Monday, January 14, 2013

                                          Amber aka Darth Baby hanging out yesterday
"We have this hope as an anchor for the soul., firm and secure. It enters the inner sanctuary behind the curtain," Hebrews 6:1

Sleeping peacefully
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Having lunch today!
"As for me, I will always have hope; I will praise you more and more." Psalm 71:14

Today has been much better for Amber! We are so proud of her will to fight and her strength! 
Yesterday Amber tolerated the cpap mask all day and she slept beautifully all night. She probably got the best and biggest amount of sleep she has had in months, it was wonderful to see.
Today we decided to see how she would tolerate her cannula again.
I have to say I was not optimistic, I didn't want to rush things but Luke was adamant and we tried it.
She has done amazingly well! They have her on about 3.5 liters so a little more than at home but she has had so much energy and has been laughing all day! 
Amber's electrolytes were finally on the lower end of normal after yesterday's blood test. They decided to give her a day off of labs and check it in a day or so just to make sure they are staying up. We aren't sure what they are doing with her morphine, she's still on a lower dose. We are going to put her on the cpap again tonight and tomorrow night just to give her some extra support. The plan is to try the cannula on Wednesday night and giver her the cpap if she needs it. The pressure in the cpap really helps her open up the air sacs in her lungs. My feeling is, it helps give her the oomph she needs to keep going for the day. It also takes a lot of stress off of her heart. Which is why I'm so apprehensive about moving her off of it completely. 
Our goal is to get home by the end of the week or early next week. We are really focusing Amber regaining some strength, making sure everything is set and we are comfortable with how she is and caring for her. 
It's crazy to think that we will be bringing her home more fragile than she was before. 
We are taking one day at a time and thanking God for each new day!

"Just when the caterpillar thought the world was over, it became a butterfly" ~ Proverb

Saturday, January 12, 2013


Tonight feels like one of those nights where I'm just not going to sleep. Not that it's a bad night for Amber or Charlie or that Luke is snoring because all of those things are not happening...and no pigs are not flying I checked! Well I can't quite say that two of those are not happening because my men are not with me tonight. Amber and I have enjoyed a girls night we snuggled, watched some happy parts of Fox and the Hound (or big red kitty and the cute little puppy to Amber) and she drank a few ounces by mouth. We are trying out the "just the nose" cpap tonight. So far she's been fine with it! She can't quite get her binky all the way in her mouth so she's not too happy about that but she seems to be over it now. Now we're praying she will tolerate it during the day. Right now we are looking at cpap 24/7 because her lungs and heart are so weak but praying she can go back to regular O2 during the day. It's going to be hard, she looks very different with it on but we have adjusted our "normal" before!
I feel like a more light heart-ed post is due, so without further ado here it is!

Things are very different living in a hospital
 Miss Amber is missing in her words "baby brother", "Arlie", "Goober". 
She will ask for him and shake her head "yes" that she misses him
Although sometimes she shakes her head no!

Friday they were the sweetest pair together. 
Cuddling, holding hands and snuggling.
They just melt your heart together!
I think they are both looking forward to being together again.
Charlie is already saying something that sounds very close to Amber!

 They miss coordinating outfits

And snuggling before bedtime

Laughing at everything together

Making  silly faces 

Going on adventures

"Sharing" toys

Getting ready for bed together

Doing "whatever this is" all the time

And of course snuggling more

They have been buddies from the very beginning

Charlie was not the first buddy though. Someone else has been there right from the start.
Getting in on snuggles and naps

Learning how to feed the new baby

 Our dear cat Boo has always been one of the gang!
This picture is actually one of Amber's choice pictures we use for communication

She is a magical old kitty

 She might not be the prettiest cat

 But she's always there

She puts up with so much


So much

You can usually catch her in the background of a picture

Always near

Ready for playtime

Or snuggles

 She will always be one of the gang

The three of them
Amber, Boo and Charlie too

Out Of The Woods And Into Another

We've been on quite the roller coaster these last few days. Things have been so touch and go with information and Amber's condition. It's been hard to really say how everything is going.]=

 She has had a chest x-ray, echo and lots and lots of blood work. They've added new medications and changed around old. She's been on a cpap machine and we've been playing around with that a lot.
 We've looked at all the information and quite frankly there has been a lot of this:

 And yes a lot of this too:
 Right now I think all of us are like this:

 Its a little frustrating because all we can do is this...but this is wonderful:

 We aren't quite here yet

 But we're hanging in there
 And putting on a brave face:

 Amber has done amazing things before

I will stop being so vague and try to let you know what's going on but to be honest things have been so up and down and all around lately that I've woken up this morning not even sure what is what. 
First of all, all the testing/labs done on Amber for influenza a/b (c?), RSV and any other common illnesses came back negative....except she has MRSA on her skin but not a MRSA infection. This is good because it rules out most everything but unfortunately if she had tested positive for one of these at least it would give us a better explanation and give us something to really treat. 
Amber's last chest x-ray in December right before Christmas and it was a "perfect for Amber" chest x-ray. Her chest x-ray on Thursday morning showed what they call a "white out" . When you x-ray lungs they should look nice and black or at least in my kids cases black or slightly charcoal maybe splotchy gray spots at the worst. Amber's was completely white with a small oval of black-ish in the top right lobe of her lungs and a teeny tiny charcoal spot in her mid to lower left lobe. The black is where her lungs are still really working and the white is fluid. The fluid is not in her lungs so it's not a pneumonia issue, the fluid is on her lungs meaning it's coming from her heart. Unfortunately her echo was not completely helpful. It really was not that much different from her last echo is September. There has been no significant amount of change. Her mitral valve leak is as bad as it can be so we weren't expecting a change there. Her aortic leak I guess is not much different either, this one could have changed because it's not at maximum severity yet. In September her heart was beating on a lower end of normal and there has always been deterioration of her heart, I guess this also has not changed much. Basically she is in heart failure but not rapid heart failure. No one can really figure out why her heart suddenly put out so much fluid since there really hasn't been much change in function, of course her Oct-Dec sickness had a huge impact on it but such a rapid change is baffling. The hard part is, she is currently maxed out on what we can give her for diuretics. We have seen a slight improvement in her comfort to the point where we have started to decrease her morphine in hopes that we can get her moving and move out some more of the fluid. Her cpap is definitely helping take some stress off of her heart and her lungs. We are going to try and move her to an over the nose mask so that eventually she will be able to come home. 

I guess our game plan is lower morphine as low as she'll go and see how she tolerates it. Try and move out as much fluid as we can. Get her on a C-pap that we could do at home that she will tolerate, Amber hates anything but a canula on her face. Make sure her electrolytes are staying balanced with all the diuretics she's on so they can continue to effectively work. Then get her to a point where she can come home, we can handle her increase of care and she is comfortable. We are really in a hateful place of a long slow process. Our short term goal of home is a wonderful idea but we have the knowledge that another sickness we will be right back here and it's only a matter of time and how many more sicknesses or slight changes she can handle. We are trying to be optimistic Amber is an amazing child with such a strong will to live and fight in her that really anything is possible. Even today with the slight changes that we've made in morphine she is really perking up and trying so hard to be her normal self. This has to be one of the worst parts of a progressive disorder, to suddenly see such a progression and no that it will only get worse from here.

"Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:30-31

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philipians 4:6

I'm sure you all did this to see an update:

We appreciate so much all of your comments, support and love

Please Please Please include this sweet I-cell family in your prayers as well they are also in a very rough spot with their little girl Gabby. We are sending our prayers and love to them as well!