm kinda hoping we make it through Christmas. If we don't then we don't and there is nothing we can do about it, but I have a feeling we will..

We had Lynlee's ammonia checked this week after a small scare. Honestly, I was the only one that was nervous with her actions, but it was time for a check anyways. Monday night she woke up at 2am and was up until 5:30am. After I finally got her back to sleep I had a hard time waking her at 11am. The child is always up by 9. I decided her actions were too off for her so we packed up our stuff and headed to Weston. The ammonia was 69. Higher than before but  was right before her feed which had her meds in it, so it would be lower within the hour.

We met our new speech therapist last week. I liked her! Really liked her! I'm excited for a new start with new ideas.

Construction is coming along.. This is the picture I now see when looking out the window! Much better than before even if we aren't there yet.

Since it's nap time it's momma get stuff done time.. 

Monday, December 12, 2011

Christmas cards and etc.....

You never know how bad you want to blog until you can't. I mean I could blog on the iPad but I can't upload pictures on it, and its really just a pain in the butt so I prefer not to. It's been a long frustrating weekend. On Friday when Ryan went to get his truck worked on we found out that his whole front end was coming out. Then within the hour, Lynlee knocked a container of milk into our laptop, and my blackberry started acting up. Yes, Friday was Awesome for us!

I'm so thankful for a new week. The truck is fixed, we have a new laptop and a my blackberry died so I got a new phone for Christmas. That's a whole lot of newness to get used too. So I was excited to actually sit down and blog today. I don't do much typing otherwise.

So far, I'm lovin it. (I sound like a McDonald's commercial!)

Last Thursday we decided to work on our Christmas cards. I knew what I wanted to do thanks to Pinterest. But getting Lynlee to cooperate was a whole other story.

I thought that was going to be our Christmas card for the longest time!! Where is my child that cheesed it up every time I said smile?? Oh that's right she turned 2!!! UGH...

But after lots of cropping I got this picture. It looked awesome on the card! I was so pleased.

Okay I have lots to do to catch up. Til next time

Thursday, December 8, 2011


My goal at the grocery store today was to accomplish 3 things. Get ingredients for a meatloaf tonight, get ingredients for a low fat brownie mix recipe that I found on line and to get a "Holiday" mug.

I've used the same coffee mug for the past 5 Christmas's at least. I've had it out of the box for a few days but couldn't get myself to use it. Since I woke up to this view this morning I thought it was more than appropriate.

It was a little after 7am since I woke up to scraping, pounding of the new addition. I sat down in the recliner took a drink out of my mug and my glasses steamed up.. NICE! (insert sarcasm here) I guess I've never really used my coffee mug at home. I thought it was always a work mug. I'm not sure what I done last year!

I seriously looked all over Wal-Mart for a new one, but none matched my style. They were all huge like the one I had or super small. Ugh, so I'll keep looking.

I walked in from Getting ready today and found Lynlee laying on the couch! This is the first time ever she's sat still to watch something let alone lay down!

And this is Lynlee in her coat her daddy got her! Not the best picture but I loved it!

Okay off to finish dinner! and maybe work on our Christmas cards.

Wednesday, December 7, 2011

Lynlee's turn to decorate!

After a whole day of chasing Lynlee down from taking the bulbs off our tree and running down the hall with them, Ryan finally pointed out what she was doing. She's trying to decorate her tree! Oh wow, I obviously need more coffee of a morning!  So today after we had an amazing lunch with my MIL we headed to the Dollar Store. We picked just a couple non breakable ornaments and some balls to put on so no hooks had to be involved!

While we were there we found a package of door stickers. We might be going back tomorrow and getting more! She loved them soooo much!

Doesn't this picture just make your heart melt??

 The finished product

After decorating the door and watching it snow some we went to decorate Lynlee's tree. She cracks me up! Her personality is just amazing to me! She told Ryan were to put every ornament!

It must look better because she hasn't stole a bulb since :)

Okay off to watch it snow more! Have a wonderful evening everyone! 

Tuesday, December 6, 2011

It's starting to look a lot like Christmas

We are officially decorated for Christmas. Due to construction we've decided to not do the outside lights, but the inside is ready to go. Everything is out, but a few very breakable things I've decided was best to leave in the box until next year or maybe even the following year!

Lynlee was a huge help from start to finish (or when we decided she was finished and needed to go to bed). Which was actually after we got the final lights on her tree. 

My favorite part of the evening was actually when Ryan was putting the lights up on the tree. We had already put up Lynlee's pink pre-lit tree in her room (pictures to come in another blog) when she grabbed a set of lights and headed down the hall to put on her tree! Too cute! Those are the memories I never want to forget!

(What a big necklace mom! )

The first Christmas that Ryan and I were living together we bought an ornament. Since Lynlee was born we buy her an ornament every year. We picked up the 3rd Christmas for her this past weekend! Hers makes me smile!  

Our first ornament together

And these are Lynlee's

And the final product.............

Monday, December 5, 2011

This and That

After a busy weekend of Christmas parades, Christmas shopping, and construction I was looking forward to a low key Monday.

                                                          (she's so going to hate me when she's older!)

My to do list looked a little like this when I woke up at 7am.
  • wash beds
  • move the dog crate (which included moving my living room around)
  • work out
  • shower
  • run errands
I quickly learned that I was going to have to forget about working out. After the contractor knocked on the door 4 or 5 times I figured shower was the most important! HAHA

Oh construction how I hate thee. I mean the final product is going to be amazing! I'm so excited to have a master bed and bath with a walk in closet, but getting there feels like it takes forever. I mean who wouldn't want to have their back yard looking like this:

                                                             (You're jealous, right???? )

And the worst part is that Lynlee and I are up at 7am. Whew, that's taking some getting used too. I mean We don't roll over until 8 or even later. I think most days Ryan would rather cut off an arm than wake me or Lynlee before 8:30. Not only are we cranky but we've had to redo all her feeds and get into a new routine. Well I should say we are still adjusting. It's hard for me. I'm such a routine person!

Lynlee is loving all the excitement. She supervisors!!

Okay- now off to put up some Christmas decorations and possibly the tree!