Sunday, May 13, 2012
Good News/Bad News
The good news is that Ella had to go in for another iron IV infusion on Friday. Why is this good news? Well, because while we were there we learned that in the 2 weeks she’s had her g-tube she’s gained 2.4 pounds! When she was weighed right before her surgery on April 26th she weighed 12 kilograms, or 26.4 pounds (see, I told you she was tiny for a 4 year old). On Friday she weighed 13.1 kilograms, or 28.8 pounds. We are so excited! We knew she was getting bigger, her clothes were tighter, her arms look chunkier, her face looks chunkier, and even her legs look chunkier. We’ve even had other people comment that she looks bigger. This is terrific news! Hopefully she’ll be 30 pounds by her birthday!
The other great news is that Ella’s iron is up to an 8. I realize this means nothing to most of you. Just know that for the average kid their iron level is around 12. In Feb when we went to Cincinnati Ella’s iron was at a 6.5. Yeah, half of what it should be. We’ve been going to a local blood clinic every 2 weeks since then and she’s been getting an IV iron infusion. Basically, instead of giving her iron supplements, she gets an IV and they put iron directly into her blood stream. Ella calls this her “Happy Juice” because she always feels better after she gets an infusion. Even with the iron infusions the highest we could get her iron level was up to a 7.1, and 2 weeks after that she was back down to a 6.5. It appeared that her body was so starved for iron that the minute she got some in her blood stream, her body immediately sucked it up. Joe and I were beyond frustrated, so when she was going in for surgery we asked the doctors to consider giving her a blood transfusion. I can hear all of the gasps across cyberspace. “Blood Transfusion” sounds much worse than it actually is. No, it’s not ideal. Yes, we wish there was something else we could have done. But the reality was that we had been trying the iron infusions every 2 weeks for 6 weeks and they just weren’t working. We talked to several doctors about this option and felt like this was the right next step. The hope is that with good blood in her that already has a good level of iron, now her body can start from a higher level and work up, instead of starting from the bottom and working up. Her iron is now at an 8, and she got another infusion on Friday, so we’re crossing our fingers for good progress. The other added bonus is that with her new belly button I can now give her iron supplements daily without the fight of her taking them orally (which she flat refused to do, and when I would force them in her she would throw up).
2 little side notes: 1) All morning I prayed that Ella’s iron would be at an 8. No joke, that was my specific prayer. Guess God heard me. 2) As we were leaving the clinic Ella was the last patient for the day, so they gave her all of the balloons that were in the office. We came home with 9 Mylar balloons!
The bad news is that Ella’s skin is really bad right now. I’d say that right now approximately 75-80% of her body is open wound. I honestly can’t remember a time when it has been this bad. It’s heart breaking. We aren’t sure what the reason. We had a wound cultured while we were at the blood clinic, so it could be that infection is the cause of this horrible skin phase. Another possibility is that she’s growing so much so quickly that her skin can’t keep up. She’s also just getting over a cold, so somehow the cold could have caused skin breakdown. Whatever the reason, I’m ready for this to be over. It’s times like these where my inadequacy comes through. I’m at a loss. I’ve tried everything I know to do to heal her body. I went to Whole Foods and spent $9 on a diaper rash cream that someone recommended. I even went and bought some coconut oil and have been rubbing it on her body because someone told me it’s good for skin. Seriously, I have no idea how to help because everything I’ve tried doesn’t work. Please keep Ella in your prayers. Pray for healing for her sweet body and please pray for wisdom for Joe and me to know what to do. We are so encouraged by the progress made with her new belly button and all that it will provide, but right now we need her sweet body to heal.
Well, there you have it. Life comes with its ups and downs. Ella is in good spirits. She continues to help with her new belly button and has adjusted to that beautifully. Physically, she just takes things slow and I keep her on continual Tylenol. She really is Xena.