Sunday, April 12, 2009

Kaden still on ECMO--Not a good day



PICTURED ABOVE IS ALL OF THE ARTICLES PLACED UNDER KADEN's ISOLET

Today has not been a good day. Kristi and I went to the NICU this morning around 9am. Kaden's stats were pretty low when we arrived. His blood pressure was really low and his O2 levels were in the high 70's low 80's. Not a good start for the day he's gonna be trialing off ECMO. The doctors also said that it looked like the X-ray of his right lung was not open as much as it was yesterday. They think that his stats went down because they were too aggressive trying to get the fluids off. They had to give Kaden platelettes this morning to bring his stats back up. Around 11:30 am, they tried to trial Kaden off ECMO. For the first 15 minutes, things looked GREAT. His O2 levels were in the high 90's, but as more time passes by, his stats dropped quickly. His CO2 level was sky high (in the low 100's). His O2 level for his upper body was reading in the low 70's, and low 40's in his lower body. They had to put him back on the ECMO circuit after about 45 minutes. During the time he was off the ECMO circuit, they tried both regular ventilator and high oscillating ventilator...neither worked.

Around 2:15pm, Doctor Keller came in to oversee another trial off ECMO to see excactly what was going on. So once again, they turned off the flows to the ECMO circuit...once again, Kaden's stats were great. But after about 20-30 minutes, the same thing happend. His stats dropped down, and his CO2 levels got very high. They decided to put him back on the circuit tomorrow. Doctor Keller came over and spoke with us regarding Kaden's issues. The biggest issue is that Dr. Keller doesn't think that Kaden has enough lung to support his body. That is why his CO2 levels got so high so quick. She said that Kaden had done everything he was supposed to do to try and get better. He has been peeing a lot, and his right lung has opened up, but she thinks it's just not enough lung for Kaden. She also said that she is worried about keeping Kaden on the ECMO circuit overnight and that they would be keeping a very close eye on things due to mechanical issues with the ECMO unit. We asked if it was possible to change out the ECMO machine, but she told us that she doesn't think Kaden is strong enough right now to recover from that. So as of this afternoon, Kaden's stats were looking very good when we left the hospital. They will be doing lots of lung treatments trying to get Kaden strong for tomorrows event. Kaden will have to come off ECMO tomorrow.

It has been a very stressfull day for Kristi and I. We have spent pretty much every minute of our day by Kaden's bedside praying that he will be able to survive coming off ECMO tomorrow. After they did his last lung treatment at 6:00 pm, and his stats were looking good, we decided to go back to our hotel room. We are both a mess both mentally and physically. We haven't even had time to eat anything today. As soon as I'm done with our blog entry for today, we are going to try and get some dinner.

In no way, shape or form am I giving up on Kaden, but after today's news, we are starting to feel very sad. We both are still praying and want Kaden to pull through this tomorrow, but we also don't want Kaden to have to suffer if there is no way he can survive. I know this has been a very difficult road for lots of us, but no matter what happens, I will never forget the time that I got to spend with Kaden everyday in the NICU. I hope everything goes well tomorrow and we can move on to the next step...surgery! I'm really praying that Kaden can survive and adapt to the change over from ECMO to the ventilator, so that he can get well enough to have his surgery. Then they can get started on his left lung to assist with getting rid of some of that CO2. Now is really the time that Kaden needs prayers from around the world. He needs God to step in and heal his lung so that he can do well tomorrow.

Grandma Mary, Grandma Debbie, sister Jessica, and brother Logan came to the hospital today. Both grandma's got to come in and see Kaden. Logan is still stuffed up with allergies, so we didn't want to bring him in because of his sniffling. I feel so bad for Logan. He really wants to go in and see his little brother. Jessica didn't come in today. She is really hurting bad and it breaks my heart. Brother Christopher has called about 10 times today to check on his little brother. Christopher is with his dad in Sacramento, but is very worried about Kaden.

I'm sorry that I don't have good news to tell everybody. I wish I could have posted a picture of Kaden with no canulas in his neck and his levels sky high. We will see how it goes tomorrow. Just pray that everything goes well. Kristi and I are going to get some food and try and relax as much as possible before our long day tomorrow.

We love you all and thank you all for your continued support of us and Kaden.

BELOW IS KADEN"S BIG BROTHER LOGAN> LOGAN IS SO PROUD TO BE A BIG BROTHER> HE LOVES HIS LITTLE BROTHER KADEN.

