Well, we will be staying away from everybody. Apparently the cold that McCaden has we just found out is influenza-A. Camden is getting sick and Mike and I are getting sick as well. We put Kaidence on some medication to hopefully prevent her from getting it too bad. And, yes we ALL got a flu shot this year.
Wednesday, February 6, 2008
Yesterday was about like the day before. CRAZY!!! However, today was better. I think that after two days of constant worry and phone calls trying to figure out Kaidence's medications that it is all worked out the best it can be. I also gave up hope for Medicade. We would be severly penalized if we were to take out our retirement. Not smart for our situation. Mike works hard for our family and our future. It would be nuts for us to give up that security for the next 20 years. We will just hope and pray that whatever SSI gives us is enough to lift the burden of part of the medication co-pay each month. I know that somehow it will all work out.
Kaidence got caught up on most of her immunizations and she also had her synergyst shot today (protects against RSV). She can never have any live vaccinations like the chicken pox with her immune system. Her pediatric office and doctor at have been awesome to come to the house to do her check-ups and shots. This will help out a lot when it comes to keeping Kaidence healthy. We are so grateful for them and we feel very blessed to have a wonderful doctor that we can trust to care for our children. She after all was the one that found Kaidence's heart condition in the first place. We are having McCaden tested for influenze. Kaidence's eating has greatly improved this last week. She is know have small bolus feeds to her stomach as well as taking food by mouth. I thickened her formula today and put it in a bottle with a hole cut out of the nipple. She is still leaning how to suck but I think she is starting to get the hang of it. She took 2 oz of formula. It took a little while for the first ounce but the second went fast. She loves her bottle now and I think she may remember it a little. Early Intervention came out today and evaluated her. She varies anywhere between the levels of a 4 month old and a 9 month old. Makes sense though when thinking of how long she was sick. We would have been so much further behind if she couldn't get the "Berlin Heart" that is if she even survived the wait. She is currently jumping in her Jumperoo. The boys are runny around screaming and I am trying to keep my sanity and ignore the terrible sore throat that I have started to get. Waiting for daddy to come home. All of you mom's know what I am talking about.
Posted by Kaidence's Mommy at 5:05 PM
Monday, February 4, 2008
Disclaimer: My spell check is not working so beware of typos, but no need to make mention!
Well, we just got home from the hospital. We have been their since 8:45 am. I am exhausted, starting to feel a little sick and super grumpy. I don't want to say that today was a horrible day because horrible days are the days that one gets terrible news about a loved one. I have a new perspective on things and I do try to remember that. However, I can use the word "frusterating." It started off by IV team never coming to draw Kaidence's labs after 5 vocera pages and an overhead page. Her blood draws are timed and so when they still hadn't come by 11:00 and I was already 3 hours late for her cyclosporin dose we gave up. No lab test results today. Then when I called to find out where our mail order medications were that Kaidence is out of, I was told they weren't shipping them until friday. So I had to get 10 day supplies and pay another darn co-pay because someone else messed up. They also told me my co-pay for Prevacid was $3,000.00. Obviously, not right. Then I got a phone call from Mike telling me that Medicade called and that we have been denied because we have too many assets. They want Mike and I to take out all of our retirement. We don't have that much to begin with. We can only have $3,000.00 to our name in combined retirment and bank accounts. Here is what is crazy, they don't care how it is spent they just don't want us to have it. So they would rather have us with no savings for the future. We need a retirement because I don't trust our government to take care of me when I am older. How can that happen when they tell us all to quit our jobs? No employment, no taxes, no money.It would be so much easier to just have Mike quit his job, but that's not happening from us.
I am trying to keep things in perspective today because Kaidnece's surgery went well. She did great. We are slowly coming off some of her medications and possibly her oxygen in about 2 weeks. We are also pulling up her feeding tube to her tummy tomorrow if she is feeling well. Everybody was so excited to see Kaidence at the hospital. I must say that it was nice to only have a 30 minute wait in the OR waiting room instead of a days wait of long tense hours. We are so grateful for the many ways that we have been blessed and all of the other mumbo jumbo is just me letting off some steam, so sorry. We know that life could be some much worse and that this is nothing compared to what could be. I can't let myself lose sight of that. We have our miracle, how could I ever have the right complain after that?
Posted by Kaidence's Mommy at 5:40 PM
Sunday, February 3, 2008
Today I took Camden to church and Mike, McCaden and Kaidence stayed home. McCaden is sick. The doctor said that he may have the para-influenza virus, but they are not sure. He has had a terrible sore throat, body aches, headache, sick tummy (no throwing up), cough, runny nose, runny eyes, fatigue (if you can believe that) and a fever. It has been wierd because the fever comes and goes. It makes him feel terrible and very sleepy when it gets high, but then I can give him Tylenol and once his fever drops he is playing again. No pattern to it, but very sudden changes in behavior and pain. It was nice to get out today and go to church. I have not been out and about much. It was also nice to fast this Sunday for someone other than my daughter. Fasting is so very important. I think that we often underestimate the power of it and therefore undermine the importance of it.
Tomorrow we have a big day ahead of us. Kaidence has Cardiology at 8:45 with an echo. We then check-in for surgery at 12:30 and she has the OR scheduled for her at 2:30. I guess alot of waiting. Kaidence is getting her line removed. This is the line in her chest that they used to deliver medication and draw blood from. So after this is removed Kaidence will have blood draws 2 times a week and get poked for it. I hope that they can find a vein that is useable. I am nervous for tomorrow. Kinda funny since she has had two major open heart surgeries and numerous little surgeries. She has had this procedure done many times before, but she was in the PICU then and they were in charge of giving all of the medical history, not me. I hope I get it all correct. I might just send them to the PICU to get their questions answered.
Kaidence is eating her squash very well. She ate all 3 meals today with us. Last night she ate over a 1/2 container of squash (huge deal for us) and no throwing up. She seems like she is getting exctited to eat. Still nothing sweet, she only likes the bland foods. We will pull up her feeding tube to her tummy tomorrow or the next day. She loves to chew on everything and anything. We have a happy little family and I love having us all together no matter what we are doing!
Posted by Kaidence's Mommy at 7:43 PM