Tuesday, January 31, 2012

We are getting there!!!

I'm not going to lie yesterday was hard. Maybe the hardest day I've had here. But that was yesterday and we've had a much better day today. We were up bright and early to get labs. We had to get a few repeats from yesterday because of the high and lows. Came back had breakfast got ready for the day and went for a long walk. It was really the first time I've walked for weeks. By the time we were back at the hospital my legs were burning a little (okay maybe a lot.) But we stopped by the grocery store and bought a few things, it was nice just to get out.

Walking back, enjoying the 60 degree weather, I realized something. I should just be thankful to be out walking. Not complaining to just be hanging out here. There are people here that aren't going home anytime soon! There are people here from different countries that would give anything to be told a couple weeks so I need to suck it up...

On Sunday I was freaking out about Lynlee eating. I knew she was on half her normal calories and she should be hungry. She even acted hungry but when she went to eat she would gag and not swallow anything. I debated about calling the hospital on Monday and setting up an OT appointment even though I'm against it. Not that I'm against them but every time Lynlee walks into an out patient room she screams! She is soo afraid of everyone these days I don't think OT could help her if they wanted to.. So I emailed Anna (our old feeding/speech therapist) and she told me that she thought Lynlee could swallow. That she needs to practice. To start with easy, soft foods as if she was 6 months old. That she has low tone and needs to have strength and coordination and she will get that by eating.. So I done what she said and started over.. We stopped giving her toddler food and went back to the "baby food." Our nutritionist in clinic on Monday said to mix applesauce with baby food to help with the taste. The past two days have been much better.And tonight was the best night yet.. I'll never be able to put into words what's is like to see Lynlee set at a table and eat.. It brings tears to my eyes. And for her to fed herself and use a sippy..Well I can barely stand it!

Todays dinner: Before & After...

Lynlee's labs looked better today. Her potassium was a little high but lower so we will repeat on Friday. And then the coordinator told me potatoes are high in potassium.. OOPS!! But at least she enjoyed it.. The results of her ultra sound are back. The blood flow is perfect and everything has healed with the tissue. Praise God!

Tomorrow is our free day. We will have to get a dressing change on Thursday and then I guess a lab on Friday.. But it's not like we have anything else going on. So until then I'm going to sit back and enjoy every moment with my baby!!

Monday, January 30, 2012

I thought when Ryan left today it would be easier than it was last week. I mean we've been through it before, but I was wrong. It was probably hardier. Actually I know it was harder. I think it was because last week I had his mom here. This week no one. I didn't have to pull it together for anyone. So 30 minutes later of me still feeling sorry for myself (that's okay every now and then, right?) I knew I had to pull it together! And I did.  I'm not going to lie, I hate it here by myself. I think it's mainly because I've never been by myself. I moved from living in my house my whole life to  moving in with Ryan. I never had a period to live all alone like most people.

But that's over with. I could whine about this all day (and I might be complaining again tomorrow) but it's all said and done. Lynlee is napping now and when she wakes up we have a date in the playroom followed by washing some towels. We have an exciting life! HA!

I'm still waiting on my phone call from our coordinator with all the details but clinic went well. They stopped two of her medicines (yay!) and we don't go back until next Monday. She did lose 2 pounds over the past two weeks. Most of it was the TPN and the fact when she did go back to her feeds she went to 1/2 calories. And to be honest she had a few pounds to shred. She doesn't NEED all those extra calories now like she did before transplant.

I asked when we could go home, and the response I got was when she can maintain her weight at a full feed. We will be at a full feed Wednesday, and I'm hoping she maintains weight this week. Do you think they'd notice a full diaper and a snowsuit and boots and the next clinic appt for the weight? HAHA. I am getting anxious to go home. It's hard to sit here when they are doing nothing that we can't do there. I do 100 times better in a hospital when I feel like we need to be there not just hanging out. But we will make it.. However, next Monday if all looks good I'm going to be annoying them a lot more!

She did have an ultra sound this afternoon. It went so much better than I had expected. Our favorite tech did it. It's sad we have a favorite tech! But we do. He's awesome and Lynlee always does better for him. I'm hoping to get the results of that when they call about her labs. I can see her labs on line and I already know how everything looks. Her prograf level is a little low, and her potassium is a little high. So I'm waiting for changes on that?

I'll keep ya posted!

Oh and speaking of skinny minny.. here she is....

Friday, January 27, 2012

Things here are uneventful. Really they are.

Yesterday we got labs drew, Lynlees PICC line dressing changed and that was pretty much it during the day. Aunt Janna came to visit in the evening followed by a quick visit with Uncle Kevin. It was so nice having company. We ordered pizza and had a great girls evening in.

