Usually, Kristi does all of the updates for Kaden's blog. Today, she's really tired and worried about our Kaden. So Daddy is giving the update today. After being discharged yesterday, we did end up sleeping in the waiting room in the NICU. It was four doors down from where Kaden was at, so that was nice....but the pull out couches were not too comfortable. Kristi got hardly any sleep at all, and I slept in between the slams of the bathroom door right outside our door. I didn't even care...as long as we were close to Kaden. Before we went to bed, we checked on Kaden and told him goodnight. His stats were pretty good (good heartbeat/blood pressure), and his O2 levels were in the 80's.
We got up this morning around 8:00 am and immediately went to check on Kaden. As we entered the NICU we noticed that Kaden's stats were not too good. His heart rate was good, but his blood pressure and O2 levels were not so good. His O2 levels were down in the high 50's low 60's. The nurses and doctors were trying to figure out why his stats had dropped down so low. The surgeon was tinkering with his ECMO canula because they thought it might have a slight kink in it. They were able to get his blood pressure back under control and his O2 levels into the mid 70's to low 80's. Today, Kaden's stats were pretty much stable with great heart beat, good blood pressure and O2 levels staying anywhwere from 70-84. One of the doctors wanted to have a meeting with us at 10:30 am with the social worker. Kristi was very worried at that time. She immediately thought that they were giving up on Kaden. Kristi broke down crying and asked Dr. Liz if they were having the meeting because they were giving up on Kaden......Dr. Liz said, "Absolutely not"!! She just wanted to get together to talk about the game plan. So Kristi and I went downstairs to get some breakfast and coffee prior to the meeting.
We met Dr. Liz and our social worker Stephanie at 10:30 am. Basically, we went over where Kaden is at compared to last Friday. We discussed what needs to take place in order for Kaden to get off ECMO.
Number 1 issue is to get the swelling down. So most of us know that ECMO causes a great deal of swelling. Kaden is very swollen right now. It really breaks my heart to look back and his pictutes from Friday compared to now. I knew that he would swell, but had no idea that it would get as bad as it is. I feel so bad for my little boy. It looks like he is in so much pain. They are giving Kaden lasix every 4 hours to try and get him to urinate some of the excess fluids off. His urine output is improving, but he has a lot of fluids to get rid of.
Number 2 issue is to get his right lung to open up. They have been giving Kaden breathing treatments every 4-5 hours which he loves! Everytime the respritory specialist comes in to do Kaden's treatment, his stats go up with O2 levels in the 90's. They are still flushing his lung/tube with saline solution, then they try to suck out the bad stuff. They are getting some mucas, as well as old blood clots. They are hoping between getting the fluids off and the lung treatments that they will both help him.
The team of Doctors pretty much have said other than that which they are doing now....the rest is up to Kaden. He needs to start helping them to rid the excess fluids. If things are not any better by Firday, they said we will have to talk again. I have really been trying to stay 110% positive for Kaden, my wife, and my enitre family. I will continue to stay positive until the end no matter what happens. Every day we face different challenges. Some of these challenges are very hard to stay positive, but I must do this for my son and family. I know that Kaden and our family has a world of support and prayers coming from all over the world. I thank everybody for this.
On a brighter note...they are letting Kaden's paralysis meds wear off a little bit. So we get to see a small amount of movement from his little body. I am loving the ability to feel his fingers move on my hand, or see his big Fred Flinstone toe wiggle as I touch the bottom of his foot. It's nice to see his chest and abdomen rise and fall. These are the first movements we have got to see since he was born. They are letting him move around a little more to see if it will help him get rid of some of the excess fluids. If he starts moving too much, they have to give him some more meds. They don't want his ECMO canula coming out. Kristi and I have been sitting in the NICU with Kaden pretty much the entire day. It's been nice to spend the day with Kaden. We left Kaden during shift change and to update the blog. The social worker placed us in a different room tonight, which is still on the same floor as Kaden. We have two couches that pull out into beds. Kristi is laying across from me as I type taking a nap. She really needs the rest, so I will let her sleep. Shift change is over, so I wil be heading back in to be with Kaden until later on tonight. Myself or Kristi will either update again tonight, or tomorrow...depends on what's going on with little man.
Kaden is a fighter just like me. Kaden will not give up. Kaden will fight until he pulls through this. He knows that he has many many people praying for him and supporting him.
