Kylee Has The Giggles

Stories about Kylee

Yesterday was the first that Kylee has really had any energy since coming home from the hospital and she was full of it. She had Marsha (our nurse) and I laughing so hard. She was sitting in her purple tomato chair and she would hold one arm our straight in front of her and then she would bounce her body up and down and hard as she could. It almost looked like she was riding a horse. We started laughing at her and then she would start laughing. When we would stop then she would do the "horse riding" again and we would start laughing again and then she would start laughing. It was so cute. She has just been so full of giggles. I told her we need to pack some poundage on her and she thought that was funny and laughed and laughed. Well anytime we can get a laugh our of her we keep doing it so I kept saying the word poundage over and over and she would just laugh and laugh. I LOVE IT!!!

Also Uncle Kenny stopped over yesterday and he said good-bye to her and she raised her hand real slow like she was saying good-bye to him. So she must be feeling a little better.

Nursing

Well I think we may have our nursing situation figured out. I am interviewing 2 nurses in the next week possibly 3. One is going to work out a Tuesday schedule with a nurse I had previous interviewed (Deb and Meghan). Meghan is a fairly new grad and young so I think she will have lots of energy and do lots of fun things with Kylee. She is also willing to do one night a week and weekends. Deb has been and independent nurse for a while and I think she will be a great resource. She knows a lot about the process of getting nursing approved and that kind of stuff. The other nurse I am interviewing is Wendy. She is going to be our occasional night and weekend person. She has 5 children and 1 of them has special needs so she lives the life every day. She also takes care of a 7 year old with special needs 2 nights a week. All 3 are RN's. So I am very excited to have found them. Hopefully everything works out.

We are home

Well..you haven't heard from me for a few days..bet you were wondering.... Yes...we are HOME. I am so excited to have all 5 of us together again. Kylee came home on Thursday afternoon. Things have been busy since coming home as we have a whole new routine to get use to. Kylee was sent home on yet another medicine. This one is for her heart. One more medicine that we have to get up at 1am to give to her. I think most days I do it in my sleep. We have to check her oxygen level several times a day. Give her neb treatments every 6 hours.Then we also have oxygen in the home just in case we would need it. So far she has been doing pretty good but we are having some issues with throwing up. Not sure if it is a side effect to the new medicine or just that she hadn't eaten in so long that it is taking her tummy some time to get us to it. Don't have much time to write but just wanted to let everyone know we are home.

Good News

Well Jason just called and said things are going great. They are taking her off the PEP treatments today and are starting her on just regular neb treatments. If that goes well then she can come home tomorrow. She will probably have to stay on the heart medication for the rest of her life and at this time there is no talk about any heart surgery. I know our regular cardiologist said she is not saying that she will never have to have one but for right now she doesn't. She was diagnosed with non-compaction cardiomyopathy. They said she never had pneumonia. They believe everything was all heart related and that her lungs were filling up with fluid. It is so funny how you can go from one hospital to another with completely different diagnosis. We had this happen to use last October also. They told us she had pneumonia at one hospital but when we got to Milwaukee they said no....so who knows. We have a diagnosis and treatment course and she is doing better so I guess that is all that matters. I can not wait to see my baby girl.....I have never had to go this long without seeing her. In a way it is kind of good because Jason is playing my normal role and I am playing his (he is in Milwaukee and I am home with the boys). Now we know what it is like to walk in each others shoes.
We are in desperate need of some nurses so if anyone who is reading this knows someone who is an independent nurse (LPN or RN however we do have a case manager...they will know what that means) please give them my number.
I would like to send a special thank you to the girls from work who brought over supper lastnight for us. It was very thoughtful. Once again I would like to thank everyone for your prayers and support. I know we have said it a million times but we can not thank you enough.

Still in the hospital

Jason and I came home lastnight. It was so hard to leave her lastnight but Jason and I needed to get home to see our two boys and take care of some business at home and work. My mom and dad are staying with Kylee. Jason is leaving tomorrow morning to go back down and then my parents are coming home. I am planning on going back down on Thursday unless she gets to come home before then I will just go down for discharge so that I know what we need to do at home. I think this morning was harder on me then lastnight because we were going about a half way "normal" routine but Kylee was missing. That is when it hit me hard. Even knowing she was in the hospital and was fine it was so hard not to have her here with us.
I have been getting many updates today. They have increased her heart medicine today and she seems to be handling it fine. They just started on a low dosage to make sure her heart rate and blood pressure remained ok. She is now down to 1/2 liter of oxygen. She is still getting the PEP treatments for her lungs but they are hoping to move over to the neb treatments soon. She was moved from PICU (3rd floor) to intermediate care (4th floor). They are planning on doing another echo on her heart and a sleep study before we go home and teaching us how to deep suction her to help get the stuff out of her nose and mouth that she can't get out herself. I have heard that she has become a TV hound since I left. They have these little flat screen tv's that you can move all over the place. They bring it down over the bed right in front of her face so she can watch it. My mom said she becomes so relaxed watching it and her favorite seems to be some tinkerbell show/movie. My mom also said she makes some noises while watching it. I can't wait to see it. So overall sounds like things are getting better. Hopefully we stay on the same track.
Once again thank you to everyone for all the kind words and prayers. We know we are truly blessed with a great support system and could never thank each and every one of you enough.

Back in PICU

Well we are back in the PICU. Kylee lasted about an hour on the regular floor. We are not sure what happened. She threw up and became unresponsive, blue and not breathing. One Dr said it was her heart the other Dr think it was a seizure so at this point we don't know. Guess it is a wait as see game. Not much else to report.

