Sunday, January 31, 2010
Yesterday Kyleigh went down for a nap around 10:30 and as of 2:30 was still asleep. I finally went in her room and started to try and arouse her a little. She didn't want to wake up. In addition, she was blazing hot to the touch. She had a fever of 102.9. I called the number on her discharge paperwork just to find out they were closed. So then I called the other number to talk to the resident on call and they didn't know who to have call me back. I waited and then called our pediatrician's office and had them do a conference call with us at Duke. So glad I did because the nurse at the ped office was able to get a doctor on the phone for me. He didn't like the fever either or that she was taking in so little of fluids. So he conferred with our surgeon and we were told to either go to the local ER or bring her to Duke ER. Since the weather was oh so not nice we decided to go with the local ER at Moses Cone. Kaitlyn went to stay at our neighbor Anna's house while Duane drove us to Moses Cone in his 4WD vehicle. A urine test, x-ray, physical check-up, hours and a $200 co-pay later we are leaving with a Rx for an antibiotic and told to just keep giving her Tylenol with Codeine. Basically, they don't know why she has the fever but they think they should treat her for a possible infection. We returned home by 9pm and her fever was creeping back up. We gave her more Tylenol with Codeine and some jello and put her to bed. This morning she is acting better and playful with a low grade fever. Kaitlyn is also feeling much better.
Friday, January 29, 2010
We came home today at 12:30 - what a blessing!!!! Kyleigh did a great job eating banana and drinking 2 oz this morning for the therapist so we were discharged. On the way home she ate more mashed banana and then took a long nap. Once home she changed clothes due to the drooling that occurs right now. She played happily for a while with mommy and her toys on the floor until it was time for another great nap. She rested well as long as mommy or pawpaw or mawmaw would hold her on their chest, which none of us really minded at all. My parents went to the store for me which was another blessing.
We have been receiving many blessings this week despite the circumstances. We realize that we are surrounded by so much love and friends. We were greeted at the hospital by our children's director, Kathy, yesterday with lunch from Quizno's which we enjoyed later in the day. Then we had several friends from visit us at the hospital by the end of the day as well as phone calls, emails, and texts all through the night letting us know that we were in their thoughts and prayers. Even tonight as we returned home from the hospital there were friends eager to provide dinner that we almost ended up with 3 meals---so awesome to be so loved!
We appreciate all of the support that we have been given and know that we will be glad to return the blessings to all of our friends and family one day.
Kyleigh and Kaitlyn are sleeping soundly in bed and the snow is coming down outside our home. So thankful for the small steps in healing and the peace I feel tonight.
It was a long night of tears and no sleep but we survived it. Kyleigh was not interested in feeding from the cup or syringe. But this morning her feeding therapist (speech) came in and we tried her bottle with the pigeon nipple and mashed banana with a spoon. She did GREAT!!!!! She was so happy and now it looks like we might go home today. We are waiting for the doctor to come in and talk to us about it. Wish us luck!
Thursday, January 28, 2010
It is 11:30 pm and I just finished rocking Kyleigh to sleep as we both shared a good cry fest together. She is just pitiful. They gave her some pain medicine again. Her first IV was blocked and bleeding out so they had to remove it around 9pm and just came in at 11pm to redo the IV with an IV team. She screamed and I cried. It was a sight I am sure. I was able to pick her up once they finished and give her hugs and kisses. She took 2mL of formula before laying her head on my shoulder and falling asleep. I wish I could say they will leave her alone for the night but I am sure they will come in and take her vitals again. Her temperature has returned to a beautiful 98.7 and her oxygen sats are high 90's. I will keep you posted as things continue to change.
Kyleigh came through surgery very well. She was only in there about 2 hours. She also passed her hearing test perfectly. We were so pleased. She is staying overnight in room 5701 and depending on if she can get off of the IV she can go home tomorrow. However, she has an elevated temp of 99.8 currently so they are watching to make sure it does not develop into a fever and complicate things.
Kaitlyn is doing very well and has been fever free all day. We are so happy with that as well.
Thank you everyone for your prayers and support. Keep praying. Kyleigh is in pain and feeding is very challenging at the moment. We will keep you posted.