I just want to thank EVERYBODY again for everything that you have done to support us. Thanks and talk to you later. CRAIG KUEHL---Kaden's daddy
******Information regarding Baby Collin******
Baby Collin had his surgery yesterday afternoon and is doing very well. His parents Tim and Hayley have been coming everyday from Concord to see their little CDH warrior. Collin is being weened off the paralysis meds and is moving around a lot. I saw his little open eyes earlier today. Just wanted to give you an udpate.
PLEASE KEEP THE PRAYERS COMING FOR KADEN ALEX KUEHL
Hi Craig, Thanks for the update. I have been thinking of you guys all day. Kaden is such a cutie- fish lips and all! It's amazing what a strong will these babies have. I'm glad you all are spending so much time with Kaden. I know he can tell you are there. I know that this is incredibly hard for you all but know that we are all praying for you and feel like Kaden will be the miracle baby we have all prayed for. He has so much love surrounding him and I know he can feel it. I remember the day the doctors told me that they were doing there part and that it was up to Maxton to do his. I was so very nervous, but that day he made the improvements he needed for that day (and for several others after that). I know my story doesn't have the desired ending, but I pray that yours will. I just wanted to say that I love you guys and am with you every step of the way. If you all need someone to talk to, please call. I'm sure you are getting tons of offers, but I had to throw that out there. Much love and many prayers!
ReplyDeleteAshley, David, and Angel Maxton
(I'll let Max know to encourage Kaden to pee like a champ and to get the right lung doing it's job... also to let mommy and daddy and the rest of the fam see some improvements and get some rest!)
Craig,
ReplyDeletethanks for updating. I have been checking all day. Shane and I stayed in that waiting room too. I didnt want to leave Nayeli so we snuck in one more night. I took a sleeping pill so I could sleep but that didnt work for me.
Shane has friends from work praying for your little guy. We are praying for Kaden. Give Kristi a hug for me.
Love you guys!
I have been thinking of sweet Kaden all day. Kaden can feel you and Kristi with him and knows that you are cheering him on and love him so much. Fight Kaden fight...it is up to you sweet boy to make those baby steps! Praying for lung improvement in the days to come and that he pees like a champ to help rid some of his excess fluids. That is so wonderful you are starting to see some movement from Kaden. Try to get some rest tonight and hopefully, tomorrow will be a good day for your warrior.
ReplyDeleteMany prayers for your entire family. Much love, Tracy - Ian's mom
thanks for the update craig. i just have to tell ya'll that i think kaden is the most beautiful child i have ever seen. i have been checking your blog all day waiting for an update and praying for you guys. matt even walked in earlier and asked if there was an update on kaden. i'm not sure why (since we've never met) but we feel a huge connection to your family and to your precious baby boy. know that there are people out there that are loving on you guys from afar and praying harder and stronger than you could ever imagine. i believe that God is being hammered right now with prayers for kaden and i trust that He will perform the miracle we all so anxiously await. i'm so glad that you got to spend time with kaden today. i know that he senses your presence and that will only make him stronger and give him greater peace. he is a fighter and he has tons of people pulling for him.
ReplyDeleteCraig,
ReplyDeleteThank you for the update. Shan and I have an open prayer for you guys and Kaden. We love you guys so much and hate to see you go threw so much pain.
You can put your trust and throw your burdens to God.
Ps. 55:22: "Throw your burden upon Jehovah himself, And he himself will sustain you. Never will he allow the rightous one to totter."
It important to have faith in GOD and his holy spirit.
Hebrews 11:1: "Faith is the assured expectation of things hoped for, the evident demonstration of realities though not beheld."
2 Cor. 4:13,16: "We too excercise faith...Therefore we do not give up, but even if the man we are on the outside [our physical body] is wasting away, certainly the man on the inside is being renewed [or given fresh strength] from day to day."
This is not what GOD intended but hope is given.
Rev. 21:4,5: "'[GOD} will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.' And the one seated on the throne said: 'Look! I am making all things new.' Also he says: 'Write, because these words are faithful and true.'"
I understand that this entire experience is difficult, but remember GOD gives the tired one power.
Isaiah 40:29 "He is giving to the tired on power; and to the one without dynamic energy he makes full might abound."