This morning has been the first morning with no TPN and to say it's been wonderful doesn't even do it justice. We actually celebrated by taking a quick trip to Target this morning. I wanted to go early before it got crowded. Of course I wiped the cart down with sanitizer and probably used hand sanitizer once or twice (really like 3 or 4) times during the 30 minute visit in. I'm just so afraid of her getting sick right now. Dottie offered to drive us to the mall but Target was all my heart could take right now.

I'm writing in the middle of the day for two main reasons. Lynlee is sleeping and Dottie is out walking.. And two...... Ryan is on his way back up for the weekend. It's unplanned. He was supposed to stay home and work on the addition but a few things fell threw so hes' coming here. I seriously can't wait. I know some of you are thinking it's just been 5 days.. And it has. But it's not just a normal 5 days when you are here..

They are long days. They are very confined days. Lynlee isn't always happy. It's cold and nasty out so we can't go for walks and with it being cold season I'm scared to death to go anywhere. So 5 days feels like weeks here.

And besides Ryan is pretty great. He's always been my strength. Days when I didn't know how to go on he helped me make it through. He takes care of me. And he's the only one in life I feel like I need.. He's definitely the better, stronger half of our marriage..

So incase I'm MIA all weekend.. Things are good here.. We are back to her old feeds. We have clinic on Monday morning followed by an ultra sound to see when we can stop the lovenex (blood thinner) shots.. And that's probably it!

Have a great weekend!

Wednesday, January 25, 2012

Have I mentioned I'm sooo excited for tomorrow to come??  Just in case I haven't, I can't wait! Tomorrow at noon will hopefully be the last time Lynlee will be on TPN. To say it's the TPN is exhausting is putting it nicely. We chase her around with the backpack for 16 long hours. Yes, we does sleep for most of those, but it's still a long morning.

Starting last night, they started weaning the TPN. That means they did 8 hours TPN and 8 hours D10. The transition over is at 4am. Yes, that was 4am. So all three of us (me, Lynlee and Dottie) were up at 4am for a while. Not long, but long enough that it's hard to get back to sleep. Then Lynlee's prograf is due at 8am.

This morning wasn't pretty here. Lynlee was sooo cranky, whiny, sleepy. She finally laid down before noon and took a 3 hour nap. She really needed it. And I can't tell you how great it is to let her nap for 3 hours and not worry about her ammonia being up. She woke up a new person. In a great mood, ready to play.. How nice!

We took advantage of the afternoon and went to the play room to play. We did some laundry, and then headed back up tonight for the Taco Bar set up by a volunteer group. The Taco bar was good, but the cookies were amazing. We also met a nice family that had a daughter have a double lung and liver transplant. When we actually just listen to people you learn so much.

This might be my favorite picture ever!!!

Lynlee and Momma playing..

We have an early day tomorrow. We don't have clinic but lab work at 8am.

Lynlee is getting so attached to mommaw being here. Dottie's phone was dead and Lynlee had to go sit by her! haha ..

And just another picture that makes me smile..

Tuesday, January 24, 2012

I had all intentions to blog last night. I really did. However, Lynlee didn't have intentions to sleep. She was up until after 10pm. So after we got her down I was ready for bed myself.

Yesterday was a big day for us. We had clinic at 9am. Everything looked good. We are switching from TPN to feeds again on Thursday. I can't tell you how happy I am about this. I hate TPN. I hate that we have to chase her around with an IV bad for 16 hours a day. So Thursday hurry up and come!!!

We actually don't have clinic on Thursday. We do have to go get a prograf level (because her level as a very low) and that's it.

Yesterday at 4pm we went to see Lynlee's old liver. It was very very neat! I know that's a weird way to describe it, but I don't know how else too. We got to take pictures. I'll spare you the pictures in case any of you don't want to see. We were able to touch it. There was no visible damage that we could see since it's all "chemical." They also had another 2 years old liver there and a 9 year olds to compare them too.
I'm glad we said we'd look at it.

Ryan went home yesterday. We knew he would have to go home sometime, and were are beyond blessed that he stayed with us this long. Our bedroom addition is far from being finished, and he has to work. I thought I had prepared myself for him to leave, but I was wrong. It was hard. Very hard. Ryan's mom is here for probably the rest of the week to help us transition off the TPN and everything. Thank God for family!!!

That's about it.. We aren't doing a whole lot of anything these days. We hang out a lot, play a lot, eat a lot. LOL.. We go to the playroom all the time.. Here's a few new pics til next time.

Saturday, January 21, 2012

Today was a very chill today. We had some company earlier in the day. My grandmas sister and our cousin Kim came to visit!

Then the rest of the day was pretty low key. We tried to get Lynlee to drink all day. We went to the cafeteria and got some sweet tea and was shocked when she asked for some. We put it in her sippy cup and she loved it. She is certainly her daddy's child. I'm not sure how well the nutritionist is going to like this, but hey at least she's drinking.

Also before meds tonight we gave her a push-up. We also picked up some treats in the cafeteria. I had to push it up for her 3 times! YAY!!!

