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!
Saturday, December 31, 2011
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 :)
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.
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 :)
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.
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!
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
12/28/2011
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..
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.
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!
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!
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