I know that it has been awhile since I last posted however things seem less dramatic now that we are home. Obviously we aren't doing CT's and test and surgeries everyday. However, it doesn't mean that things aren't a little crazy at times. Kaidence is getting better at eating it seems. She really likes the berry banana baby food. We tried a bath in the sink because she still has that line in her chest that can't get wet. She smells much better. I was surprised last night when I bent down to kiss her toes and they smelt like stinky cheese. Pretty bad for a kid that doesn't wear shoes. Obviously, the sponge bathes we have to give her aren't cutting it. No matter how hard we try I don't think it's as good as hosing her down with a good lather. I think that we have more teeth on our way in. One of the medications she takes makes her gums thick and so she will have a harder time teething, but that's ok. Teeth are nothing compared to what she has already done in life. One thing that I am finding with Kaidence is that she is maybe too content? She is ok with laying down on her back and playing all day long. Well, that is what she has done for half of her life. I am really trying to work with her on sitting. She also wants nothing to do with bearing any weight on her legs. We can't work with her too much until her chest has the full 6 weeks for the bone to heal. I am worried about these things and we do have Early Intervention coming out to work with Kaidence and evaluate her on the 4th of February. I feel like I am spread a little thin trying to make sure that the everyday things get done, each kid feels loved and their tummy full and then working with them on all of their little individual needs. However, it is so much better than trying to do it all from a hospital room. Mike is starting school again the first week in February and that will be interesting, but that is life. We are very happy that things are going so well. Kaidence's appt. went well also and we are still playing with her meds because some of the blood levels are not where they should be. Things are looking good with our family and I am looking forward to spring and getting out in my yard again. I think that I will have a lot to do this year, things were rightfully neglected last year. I am excited to go into a time of year with a fresh start, rebirth. I had such a hard time this fall when Kaidence was getting sicker and everywhere I looked around everything was dying for winter. It just felt so hopeless. Thank Heaven for new beginnings!
Saturday, January 26, 2008
Tuesday, January 22, 2008
Posted by Kaidence's Mommy at 5:31 PM
Hey, look at me.. I added this picture all by myself. Mike will be so impressed. Well, Kaidence loves to eat squash but she is pretty strong willed and really thinks that she should just feed herself. This is what happened.........
So today I am actually cooking dinner. Crazy huh? It has been so long since I have felt "normal" that it is a nice change. However, I am sure that next week when I blog I will be feeling differently, because I have to fix dinner. However, I hoping that I will never forget how many nights I sat at the hospital wishing and hoping that I was home doing all of the crazy mommy and wife stuff like folding wash and cooking dinner and cleaning Pepsi up off my wood floors. I would think "those were the days". You get a new perspective on things.
Camden is feeling better and I think that Kaidence is as well. No throwing up today. We are always happy about that. Camden was a little snuggle bug last night and his personality is really starting to show. he is such a cutie pie. I think that Kaidence continues making great progress, we couldn't be happier. McCaden is once again cleaning. In fact I am feeling guilty to be blogging while he is cleaning. He just finished doing the dishes and cleaning out the sink. He cleaned my laundry room the other night and sorted all of my laundry that somehow never seems to be able to make it 3 more steps to the basket. I told him I wrote about him on the blog and that many of you responded saying "I need McCaden to come to my house." So now he said that after he finishes the dishes that he will put together a work schedule for himself so he can clean other peoples houses. You never know I just may need a place to drop him off one day...HA HA.......
Posted by Kaidence's Mommy at 4:44 PM
Monday, January 21, 2008
Ok, I think I have a minute. Kaidence had another Cardiology appt. She had an echo as well that looked "fantastic." Her EF was at 72%. I think they say that a low normal is 55%. We are so thankful for such great numbers after having 3-5% EF. She has a wonderful little heart in her. We are overwhelmingly thankful.
Well, we thought Camden was over it, but he started coughing again and has complained that his chest and throat hurt. He would cough in his sleep and way up crying. He says "my cough hurts." He started throwing up as well this morning and my sweet mother-in-law came and took care of the boys and scrubbed puke out of the carpets and couch. We are so sorry that she had that to deal with. I took Camden to the doctors this afternoon and got him on an antibiotic. If he is not better in 3-4 days we will do a chest x-ray and check for pneumonia. He is not feeling well at all. He slept on my lap during the appt. His doctor made the comment of how unlike him that was. We are just trying to keep everyone separated. Mike's mom took McCaden home with her for the night.
Kaidence' s throwing up has been better today. So far only once. I think it is is due to her cold and thick secretions. Doctors don't seemed to worried so far. She is as happy as can be and loves all of the craziness that happens here.
Posted by Kaidence's Mommy at 3:42 PM
We had out Press Conference today and it seemed to go well.
Channel 5 -10:00 News
Channel 4 -4:00 News (we think)
KSL Radio (Have no idea)
Salt Lake Tribune - Tomorrow.
It will be fun to have all of you get to see Kaidence. I am sorry that her adorable smile had to be covered with a mask, but know that there was a big smile with a wiggly tongue sticking out underneath it all. I will post more about todays appt. later and all of the sick kid fun that we have had today at our house.
Posted by Kaidence's Mommy at 3:17 PM
Sunday, January 20, 2008
Mike took the boys to church this morning and I am home with Kaidence. I was hoping to get in a quick shower but she started throwing up mucous and bile (or nystatin, they are about the same color) this morning. She has a little cold and I started noticing more secretions from her when suctioning around Tues. or Wed. It seems to be a bigger issue in the morning after she has slept all night long on her back. The first thing I do every morning is suction her and try to clean her out really well. I noticed her gagging a lot this morning when giving her a binky or anything else. I am hoping that it is not because she is not swallowing her applesauce and food well. She seems to clear it well and if something goes wrong she coughs it up. Although, if that were the case I think we would have problems much sooner instead of 12 hours later. She seems to tolerate the feeds very well when eating and she usually has her last "meal" around 6 pm we then keep her upright for awhile and she goes to bed around 7 pm for the night. She hasn't had anything this morning to eat. I am holding all of her "big girl feeds" for the day. She seems pretty tired this morning, in fact she is asleep in bed again. We will keep watching her. I am wondering if her cyclosporine levels are off. They had to adjust the dose on Thursday and then with her pulling out the feeding tube yesterday and having to recoat the inside of the tube with more medication, levels could be off a bit. FYI- cyclosporine binds to plastic and is absorbed. Therefore we have to coat the NJ tube with the medication and let it sit for 30 minutes and then rinse it before placing the new one. Otherwise the regular amount that we would normally give her would all be absorbed in the tube and none would be left for her body. Hopefully we have no more vomiting incidents or else you know where we will be going. We love our friends there but only want to visit. I will watch her very carefully and not take any chances. It's not worth it. Tomorrow Kaidence has a cardiology appointment and we will get her levels rechecked. We also apparently have another press conference with the hospital and doctors to tell the second part of Kaidence's story and how the Berlin helped her get healthy enough to be ready for her new heart. I am assuming it will be on the news tomorrow sometime, but I don't know for sure. Gotta go, my battery is low. Thanks for all you do for us and for reading Kaidence's blog so faithfully.
Posted by Kaidence's Mommy at 10:01 AM