And the good thing about TPN (her IV nutrition) is that we have no Gtube feeds, which means we can wear two piece pajamas!! It's the small things that make us smile..

And who doesn't love riding in a box? I know it's random but I though I'd share.Some of our afternoon fun!

Friday, January 20, 2012

Tomorrow would have made 14 days since I've walked out of the hospital. 14 days since I've had fresh air. So today I went to Target. I almost forgot what it was like to drive. I haven't drove in over a month. I can't even remember the last time I got behind the wheel of a car. And yes, this was my excuse as the nice people of Pittsburgh blew at me (maybe twice!) For the record I'm not used to the lanes and got lost once. I don't understand why this town loves to blow their horn so freaking much!

My goal was to go to Target grab a few things and get lunch from McDonalds. My goal failed. I did make it to Target (barely) and could see McDonalds, but with all the one ways and road blocks I still don't know how to get into it. Oh well. I doubt I needed those fries anyways!

While I went out Ryan and Lynlee went upstairs to the playroom and napped. I think they enjoyed their time together. We are really going to miss Ryan next week as he goes home. Sigh. I know we are beyond blessed that Ryan has been able to be here with us for 4 weeks now. It's nice to work for the family business, to have people understand. We are so fortunate. I don't know what I would have done without him. I don't know how those people from really far away do it or those single moms.

In just two days we have fallen into a routine. We get up give meds. After Lynlee's TPN finishes we are free until 8 when we get the TPN ready again. Ryan and I did it in under 20 minutes tonight. We are making progress and getting more comfortable with what we are doing.

Lynlee's morning meds. It might look like a lot, but I've seen more!

And not the best picture but look at the food on her face! I LOVE IT!!!!

Have a good weekend!

Thursday, January 19, 2012

If I'm going to continue blogging everyday then we are going to have to do something more exciting during the day! HAHA

I'm not sure how I managed to get less sleep last night than in the hospital but I did. I think I was expecting her TPN pump to beep and I actually had to set my alarm, etc. So I'm looking forward to bed time tonight.

We were up bring in early for clinic. Our appt was at 8:30am and we were back in the room by 9:30. Nothing really was said. They took labs, will keep her on TPN until next week and start weaning her off. The took the rest of her staples out and away we went. The coordinator called around 5pm. Everything looked great. No changes.

We spent the rest of the day napping (well just Lynlee) doing laundry, watching Barney, and playing cards. Not a whole lot to type about.

Lynlee did sit at the table and eat 3 meals today.. Probably about 5 bites out of each meal, but it's process. I'm wondering if this will continue once the TPN is gone and the milk is back? I hope.

Speaking of the TPN it was mine and Ryan's first night of doing it by ourselves. Last night we had a nurse walking us through it. Plus we had to change the cap thing on Lynlees Picc line. Don't you love my terms? cap thing! HAHA. Everything has to be very sterile. I'm so afraid of infection again. The whole ordeal literally took us 30 minutes. I'm guessing we will get better and faster at it, but geez it's stressful.  I think I take a minute of scrubbing the port thing (another technical word) before connecting.

No news is good new from us. So if I don't blog tomorrow its because the only thing we've done is played, watched Barney and maybe cards! HAHA

Wednesday, January 18, 2012

As most of you know, we were finally discharged from the hospital to the Ronald McDonald house this afternoon. YAY! It's after 10:30pm right now and I just got Lynlee to sleep. I'm not sure if she was so excited or just trying to get adjusted to a new place but she is going to be one cranky little girl at 7:30am in the morning. We have to get up and moving because we have clinic in the morning. Then we will have clinic every Monday and Thursday until we get the okay to go home.

There isn't a lot to update on. We had our TPN training this evening and got Lynlee hooked up. It wasn't bad, just a lot of watching her. You literally can't take your eye off her for a one second on she could pull her PICC line out while she's hooked up. It also made me realize that I can't be here alone while she' hooked up 16 hours a day.

Anyone that knows me, knows that's hard for me to say. I like to do it all, my way, all the time. And for me to say that I can't be alone here and care for my daughter is an adjustment. I know it's temporary, very temporary. Hopefully by next week they will be cutting her down to 12 hours to 8 hours, back on feeds. Her antibiotics should be stopped by IV next week too. So when we make it to next Thursday we will be good.

We did go up to the penthouse of the Ronald McDonald for dinner this evening. So many nights a week they have volunteers come out and make dinner for everyone. The word good doesn't describe it. We were so glad we went up and got out of the room for a bit. I still get nervous taking Lynlee around other kids. I don't want her catching anything right now. The doctors told us to not put her in a bubble, but that's so easy for them to say.

Well this momma is going to bed.

