~received Nov. 2000~ The link was broken and I couldn't find the new link. :(
Well, after the excitement of June, we thought we had this thing licked now! LOL We were to keep these *balloons* in until Oct. (just a year after we found out about this whole thing), and things were going along smoothly. Now mind you, I was due to give birth to our youngest (and last) baby Nov. 12th, so we were cutting things a little close, but hey, this too shall pass, right?
So into July we went. Everything was going smooth. We filled the *balloons* each week just as we were supposed to and Caleb's skin was expanding nicely. Dr. B. was very pleased when we saw him at the appt. Said that we were doing a great job (we had been filling these expanders since March on our own with the Dr's permission & approval, we went in every month (or sooner if we had any concerns) just to check on things. But this was still easier for us to do so that we didn't have to drive into the city every week (which was a great distance for us)). Dr. B. also asked Caleb about our exciting day in June (when he hit his ear) and Caleb went into great detail. He thought it was pretty cool (after the fact LOL).
Well, a couple of weeks after that appointment Caleb got sick. REAL SICK! He was listless and I KNEW that something wasn't right. He cried that his head hurt where his *balloon* was. So we called Julie and she told us to take him to the Pediatrician's office since that was closer for us. So we RUSHED over there and the Ped. saw him and said that Caleb had Strep throat and gave us some antibiotics. The next day, Caleb was worse, not better (the area around the *balloon* was now pink where it had been normal colored the day before). So we called Julie again, told her what was going on and she told us to come to the city to the Children's Hospital, that the Dr would meet us there and check things out. So my mom came up to take care of Rhane & Rachel, and we rushed to the city and to the hospital (I packed our stuff while we waited on my mom to get there).
I told Ross, 'This is it, Caleb won't come home with his ear.'. Ross wasn't convinced, but I was. And I was right. On July 12th we went to the hospital, and they admitted Caleb into the hospital and put him on an IV antibiotic for 3 days. Turns out the 'strep throat' was some sort of an infection where the *balloon* was. Which is actually rather common, and we knew that there was a chance of this going into this whole thing. On July 15th, they did another arteriogram (this was Caleb's 3rd one by this time, still stressful, but not *quite* as bad as the first). With this arteriogram, they embolised his ear (in other words, they shut the blood flow to that ear; the ear was now dying). We had to do this though so that when they did the surgery that Caleb wouldn't bleed to death. And on July 17th, 2001; just 9 months after all of this started, Caleb had his surgery and his ear (and all of the AVM on his scalp) was removed. It took less than 2 hours in the surgery. Surprisingly, I was very calm. We had the wonderful support of Ross' parents at the hospital with us, Rhane came with them (my mother stayed at home with Rachel which was a HUGE support. We didn't want her having to be cooped up all day and not understand why everyone was concerned). We also had the loving support of our Pastor and his family at the hospital with us.
Dr. B. said that everything went absolutely perfect and that everything was ok! Caleb was in recovery and to give them about 30 minutes and then I could go to recovery and be with him until he woke up. I was standing there at Recovery 29 minutes later and at 30 minutes (to the second) I went in, and there wasn't a thing they could do to stop me! LOL I got to Caleb and surprisingly, I was perfectly fine. I was so calm, and I do thank God for that! It was a calm that I hadn't felt for most of the previous 9 months. But it was there then, and it was very nice. They had shaved Caleb's head, and while I was in Recovery with Caleb, Ross & his dad shaved Rhane's head (at Rhane's request) as well. So I had 2 baldies for a while! LOL It was so cute!!!!! We stayed at the hospital for another 2 days and then we got to come home...
***Disclaimer*** This is not a medical site, and we are not trying to help diagnose anyone else's medical inquiries. This is strictly *our own story*. Our purpose in sharing this story is so that others might understand what happened to us. If you think you, or someone you love, might have an AVM or any other medical problem that we have listed here, please, see a physician!!! AVMs are nothing to play around with!!!!!