Mikey and I finally got some rest. My body is programmed not to sleep during the day, but at least I did rest. We have showered and will head back down to the hospital shortly. While we were gone, Kiley got moved to the pediatric floor. Mom said the room was so small that neither of us would be able to spend the night, so she requested that we be moved. They also requested a crib for Kiley, so hopefully tonight we won't have to worry about her climbing or falling out of bed like last night. Mom said Kiley has been eating great and walking all over the place. There is a playroom on the floor that she has been playing in since she got up there. Unfortunately, it closed at 3pm today and is closed tomorrow, so I am going to take some fun things up to Kiley to keep her busy over the next day. I am really hoping that we will get to come home tomorrow. Fingers crossed. If anyone is wondering, we are in room 624. If you are unsure of the hospital we are in, text me and I will let you know. Kiley is now sleeping, so hopefully we can play some more when we get to the hospital and then all get back on track and sleep tonight! I will update again soon.
11:22am
Mikey and I just came home to get some rest. When I got back to the room, Daddie was already feeding Kiley. She ate scrambled eggs, yogurt, applesauce and a banana! She was a very hungry girl! Daddie also took her to walk through the halls. She is extremely exhausted, but she was walking great! Right before we left the hospital, they came by and did an echocardiogram. He said that everything looked great. There wasn't any fluid around the heart or lungs and no leaks in the patch. All very good news. Hopefully Kiley can get some rest while Mommy and Daddie are gone. She is in good hands with Marmee and Guy. Grammy and Grampy just took Presley to McDonalds so we can lay down. Please pray for Mommy, Daddie and Kiley to get some rest over the next couple of hours.
9:08am
I am sitting in the waiting room eating breakfast after one of the hardest nights of my life. After my last post, Kiley did wake back up, so I fed her some Mac n cheese. I was hoping she would go back to sleep after getting something in her tummy, but that did not happen. The good news is that her shakiness went away, but the bad news is that it was the start of a rough few hours. She would try to lay still and fall asleep and then she would just cry and cry and toss and turn and thrash and pinch and hit. At around 2:30, they came in to do another chest xray. The nurse also took out the IV in her left foot because it stopped working. Then she gave Kiley another sponge bath and cleaned her wound. Since she only has one IV left, they came in at 3am to draw blood for some tests which consisted of more needle poking. After all of that was done, she literally cried from 3am until 6am nonstop. It is so hard not knowing what was hurting her, much less,not being able to make her feel better. What I do know is that Kiley has a very high tolerance for pain and something was definitely hurting her. My only two guesses were that her chest tube was bothering her, or she was having gas. Either way, the nurse gave her multiple doses of medication to try to calm her down and nothing helped. There were several times where I thought she was going to pull the chest tube out (which would have been very bad). At about 5:45am, the nurse could tell I needed a break, so she loaded Kiley up and took her for a wagon ride.
We were hoping maybe a change of scenery from the bed would help. She brought Kiley back a little after 6am and I got in bed with her and held her in my arms and she finally fell asleep! At about 6:20am, they came in to remove her chest tube. I hated waking her up, but I was so relieved to get the chest tube out. Kiley did so well. Not even a peep...again, very high tolerance for pain. Theybremove the tube and then stitch her up. Once she tried to go back to sleep again, the crying started again. It wasn't quite as intense, I think by this point it was pure exhaustion. We finally both fell asleep from about 7am to 8am, but that is the extent of my and Kiley's sleep in the last 8 hours. Needless to say, we are both exhausted. One of her doctors came in around 8:30 to check her vitals and told us that we are getting moved to our own room on the pediatric floor today, so that was good news. That is one step closer to going home. The heart rehab team also came by to help Kiley try to walk, but she is so exhausted, they didn't have much luck.
They are going to send the physical therapy team to come work with her. Thank you for your continued support and concern. Please continue to pray that Kiley and I get some rest today and that she stays as pain free as possible, and that whatever had her in so much pain throughout the night will stay away and never come back. I ordered Kiley breakfast, so I am going to head back to the room to see if it is there and get her fed.
1:54am
We had some more visitors, Ben and Meredith Fox, around 8:00pm last night. Kiley was pretty alert when they were here. She watched Baby Einstein and interacted with them a little bit. They left around 8:30pm and she went back into a restless sleep until about 9:00pm, and then She finally settled down. Marmee and Guy left around 10:00pm. Kiley and Mommy both slept from about 10:00pm until 1:00am. Kiley woke up pretty shaky. It is probably partially from the meds and partially hunger, so I gave her some saltine crackers. She ate almost 6 of them, chewing like a very big girl. Daddie just went out to the waiting room to make her some Mac n cheese. She just laid back down with her juicy, so if she wakes back up we will try to get some Mac n cheese in her.
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