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Sunday Update: 06/11/06

Well, we made it home safe and sound yesterday. The embolization was a success! The doctor explained that they were very conservative when they went in, because of the delicate area of the brain where the AVF is located. But, they were able to successfully embolize the ‘main feeders’ to the AVF. (The bigger veins.) He said there are 2 or 3 tiny veins remaining, but they are too small for them to treat at this time. He said that in his experience, many times these veins block themselves off over time and he is cautiously optimistic that this will happen in Matt’s case. Already, they could see that the blood going through these tiny veins was much slower than before. It is also possible that these tiny veins could grow larger. IF that happens, then they will treat them with embolization as well down the road. If they stay the same, they will just continue to follow them to ensure there are no changes. Matt will likely have a few angiograms each year to check things out. We were very pleased with the result…it is good to know that the main veins have been blocked and we will pray that the remaining ones take care of themselves over time!

The experience itself was probably the worst yet for Matt. He had to lay flat on his back for a total of about 34 hours. The first 4 hours, he was under anesthesia, so he doesn’t remember them…but the rest he was awake, aware, and VERY uncomfortable. After the procedure, he was moved to the SICU…where the visiting hours are VERY strict. For the first day they were monitoring his blood pressure very closely. They wanted to be sure it stayed low, to prevent the flow of blood going through the remaining veins in the AVF from going to fast. They restricted our visits to 15 mins, about every 2 hours. Matt was pretty upset about that. He would get worked up every time I came in, knowing that I wouldn’t be able to stay long. Then his blood pressure would go up, and I would try and calm him down…but it was very hard. It was torture for us both. The next day, his blood pressure wasn’t as high of a priority, so they let me stay in the room with him most of the day…which was MUCH better for us both. He was just so uncomfortable, lonely, and bored…it was a pretty negative experience for him. He kept thinking about how he couldn’t be with me hardly at all that day/night…and then leaving again in a few days for Omaha…pretty sucky. They moved him to the floor on Friday afternoon…which was also a negative experience.

We have been out of the ‘inpatient hospital’ experience just long enough to forget how incredibly frustrating and aggravating it can be. Nurses who don’t know what they’re doing…nurses who leave and don’t come back for hours…no one to explain what happens next…another patient in the room with you separated by only a small curtain…with 2 teenage kids and a wife…monitors beeping incessantly…etc, etc. It was just very frustrating for us both…but especially Matt. We were INCREDIBLY happy when we left yesterday morning. We got home here in the early afternoon and just relaxed. Matt took a shower and spent the rest of the afternoon relaxing and snoozing on the couch…just what he needed! My mom fixed us a wonderful steak supper and we all enjoyed a quiet evening at home.

Today we will be visiting with Matt’s family a little bit this afternoon, and then hope to spend the evening relaxing again one last time. I think I have most of the necessities packed up, but will gather all the last minute things today. We are nervous, anxious, and feeling a little sad about tomorrow. I just pray that the facility is as wonderful as it appears to be and the program is as good for Matt as we hope it will be. Please continue to pray for us these next few days of MAJOR transition…

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