Ups & Downs, but more Ups than Downs, I think

Well, the last post was on Wednesday. Thursday was not quite as good, but still not too bad. Friday, I had even less energy than Thursday. I think I only managed to make it down the driveway to the mailbox once on Friday and was completely worn out after that.

Kai had his echo on Thursday. The tech said that the doctors were looking for some fluid build up around the heart as a possible cause of the increased heart rate. She said she didn’t see anything, but we would hear the official word from the doctors. We have not heard from them, but I am assuming no news is good news. His heart rate during the echo was in the 70’s, so really not sure why it was so high on Wednesday. He has been taking his medicine, so perhaps it is just going to take time to let our hearts get back to “normal”.

I am back up to my regular dosage on my Cozaar (Losartin) and Toporol, but my heart rate is still in the 90’s most of the time and my blood pressure is still a little high. I called Dr Braverman’s office (my cardiologist) on Friday to find out when I need to go back to see him and if it was going to be anytime soon, could it be Oct 16th since we are going to be down there to see Dr Moon anyway. I had to leave a message and they said they would get back to me. I also called Dr Huddleston’s office (Kai’s surgeon) and they said he did not need to see Kai again. Kai’s follow ups would be w/ his Cardiologist (Dr Sharkey) and if she had any concerns, she would discuss w/ Huddleston. So, I called Sharkey’s office. She was out, but Barb from there said she would talk to her on Monday and call me back to let me know when Kai needs to see her. The message I left them was also to try to make it for Oct 16th so we would not have to make more trips.

I ended up going to a strict every 4 hour schedule for Ibuprofen & Tylenol, day and night and it seems to have kept my pain under control. And now that I am back on my Skelaxin during the day (muscle relaxer, non-drowsy) and Zanaflex (another muscle relaxer that helps me sleep) at night, I haven’t had too much problems w/ muscle spasms. It’s nice to be back on MY schedule. I think getting all those nasty hospital drugs out of my system and back on what works for me has made all the difference in the world. I certainly am sleeping better; despite having to wake up every 2 hours or so to take meds in the middle of the night. Bryan has been setting a timer and I have my meds already dosed out and in little medicine cups stacked inside of each other. So, when the timer goes off, I just reach over and grab the cups and tip it up, whatever is I the top one, I get and then put that cup on the bottom and wait for the next ding of the timer.

Friday, the visiting nurse came again and said I was still doing fine and inscission and stitches are still ok. I am supposed to get my 2 stitches out (where my drain tubes were) on Monday. I told her to ask whoever that nurse will be to make the appointment for no earlier than 10am as the mornings are the hardest for me. I still wake up stiff and feel a bit heavy in the lungs, but it is getting easier every day. I asked her if she knew of any place that would loan out wheelchairs. She said to try Life CIL. I found it in the phonebook as Life Center for Independent Living and called them. They were so nice. Bryan went to pick up a wheelchair (actually a companion chair, no big wheels in the back, someone has to push you, which is ok because I don’t have the strength to push myself anyway). He came back w/ that and a shower chair w/ a back, so I don’t have to stand up if I don’t want to. It is more relaxing sitting down and I don’t have to worry about falling when I bend over. They loan out equipment for 3 months at a time, so I don’t have to worry about getting it back anytime soon. That is a big relief. At least now, I can go out and not worry about wearing myself out.