Kaden has prayers from all over world. People following the command as indicated in Jas. 5:16: "Pray for one another."
1 John 5:14 "This is the confidence that we have toward him, that, no matter what it is we ask according to his will, he hears us."
And with your prayers:
1 Thess. 5:17, 18: "Pray incessantly. In connection with everything give thanks."
GOD understands the pain of watching a child suffer as his did with his only begotton son JESUS Christ.
Please tell our precious baby that we love him and we love you also.
Try to get some rest!
Than kyou for updating. You guys have been in my thoughts and prayers all day. I have been in your shoes and the best thing to do is to remain positve and spend as much time with him as you can. He still has alot of fight left in him and will be one of the miracles.
ReplyDeleteCraig,
ReplyDeleteWe are praying for Kaden everyday. He has touched so many lives and he has one heck of a support and prayer team behind him and you all. While I have prepared myself to walk in your shoes in just a couple short months, I still can't get my arms around what you must be going through right now. I can tell you are an incredible husband and dad and Kristi and Kaden are blessed to have you in their lives. Stay strong and positive buddy. You all are in our thoughts and prayers daily.
Shawn
Kamryn and Brooke's dad
Hi Craig,
ReplyDeleteThanks for the update.. I have Kaden and your family in my thoughts everyday and we are pulling for him. I know how difficult this must be for all of you but Kaden knows what a an amazing family he has and is fighting hard to stay with you! All of u are in my thoughts and prayers!
Craig,
ReplyDeleteWe're all following your story here very closely. I'm 100% sure Kaden's got the same positive energy as you guys and this is going to help him get through this! You'll be amazed what's round the corner when Kaden gets there - we're sending our positive thoughts and energy that Kaden keeps making those small steps.
Our best wishes,
Alex, Ingrid and Alina.
I have been and will keep on praying for you guys and Kaden. Bless your hearts...I know this is such a difficult journey to be on.
ReplyDeleteJust stopped by to check on everyones favorite little man! Continuing prayers for Kaden and your family!
ReplyDeleteI will keep up the constant prayers for baby Kaden! The swelling is very difficult to see, but hopefully he can come off ECMO soon, when he's well enough.
ReplyDeleteHang in there Craig. You guys have alot of support. Our Church is praying for you.
ReplyDeleteGreat to hear from Dad! Hang in there with Kaden. The fluid retention thing is such a nuisance. However, I'm so glad he's still tee-teeing on his own! This is really good news as Grayton had to be connected to a dialysis machine because she quit going on her own.
ReplyDeleteAs far as his lung opening up is considered, just be patient with him. For what it's worth, in my heart, I feel like Kaden's going to be fine. I really do.
Praying for you continually!
Leigh Creekbaum
mom to Grayton 5/9/08 - 6/22/08
thecreekbaums.blogspot.com
Thank you for the update, you all have been in my thoughts all week! What a little fighter you have and such an adorable one at that. I will keep Kaden and Collin, and both their families, in my prayers!!
ReplyDeleteWe are praying for you that Kaden will surpass the doctor's expectations. This is such an incredibly scary time. Be strong and know that we're thinking of you every day.
ReplyDeleteThank you for the update. I will continue to pray for pee and his lungs to open up. Rest in between your visits with him. If you have children's books around I am sure he would love to have you read to him.
ReplyDeleteLove, hugs and prayers,
Amy Miles
michiganmiles.blogspot.com
Mom to ^Faith Grace Miles^
Hi Craig,
ReplyDeleteThank you for the update! Kaden has constantly been on our minds! We finally found a way to have internet here in Cincinnati, we broke down and purchased a broadband card. Now, we can get it anywhere! We're so glad because we want to stay in touch with you guys!
We're praying for you guys and Kaden everyday! We wish you an uneventful weekend...unless it's a good event! :-)
Hang in there and get your rest!
Love and prayers,
Sheryl
Kristi and Craig,
ReplyDeleteWe are praying for Kaden and hoping, with every ounce of our strength, that he is making progress. Like the Little Engine That Could, it is a tremendous fight to make it over that grade but we continue to believe that Kaden "CAN DO IT". It is heart breaking to see him struggle but we remain constant in our belief that he can make it over the top.
Lord, don't tell Kaden but if you could give him a little push for all of us?
We Love you Kaden!