We are home now.

We are both home now. My mom got Kai Sunday and Bryan & I left the hospital about 3:15 on Monday. We stopped after about 45-50 minutes and got out and walked and I had Bryan massage my back and neck as it was killing me. When we got back in the van, I sat in the 2nd row seats and put the passenger seat all the way down and my legs up on it and a pillow behind my back w/ my neck pillow behind my head. We made it the rest of the way home w/ no more stops. My mom, Linnea, Kai & Spike were anxiously awaiting our arrival. It took Bryan quite a while to carry in all our crap. I rested. Since my back and neck were still killing me, I thought using my TENS unit would help, but it didn’t. I had an emotional breakdown because I couldn’t even do the simplest of things: push the button on the side of my chair to get my leg rest up, reach to put a bottle of lotion away, lay down on the floor. I just feel so helpless. Someone has to do almost everything for me and I just hate that. There are so many things that need to be done and I can’t do them. And, when I am in pain, I can’t function at all. I know I was freaking out Linnea w/ my emotional breakdown. She was very concerned. I felt bad crying in front of her, but I just couldn’t help it. I was in so much pain.

We went to bed around 10pm and didn’t really get to sleep unitl around 1:30 and only slept till 2:30. By 3am, I couldn’t stand it anymore. I had to get up and go to the recliner in the living room. So, Bryan got up and helped me carry all my stuff out there and punch the button on my chair for my leg rest. I think I layed there till about 4:30 then finally got to sleep until about 6:30. So, 3 hours last night.

I had another emotional breakdown after Linnea left for school. Again, I was in so much pain, I just couldn’t do anything. Nothing helped. It took Bryan and my mom a lot of coercing to get me up and around. Once the Ibuprofen and Skelaxin kicked in, I felt much better, but only for about 3 hours.

The visiting nurse came today to see me at about 8:30 and stayed until about 10:30. She is a very nice lady. I told her that the doctors had me on 800mg of Ibuprofen every 8 hours, then switched me to 600mg every 6 hours, but by 3 or 4 hours, I was in pain. She told me this won’t last long so it would be ok to do 600mg every 4 hours. So, I did try that today and it did better on my pain, but has not by any means eliminated it. The left side of my neck has been the worst today. I am hoping that the exhaustion will allow me to sleep well tonight. Bryan helped me w/ my shower today. That was quite a feat. I don’t have a shower seat yet, so I sat in the bottom of the tub w/ the shower going on me and to get me out, he had to lift me by my butt because I can’t push on anything or have my arms pulled on. My scar is looking really good w/ 2 exceptions: the very top of it is swollen (which is normal) and the spot where the drain tubes were are still pretty pink and swollen and tender. The nurse is going to call Dr Moon’s office and find out the exact date they want the stitches removed and if I am supposed to go see my Primary Care Physician for a follow up since I don’t see him until October 16th.

Bryan got the jungle of a yard mowed today. He had to go over the back yard 4 times to get it look ok. He was exhausted when he came in. He also got the grocery shopping done. I tried to take a nap today to no avail. Once again, the pain overcame. At least I got the bills paid and the mail read. My mom left this afternoon.

Kai is doing spectacularly! He is pretty much his old self, but just tires a little easier. He walks Spike around the block once a day and didn’t appear out of breath or tired when he got home. Hell, I walked downstairs and then back up and it took me a half an hour to recover. I keep telling myself that every day will get better and Kai keeps telling me that too. He is going to bed at 8pm every night and sleeping until about 8am, but at least he feels good.

Tomorrow, I have to catch up on my soap (Young & Restless) and should really get my work laptop out and clean up the hundreds of emails on it. Kai also goes to see his Primary Care Physician at 10:00 tomorrow. I am so glad that she is so involved in his care. Her nurse called us at the hospital to see how Kai was doing. She does really care and this will also provide her w/ a learning opportunity that she will probably never have w/ anyone else. I will try to post some more photos and videos of my surgery tomorrow. They are pretty good. The gal doing it was pretty funny and happy to do it. She is an anestheologist intern. (I learned some things from these photos that I didn't know, will share that later)

Oh, I didn’t tell you. The pain doctors came back to see me before I left and we were talking. Apparently, you are not supposed to take Cipro (antibiotic) and Zanaflex (muscle relaxer) together because it bottoms out your blood pressure. Guess what I was taking Friday night when my blood pressure got so low? You guessed it: Cipro & Zanaflex. Now, don’t you think that even if the doctor ok’d the 2 to be taken together that the hospital pharmacy should have called the Dr back to tell him that the 2 can’t be mixed? What other kind of mistakes like that have happened and had more serious concequences? I know when I have a prescription filled and I also have a prescription for something else that should not be mixed, the pharmacist either calls me or the Dr to find out if he should fill the new one or not and confirm whether or not I am still taking the first one. Isn’t that the pharmacists job? I have confidence in Dr Moon and Dr Braverman, but when they pass their duties off to residents & interns, it leaves too much room for error and this is just another example of that. I know the residents and interns have to learn somehow and I don’t mind being their guinea pig; however, I expect the attending physician to overlook everything.

Dr Moon came to see me before we left, but we didn’t get to talk all that long. I did ask him if my aortic root was still at 4.4cm when he operated and he paused and said he could not say for sure because he didn’t have all the reports in front of him but as he recalled he thought it was much bigger than that and that I was lucky I had this operation now. I took that to mean that I had been living on borrowed time. It really made me stop and think. As horrible as this has been, I am so lucky to be alive today. Kai too. Everytime I think about it, I just cry and thank God for allowing me to live to see another day. I told Kai about this and he said he really didn’t want to think about it and that I was overthinking it. I think in the back of his mind he realizes how lucky we are, but it is too scary to really harbor any time over. I plan to order a copy of every single report and note and get copies of my echos, xrays, etc. I am going to go threw them w/ a fine tooth comb and see if I can find any answers in there that may help me in the future or help one of my kids. I asked them before I left if they would give me copies of everything and they told me no, I would have to fill out the release form and request them and wait for them to be mailed to me (and of course pay the exorbanent fee that the company charges to do that). That really ticks me off. So, tomorrow I am going to call my Primary Care Physician and ask her if I order all of this and have it sent to her (they will do it for free then) if she will have it all copied and give to me so I won’t have to pay that fee. Hell, give the records to me and I will make copies and give her them back and it wouldn’t cost them a thing.

I know Barnes is a good hospital, but they could learn a whole lot from Children’s Hospital. I did receive a feedback form and I intend to fill it out completely. I am sure I will have to use extra pages.

Right before we left the hospital, I had 2 ladies from “Healing Touch” or “Healing Hands” come do their therapy on me. It is an energy type of therapy. They feed off of each others energy to extract the “bad” stuff out of me like pain. Bryan thought it was all hoaky, but after their treatment, I was able to breathe deeper and with no pain. Granted, it didn’t last long, but it did work. Perhaps w/ more sessions, it would be more beneficial. I had heard of this thru my Marfan support group and had done a little research on it, but couldn’t really find anyone close and wasn’t sure what the cost was. The ladies at the hospital said it was no charge. I wish I had known about it earlier because I would have had them come see me every day. I do believe in that stuff. I had a massage therapist in Crawfordsville that when she would put her hands about 3 inches above your body, you could feel the energy leaping from them. It was kind of freaky, but she worked magic! I wish I could find her again. Last I heard, she moved back to Arizona to do some more training in that kind of therapy. Where ever she is now is lucky to have her.

Ok, I am tired and Linnea needs to get ready for bed, so I gotta go.

Later!