Friday, January 30, 2009

Too many tubes!

Today was tube day! When I arrived at the hospital I learned that his lung was still collapsed and didn't show any signs of improvement. The doctors decided to do a better ultra sound. The results showed a large amount of fluid, so they determined he had a pleural effusion as result of the surgery trauma. They prepared to insert a chest tube by giving Caleb some medicine to put him under, but Caleb didn't respond very well. Even after increased doses, he never did fully relax! He also had a histamine reaction to it which made him break out in a rash all over his body. When he was finally relaxed enough, they made a small incision in his side and place a chest tube between his ribs and into his lung to drain the fluid. He lost 600 ml's of fluid right away! Another chest x ray was taken to see how his lung looked, and it looked so much better... but.... the x ray also showed that the other lung was doing the same thing! So sweet little Caleb has chest tubes placed on both sides. He'll likely have them for around 3 days until they stop draining. His lungs look a lot better though! The surgeons have been down to visit him multiple times and, they feel so bad about the set-back. Caleb is such a little trooper!
Today I went to a 2 hour class to be trained on his g-tube, and started taking care of his tube at the bedside. The g tube site is in good shape and seems to be healing well!
Caleb's sweet face looks much better today! No more chipmunk cheeks! He was tickled with a surprise from his buddy and he loves his BYU Blanket from his valentine!




Thursday, January 29, 2009

Chipmunk

Caleb decided that since he has never been to the circus, he needs to create his own in the hospital! Today when I arrived at the hospital, I could see that there was commotion going on. Caleb wasn't doing very well getting off of the ventilator, and after a chest x ray it was discovered that his right lung was totally collapsed. After taking his blood gasses and seeing that his carbon dioxide levels were not good-- we had a little parade back to the PICU! Caleb also had the IV's in his neck infiltrate so his neck and cheeks are so swollen- he looks like a little chipmunk!
So now everything related to Caleb's surgery is on the back burner and his lung have become top priority. They think the collapse is a complication from the surgery and that he has mucus plug that isn't allowing it to re inflate. When I left today, his lung hadn't improved and his tummy was really tight because it's so full of air. It's too bad we can't just transplant the air from his belly into his lungs!
Hopefully tomorrow we'll see some improvement! We love you Chipmunk Caleb!

Wednesday, January 28, 2009

Post surgery pictures

Caleb was stable when we left the hospital tonight. He is still on the ventilator, but was was doing well! Good night sweet boy!

Surgery adventure

(writing from the hospital) Caleb had an adventurous day today! His surgery was delayed because it took over an hour to place the IV, so the poor little guy finally had it placed in his neck! One IV went bad during surgery so they placed another one on the other side of his neck. He looks like he could be a line-backer with his swollen little neck! We expected the surgery to take an hour and a half, but it took 3 times as long. The end of Caleb's esophagus was in pretty rough shape, so the nissin procedure was quite complicated. His surgeon said they rarely see esophagus's in that condition,and he lost more blood than they they anticipated. The good news, it definitely confirmed that the nissin was the right thing to do because the damage was likely caused by reflux. The bad news, It was a complicated procedure and the g tube was placed a bit lower than the surgeon would have liked. As a result, the surgeon is worried that the g tube that is placed is going to impede his ability to empty his stomach. So, in a month after he heals, he is going to switch it for a different one that is smaller and will work better for a child in Caleb's condition. The good news, it only has to be replaced every year or so instead of once a month like the other one. The bad news, I can't do it myself, it has to be done at the hospital under anesthesia.
Caleb is stable now and has been settled in his room for the past couple of hours. He was able to avoid the PICU and is in a special room on the floor for trach/vent patients. He doesn't have a feeding tube attached to his face any more, and he's being so brave. The plan for tomorrow is to start slow feedings and do some testing to see how his stomach is emptying. Hopefully he'll have a cozy night and he'll feel good enough for some snuggling tomorrow! I'll post a few pictures when I get home!
We love you Caleb, We are so very proud of you!

Tuesday, January 27, 2009

Tubing

Caleb is going tubing this morning! - G Tube-ing that is.... We check in for surgery at 8:45 AM. His surgery is at 10:15, and they think it will take about an hour and a half. He is also getting a nissin where the surgeon will tie a part of his stomach around his esophagus to tighten it up. Hopefully this will help Caleb not to throw up so he can't aspirate and get pneumonia as often. This day came little bit too fast since it seems like we just barely came home from the hospital. We hope that with these surgeries behind us, we'll be able to spend more cozy time at home with one another, and get ready for a healthier Spring and Summer!
Dear Caleb, Thank you for your courage. We will be praying for you! It will be so much fun to kiss you with no more tubes and tape on your face! I love you so VERY much!

