Wednesday, April 15, 2009

Kaden update

Kaden is back on the high osilating ventilator. He was having problems keeping his CO2 levels down on the regular ventilator. The doctor made the decision that it would be better to go ahead and put him back on the osilating ventilator to keep his CO2 levels down. They have been doing a lot of lung treatments, hand ventilation, and suctioning of his lung. Pretty much every time they do a hand ventilation and suction, his stats skyrocket up to the mid-high 90's, and his CO2 levels drop. Kristi and I both said that we would stand there next to Kaden all day and all night long doing hand ventilations if it would help. Kaden likes it....the only problem is that they can't get any of the machines to mimic the hand ventilations. So frustrating!! Everytime they suction his lung, they get lots of white/clear thick mucas. No wonder he can't keep his stats up....If I had that stuff in my lungs, I wouldn't be able to breath either! I know they are trying hard, and a majority of them really care about Kaden. Lots of them downright LOVE him. Anyways, we are still worried, but not giving up hope. I talked again to one of the doctors that has really bonded with Kaden about his situation. I asked her if everything keeps going in the right direction, and as long as his stats stay somewhat decent, will they still consider doing the surgery to correct his hernia? She said absolutely. I asked her if it would help Kaden once the surgery is completed, and she said not exactly. She said that it would be a milestone, and it could help in some ways, but it would not be the cureall to help his right lung. I just figured that if they could get the surgery done, then they would have a chance to see what kind of lung and how much of any lung is functioning on the left side. I thought....well, maybe if they get the surgery done, they can get his left lung to start working to help out the right lung. I guess it's just me trying to have positive thoughts. I try to turn everything into a positive situation. The earlier "Family Meeting"....Ive already tried to put that in the back of my head. It just stresses me out more to have to think about the negatives. I don't understand why they have to be so negative all the time. Anyways, I seem to be rambling on, but I'm probably just trying to vent. Kristi is still sitting in with Kaden next to his isolet. I just wanted to come out and post another update before it gets too late. I'll be heading back in to hand out with Kaden and my beautiful wife as soon as I'm done here.

Keep the good thoughts and prayers coming. I just pray that Kaden has a good night, and stays that way until he can be strong enough to get his surgery. Talk to you all tomorrow:)

JUST TO LIGHTEN THE MOOD:)
Below is a picture of Kristi with Logan from around April 4th. She had a headache, so the nurse gave her an icepack bandana. She is probably gonna kill me for this:) But she will still LOVE ME!

15 comments:

  1. I remember the negativity they had for Nayeli too. I just wanted to punch them. Keep on being positive. Keep talking to Kaden and tell him to fight. I am praying non stop for Kaden. I know I wont be able to get sleep tonight so if Kristi needs to talk let her know I am here.

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  2. I've been following your blog for about 2 weeks. I am praying so hard for your Kaden and your family. I hope this gives you some comfort. Please know you're in my thoughts!!

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  3. we are praying so hard for kaden and still fully believe that God can perform a miracle here. you both seem so strong and are such a mark of courage for me. i know you may not feel that way but reading your blog has allowed me to see the love and the deep roots of faith which are such a part of the kuehl family. keep fighting and pushing through kaden!

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  4. It's almost like doctors forget that they are people, and we are people and while they have to be honest with us, they don't have to be so blunt. Sometimes I felt like our doctors were being rude because I understood the situation and didn't need to be constantly reminded of how "bad" it was. Kaden is doing the best he can and I know you all are so proud of him. He is such a fighter and has so much support/prayers from numerous people. I know that he can do this!!! Hoping for Kaden to have a good day tomorrow and show the doctor some little signs to get them in a more positive mood as well. :-)
    Ashley

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  5. Sorry for the second post.. but I forgot to tell Kristi she was lookin good :-) hehe and Logan is just a doll... (and craig just so you don't feel left out, I am sure you are looking good too!) Hope you guys are able to get some rest tonight.

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  6. Kristi you are so beautiful! Somehow you manage to make a hospital gown look sheik. Here's hoping Kaden has an amazing day!

