Monday, March 7, 2011

Long, tiring day...

So this day has not been our best, although it is far from our worst as well. We got off to a bad start with almost zero sleep. Grace had to be NPO (without food or drink) after midnight. This may not have been a problem if my child wasn't addicted to her water cup in the middle of the night. I think she does it in her sleep, but she gets 50 percent of her fluid intake ( a pretty big deal for a transplant kiddo when you always have to be hyper aware of kidney function) in the middle of the night, so we haven't broken the habit. Well, come about midnight she woke up realizing there was no cup. My little rascal stayed awake until 4am!!! Keeping us awake with her. Once again, maybe not the end of the world on a normal night, but our alarm went off at 4:45 so we could all be showered and dressed in time for our 6am appointment. Trying to make the best of it we crawled through our morning and made it to the hospital in time.

Grace was checked in and in very good spirits so we weren't too worried. I was thrilled to see her 100% O2 saturations and decent blood pressure readings up on the screen. Well, it went downhill from there. During her cath the doctor decided to check out the artery in her left groin that has been blown since CVVH (dialysis) right after her transplant 4 years ago. Although the catheter went in (good news) it wasn't quite viable for today's purposes. So, they went in through artery in the right subclavian which we knew had good access. The procedure itself went fine and the anesthesia seemed fine as well, but for some reason (mostly because Grace LOVES a ventilator) Grace experienced some respiratory distress after the cath was over and required some oxygen and support, so we weren't able to see her right away. No biggie, we are used to that, it happens almost every time. Plus, we were happy because the doctor told us her numbers looked great and that he saw nothing that raised in concerns while he was in there.

When we did get to go back to see her she was completely zoned out and sleeping off the anesthesia. Taking advantage of her being still they did the echo (looked great) and wheeled her down for her abdomen ultrasound (kidney, liver, pancreas, spleen, gal bladder and lungs). This took thirty minutes all the while Grace was sleeping. The tech went to show the doctor who said he didn't like the pancreas readings and could Grace drink something in hopes of better pictures (it was about 11am at this point, so almost 12 hours since she had last had anything by mouth). I got up to rustle her awake and get her to sip some juice when I noticed some blood at the top of her waistband. Slightly confused, I pulled down the blanket covering her legs to find her laying in a huge puddle of blood. I'm not going to lie, I was a little freaked out. The tech that walked us down tried to reassure us that it wasn't anything to panic about, but she didn't sound too sure. She had to call our nurse who came down right away and they whisked Grace back upstairs for cleanup. They were holding pressure on the sight and all seemed to be trying to assure us that while this didn't happen often, it was completely "normal." Grace, meanwhile, is aware that something unpleasant is occurring and begins to stir making more blood pour from the site. They determined she was having an arterial bleed, meaning that the site did not clot and the "stopper" they put in didn't hold, so blood was just pouring out. It took three nurses and a tech, but they finally managed to get everything cleaned up and a new pressure bandage in place. So, we had to stay in the hospital for three more hours for "observation." This was just plain miserable.

 Fortunately the bandage has held up, unfortunately Grace is in a great deal of pain. Much, much more than she has been for any of her other procedures. She can only take a few steps and is limping terribly. She is also complaining that her "neck" hurts. She has been so puny and sad this evening and says she is hungary but won't eat. Says she wants to walk and play, but just can't. It is so sad to see her like this for the first time in about two years. I know Grace though, and she will bounce back. I'm hoping as early as tomorrow, but we shall see!

Now, on to the good news. Even though the day was rotten, we learned some great news... Grace's biopsy result is a grade ZERO! Yay!!! Always comforting to hear! Her other tests all came back clear and she is in great health (minus the giant pink elephant in the room)! She even made the chart for both height and weight! We got to meet the new transplant coordinator and also got to visit with some of our most favorite nurses who we love to pieces.

The only thing unsettling, besides the leg issues, it that her chest x-ray showed that a small piece of one of the wires used to hold her sternum together after her transplant has broken and is lodged in a weird place. This is by no means life threatening, but we have already begun to see signs that her body isn't too happy about it. She has been getting a rash right along her scar for a few months and it is never a bad rash, it never seems to bother her and it goes away on its own so we have generally been just keeping an eye on it. Well, now we know the source of the rash and will continue to keep an eye on it. Our plan is to leave things the way they are until it becomes uncomfortable for Grace, and then it will require surgery to remove. It will not be a major open heart operation by any means, but we would like to put it off as long as possible all same. Best case scenario she can handle it for the next year, and when she goes back in for her annual biopsy next year they can remove it in the cath lab at that time.

Thank you for thinking of Grace today. Please say a prayer that her leg heals quickly and she gets back to her energetic self soon! Also, please keep our donor family in your thoughts and prayers as they made our life with Grace possible.


Annual Appointment

I updated our carepage a couple of days ago, but it has really been acting up, so I don't know if anyone even saw, or was able to see what I wrote. I wouldn't mind, normally, but we are in Atlanta about to take Grace into "The Cath Lab" for her annual transplant checkup. She will have to go under general anesthesia because they have to go in through the artery/vein? in her right subclavian. All other points of access are no longer able to support the wires due to various procedures in the past. During this appointment they will be doing a cath to check the pressures inside her heart, take a look at her coronary arteries to check for a specific kind of coronary artery disease linked to transplants and taking a bit of her heart muscle to check for rejection. She is also scheduled for an echo, ekg, lots of lab work (which they can do in the cath lab) and ultrasounds of her abdomen checking her stomach, liver, kidneys, gal bladder and spleen (her medicine can do damage to her organs). We will also follow up with her nutritionist, who should be pleased with how far she has come this year.

Please say a prayer this morning for Grace. Pray that the procedure goes smoothly and that all of the tests show all good things, especially no rejection.

Thank you! I will update when we get out of here!