Yes, we did make it home today. I think the doctors are surprised at how well Kaidence is doing. First if all yesterday her daddy and brothers came to see her. I was standing with her outside her room when her brothers and daddy came walking down the hall. She was so excited to see them. Then when went to put her in the car today to go home the craziness came out in her and she was thrilled to be in her car seat. Her little legs were kicking faster than ever and the cute little noises she was trying to make just confirmed to me that yes, despite all that my little Kaidence has been put through she has a very happy, joyful and fulfilled life with her parents and her brothers just like the blessing Elder Zwick gave her back in October said she would. Kaidence is eating very well, in fact better than ever. She has had 24 oz of her Pediasure today so far, some tiny meat pieces and part of a vanilla waffer. Just the Pediasure itself is a record for her and a first. We will likely use her G-tube tonight for only one more feed at about midnight. It is great to be able to give all of her med through it as well so that she can have some positive feeding experiences instead of the negative. It is so hard to get her to take 16 syringes of medication a day. The fast poopies and vomiting have stopped. In fact she has not thrown up for a few days so she is finally over the virus. Her vocabulary now consists of " mommy, daddy, nanna, papa, RyRY (my niece Ryan). We are all happy to be home TOGETHER and I will go back up to the hospital tomorrow night for her sleep study. It is only one night, I can handle that. Thank you for your prayers, phone calls and comments.
Saturday, June 28, 2008
Friday, June 27, 2008
Sorry that I am posting so late tonight. Kaidence has had a great day today and is back to smiling and waving to all. We are planning on going home tomorrow (Saturday). I am so ready. McCaden called me last night sobbing and begging me to come home because he missed me, it breaks my heart. My boys have been through so much. They are such sweet boys and we are so proud of them. She took an 8 oz sippy cup today and she has not taken that amount all at once since she was diagnosed with her cardiomyopathy last year. Speaking of last year, next month on this day it will mark a year since our world was rocked and we begin our Journey of Faith. What a year it has been and how my heart has been touched and how my spirit has been changed.
Also, Our friends that we met this last fall in the PICU very unexpectedly lost their little baby boy yesterday, please remember them in your thoughts and prayers. Life is so very fragile.
Posted by Kaidence's Mommy at 9:58 PM
Thursday, June 26, 2008
Kaidence has a brand new tube. She did very well with the procedure. Her adenoids and tonsils look fine, so we will do a sleep study at another time to check for the apnea. It was great having only a one hour surgery verse 12 hours for a change. She is awake but a little grumpy. Ready for the ironic part? We come back to the room with lunch and she kept crying and reaching for Mikes food while signing EAT!!!!! Well that is how it goes! Thanks for the prayers!
Posted by Kaidence's Mommy at 2:58 PM
So it looks like I will get yet one more post out of my dying laptop. Kaidence had a pretty good night besides IV team coming in (again) in the middle of the night because her IV went bad. Anyhow, she threw up twice last night but the poopies seem to be a little better. She will be going in around 12:30 this afternoon for her G-tube to be placed. Hopefully we can get her to tolerate her feeds within the next couple of days so that we can get out of here. Thank You for all of your thoughts and prayers. We love you all and appreciate how you lift our spirits.
Posted by Kaidence's Mommy at 10:05 AM
Wednesday, June 25, 2008
Kaidence is looking better and better today. I can tell that she is so much happier. We have not vomited since 5 am this morning but still have the "fast poopies". We also had a positive stool culture. Kaidence has Adenovirus. It is common in children but really did a number on Kaidence. We think that the combination of the virus, high medication levels, dehydration and lack of calories all joined forces to make her really sick. We are all happy to have a diagnoses. We are possibly going to do the G-tube tomorrow or Friday. Also they want a sleep study because she snores very bad ( no really, its pretty bad). Other than that we are just giving her time to get better. I am also happy to announce that my tech that had her water break last evening while we were in x-ray had her baby boy early this morning at 5lbs. It seems that he is doing well. Also my lap top hard drive is fried and I may not be able to post as much, so don't be worried. My laptop may have seen it's last post.