Tuesday, January 17, 2012

We were so close to getting discharged today.. And I mean so close I could taste it. All morning long everyone kept saying we were leaving and Ryan and I would reply that we will believe it when we see it. We didn't get ahead of our self this time. We didn't take anything over, we didn't even put our bedding away like last time.

The doctor came in and said we could go. We would plan to see him Thursday in clinic.

Then the coordinator came in. They couldn't get our TPN training today. They want a home health nurse to come to the hospital and teach us and then for us to have training when it goes up in the Ronald McDonald that evening. I guess TPN requires some mixing, priming in the lines, using the pumps etc. And they feel like we need at least two trainings to do it. They didn't care that I told them I thought I'd go take my RN boards next week just because I think I'm more than qualified these days. (HAHA! just kidding!!)

So here we are another night, but it could be worse. I'm just thankful that she is here because of those issues and not because she's sick. Her EBV came tonight and was cut down in half. YAY..

We did get to go to Ronald McDonald for 7 hours today. It was so nice. We ate lunch and dinner as a family. Lynlee had a few bites of each, but it's better than what she was doing last week or even last month.

                                                           (Lynlee and dad reading a book!)

Lynlee got a package in the mail today.. A Barney doll that sings. Thanks so much Reva!!

And despite the fact we are still here Lynlee is full of thumbs up. One of her favorite nurses Michelle taught her this and she does it all the time now. Here's two days of thumbs....

Maybe I'll be blogging tomorrow with excellent news. Just maybe..

Sunday, January 15, 2012

 What do you do when you think about your best friend? Smile right? Yep, that's what I do too. And today she came to see us. And sometimes (like almost always) that makes the world of difference. No matter how much family you have with you (and I'm thankful for each and everyone one of them and wouldn't want it any other way) but sometimes you just need your best friend. The person that knows you better than anyone. The person that you've been through it all with. I've had lots of friends come and go. Lots of friends seem to vanish after you don't talk to them for a week or two, but me and Erica pick up right where we left off.

After being best friends for over 10 years she is one of the people I coudn't live without in life. She is family to me. We've literally done it all together. From went to church, went out way to many nights together, took care of each other after those nights, after broken hearts, etc. She stood beside me on my wedding day. She was there hours after I had Lynlee. She went to Ruby with us when they life flighted her, she was beside me in Pittsburgh when Lynlee was fighting for her life. She is Aunt Erica, and Aunt Erica is the best of the best to me!

So other than that moment I just had I don't have much. Today was another great day. Lynlee's up and playing, and moving, and being ornery self. I do hate the fact that she gets TPN for 16 hours a day right now. We get hooked up at 8pm and stay hooked up at noon. Then at noon they give her meds for the EBV so she's on them for another hour because they aren't compatible with the TPN. Of course they aren't. But I'm getting to be a pro at driving the push car and an IV pole at the same time!

Ryan's parents left around 1pm today, the same time that Erica and Adam came in. We hung out, got frozen ice, watched the hockey game and some football. I have to say all my teams our losing. Every single pick in the playoffs are out. So with that streak I think I'll start cheering for the Patriots :) HAHA

Ryan and Lynlee and I did have our first sit down dinner at the Ronald McDonald house this evening thanks to Dottie and Dale bringing up the booster seat. I kept thinking that if Lynlee had some structure to eat she might do better. She's used to all of us sitting down at a dinner table and eating. So we tried it tonight. And she did sooo much better. She had some spaghetti O's. Probably the best tasting baby food she's ever had. She also drank some water and ate a bite of left over cake. I was pleased. I think she just needs some taste, nothing bland. On our of trips to target we bought baby food. I have to admit it was bittersweet buying baby food for our 2 year old. It made me sad, but that feeling was over came with joys of hope and excitment that she will eat. And I truly believe she will!

Well until tomorrow. Enjoy your holiday off. I know we will enjoy one more day of empty caferteria and empfy elevators! Watch out Tuesday.

Saturday, January 14, 2012

No news is good new with us. I really have nothing to type tonight. But I know how some of you are ;)

Today has been the best day we've had in the hospital in the whole 3 weeks we've been here. The diarrhea is gone and Lynlee was 100% her self today. She was up running the halls, making laps and laps. Playing hard and napping only a little. Yes life is some what normal again.

Ryan's parents came to visit today and is spending the night. Its the first visitors we've had in a week so it was nice for a change in scenery. Dottie even brought a home made lasagna. I can't tell you how tired we are of hospital food.

So I'm keeping this post short and sweet.

Good Night All

Friday, January 13, 2012

I purposely didn't blog last night. I knew if I blogged I was going to say that we were supposed to be getting discharged today (or going to the zoo as we've been saying in front of Lynlee) and I didn't want to have to tell everyone today that some fluke happened and we didn't get discharged.. Glad I saved myself all that typing because we didn't get discharged today. It's been a very long, aggravating, emotional day.