31 comments:

  1. Craig and Kristi

    My heart goes out to the two of you right now. I have been praying for Kaden since day 1 and I will continue to pray.He is a little warrior and I have faith that he can pull through this.

    When my son Owain was fighting CDH some of his Doctors didn't give us much hope. They practically gave up on him.He proved them wrong! Today he is a happy 14 month old running around and getting into anything and everything.Never give up hope. Sometime the Doctors don't know everything.

    Kaden sweetie keep fighting!
    We all praying for you!

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  2. i don't even know what to say except that we serve a God who is not surprised by today's events and who CAN heal kaden. i have been trying to respond to your previous blog entry all day but my computer kept acting up. i finally got it to work only to have the page refresh and see your new pain. i am so sorry that you are hurting. there are so many that hurt right there with you although i know it's not the same. matt and i are sitting here with tears flowing down our cheeks. i have to believe that we are going to witness a miracle tomorrow. we are praying so hard for kaden and for your family. please know that we are thinking of you tomorrow and are with you in spirit. do not give up yet....God is a God of miracles.

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  3. Praying for strength for your warrior that he can overcome today and tomorrow will be a new day! They tried trialing Ian off ECMO one day and it didn't work and the next day he successfully came off ECMO (however he had surgery while on ECMO). Circuit changes in ECMO is very hard on a baby and can set them back, so praying Kaden is strong enough to come off tomorrow. Praying for Kaden's miracle and that your entire family is surrounded by love, strength and hope for tomorrow. Kaden, you can do it. Show those doctors' your Kung Fu skills and win this battle tomorrow.

    Thinking of you, Tracy - Ian's mom from Cherubs

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  4. oh kristi and craig.. i am sitting here with tears on my face because I remember feeling how you are feeling now. I am praying so hard that Kaden shocks those doctors tomorrow. He and God are in control, not those doctors!!! I am meeting up with Marion tomorrow and we will pray together for you both. We love you and know that Kaden can beat CDH because God is in control. I hope that you are able to find some peace/rest/ comfort tonight and will be praying for that also. Good luck finding/eating some food. I remember not eating on the rough days because I just didn't want to/couldn't. Many prayers, hugs, love, etc coming your way from everyone I know!!! I will also have Max whisper some good pep talks to Kaden tonight to prepare him for tomorrow.

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  5. Hey you two, As soon as I posted to yesterday. I saw your update. My heart goes out to all of you! I cannot imagine the emotional rollercoaster you must be on. I am praying for all of you and you are constantly in my thoughts. I am comforted to see all the support you have. Stay strong and leave it in God's hands. I wish I could be there to just be by your side and take some of the stress you two are under away! I will be praying and waiting to see the blog tomorrow saying Kaden is doing well!!!! We love you guys!!! Give Kaden a kiss for us!

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  6. Kristi and Craig,
    Shane and I were so happy to get your text that Kaden was doing well off of ECMO earlier today. I was so excited to come and see him. When you told me not to come, I started to pray in my car. We are praying that God gives Kaden the strength he needs for tommorow. I am begging him for his mercy. I am praying for Kaden's miracle. We love you!!!

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  7. Hey Kristi. Know that I think Kaden has been sent here to stay with you guys for quite some time. I pray that he won't be one of the young souls in heaven. I had already typed that all in when I checked your blog... but I love you!

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  8. I am so sorry that you had to endure today. My heart goes out to you both. Always remember that miracles do happen and that his fight is not over until Kaden says so. I believe in the power of prayer and know that God had a plan for each and everyone of us. Try to get some rest tonight; I speak from experience, tomorrow will be a long day no matter what the outcome. Much love and lots of prayers coming from Atlanta. If you need anything, please do not hestitate to call me.

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  9. I will be praying for your extra special 'wee fighter' today - from Scotland.I hope Kaden does great today and suprises us all.
    Gil (Kaden B's mum)x

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  10. Hi Kristi and Craig,

    So sorry to hear that the off-ECMO trial didn't go so well. Don't give up hope though, Kaden is a fantastic little boy and your love will give him strength to continue fighting. We had a lot of ups and downs with Alina and when we tried to move onto the next stage and she couldn't, we felt so depressed. But these little ones do things in their own time and we are sure that Kaden will surprise us all. We are praying for Kaden's lungs to expand some more so he can come off the machine.
    Hugs,
    Ingrid, Alex & Alina