Wednesday, January 27, 2010
We will report to Duke Children's Hospital 3rd floor at 9am tomorrow morning. She will be in the holding area until approximately 10:30am. Once surgery begins it could take anywhere from 1 1/2 to 3 hours. She is having a cleft palate repair and auditory brainstem response (hearing) test. The cleft palate repair can last 1 1/2 to 2 1/2 and the hearing test can last 45 minutes to 1 hour. The hearing test is done while she is under anesthesia to check her nerve endings for damage and determine if she has suffered any hearing loss due to the recurrent ear infections from the cleft palate. Once she is in recovery we will be allowed to go back to her and the speech team (feeding consult) will come and help us with her first feeding before being discharged to stay in a room overnight in the main hospital. She will also have "no-no's" on her arms immediately in the recovery room and they may not be removed until her post-op appointment. They are velcro arm bands that stretch from her shoulder to her wrist to prevent her from bending her elbows and reaching her fingers in to the stitched area.
On another note, Kaitlyn has spiked a fever of 103 tonight. Dennis and my parents have taken her to an urgent care doctor in Thomasville. She was already planning to spend the night with my parents. They have been instructed to wake her up every hour to check her responses. If her responses slow, fever increases, or she worsens in any way they are to take her to the hospital. Please join us in praying that she will recover from this strange fever. They have given her an antibiotic but they have no idea what has caused the fever. My dad is staying with her tomorrow. It is hard because all of us want to be with Kyleigh and Kaitlyn at the same time but we can't do it. Dennis, my mom and I will go to the hospital with Kyleigh and once Kyleigh is stable Dennis and mom will go back and help with Kaitlyn.
All in all, I hope we can all get a good night's rest tonight and that Kaitlyn will be better by morning without having to go to the hospital. I also hope we can get Kyleigh through this hurdle she faces tomorrow.
Tuesday, January 26, 2010
Kyleigh is scheduled for cleft palate surgery on Thursday of this week. We go tomorrow, Wednesday, to meet with the surgeon and complete her pre-op appointment. I will know more about what time her surgery will occur and other details after that appointment. Until then we are just hoping and praying she isn't getting sick again since she has an elevated temperature this morning, yucky nose, and really fussy. I am not sure if they will proceed with surgery if she is sick. We really want to move forward with this surgery so that she can get past feeding problems and ear infections related to the cleft. We will keep everyone posted.
Friday, January 8, 2010
Today Kyleigh was playing with her Fisher Price Learning Farm and dropped the carrot top. She reached forward and moved to a hands-side lying position. Then the carrot scooted away so she went belly flop and reached for it again. Before I knew it she had pulled herself away and scooted off the mat after the carrot. She was doing little scoots across the floor after toys. It was awesome! I tried to catch her on video but she wasn't showing off once the camera started rolling. Here is a small glimpse into what it looked like in pictures. Afterwards she took a bottle and a nap because after all it is hard work learning to do new things. So happy for my little girl! Making progress one day at a time!
Wednesday, January 6, 2010
We celebrated Christmas with our 3rd annual Foster breakfast/brunch. The grandparents came and we enjoyed each other's company. Kaitlyn opened all the presents including most of Kyleigh's. We captured her on camera waking this morning and coming out to find that "Santa" had come. It was perfect. She was so excited that he brought her the violin she had asked for even if it was purple. My grandma Maynard came for breakfast too as grandpa was in the hospital and we didn't want her alone on Christmas morning. It was such a treat to have her at our home. Grandpa came home from the hospital by the evening. We finished up Christmas at my mamaw's for dinner. Papaw was not feeling well and was in bed, we feared that he had suffered another stroke.
New's Year Day came during our sleep as we are just too old to stay up to midnight these days. I am personally glad to have 2009 in the past and looking forward to what 2010 may bring us. I pray for a break in medical expenses and developmental gains for the girls and lots of laughter in our house. Soon we will face the first hospitalization of the year with Kyleigh's surgery on Jan 28th. Until then we play each day and work towards small goals.
In fact, today, she had some puffs on her high chair tray and she captured one in her small hand. She manipulated it to her little pincher fingers and took it to her mouth. Yes indeed, my sweet angel fed herself a puff for the first time today!!!! Wooohooo! and shouts of Hallelujah!! rang from my lips as I clapped and jumped for joy. I then called my mom and texted people including her OT. I was so proud. Of course, she refused to do it again but just smiled at me with her goofy grin and opened wide like a little bird waiting for me to give her another. Gotta love her. But it is a start and it shows progress and I need these signs of progress to keep me motivated. This SAHM (stay at home mom) stuff is difficult in more ways than one. I need these moments of success to remind me why I am home right now with her and that it is the most important job I will ever have in my lifetime.
With that said, Happy New Year a few days late, may 2010 bring us all more happiness and good news to share with the world!
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