Tuesday, January 27, 2009

Stronger

Kaylee seems to be doing much better. Her stats are staying good, they had to stitch up the hole in her neck that the infection caused. She has lost so much water weight, she is looking more and more like my little Kaylee each and everyday, her eyes...the whites of them were swollen, I forget what it is called but they are looking much better also. I just want to let everyone know how much I thank you for all the prayers they have helped her so much! Please keep praying & I will talk to you all soon. I hope that everyone is doing great!

Leslie

Wednesday, January 21, 2009

Thank you all for the support and please keep praying for her. We are about to head to the hospital I cant wait until Thursday because I know I can stay up there Friday and through the weekend. I talked to the nurses many times today, one of my favorite nurses has had her the past couple days but she is very good at helping me understand everything. She has needed many blood transfusions 3 today. The blood cultures came back there is staff in her neck, they wont know exactly what kind until 72hours of culture, right now we just know its staff and the other bacteria the doctor said she had. Please pray she gets better.


I dont care what Kaylee needs to get better, she can take all the time in the world. I will sit at her bedside for another couple months if that is what it takes. I just need my bug to get better.



Thank you all.

frusterated.

I'm not sure what to do right now. I am scared. Kaylee had her surgery got the trachea put in and the other procedures they were doing during this surgery. Everything went great, she came back and looked beautiful. I could see my babies whole face, once again. Well now we are having issues. The ties that hold her trachea in were cutting into her neck, me and my husband noted this and wanted them changed...her neck was raw and red....it looked awful and had an odor to it also. We asked if the ties could be changed and the nurse said they weren't aloud to change them the ENT would have to come take a look. Well he came and changed them the next morning I guess they decided to take a look after we mentioned it and realized we WERE NOT lying/exxagerating. Or they did know and was just waiting for the ENT to come anyhow....I am more than stressed. Yesterday they call me ( I am home since I have no one to watch Krista during the day and she is not aloud in the picu, i stay home except weekends when my husband doesn't work) well like I was saying they called me around 12 and 'Kaylee wasn't being herself, she was lethargic, her color wasn't right, her blood pressures were low, she had a fever' well it just gotten crazy. Well they said they think there is an infection were the trachea site it, the stoma site. The site is as big as a nickel and should be smaller than a pencil. The part that is as big as a nickel doesn't go all the way down to the trachea they said its only the skin that has 'eroded' down. I am mad, and angry because we have been complaining about her neck and it rubbing it, maybe this was inevitable, maybe it was going to happen. Right now I can only be mad. There is already a positive test for a bacteria I could never guess how to spell that when it is being treated causes inflammation most of the time, they have sent out blood cultures for her blood. They are hoping there isnt staff. The had to take her to the OR to put in a central line because they tried to put one in at bedside and poked many times and could not get it. Her veins are not accessible because her blood pressure is low, and when your blood pressure is low your veins get smaller. Well when they took her to the OR they got a line on her groin with three ports, well they lost 30cc's of blood approximately and so she needed a blood transfusion last night. She did good all night, it killed me to leave but we didn't have anyone to watch Krista in the morning, I couldn't sleep. Worried. I called this morning and she is needing another blood transfusion because her blood is not clotting? I have yet to learn about this. They ran a test on her blood to see what it was doing and how it was clotting and its not clotting well, so she got another blood transfusion. I am so scared. They talk about the bacteria that we know Kaylee has and say that they cant really know how it reacts to treatment, some do well, some are resistant, some get deathly ill. She is my baby. I am so mad, and think that really that's how I am trying to feel better, to put a blame where it doesn't belong. The only person I am really frustrated with is the ENT who did her surgery, It wasn't her usual ENT who I wanted to do the job. It was discussed with her ENT though so I felt confident that this doctor would be good. I feel like he should have paid attention more, been more thorough. There are many little things that make me feel this way. All the different things I have observed. I don't know....


I love her and, I'm scared. That's just it. I just needed to vent.

Tuesday, January 13, 2009

Surgery

Just a quik update, I think her surgery is going to be this Thursday. I said I would keep everyone posted and I really wanted to get the word out so more people can be praying for her, so please pray for Kaylee and a fast healthy recovery! THANK YOU ALL SO MUCH!

Saturday, January 10, 2009

Results Are In...


Kaylee is still on the ventilator. Her lungs are at base line but she is not weening off the vent. There was a misunderstanding between us and the nurses, and her lungs have been clear for some time now. We would ask how they look and they assumed we knew they were already better and said "the same" or "a little better today" so we thought they weren't really clearing up. Well its great that her lungs are clear, but not such an optimistic thing from the doctors point of view. They are glad the lungs look good don't get me wrong, but her weening should be going better with that being the case. Anytime they try to ween the rate or the O2 level, her CO2 level goes up, it doesn't help that she has to be sedated all the time either. They have to keep her comfortable so she isn't trying to pull out the tube or gagging. So she wants to rely on the vent to breathe for her more than she wants to breathe herself. She has an extremely small airway, and its hard to intubate her so they don't want to try and extubate her again and see how she does because if her CO2 starts going up and they have trouble intubating her AGAIN, it could just cause more damage to her airway and make this all much harder on her. When they do try and ween her off the sedation's and let her breathe she does great, as I said in the last entry she got to be extubated once and it went well but slowly her stats starting going down hill. Her CO2 went up. With her airway being so small, and her secretions build up and she doesn't swallow it like she normally should do, it builds up and it makes it harder for her to breathe or she breathes it into her lungs....aspirates. There are plenty more things that add up to the thoughts that the doctors shared with us this past week, which is possibly that Kaylee may benefit from having a tracheostomy. It has been a hard week and its been a lot to think about, Kaylee has been through so much, and its just...time for her to have a break and get to be a happy baby. But maybe that's what this will do. After a lot of thought me and my husband decided to have Dr. Little consulted to take a look at Kaylee and evaluate her from his point of view (he's her ENT) and see if he thinks she is a candidate for this option. This wont be until Monday if he is available, and if this is the route he thinks we should take its going to be a long road for us. Another week or two before surgery, maybe more-maybe less? Then for a week after surgery she has to be kept sedated and comfortable for the healing process, and then they have to ween her off all the drugs shes on....which they say takes the same amount of time that they were on sedation's....which has been since Dec 23rd so...that's like a month if surgery isn't for a couple weeks, actually over a month...which right now we could think Kaylee may be in the hospital for her first birthday.... So its going to be a long road but I have faith that its going to be whats best for Kaylee. I am dreading it but at the same time I am almost jumping for joy thinking about having my little bug back. Its been so long since Ive got to see her, as my active little bug =) I cant wait!


