Monday, June 25, 2007

Surgery Update

Aerin is adjusting very well to the new house. She had some problems getting to bed at first and I had to rock her until she fell asleep for the first few days. We had one very bad night (up until 4:30 am), but we're back to our normal routine now. Aerin is having some separation anxiety, which is probably from the 2 weeks when her grandmothers watched her so that Andrew and I could get the new house ready and pack. She loves her grandmothers, but she was so used to having me around all the time. We've also had a lot of strangers (aka contractors) in the house lately, more than we've probably ever had. Now that she's back to having me all to herself, she's slowly relaxing.

We went to see our surgeon, Dr. Haynes, today. The news wasn't good. Aerin's hemangioma hasn't become any less vascular, despite how much of it has changed to pseudo-fibro-fatty tissue. This indicates that the vessels are abnormal and that the hemangioma will never resolve on its own. It also means a much longer surgery with more time under anesthesia. Dr. Haynes will be tying off the vessels or cauterizing them with a bipolar forceps and he has to go very slowly to prevent hemorrhaging.

Another problem this creates is how to cover the hole that the removal will leave behind. Dr. Haynes isn't sure that it can be grafted. We'll be seeing Dr. Pozez, the plastic surgeon, on July 12th to discuss our options. The greatest danger of graft alternatives is infection. Aerin will receive antibiotics during the surgery, but having such a large open wound for an extended period to time will leave her very susceptible. This might also increase the amount of time she'll have to be in the PICU.

We did get a bit of good news - there's almost no chance that she'll lose the use of her arm. The vessels don't seem to be near those nerves.

Our next step is to get Aerin a MRA so the surgeons can see how deep the hemangioma goes and map its blood supply. Then Dr. Haynes can see if he needs to call in any additional specialists. If so, he'll do that. If not, he will meet with the team (his partner, Dr. Pozez, and the anesthesiologist) to plan the surgery. We also have to arrange for blood for Aerin's transfusions. I can't donate because I'm B- and Aerin is A+. Andrew might be able to, but Aerin has antibodies in her blood from all the Rhogam I got when I was pregnant. If Andrew can't donate, they'll have to find a donor. This entire process will take anywhere from 8 to 12 weeks.

I have to admit that I was secretly hoping that Dr. Haynes would say that Aerin doesn't need surgery. When he said that she "should survive" the surgery, it was devastating to me. He won't give me any numerical odds because he won't know until he opens her up. This is the point where I just have to trust the doctors. All of my research is done and we've made Aerin as physically strong as we possibly could. We just have to pray that the Lord is working through the surgeons and that He will watch over Aerin and keep her safe and with us.


Anne/kq said...

(((hugs))) I wish I could be out there with you for the surgery! (Moreso because Jeff is A+ and I am O+, and both of us are negative for all the things babies can't have.) I am sure Aerin is going to be fine. She is such a strong little girl. And you are a strong Mama. You will get through, and she will be okay. Please, please keep us updated on anything we can do (even if it's going to our local hospital and donating blood here, to maybe free up supplies around the country a bit!) And let us know when the surgery will be; Emma told me that "baby Aerin needs new cwoves and books for she gets out from the docors." So you're just going to have to trust her on that and we will need your new address to send the care package. ;)

gojirama said...

I will keep aerin in my prayers.

goody scrivener said...

You are all in my thoughts as well.

I'm O+, if there's any way I can do a directed donation or whatever, I'll be glad to do so. Not sure what KQ means about being negative for the things babies can't have.

Mama Bear June said...

I will be praying for your little one. It is scary when your child undergoes surgery. It's where our faith is tested most strenuously. (Our son has cystic fibrosis so we've been through lots of medical stuff.)

I'm not sure why you got Rhogam WHILE you were pregnant. I've got A- blood and got those shots only after having my + babies. ????

Mama Bear June said...

Never mind. I went back and read the beginning of the story of your pregnancy and I think I understand the Rhogam thing now. What a road you have traveled!

Anne/kq said...

goody, there are certain antibodies that most people have, that they don't want babies to have.

katharina said...

*hugs* Kira, you and your precious family have my love and prayers. I so wish I could do something to help.