Until 11am today we were leaving. We had everything worked out, had next weeks appointments scheduled, we were heading to the Ronald McDonald for a nice cozy weekend. Then they had their rounds. Lynlee still has chronic diarrhea to the point they are worried about her getting dehydrated. They were going to just give her some Imodium (sp?) and let us go but the transplant doctors decided against it. They decided to stop her Emfaport (her feed she's on now) and go back to TPN. Yes, this a huge step in the wrong direction. But they are sure that's what's causing the diarrhea, and we can't go back to Pedisure since she still has Kylis in her tissues so that's where we land. The good news is they will release us on TPN. I'm glad they trust me enough to let me give my child IV nutrition because I certainly don't have RN after my name. After being on the TPN for 2 weeks the tissue in the liver should be healed and we will switch back to Pedisure. Whew, what a roller coaster.

The good news is the liver numbers are still normal. She's doing great with the lower Prograf level. We aren't here for any liver reason which is great. I'll take the small stuff.  The new projected release date is Monday or Tuesday.

I've had a few people ask me if we've had regrets about the transplant. We went from never being in a hospital to being here for 3 weeks now. My response. NONE! Not one. We don't have the worry of ammonia or brain damage. This stuff here is just temporary. Lynlee seems to be a different person in a way. She seems to focus more, to listen more, that fog that was sometimes around her is gone. It's kinda crazy really.

So that's the update. We will get there. I kept thinking once we get released we won't have to come back, maybe?

The emotional part of our day came from another part of our life. When it rains it pours. But we are strong, and will get through yet this challenge. For now I'll just ask for more prayers over the next week or so.

Wednesday, January 11, 2012

So much for being discharged tomorrow.

For two main reasons.

1. Lynlee tested positive for EBV. I know most of you have no clue what the means and well to be honest I didn't either until today. So here is my best attempt to explain it. They test the donor for EBV and CVM. If the donor is positive and Lynlee negative or vice versa then they do antibiotics at the time at transplant. Or if they are both negative and Lynlee becomes positive then she could get really sick with crazy levels. Well they didn't know the donor had tested positive until today when Lynlee's EBV tested positive. So instead of her being on the antibiotics for two weeks like they would have liked we started them today with an elevated EBV level. To get the level to come down they lower the Prograf (her rejection meds) plus start on the IV antibiotics. It's not a huge deal but anytime they lower the Prograf she could have rejection.

2. Lynlee has had diarrhea all day. They arent' sure if this is from the formula change, the EBV, or a new med they started her on. 

Sooo.... We will be here probably throughout the weekend.Monday is Martin Luther King Day so another holiday and clinic will be closed. Hopefully next week we will be our week.  I'm actually glad it happened this week instead of next week after we got released and us have to come back. I'd rather just stay here and get it over with.

It definitely taught us to take it one day at a time. Not to get over excited or ahead of our self.

Before I call it a night I want to tell you about this group I ended up at today. Lynlee and I were walking around the hallways and the coordinator invited us in to an "informative" group they were having. So we went in. It ended up being more of a support group. Everyone told their story, how they felt, all they've dealt with etc. I think I could have probably done without the group however, I learned one thing. Ryan and I have are truly truly blessed. We have each other, we have an amazing family, a wonderful support system with our family and friends. I don't know how these single moms do it. The ones that are miles and miles from home, never leave their kids room, have no breaks, no family, no one. My heart breaks for them.

So keep us in your prayers. Pray the EBV level goes down with no rejection. And pray for those single moms and the other families in here that aren't as lucky as that have an amazing support system like all of you reading this.

We truly appreciate all the prayers, and cards and gift boxes, etc. Words can never express what you guys mean to us, and how far you've got us.

We love you.
5 Signs I've been in the hospital too long.

1. When I saw the Christmas decorations going down my first thought was It's about time.

2. It drives me crazy when people hit a button that's already lit up in the elevator. Do they really thing hitting it twice will change something?

3. To the lady that guards the desk. Could you please stop playing on your cell phone/computer/ talking/ looking mean and just let me in instead of watching me dig for my key.. for the 3rd time today while I have Lynlee and laundry... Really??

4. I've stopped taking my own cup to get coffee in because I'm tired of being harassed because the lady is to dumb to know it's a 16oz cup and complains about her computer buttons and management.

5. When I go to get off the elevator and someone is literally in your face to get on I just want to yell BACK UP!

---They better discharge us soon, right?

Tuesday, January 10, 2012

Oh I can't wait to get out of here and get a full night of sleep. I'm sure that most of you have had your share of nights in a hospital. And if you haven't your lucky. Because once they wake Lynlee which is every single time it's over. She doesn't sleep that great here anyways. She doesn't seem to really relax. Not that I blame. She is always getting shots in the leg (blood thinners twice a day) or a thermometer up her butt (only when she is fevered! but still) or whatever else they are doing to her that day.