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  7. Hi Craig,

    We know exactly where you are coming from. The doctors and nurses were always so cagy, not wanting to put our hopes up. But then when we left, they said that they thought Alina did so well because we were so positive all the way through. I though "right, kind of late to tell us that". Keep your positive thinking, it will rub off on Kaden for sure. He is probably scared and unsure of what's going on- with all the vent changes, so he needs you to tell him that everything will be fine and that he will be home in no time. Miracles do happen and your baby is one of them. Just think how far he has come! Incredible!
    As for the surgery, I definitely think it will help Kaden with his left lung. Right now, his lung doesn't have any space to expand because of all the stuff that is up in his chest. So, it's only his right lung that's doing the job, which must be very hard on his little body- given that it needs to fulfill all the other functions as well. It's amazing how quickly lungs grow though. All the machines that Kaden is on will help that- even though he might really hate some of them. You guys are doing great, you are fantastic parents and Kaden is one amazing little one. Don't give up hope. Kaden wants to make it, he just needs some time.
    We are thinking about you guys. And Kristi, you look great!
    Hugs,
    Ingrid, Alex & Alina

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  8. Stll following your blog. I am at a loss of words. I will one day in the next 18 weeks be in your shoes, and I'd like to think that I'll just continue to pray and be positive....you have a beautiful family and I believe your little 'warrior' is going to pull through. He's such a tiny little man that I think doctors forget that he just left his safe and warm home from his mother into a harsh world of light, poking and such...he just needs some time. I'm praying for all of you.
    Chanda

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  9. We too were so upset about all the negativity. I know they have to prepare for the worst, but I think they forget to hope for the best. You are doing a great job at being positive. Your love and passion will spread...it already has touch and inspired the lives of so many. He CAN feel your love and knows your voice. You are both so strong and have our prayers morning, noon, and night.

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  10. Craig you keep up the positive thoughts. Unfortunately it is the doctors job to give you the facts whether they are pleasant or unpleasant. Many times I have been in with patients when a doctor gives them unpleasant news, I tell patients that they have to work at getting better. And keep positive thoughts. I have seen several friends kick a life threatening illness in the ass because they stayed positive!!! SO JUST BEACAUSE THE DOCTORS ARE GIVING YOU THE FACTS DOES NOT MEAN ALL OUR PRAYERS AND POSITIVE THOUGHTS WON'T CHANGE THE SITUATION AND MAKE THINGS BETTER!!!!! DOCTORS DO NOT HAVE CRYSTAL BALLS, THEY CAN ONLY GIVE INFORMATION BASED ON WHAT THEY HAVE BEFORE THEM So you leave it to the doctors to give you the facts and you keep those positive thoughts. The rest of us are all keeping those positive thoughts and prayers coming. Kaden has shown he is a fighter and shown that to the doctors several times!! Keep up the positive thoughts inthe room with Kaden, and tell him to keep fighting! We love you guys

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  11. Stay positive for Kaden and we are praying that he will have a good day! Even though the doctors are giving you negatives, turn them into positive thoughts and prayers. I am happy to see they switched him back to the oscillating vent and if he needs to be constantly suctioned, that is what they should be doing to help him. I think surgery will help Kaden and I pray he can get strong enough to get there. Keep talking to Kaden and telling him to fight and show those doctors how strong he is.

    Thinking of you and sending you much love! Hope today is a very good day for Kaden!
    Tracy - mom to Ian, WY and CO State Rep. for CHERUBS

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  12. I am continuing to pray for little Kaden. The doctors were the same way with Addison. I wanted to focus on the positve or make headway in the right direction, but many were just focused on the negative. Looking back, I know that the doctors were just doing their job and that they wanted her to get better as much as I did. Just remember that the doctors are not in control. Kaden and God are the ones that are in control. Kaden is still really strong and a fighter. Like I have always said, "he ia going to be one of the miracles". You just have to stay strong during the journey. God will never give you more than you can handle. Lots of love and prayers from Atlanta.

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  13. Hi Guys,

    Listen there is nothing wrong with looking for the positive in every situation.. doctors have to tell the facts so u are prepared but don't know what Kaden and his family are made of. That u all are willing to fight and stay strong (I need to follow my advise in the next 3 weeks ahead ). Lots of love and prayers for little Kaden. Take care of yourself!
    HUGS,
    Joanna (CHERUBS)

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  14. Hi i have been following kaden since you found out about his CDH, and I just recentley went threw this same thing with my son kayden who is now 6months. I just wanted to let you know that the doctors dont always now what they are talking about, they told us kayden had no chance to ever eat or bee normal and he has no promblems at ALL now! So if you and your husband think he is going to make it then he WILL!! One of kaydens nurses told me once that your parental instincts are more right then the doctors thoughts most of the time. She was right to. O and i also thought that i should tell you that D Cromblholm from Cincinnati Childrens who preformed kaydens surgery told us that not typically but some of these CDH babies just need the surgery so there body can start functioning the correct way, and no matter what you try to do to get them healthy for the surgery it wont help. so that could be all he needs to get him better. I hope this is helpfull in some way! If you ever need someone to ask anything about my email is nikkiandjosh_06@hotmail.com

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  15. The love and prayers from KY are still heading to your entire family, especially Kaden. Hang in there.

    God Bless,
    Maxton's friend, Rhonda
    & Maxton's papaw, John

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