Saturday, we took the kids to the old airport and Prairie Aviation Museum for “A Day at the Airport”. We had a blast. We got there at 8:30 for a pancake and sausage breakfast and then we headed over to the old airport to the EAA hanger. They were giving free airplane rides to kids. Linnea has never ridden on an airplane and we missed this opportunity back in the spring, we got there too late that day. I wasn’t about to miss it this time. I wanted her to get to take a ride in a plane. We got there (had to fib about her age, needed to be 8 to go, but she looks like she is about 11 or 12 anyway), got her signed up and waited for her turn. We got to see several Star Wars characters there. It was kind of funny, one of the Storm Troopers (I think that is what he was anyway, dressed in white, not black) was carrying his weapon and Kai said it looked like a leaf blower. I was cracking up. Linnea got to ride in a Beech Sierra N9193S. It was a little bitty 4 person plane. She sat right behind the pilot and she had a headset and everything. He took them from the airport to Lake Bloomington & Evergreen, not sure where else, then back. They were gone about 25 minutes or so. Linnea said it was the “most awesome thing” she had ever done. She said when he was making a sharp turn, she got a little woozy, but was ok otherwise. After her plane ride, we went back to the Prairie Aviation Museum and went thru there. That was pretty cool, then we went outside and got to see the planes and helicopters that they have there. They had the cockpits open so we got to get up in them. We got a few photos, so I will try to get those posted as well. Kai did pretty well w/ the exception of his right leg just under his butt. It starts hurting him after he has been standing or walking. It was hurting him. We had mentioned it to his pediatrician when we were there on Wednesday, but got sidetracked, so I need to call her back and see if we can get some new spinal x-rays to see if there is a pinched nerve and he needs to have new x-rays anyway to see if his scoliosis has progressed from April. Anyway, when we were done at the Museum, we went back over to the Image Air hanger and was on our way out to the C130 transporter that they had brought in, but it started to rain and they shut it up and fired up the engines and it was getting ready to take off, so we didn’t make it in time to see that. We didn’t get to see the FA-18 either, but maybe next year. The storm blew in pretty quick and before you knew it, it was pouring and lightning and they were still giving helicoptor rides. Glad I had not signed up for that. I really wanted to, but didn’t figure it would be such a good idea only 11 days after surgery. After I saw the lightning, I knew I had made the right decision. The tent they had set up for people to wait under for the helicopter rides blew over the airport fence w/ the high winds. We got to see the C130 take off. As big as that thing is, it took off so gracefully. Amazing! I was able to talk to an officer in the Civil Air Patrol about Kai joining. It sounds like a great opportunity for him and I think it is the closest thing he will get to being in the military (which he really wants to be a pilot in the Air Force). He was also able to talk to a couple of the cadets in Civil Air Patrol about their experience. I doubt that w/ his medical condition, he will ever be able to qualify for a pilot’s license, so I also talked to someone at EAA about the Young Eagles program which introduces kids to flying and pilots donate their time, planes, and fuel to take kids out on flights and teach them some things. It is not flight lessons, but at least gives them the opportunity to experience flying in a close personal situation w/ a licensed pilot. I think he is very excited about both.

Anyway, we had a blast and didn’t get home until about 1:30 or so. It was a long day, but not too tiring surprisingly. Bryan then took Kai to Meijer so he could get the book he has been waiting to come out for the last several months, Brisingr by Christopher Paolini. It is like 750+ pages and he has already read almost 300 pages. Then we watched some movies: Speed Racer & The Bucket List. It was a good day! We didn’t get to bed until about 11:30 which is the latest we have stayed up since we got home. We set the timer again and I took my meds during the night and we didn’t get out of bed until like 10:00 this morning. Needless to say, I was stiff and still heavy in the chest breathing, but got in the shower right away and that hot water makes it all better.

I walked down to the corner w/ Spike, crossed the street and came back home today, then did it again later in the day. Since it is getting easier, I am going to try to increase my distance every day. I’ve got to start burning some calories. Phillip brought over ribs, homemade BBQ sauce, hamburgers, hot dogs, homemade mac & cheese, and homemade coleslaw. OMG! Fabulous! Bryan says he’s ready for Phil’s Grill anytime. We were all in heaven. There was enough there, for lunch and supper the rest of the week. Then today, Stacey brought over a roast, potatoes, rolls, and brownies for dessert. Again, fabulous. Now do you understand why I have to start walking regularly? I had actually lost some weight and was lighter than what I was when I had my surgery, but I have a feeling that won’t last long.

Tomorrow, Bryan is take Spike to the vet for the rest of his shots and I am going to have them trim his toenails as I just don’t have the strength to do it this time. Tuesday @ 2pm, I have a follow up w/ my Primary Care Physician. The visiting nurse said I needed to have a follow up appt w/ her since I don’t go back to see my Surgeon until Oct 16th. Bryan’s birthday is Thursday and mine is next Sunday, so sometime before Thursday, I need to get to Walmart to get Bryan’s present. I already know what I am going to get him, but of course, I will not disclose it on here since he will probably read it. Ha! Ha! Bryan, you will just have to wait! My friends from work may come over one day this week and have lunch w/ me one day, so I am excited. I have extended my meds to every 5 or 6 hours now, so things are looking up.

I have to keep telling myself that even though there are some not-so-good days, there seems to be more good than not-so-good days. I still cry at the drop of a hat when I think about how lucky we are to be alive. It’s one thing to survive as long as I have w/ Loeys-Deitz and a dilated aorta as big as mine was and Kai to have one as big as his, but to have survived these surgeries. It is still very overwhelming. I feel like God has a reason for giving us this disease and allowing us to live thru it, but for the life of me, I don’t know what that reason is. Maybe one day, God will reveal that to me. I only hope I can fulfill that.

Well, keep the prayers coming, please. We are still in need of them.

Thanks, and have a GREAT day!

Later!