Today Kaidence celebrated her very first Christmas. I left the tree up for the special occasions but took it down late this afternoon. We did the whole thing starting with her presents and a special Christmas Breakfast. Kaidence of course didn't get to partake of that part of it. kaidence loved being around her family. McCaden and Camden woke up with nasty coughs on Friday morning (great timing) and so we have not been able to let them too close to Kaidence and it has been hard for Camden to understand. We had a reporter call yesterday and ask if they could do a story on Kaidence and our family. A photographer from the Desert News came and took pictures during everything this morning for an article that they will be doing this week. They think it will be in Tuesday's edition under the "Mormon Times". (too bad I was too tired to wake up and do my hair this morning, it will forever haunt me in the article). I am sure he thought that I was crazy because I made him wear a gown and mask. Kaidence has done great. Things are going pretty well. We got lock boxes today for all of her medications because I was worried that the boys would get into them. Her oxygen sats have done great at night. She seems like she needs suctioning less and less. I do her respiratory therapy 3 times a day regardless of whether she needs it, but most of the time she hasn't needed much suctioning. I do however make sure she gets very cleaned out before going to bed. She loves sitting in her Bumbo chair and playing with her toys on the tray. A note to her nurses: she cries every time I leave the room!!! I think that she misses you! OK, maybe I miss everyone too. We love you all and Kaidence wishes you a very Merry Christmas!
Saturday, January 12, 2008
Friday, January 11, 2008
So we are a little slow with the pictures but we will get them. Leaving the PICU yesterday was very hard. I felt like I was moving away from all of my friends. Everyone came to tell Kaidence goodbye yesterday and she of course loved being passed around them and all of the loves and attention that she got. Kaidence's heart surgeon came in and told her goodbye and thanked us for being willing to take a chance with the Berlin Heart. I told him it was easy to do with the peace I felt regarding it. She wore her beautiful Christmas dress home. We placed her little white mask over her nose and mouth and wheeled her out of the PICU in her famous bright green stroller as we waved like we were in a parade. Everyone stood along the bedsides and quietly clapped and cheered for little Kaidence. Before leaving the big gray PICU doors I took an eraser and erased Kaidence's long standing name under bed #12 off of the PICU white board. Very Bitter Sweet. I truly love these people, doctors and nurses for saving my child's life and falling in love with her as they did. I am sure they have worried about her since she has left but many have this blog, so hopefully they will pass on the news that yes we did make it through the first night.
Kaidence loved the car ride home. She came home to hearts and signs all over our front yard. Her brothers couldn't wait to hold her. We let people peek at her through the car window in our driveway. She was so excited to be held by her brothers and see her doggy Kirby. Mike and I spent the night getting organized and using the label maker to label all of her medicine syringes with the name and the dose so that we can reuse them and draw them all up the night before. I typed up some instructions and medicine charts. Kaidence didn't miss a beat when it came to being home. She took a four hour nap (I usually wouldn't let her nap that long but mike and I needed the time). She woke up and played and went to bed and slept the whole night. I had to wake her this morning to do her meds. She has played all day long and loves being home.
Posted by Kaidence's Mommy at 10:20 AM
Thursday, January 10, 2008
We are home. Our whole family together. Kaidence is so excited as are all of us. Things are a little crazy and we will post more and some pictures tonight. Thank You all.
Posted by Kaidence's Mommy at 3:14 PM
Wednesday, January 9, 2008
Mike and I went to the hospital tonight and packed up Kaidence's room. We had A LOT to move as was expected after being there 98 days straight. WOW!!!! kaidence was an amazing BINGO player at the hospital because every week they play and she seems to win. Even when she was in the OR. We came home with many fun toys and blankets thanks to the many that donate and make life more normal for all of the children at the hospital. It has been bitter sweet and we said our goodbyes to many of those that work nights. A few tears but I survived. I hear the same thing from those that come and say goodbye to Kaidence. They all say what a miracle she is and that they were not sure that we would ever get to take her home. We are so very blessed. Kaidence will hopefully be spending her last night tonight and so Mike and I had a farewell meal together at the one and only "Rainbow Cafe"...
We will post more tomorrow. Thanks for all of the love.
Posted by Kaidence's Mommy at 10:01 PM
I am afraid I will jinx myself if I tell you the exact day that she is coming home so here are some round about ways without me saying the day itself. The day that she is scheduled to come home this week starts with a "Th", "It's not today but .........". So hopefully you all figured that out.
The boys are so excited. McCaden acts like we are going to Disneyland, he is being such a great helper. Camden keeps telling me that he is going to kiss and hug her. He says that Kaidence will poke his eyes and giggle and hold his finger. We are very busy getting ready to bring home little Kaidence. I have worked all day long on her room that turned into a storage unit for everything while she was gone. The house is a mess. Home Health came out this morning and delivered pretty much everything. I think that things are set up and we are ready to go. Mike and I are going to the hospital tonight to clean out her room of 97 days. I think we may just need a UHAUL.
Posted by Kaidence's Mommy at 1:48 PM
Monday, January 7, 2008
We are getting ready to bring home our sweet little Kaidence. I have a feeling that it will be very obvious to our neighbors when we will be on our way home. The decorations are just waiting. "Word on the street is" that she may be able to come home the end of this week if there are no more problems and if her rejection drug medication levels in her blood stay stable. They are keeping her in the PICU but want me to room in with her, I guess so I can remember how to be her mom again. No, it is really because I will administer medication 35 times a day. 15 of the medications at 8:00 am, I thought mornings were bad before. I am also learning how to do her respiratory therapy and use the suctioning equipment. She is not to happy that I am doing that to her. It is not too bad, basically like placing a feeding tubE and I like seeing how many boogers I can They will send her home on a feeding tube ( been doing that since July) and oxygen and monitor for night time (shouldn't be too bad, we practiced that when we brought our little McCaden home). I will learn how to bag her (breathe for her) with a bag and mask today. That is just a precaution like learning CPR. We are going to be very busy at home. We will go to Cardiology appointments twice a week. Monday she has a cardiology appt. as well as her swallow study. Kaidence is happy and sleeping very well. I must say that she could probably out snore her dad easily right now.
Posted by Kaidence's Mommy at 3:17 PM