I'm not really sure what happened at 3:30am this morning. All I know was that I woke up to Ryan trying to find the syringe (he had slept with her last night). I was like what's going on. I guess Lynlee had pulled her gtube out and busted the balloon. I fumbled around trying to find the syringe for him. Then I was like well I'll go ask a nurse for one. Then I think I decided to stick it and and then find a nurse. I'm not really sure I was soooo sooo SOOO sleepy. Actually so sleepy in face that I picked up the gtube and tried to stick it in her belly button. Yes, you read that right. Ryan is still laughing at me today. He actually had to tell me at 3:30 that it was her belly button. I must have tried more than once? That tells you how sleep deprived I am. Then we (Ryan really, who am I kidding at this point?) that she had busted the balloon. So I had to get the nurse and they ordered another one. I think it took them 20 minutes to get it up. Finally we went back to sleep.

The doctor rounds went good today. Tentative discharge is Thursday. And they were hoping to take the last drain out before we left. But Lynlee actually took care of that herself. We left for the Ronald McDonald house around 4:30 and was allowed to stay out til 8pm. How exciting! Well around 6 Lynlee started crying like she was in pain. We figured out her drain was almost out and was hurting her. So we came back over. They finished taking the drain out and sent us back on our way. So we will definitely be discharged with no drains. :)

I guess I could make things more clear for people that haven't been here. The Ronald McDonald house is for families that live 40 miles or more away and I think for just patients under 18. It's connected to the children's hospital so we never have to go out in the cold. It has a bedroom, bath, small kitchen with microwave and refrigerator and a small living room. The rate is 15.00 a night. I'll never be able to tell you how thankful we are for it. I mean without it I'm not sure what we'd do or where we would stay when Lynlee gets released to get out of the hospital but not home since we live so far away. Because of the low rate Ryan can afford to be here more. They even have special groups come in certain days of the week to make dinners. They have food in the main kitchen at all times for the families that need it. It's really a life saver to us and to many others.

When we went over this evening we went to the Penthouse to check our mail. I found this sign in the play room. It brought tears to my eyes. I can't count the nights I cried myself to sleep in that room when Lynlee was in NICU. And now here we are 2 years later. What an appropriate sign.
                                               (Sorry for the sunlight and the shadow)

And here are some pictures of Lynlee playing. She's so happy and content there.

We are keeping our fingers crossed for Thursday and saying our prayers.

Monday, January 9, 2012

Today has been another good. There was no fever spike last night. I think she might have just been teething. Yesterday she pulled at her ear a lot and when we looked into her mouth last night both Eye Teeth and poking through the skin. I asked last night if someone would look at her ears just to make sure she didn't have an infection. Do you know what they said...... Are you sitting down....... That there was no one here at 7pm last night that could look at her ears.. Really? Are we in a hospital? Are you kidding me. The place that on Christmas Lynlee had a CT Scan and the liver surgeon was in our room at 9pm explaining to me and Ryan what was going, but no one can check ears around here.

Ha! I'm still laughing. Well not really.. And then this morning when the PA checked on us I asked her to check her ears. She got this deer in the head lights look and was like oh wow, I'll have to find the tool that we do that with.. This was at 10am. I think her ears finally got check around 3:30pm. There was no ear infection.

We were supposed to be getting released to Ronald McDonald tomorrow but that's not the case. Lynlee's drains (now just one drain) turned milky. It's really not a big deal. She just went on a low fat diet and they changed her formula from Pedisure to Im-something-or other. Nice, I know! So now we are here until the drain clears up probably a day or two and then we are free.

Other than those two things there isn't much to report. Ryan and Lynlee took a little nap this afternoon.. Man I love these two more than life its self!

And they did let us take Lynlee to the Ronald McDonald house for a couple hours in between feeds and medicine. It was SO, SO, SOOO nice. Lynlee was herself. I have to admit I've been worried about how the real Lynlee is going to be now. In here she is very very clingy, and whiny, and demanding. We would never leave her in a room by herself even to run to buy a soda. She would flip out. She cries the minute anyone walks into the room. It's sad actually.. So to see her play in the living room by herself made me all warm inside. Lynlee will be the Lynlee we've always known. So I can't wait to get out of here!

No matter how pretty the view is from our hospital room.

Sunday, January 8, 2012

I fell asleep last night laying down with Lylee around 9:30. Exhaustion seems to kick in a little earlier every night. We were awake by 10:30 with the nurse saying Lynlee had spiked a fever. They grew cultures from her line and sent them off and gave her some Tylenol. She tossed and turned most of the night. Around 4:30am she spiked again.

The doctors were in this am. They aren't really sure what's going on. It could be as simple as it was a fluke since it hasnt' happened again. It could be an infection in the PICC line but her arm looks good and the line is soooo fresh!  We will know within 24-48 hours the results. It could be an infection called C-diff from her antibiotics. The good news is its not rejection. Her liver numbers are still perfect.