Yet another update

Well doctors did rounds today and Kylee is doing great. It is amazing how quickly she bounces back. It was only a few days ago I was having a talk with her telling her that if she was tired of fighting that it was ok for her to give up. That mom and dad would be ok and now she is bouncing right back. Her oxygen is down to only 2 liters and she is doing great on that. They are moving her out of the PICU today as soon as they can get a room ready for her. Sounds like we should only be here for a couple of more days. They are going to only give her pep lung treatments during the day instead of 24/7 and then tomorrow give her just regular neb treatments during the day. They started her with 1/2 feeds yesterday and did great with that so now she is going to get full feeds today. They are trying to get her back on a schedule that we can manage at home.
She is a tough girl. Like I said before one minute I thought there was no way she could be strong enough to get thru this and now we are already talking about going home. AMAZING!!
Thank you again to everyone for all support and prayers. We truly are grateful to each and every one of you.

Another Update

Well we are currently still in the PICU at Milwaukee however doing much better. She is much more awake now and is showing her feisty side with the staff. They took alot of stuff off her today. They stopped her heart medication, took out the foley and are trying to bring her down off the oxygen. She is from 6 liters to 4 liters and is running on the lower side for oxygen level so they may take her back up to 5. They also started a new neb treatment that just pushes the medication down in the lungs a little further. If she does good later today they may move her to intermediate care (in between PICU and a normal room) however at this time they don't have a room for her. If they don't then she will stay in the PICU because they don't want her in a regular room yet. She is also starting to cough a little on her own. I guess that is about where we are at right now. Much better then before :)

Milwaukee

Just another quick update. Kylee was transfered to Milwaukee Children's Hospital lastnight around 10:30 pm. Her respiratory status was getting worse and she was beginning to show signs of modeling so they felt she needed to be transferred to the PICU. It was a late night. I don't think we got to bed until 3:00 am and then had to be out of the sleeping room by 9:00 am. She is holding steady today. She is currently on 6 liters of oxygen which is down a little from yesterday. She is also a little more alert today. She is still sleepy but at least she responds to your touch and voice where yesterday she was not doing that. They are running lots of test and checking every little thing out to try and figure what is going on with her but they are thinking pneumonia and she is just not strong enough to fight it off on her own.
Thank you to everyone for all the prayers and words of encouragement.

Update on Kylee

Just thought I would post a quick update. Kylee is still in the hospital. We had kind of a rough night. She couldn't main tan her oxygen and her respiration rate was so fast. This morning they did a chest x-ray and it didn't look any better then it did on Saturday and she started running a fever again today. They put her on heated humidified oxygen in hopes that would help loosen things up. Then they also put her on a different antibiotic. The Dr said if that doesn't help they may need to transfer her to Milwaukee as Neenah does not have a pediatric ICU and she said she would rather transfer her in a non-emergency transfer then to have to send her in Thedastar helicopter. So I came home to pack some bags and get things taken care of for the 2 boys and work a little (it keeps my mind busy). Then I am going to head back up and then Jason will come home. I know I have said this a million times before but she is one tough girl. I don't know how she does it. My heart just broke for her today watching her little chest just a moving up and down so fast. I'll try to post again soon so everyone can stay updated.

Pneumonia

Pneumonia

Well we are back in the hospital. Kylee came down with pneumonia. She started with a cold on Monday. On Thursday she was having problems breathing and her hands and feet kept turning a blueish color. We went and saw her pediatrician and she said everything was fine (of course by the time we got her there her breathing was normal and she was a nice pink color). On Saturday she would cough until she would throw up and just slept all day. I hooked her up to our pulse ox machine and her oxygen level was low. We decided to take her. By the time we got to the hospital her oxygen level was 85% and they had to put her on oxygen. They started checking her for RSV and influenza but as soon as they did the chest x-ray they saw the pneumonia. It is only in her right lung so they think she has aspiration pneumonia (meaning she probably got some of the vomit in her lungs). The Dr said she will probably be in the hospital until Wednesday and then after that it will probably be up to us as to when we want to bring her home. He said more then likely we are going to have to bring her home on oxygen. Right now she is on 3 liters of oxygen. Anytime they try to bring her down her stats go low and then they have to put her back up. She also is very sleepy. She probably was only awake for about 30 minutes today. Her face is also very swollen and they said that is probably from the IV. All I can say is she is one tough girl. Today I just kept looking at her thinking how much more can your little body handle. She is such a fighter.

ABR

ABR RESULTS

Kylee had her ABR. As we were pulling into the parking lot of the hospital she threw up and had a stuffy nose so we thought we would be sent home. All her vitals where fine so we were able to go ahead with the ABR and MRI. We got very good news. Both ears came back with normal hearing. Her left ear has some fluid and they could not see her tube so we have to call the Dr tomorrow that placed the tubs to take her in for a tube check and possibly some ear drops. The audiologist said we don't have to come back for a year or so unless we notice something different in her hearing. She said we will be the judge of howl long we want to wait. So very excited about that. Now we just have to wait for the results of the MRI. As the nurse was walking Kylee and I out (Jason was pulling the car around so we didn't have to walk so far) the nurse said I just want to tell you what a wonderful job you and your husband do with Kylee. It is hard work taking care of a child with special needs and you don't always see parents as wonderful as you. Made me feel good. It is hard work but I just can't imagine a parent not wanting to do anything they can for there child.It just breaks my heart to think some children don't get treated well but I have seen that first hand many times during hospital stays. Kids that stay weeks and weeks in ICU with no parents.Oh...I just can't imagine. Ok...can't think about that anymore. Hopefully Kylee's cold doesn't progess into anything worse. Everyone in our house seems to be sick. I got sick while we were in the hospital 2 weeks ago. Jason got sick the weekend they came down to visit. Keegan was also sick the week Kylee was in the hospital and now Collin and Kylee are getting sick. Oh the joys of winter...Can't wait for warm weather.