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.]=
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!