We did the get word that one of Lynlee's drains can come out today. They've yet to take it out but I'm hoping they still come in. I know it will probably happen tomorrow but I hate the drains. She has learned how to undo them. So we are constantly closing them, spilling them on us, the bed etc. Have I wrote that before? It feels familiar. Sorry if it was a repeat! We were waiting for the magic number of less than 100ccs per drain. We hit 90 and 100 today. I'm hoping tomorrow they both come out!

Yesterday was a real good day. Nana (my mom) Grandma, and Aunt Kara came to visit and stay the night. Ryan and I ran to get groceries in case we do get released next week. We have a microwave in the Ronald McDonald apartment and that's about it, but I'm so over hospital foods. Frozen meals have to be a nice change for a while. (I'll probably regret that sentence in 2 weeks!)

Today has been good. Lynlee seems to be feeling well despite last nights ordeal. We are praying it was just a fluke. Nana and family went home this morning. Uncle Kevin and Aunt Janna came to visit. Now we are just kicked back watch the Steeler game.

Friday, January 6, 2012

I've yet to figure out where a day in the hospital goes. You would think it's hard to pass time in the hospital but I don't find that problem. Our day seems to fly by everyday and I always feel like there is something we need to do or something.

Today was another good day for us. I'm liking the trend! We are hoping to get her drains out soon. I hate them. Really I hate them. I think they look awful and besides that they are either leaking all over the bed, my leg, Lynlee, etc.... now Lynlee figured up how to open them! Awesome! NOT Everyday during rounds I secretly pray today is the day, but no luck as of yet. Lynlee's on her full feed now, but the past couple days her eating isn't so hot. I'm hoping after we get out of here and she's more comfortable with us she will take off.. Hopefully!!

 Lynlee got visited by a child life dog. I love these dogs, and think it's a great thing the hospital does.

                                                                     This is Charlie.

                   And this is Lynlee trying to cheese and brush Charlie at the same time.

Ryan and I had more training today so that we will know all the meds to give Lynlee and what they mean. They also went over all the signs to look for with rejection, when to bring her in, etc.

While we were in training Lynlee went to the big play room with Mimi and Pappy. She also played with some bubbles. Thanks Danielle!!  We spent the day finger painting thanks to Ton Ton. Somehow she even managed a nap or two.

HAHA. I swear 2 weeks ago I would have had her ammonia checked for falling asleep at 6pm.. And I know you love the outfit right. This is what happens when Daddy is in charge of packing the clothes from home. We might mis-match for months.. And this will drive me nuts!

Oh and probably the highlight of the day is Lynlee finally had her turn with a car. She loved it. I've heard 16 laps around the unit is a mile! Awesome! Because momma needs to be walking.. All this hospital food and limited exercising isn't great. Somehow we mixed in an excise tape in the Barney DVD's. But Ryan won't let me work out in the hospital room. HAHA.

We are hoping for sleep, but who doesn't hope for sleep in a hospital. I seriously am counting down the days until Tuesday so we can get some much interrupted sleep..

I know, I know I didn't blog yesterday. Sorry. I've had two text and two facebook messages asking about it.

Everything is good. Really good. I just didn't have a chance to blog because Ryan went home for the day and night yesterday to get some stuff taken care of and we were visiting with family. My dad and Sheryl came to visit and spent the night, and Aunt Heather and Uncle Keith came and spent the whole day with us!  Plus my daughter that used to go to bed at 8:30 or 9pm now stays up until 11 or so. I'm not really sure why? But by not getting much sleep at night with the nurses coming in, and everything else going by 11pm I'm beyond exhausted.

There really isn't much to report. They are talking discharge early next week. We are working on feeding. It's going. Yesterday wasn't her best day, but Wednesday night when we ordered the mashed potatoes she loved them. She ate more than she's ever ate. Yesterday we ordered her pureed chicken, carrots, and green beans. First of all, it was the most disgusting thing I've ever seen. And for dinner we ordered mashed potatoes again, but the kid was so tired I think she couldn't eat. She literally took two 10 minute naps yesterday.

Sorry if this doesn't make sense or runs together. I haven't had my coffee yet this morning.

I'll try to update everyone tonight. We are very excited for daddy to come back today.

Wednesday, January 4, 2012

                      This was taken last night after surgery. Snuggling with her mommaw.

Today has been a great day! Lynlee hasn't spiked a fever since yesterday so it was the infection causing it. And things are finally going in the right direction for us again.

We had our rounds today and the doctor said that the numbers still look amazing. They are cutting down on her TPN and starting her feeds by bolus. We can start introducing solid foods. And hopefully we will be released early next week.

I just put in the order for mashed potatoes.. I'm so excited.