Thank you everyone that has left such uplifting comments! It is always so nice to get on here and have them =) Thank you and please everyone keep praying for Kaylee, she is very thankful for all of you! We hope everyone's familys are doing well and are happy!

Friday, January 2, 2009

Happy 2009.

When I read back it seems most of my posts are when Kaylee is either in the hospital or just coming home. I hate that. It has been a tough 2008 and 2009 isn't starting out with a boom either. Kaylee was admitted to the PICU December 23rd. I brought her to the doctor because she was starting to have stronger retractions when she was breathing and she was very...lethargic. Not playing or wanting to do anything, really. I was getting concerned with the sleeping more than the breathing because she occasionally has breathing problems. She was just so lifeless it seemed like. Not my little Kaylee bug. When we got to the doctor they sent us straight to the ER because she was really starting to struggle with breathing once at the doctors, it was insane how rapidly worse she was getting. She was needing about 4 liters of O2 on the way to the ER (which is only across the street from her doctors office). She was pinker than pink though so it scared me, I didn't understand. Her pulsOx at home wasn't working I think because her feet are SO fat, it just wasn't picking up anywhere I put it many different spots and sometimes it would pick up and it would go up to like 94 and the fact that she was pink also made me feel she was ok. So when at the doctors she was reading 70's with like 2-3 liters of O2 really worried me. The doctor called the ER to let them know she was coming, they took us straight back. They did an x-ray and some blood test and Kaylee was getting SO much worse, just working so much harder to breathe and not aware at all. Well she had some pneumonia in her right lung, about the size of a golf ball. It was also hazy so at the time it wasn't really significant. Around 6 we were being taken up to the PICU and me and my little sister had to wait outside the PICU for them to set her up and at that time she had 7 liters of O2 blowing in her face to keep her stats up. They had poked 6 times in the ER trying to get IV access, they did get it once but it failed after one set of antibiotic ran its course. So once in the PICU they were going to try and get that IV in and get her situated. Me and my sister went to get some food because they said it would be an hour or so, and we hadn't ate since breakfast so we went to get food and I thought Id stop and get Kaylee some stuff from Kmart which was right down the road. When we got back, things took a turn for the worse. Kaylee was....struggling terribly to breathe, she was rolling her eyes and just....jerking around. I cried and cried, what else can you do? As a mom your suppose to be the one who protects your child and keeps them safe and at moments like that you can do nothing to help, I felt so useless... I wanted to just pick her up and hold her and try and make her better, I knew that wouldnt do anything though. I can say Kaylee is my main motivation in being a doctor. I want to be able to help her when shes sick, to get the satisfaction I would feel as a mother when I am the one that diagnoses and helps her on her journey to getting better. Its so frustrating not being able to do anything at all. Kaylee's gases were all off....her carbon dioxide was extremely high which if that gets to high your body will just shut down. Her carbon dioxide level was at 86 and should be between 40-50. That was the scariest part for me, so they had to intubate her. Let the ventilator breathe for her. Her x-ray that night in the PICU her right lung was completely covered with pneumonia and her left was all blotchy. Kaylee has chronic lung disease so its extremely easy for her to get any type of respiratory infection and its so much harder for her to get better. So not only was her first Christmas in the PICU completely unconscious so was her first New Year. For the New Year she was off of the ventilator, she was taken off the vent on the 30Th because her carbon dioxide was staying low and her stats were staying high when they let her initiate the breathes on her own, so they felt she was ok to come off but she was still being some what sedated to help ween her off the drugs she was getting while on the vent. Well since shes been off she has had high and low CO2 levels. Well last night it got up to 90 and at 2am went down to 60 so we thought, 'ok shes going to ride it out' well this morning the CO2 level got up to 117 and she got put back on the vent. I am rather depressed. I haven't seen Kaylee aware or playing.....or anything for that matter, I actually am having to just be happy when shes mad and flaying around, showing me shes still in there fighting for us. Her lungs are getting better very very slowly. If you compare the x-rays day by day you wont be able to tell anything is better. If you compare them from today to when she came in you can see the little difference. I just hope that all who read my post will pray for Kaylee, pray she gets better soon. We need her home. I need to see her pretty little smile, and see her eating them scrumptious little fingers. I miss my little bug.....

I am sorry most of my entrys are about more of the sad things. I think I use this blog to help me relieve my stress. I know people will understand me on here. I know that people are going through similar things....

Thank you all
Pray for Kaylee.
As for everyone else I hope and pray you all had a good Christmas and a Happy New Year.
God Bless you all.



Kaylee's First Christmas


New Years Eve Happy New Year, Baby

& of course, the Kaylee I miss more than anything.