So much has happened in the last few weeks. We had our semi-annual Meeting of the Three Families and it was wonderful. We had lots of fun and got a much better group picture. It was so good for Aerin to be around other children (and adults, too). Since then, she has been babbling constantly, which is excellent. She was very good about sharing her toys and her space, but the noise level was challenging for her.
The really big news is that Aerin's surgery is scheduled for October 19th. Dr. Haynes (along with his team) will be operating at the Medical College of Virginia. Together with Dr. Haynes, we have decided not to use interventional radiology, which would have involved the hemangioma being embolized. We all felt that the risks (infection, stroke, allergic reaction, more time under anesthesia and in the PICU) in a child as small as Aerin outweighed the benefits. Also, Dr. Haynes has a number of options to control the bleeding. He may be able to place a tourniquet around Aerin's shoulder, which would allow him to safely cut the feeder vessels under the hemangioma. He also may be able to do a "mini-embolization" if he is able to go under the hemangioma. He will be removing the entire hemangioma, regardless of whether it causes any level of deformity in Aerin's shoulder and arm. There is always the possibility of recurrence with hemangiomas and none of us wants to take any chances. Dr. Pozez will be closing, even if Aerin doesn't need a graft. She will make the shoulder and arm look as normal as possible. Aerin will be given prophylactic antibiotics before the surgery to prevent infection. She will also need to have a central line until she goes home. This is because she will need to have multiple blood tests and medications administered and a central line will be better than having her stuck constantly.
The reason we don't have a specific plan for the surgery is that Dr. Haynes won't know exactly what he's dealing with until he opens Aerin up. The MRA couldn't give all the information that was needed, so the surgery will be somewhat exploratory at first. Aerin will be transferred to the PICU (Pediatric Intensive Care Unit) after the surgery.
We don't know how long Aerin will be in the hospital. I will be staying with her the entire time she's there. They have fold-out chairs for parents to sleep in. Aerin's pre-op appointment is the week before surgery, on October 12th. We'll have our anesthesiology consult then, as well.
There is a strong possibility that Aeirn will need one or more blood transfusions during her surgery. Andrew will be tested in the next couple of weeks to see if he can do a directed donation (he and Aerin are both A+, I'm B-). Though they are the same blood type, Aerin has antibodies in her blood because I got so much Rhogam when I was pregnant with her. I'm not worried about this - they'll find a donor if Andrew isn't a good match. All of the blood from Aerin's 6 NICU transfusions came from the Virginia Blood Services and that's who we're using this time.
We've had many people offer to donate blood to Aerin. We can't thank y'all enough, but it has to be Andrew or an anonymous donor. VBS can't accept donations that aren't local and all directed donations require a doctor's prescription. If anyone would like to donate blood in honor of Aerin, that would mean so much to us.
We've had so many kind offers of help. We've pretty much got everything covered, but if folks would like to send good luck or get well cards to Aerin, that would be lovely. I plan to "decorate" her room at MCV the way I did at Henrico Doctors' and St. Mary's and I'm sure she'd like to see pretty cards. Please email me for our address.