Posted by Kaidence's Mommy at 6:38 PM
Tuesday, June 24, 2008
Just a brief update, The doctors have all been busy trying to figure out Kaidence. She is pretty well known around this place so it does make things a little easier because one way or the other people know Kaidence's story. This afternoon I had the boys a the hospital ALL DAY LONGGGGGGG! Our Mazda is broken and of course in the shop so we are down to the one car and Mike had a meeting at work that he did not feel he could miss. So I met all day long with doctors while Kaidence's hospital room looked ( and sounded) like some summer camp day care. Anyhow, we met with the ID (Infectious Disease) doctors, Cardiology (again) the Medical team and then the GI (Gastro Intestinal doctor). We have sent more test to the labs. I am still thinking medication is the major problem complicating things. We have given her bolus IV fluids and they have also started giving her calories into her blood stream. We are running her at a very slow rate with a little pediasure through her NG tube to help a little with the calories. Everyone that knows Kaidence and now sees her cannot believe how tiny she looks. It did not take her long at all to lose the weight and become so malnourished. We are hoping that the fluids will help pull her out of the vicious cycle of vomiting and weight loss. Sometimes when you become too malnourished the nausea increase and just keeps on going. We have pretty much decided that the G-tube will be best for Kaidence at this time. I just can't keep up any longer on the time and stress that it takes to try getting Kaidence to eat. Hopefully they will do that within the next few days or so. The procedure is VERY quick (only takes about 10 minutes) but will need an anaesthesiologist. This trip has been hard for the fact that Kaidence is very aware of who is who and what they will be doing to her and recognizes them by how they are dressed coming into the room. She has cried a lot more this time around. So crazy story. Tonight we took Kaidence down to have a chest x-ray and our cute little tech that went with us ran out of the x-ray room to find a bathroon. Well, her water broke during the x-ray and she is off to have her baby. So Lori, apparently Kaidence has a way with things. Come and visit, you may not need to be induced after all. I hope that all is well with her baby (it is 5 weeks early). I will post again tomorrow sometime. Thanks for all the prayers!!!
Posted by Kaidence's Mommy at 10:40 PM
We have once again been admitted to "our house on the hill". Cardiology admitted Kaidence this afternoon after her Cardiology appt. We are trying to get to the bottom of what is making her so sick. I think it has a lot to do with her medication levels. She is still vomiting and very lethargic. They did an echo, EKG and some blood work. So far nothing with the heart looks suspicious (still keeping our fingers crossed). We will also most likely do her G-tube procedure before leaving (whenever that will be) while we are here already but they have to get her stronger first. We will just wait and see what happens. I had a feeling that we would be here this week. You think I would have showered before coming or at least pack a bag. NOPE, that would jinx me! We will keep you posted.
Posted by Kaidence's Mommy at 1:26 PM
Monday, June 23, 2008
We have had a very busy week. Kaidence has been sick again and has really started to worry Mike and I. She has been throwing up and not eating since last Wednesday. Her Immunosuppression levels are too high as well. She just is not herself at all and seems so sad. The doctors are not sure what is wrong. I called today and asked that her Thursday appt be moved to tomorrow. I am worried about rejection but most likely because I am just a worrier. Anyhow, they have also decided that Kaidence will need to have a g-tube placed because she has continued losing weight ( I think she is down about 3 lbs from her heaviest weight at home). The feeding tube in the nose has started to aggravate her and has kept her eating anything by mouth. She won't even take milk or any liquid. She has had the tube for just about a year and they think that the tube has caused her too many oral aversions (exactly what I have been worried about all along). We will see tomorrow when they will take her in for that procedure. I have told them to do whatever they need to do so that I can have Kaidence healthy and happy again. She looks too skinny. They also cut down the dose of another medication that was just recently added back to her medication schedule. I am hoping that will help. She seems to do better on less immunosuppression. Your prayers would once again be greatly appreciated. I will update tomorrow.
Posted by Kaidence's Mommy at 9:16 PM