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  11. Hello Guys,
    I am sorry to hear about the hard day.. but keep fighting and Kaden will too. It must be soo hard to watch your child go through all this and not be able to stop it. I am always thinking of baby Kaden and it breaks my heart to hear him struggle. I will continue to pray for him and will light a candle for him. U all take care of yourself too!
    Hugs,
    Joanna(cherubs)

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  12. i'm so sorry but i'm not giving up hope on Kaden either. i will keep praying super hard that he can fight and get off ECMO successfully. hang in there..
    Joanne

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  13. We just got to reading this, we hope that Kaden does well today.
    We are sending all our love and prayers!
    Be strong little Kaden!
    Big Hugs and best wishes,
    Love,
    Sheryl

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  14. Everyone at CHERUBS is praying for Kaden and all of you today. Whatever we can do, we're here. ((((((((((((((((hugs & prayers)))))))))))))

    Dawn

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  15. Dear Craig & Kristi,
    I've been checking in everyday and Momba has also been filling us in to what's going on with Kaden. We have been praying that all goes well. I wish we could be there by your side. Hang in there as God knows what his plan is. Grandma and Grandpa "D" are looking down on him and the rest of you and your family. Love, Aunt Denise and Uncle Doyal

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  16. Craig, Kristi and Kaden,
    Pray Warrior (both CDH and non-CDH) are uniting all over the world for sweet baby Kaden! Never doubt - for one second - that Kaden's name isn't on someone lips in Prayers to God. He's such a strong fighter and we are lifting him up to God, the healer of all.
    Love,
    Leigh Creekbaum
    mom to RCDH, Grayton Creekbaum 5/9/08 - 6/22/08
    Grayton was crowned "Queen of ECMO" by the head nurse because she went through at least 6 circuit changes, the most Children's Hospital of Birmingham had ever encountered

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  17. Really been following your story/journey with Kaden. I check on him several times a day and I have continued to pray for your family. I am hopeful God will work miracles on Kaden and he will make it through these obstacles.

    Praying from TTW (October 08)

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  18. My thoughts are with you all today! Praying for Kaden that he is strong enough to get off of ECMO.

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  19. You are in my thoughts and prayers as you face these oh-so-difficult days.

    Bethany

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  20. I am saying prayers for you Kadan. You are a strong boy and you can beat CDH. You show'em who's boss. The pictures of Kaden are gorgeous. He is very handsome. I can't wait to watch him grow-up through this blog. In 18 years he'll be going to senior prom, and I look forward to that picture.

    God Bless all the CDH babies/families.

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  21. I just started following your blog- and my prayers and love go out to you and baby Kadan!

    Be strong Kadan!

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  22. The Smith family is praying hard for you all and baby Kadan! We all hope he can kick this CDH in the butt! There is HOPE!!

    With LOTS of LOVE,
    Jaime, David, Reggan, and ^Ryann^

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  23. Stay strong. It took my daughter several trials to come off of ECMO over the course of three days. He is simply working on his own timeline. We will uphold Kaden in prayer tonight as we do each night. Praying that his strength will help him to overcome this obstacle.

    Love,

    the Miles Family

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  24. I have been trying to reply to this entry all day, but for some reason, my computer at work wouldn't let me. I wish I had words to take away any pain you are faced with. Our God is a sovereign God. I know he's been quite busy hearing everyone's prayers about baby Kaden. He's a fighter! Your strength gives us strength.

    Love,
    Stephanie
    Brooke and *Kamryn's Mommy

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  25. All of our thoughts are with Kaden. Big hugs and lots of love from North Carolina.

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  26. Saddened by the news, but with high hopes that everything will get better.
    Praying and thinking of you every day...

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  27. We are praying for Kaden. Don't give up and try to stay positive even when things aren't going good! CDH is definitely a roller coaster and Kaden is allowed to have 1 bad day. From now on he is going to keep fighting and beat CDH. He is a very strong lil boy he just needs a little more time.

    Hugs,

    ~ Carla

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  28. Lots of love, prayers, hope and hugs to all of you.

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  29. Our thoughts and prayers are with you during this difficult time. I check the blog several times a day, and hope you continue to have faith and remain optimistic. We hope Kaden had a better day today. Certainly he has many people praying for him. Bless little Kaden and his loving family, Mike & Kathy Lett

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  30. Prayers from our family to yours. It's hard to find words to express the emotion that we can feel reading your recent entry. So, we'll do just what you've asked...to pray.

    The Cieszko Family (Chris, Alison, and Davis Michael Cieszko)

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