Today has been one of the emotional rollercoasters for me. It started off really good--we went to see Kaden this morning and his color was really pink and his stats were where they needed to be. He was making urine (still could make some more), and looked a little less swollen. Around two o'clock the pulmonary doctor came in to talk to us about putting a scope down his trach tube to get a look at the air sacs in his lungs and to see if she could flush out some mucus. I guess I was expecting to come back and them to tell me that they had gotten alot of mucus out of his lungs and it would help get his air sacs back open, but that was not the case. She said she did see alot of mucus--I am crushed :( I don't know if I am expecting to much, to fast, but I feel like we are so under the gun to make progress, that if it isn't made quickly that they may tell us there is nothing more they can do. Dr. Liz said no matter what we should have a "sit-down" meeting with all the doctors to discuss his condition--that in itself terrifies me. I don't know if I want to discuss it. I just want him to improve every day and I don't want to hear any negatives. They know he has lungs from the x-ray that was taken on Friday when he was born, it is just about getting it to open back up. I just feel so helpless, and am trying to stay positive, but I feel myself crumble at any news I don't consider to be an improvement. They must be letting him wake up a little bit because we can see him move his chest and his hands and feet a little. I would give anything just to be able to hold him.
The nurses and doctors here at UCSF have been nothing short of fabulous to us and Kaden. We do feel like he is getting the best care possible and they are doing all they can for him. They are very compassionate and caring people. I was also discharged today, and they had no extra room for us so Craig & I are sleeping in the waiting room tonight. At this point I would sleep on the floor if I had to--we cannot be far from the hospital and it takes to long to get here in an emergency from Fairfield.
Please, please, please continue to pray for Kaden's lungs to start working. Everything else is working, and it is so frustrating that this seems to be the only problem that he has (albeit a BIG ISSUE--functioning lungs). We really need his air sacs to start opening...
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Remembering Uncle Frank
10 months ago
Kristi I pray for your little boy! I pray for more lung and the air sac's to open. I truely do know how hard this is. It's easy to say but harder to do, but stay strong. The dr's aren't always right. While Kristen was on ECMO she had kidney failure, and they told us that she would never pee again. The next day she pee'd. Miracles happen everyday!
ReplyDeleteKristi! I have been checking your blog like every hour or more. Hang in there. I was hoping you wouldn't read my post from yesterday because I was so down last night. Thanks for your encouraging words. I am so thankful to have you in my life and HATE that Kaden is going through all of this (but it did bring me you...) I really hope that he begins to make baby steps forward. I remember feeling like Maxton wasn't improving and so worried that the doctors would tell us the same but everytime I would get worried he would do little things in the right direction. ( I still believe that the reason he passed was from bleeding issues and that we will find out he had a blood disorder in addition to his CDH.) Hang in there and know that you are doing everything you can for Kaden, and that KAden is doing everything he can to stay here with you... I know you know that, but sometimes it helps to be reminded. I am praying for some lung function improvements. Don't let those doctors get you down.. these babies have a mind of their own and do things in "Kaden time". Much love and more kung fu chants from Nashville. :-)
ReplyDeleteLove and Prayers
Ashley
Kristi and Craig,
ReplyDeleteI am checking your blog every chance I get to get an update. Shane and I are praying for your sweet Kaden. I saw these scriptures and thought I would share them with you. They are the ones I read when Nayeli was at UCSF.
Psalm 59:16
But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.
Psalm 121:1-3
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber
i just want ya'll to know that we are praying multiple times every day for you guys. i pray everytime that i open your blog that i will get to witness the miracle of his little body healing....and i believe that i will! know that he is loved by many and is being lifted up in prayer.
ReplyDeletei just wanted to mention that we've been staying at a ronald mcdonald house while our preemie is fighting his battles in the nicu... its been a blessing to be able to stay so close to the hospital. you should ask your social worker about it. its a wonderful, wonderful organization. best of luck to you and your beautiful son (a friend from tww) here is the link http://www.ronaldhouse-sf.org/stay.asp
ReplyDeleteRichale
Hi Kristi and Craig,
ReplyDeleteWe feel your pain, we also wanted Alina to make progress much quicker than she was. One thing we learnt from our experience is patience. Kaden will tell you when he ready for the next step. We were told that babies one day just turn the corner, and we are sure Kaden will in his own time. The great news is that there was lung tissue on the xray- it's extremely encouraging actually, so do try to stay positive.
Ah, yes, look into Ronald McDonald. It was a life saver for us, being 5 min from the hospital. As you probably know, you will be in hospital for a few more weeks and you need to take care of yourselves for Kaden's sake.
We are praying for you and your sweet little Kaden.
Hugs,
Ingrid, Alex & Alina
I will absolutely pray for Kaden all day today. I know what it is like to be where you are right now, and I wouldn't wish it on anyone. Take care of each other and take things as they come. Don't try to think too 'big picture'- for me anyway, it would send me into panic mode. That's especially easy to do when you're getting no sleep at all. Fight, Kaden, fight!
ReplyDeleteKristi,
ReplyDeleteI am thinking of you always. Do not think of the sit down with the doctors as a bad thing. Jason and I had these talks along the way with Addison. For us, they wanted to make sure that we were aware of her condition and to expain the treatment options going forward. You know that God is with you as well as many prayers from around the country. Little Kaden will be our little miracle baby!!!
Thinking of you and praying that Kaden's lungs show improvement and you start to see air sacs expand. Fight Kaden fight! Take each day as they come, even hour with Kaden, for things can change so quickly. Looking forward used to bring me down and very upset, you have to take each day and pray for baby steps in the right direction. I would look into a Ronald McDonald House near the hospital or ask if there are hospital affliated hotels (hostpital discount) within blocks, so you can take care of yourself too.
ReplyDeleteMuch love, Tracy - Ian's mom, born with a LCDH on 4/3/04
Keeping you all in continued prayers. Open up little lungs, you can do it!
ReplyDeleteLove,
Amy Miles
michiganmiles.blogspot.com
Praying for Kaden, his family and his medical staff and looking up where miracles happen...
ReplyDeleteWe are praying for Kaden faithfully, Kristi. I know how hard it is to sit by and watch your baby fight for their life feeling so helpless. Remember that these babies do amazing things every day and Kaden is no exception. If you need anything please let us know.
ReplyDeleteI know it is so difficult, but remain positive. You don't know that everything won't be okay in the end. Kaden's story doesn't seem different from other CDH babies who HAVE SURVIVED. It just is that dreaded rollercoaster and one second things will look bad and literally great the next. I have faith in him and in you guys.
ReplyDeleteWe're still praying for your sweet Kaden and his neighbor Collin. Hang in there!
ReplyDeleteLove & prayers from Kentucky!
Still praying for you, Craig and Kaden. Be strong! Much Love,
ReplyDeleteStephanie and Shawn
You have been on my heart all day and I just wanted to let you know I am thinking of you, big time! I pray that Kaden is having a good day and that you getting a break from all the stress, well at least a mild reduction ( I know you can't fully get a break yet). :-) I love you and will continue to pray for sweet Kaden and get Max to do some angel whispers to him.
ReplyDeleteAshley