Questions answered

Ok, I sent the emai to Dr Dietz on 7/29/08 at 11:37 pm. On July 31st around 8:00 am, I was crying again and asked God to give me some type of sign to tell me what I was supposed to . It couldn't have been about 15 minutes later and I got an email response from Dr Hal Dietz himself! I was in as much shock about that as I was getting told about our test results. I couldn't believe he actually answered me. Basically what he said was that Loeys-Dietz is a lot like Marfan's in that it is not just one mutation that causes the syndrome, there are many mutations that cause it. In Marfan's they have found about 50+ so far. Since there are only 186 people (including Kai, Linnea, and me) in the world w/ Loeys-Dietz, this is the first time they have seen the mutation that we have. It is not to say that they won't see it in others. Apparently, jellyfish have the same mutation in the same spot too. Anyway, he said he could understand my wanting to wait to 5cm to have the surgery, but he said since this type of surgery is so safe, waiting would not be the choice that he would make for himself if he was in the same situation. I really felt like that was the sign God was giving me. To me, it just really seemed evident. When I got done reading that email and had sat back and thought about it, I decided that I would go ahead and have this done along w/ Kai and just get it out of the way. A peace came over me and it truly felt like a burden had been lifted. Again, I think that was God at work. Oh, and Dr Dietz said he would be interested in studying our family's cells, so I am REALLY excited about that. Even if it takes 10 years to find out anything significant, the kids would really just be starting their adult life. So, everyone pray that Dr Dietz does in fact decide to study our cells and can discover something that will help not only our family, but others who may be afflicted.

After all that, I called Dr Huddleston's office back again. Once again, he was in surgery, but Debbie said she would have him call me when he got out of surgery. So, I was not expecting a phone call until the afternoon. About 11:00, he calls me. I told him I assumed he had spoken to Dr Sharkey about Kai, but he said no, all he had was a message from her, but he hadn't called her back yet. Ok, now, that kind of pissed me off. It had been at least 4 days if not more. Why hadn't he called her back? Does he take this approach w/ all the patients? I just didn't get a good first impression. He certainly was nothing like my surgeon. In fact, I kind of felt like he thought I was a pain in the ass for calling everyday. I know he is busy, but I guess I kind of felt like a 20 minute conversation w/ a confused parent of a child who he will be operating on wouldn't be that big of deal and in fact, would stop the parent from calling if he'd just address the questions. Anyway, I got all my questions answered from him.

I don't have a date yet, hopefully tomorrow or Tuesday I will have a date. But, here's how we see it working. We are going to both get this done close together and get it over with. We would be at St Louis Childrens Hospital on a Monday. Kai would have an echo, chest xray, and blood work, then see Dr Huddleston for our consultation. Tuesday morning, he would have his surgery which would last about 5 hours (possibly a couple more if he is able to fix his breastbone at the same time). He would be in the ICU and that night, he would get his breathing tube out. Sometime on Wednesday, they would try to get him up and out of bed. Thursday, hopefully in the morning, he would move from ICU to a regular room. Then (if timing works out) I would have my pre-op in the afternoon which consists of a heart catheterization and blood work. I think I have to stay still for several hours after that, so I would not be able to see Kai again unless, I could go later in the evening or something. Friday morning, I would have my surgery, again, lasts about 5 hours. I am hoping Kai would be well enough to be able to be wheeled over in a wheel chair to come see me. I would get my breathing tube out that night. Saturday, would get out of bed. Sunday I would move from ICU to a regular room. Kai might be able to go home on Sunday. If not then, then probably at least by Tuesday. I am hoping that when he is discharged, John & his parents will be able to take him back to John's house and take care of him until the next weekend. I would be discharged somewhere between Wednesday and Friday. Sometime that weekend, Bryan would meet John or his parents w/ Kai in Ogden and bring him back home. Bryan will have been off work for 2 weeks by now. So, I am not sure if he will be able to take another week off or not. If not, then my mom said she would stay.

I am supposed to meet w/ Kai's school counselor, school nurse, and PE teacher the week of Aug 11th to talk about adaptations that Kai will need and the homebound teacher coming over.

Kai came home today after being out in Vegas at his grandparent's house. He is now 6'1" !!!! He has grown an inch and a quarter. I couldn't believe it. After we got home and had supper, I told him. He took it pretty well. Cried a little bit, but not nearly as bad as I did, so I was very proud of him. He hasn't had time to think of too many questions yet. I tried to be as explanatory as I could when I told him. So, he did pretty well, I think. He was more upset when he was talking about wanting to be a pilot in the Air Force and me telling him that w/ his heart condition and having had open heart surgery, he would never get into the Air Force. So, I am wondering if he will have more questions. I did tell him that I have a counseling appt set up for him on Tuesday.

So, that's where we are right now. Just waiting on a date. Dr Braverman is supposed to call me tomorrow morning and I can ask some of my remaining questions. When I have anymore news, I will post it. Keep checking back.