Lynlee was actually unhooked from everything for 3 hours today so we got to go off the floor for a walk. We stopped by 6th floor for some more frozen ice. We decided on cheesecake flavor today. It was sooo good. Lynlee had about 10 spoonfuls herself. I'll never be able to tell you what it feels like to see her opening up her mouth and wanting to eat something. For 2 years we've made her take bites and I don't know if she ever swallowed anything.  We definitely have a new way of life coming and I can't wait.

We've taken lots of wagon rides and stroller rides today! We even walked to the playroom and played for a few minutes.

                                        Man all of this moving around makes a girl tired!!

Notice the WVU shirt. We don't get much love up here but oh well! HAHA. Thought I'd blog early today so we can watch the game tonight!

LETS GOOOOO!!!!!!!!!!

Tuesday, January 3, 2012

Lynlee spiked a temp right before bed last night and then around 6:30am this morning. Our night other than that was pretty calm. Ryan slept with Lynlee until around 5am and I switched him places then. It was nice to get some rest.

We woke up to hearing we would be in surgery sometime this afternoon. We didn't know until they were ready for us when it was time. Surgery went as planned. They took the port out and put a PICC line in her left arm. The doctor came out and said we could see her in about 20 minutes. Not even 3 went by and they were coming to get us. We walked into a calm and quiet recovery room. No one was moving around or making a noise and then we see Lynlee. Fresh out of surgery kicking her legs and screaming.. DADA, DADA, MOMMA, MOMMA... Yes, that's our Lynlee. I wouldn't want her any other way..

One of the doctors said today that maybe Lynlee was going to write her own book. I don't think he even know how true that statement is.

Her fever hasn't spiked since the port came out! Thank the Good Lord. We are hoping that was the source of the problem. If it spikes again we have to start back at square one and see what the cause is. She continues to look better this evening. She even asked to go in the hall in her stroller and walked a few steps.

Hopefully things are looking up for us again.

Please keep us in your thoughts and prayers!

Love to all.

Monday, January 2, 2012

It's been a huge emotional roller coaster all day. We were woke in the middle of the night AGAIN. Lynlee had spiked another high fever. Her heartbeat was high, and her blood pressure was low. They were afraid she was septic. They were thinking about sending us to PICU. They monitored her closely for the few hours we had left in the night.

The fellow was in early. They gave her a couple bolus of saline to help with the dehydration that the fever had probably caused. Lynlee looked bad, She looked sick, very sick, and tired. We had an ECHO to check her port on the heart. We had a ultra sound also to make sure the infection hasn't hurt anything with the liver. Everything came back great!

She slept most of the afternoon.. And she literally woke up a whole new person. She hasn't looked this good in days. She hasn't had a fever since 4pm and her rash is almost gone today. I'm hoping the new antibiotics are starting to kick in.

We are still getting the port removed tomorrow. It's the source of the infection and it isn't clearing yet. Her blood stream is clear so they will be able to put a PICC line in.

This afternoon I posted on FB what was going on and asked for prayers. I put Lynlee's prayer shaw on her that the church have gave us. I truly give this all the credit with help with the medicine.

I'm feeling much more calm and relaxed too. Thank you for those that also prayed for Ryan and I.

I'm expecting tomorrow to be another long day with the port coming out, but she has been known to surprise us before. I'll keep everyone posted!

Sunday, January 1, 2012

I feel like I've been saying it's a long day for a few days now. But today was another long day following a  very short night.

Lynlee spiked another fever last night and her rash was back around 1am. With the fellow being in and  her drains leaking on her bed we were up until 4am. Ryan switched me places so I slept on the bed in our room and he slept with Lynlee for the remaining 4 hours.

Her fever was on and off most of the day and her rash seemed to be better. This evening she really seemed like she was feeling better.

Her port stopped working today so we had to change out the needle and all of that stuff which consisted of Lynlee being held down and screaming a lot. She had a chest X-ray too. I hate the fact that as soon as a nurse walks into the room she screams. I was hoping it wouldn't be like this.

Right now other than the infection things are good, great even! She's eating some, drinking lots of water, and regaining her strength. The doctor was in today. If her infection isn't better by Tuesday the port will come out. Depending on if the infection has spread to her blood stream will decide what the next step is. If it is in the blood stream we will have to wait to get a Picc line in. If it's not they will put the Picc line when the port comes out.

We will know more tomorrow. They are watching the blood cultures now to see if it grows. We will know the result of that tomorrow.

I'm mentally torn on what I want the outcome to be. I know that the port is a huge infection risk and we will have to access it lots in the following months so the Picc line might be better. However, I hate to see her go through something else when she's been through so much already.

So I'm asking for prayers tonight. One for us all to get some rest and regain our strength. And two for the fevers and the rash to go away, and third for the right decision be made about the port/Picc.  I know that God has taken care of us this long and that to some people it's not that bad. It's just frustrating.