Sunday, January 25, 2009

Touched

I've been thinking a lot about touch. For Caleb, touch is largely how he experiences the world. I've helped him splash the water in the bath tub. I've put fall leaves in his hands and helped him crunch them. I've brought snow inside and helped him build a little snowman on a cookie sheet....I've wrapped his arms around my neck and held them there when we've needed a hug...I've put his hands on my cheeks and let them melt to my skin. He loves it when I rub his feet, rub my face in his hair, and rub his chubby tummy. Caleb loves to be touched!
Mitchell also loves to feel my skin. Whenever he sits on my lap, he sticks his arm up my sleeve so that he can feel his arm resting on my arm. When he can feel me, he can be still.
Josh and Matthew also love to be touched. Sometimes they want to be westled instead of cradled. Sometimes they prefer a high five, especially if their friends are watching. But they thrive in being hugged, loved, and tackled to the ground!
I think that we all need to be touched. Sometimes I need someone to hold my hand and help me experience the world. Sometimes I need the warmth of an embrace. Sometimes I need to feel someone close so that I can be still.Thank you my sweet boys, for touching my heart every single day!

I know that there are two hands that are always inviting His embrace...Two hands that bear the marks of His redeeming love...two hands that gently lead me through life experiences I don't always understand...two hands that cradle my heart and help me to be still.
"He's reaching down, I'm reaching up, and somehow I feel- the Maker's touch.
(please turn off my playlist at the bottom of the screen)

Thursday, January 22, 2009

Sunshine

With cute chubby fingers
and a tube in his nose
Caleb shares sunshine
wherever he goes!
Dear Caleb, Thank you for warming my heart right up on a cold Winter day! I love you!

Friday, January 16, 2009

Just love

Dear Caleb,
I don't have any pictures of you today. I don't have any updates on your health...But, I do want to tell you I LOVE YOU... More deeply than I ever thought possible. I'm coming to find you and snuggle your sweet little self until it's time for bed!

Thursday, January 15, 2009

Bean Bag


I've been trying to figure out how to get Caleb a bit more comfy in his crib... The last few days I've been putting a bean bag in it at night and it works great! I put a blanket over it, then tuck him right in! It's made it easier to position him and has helped him to be cozy for the whole night long! Hooray for bean bags!

Tootsies


A dear friend gave us these adorable pocket warmers for Christmas! You put them in the microwave for 20-30 seconds, then put them in your pockets to keep you hands warm. Somehow they keep disappearing...! They mysteriously show up in Caleb's bed tucked under his little tootsies to keep them warm at night.
Okay... maybe he has me for his accomplice--- we're good partners in crime-- Plus I know I can count on Caleb not to spill the beans!

Peeking!

Caleb is so happy to be home! We've adjusted quickly to some new routines, but we're just so thankful to be all together again! We've been using the ventilator at night most of the time. Some nights it seems to make him unhappy, so we just turn it off and put him back on his trach mask. Caleb's lungs sound much better, and he's tolerating his continuous feeding well, too!
He got a new crib toy for Christmas from his aunt and uncle! I tie it everywhere so that Caleb can have something fun to look at! Sometimes Caleb pretends like he's sleeping...but sometimes I catch him PEEKING at the spread of colors, ribbons, and toys attached!



Thursday, January 8, 2009

Earth Angel


Jeffrey R. Holland: ...not all angels are from the other side of the veil. Some of them we walk with and talk with—here, now, every day...

I have sweet moments with Caleb when I know that I live with an angel. Even when Caleb is so sick that he can hardly move...he still has an miraculous effect on people. We usually spend most of our time in the PICU where Caleb can't have many visitors. However, during this last hospital stay, I was so touched by the visitors Caleb had...visitors from within the hospital. Many doctors, residents and nurses who have met Caleb before, would come by day after day to check on him, stand by his bed for a moment, and feel his sweet little spirit. Caleb couldn't walk or talk with them- He touched their hearts... and they felt it. I felt it. One told me she had never been so touched and inspired before. I know. Me too.
This last visit was 13 days long. Nine IV's later...and Caleb still shines. I live with an angel, whose feet have never left the ground.

Wednesday, January 7, 2009

A birthday wish...

Birthday wishes really do come true! Caleb came home from the hospital yesterday just in time to celebrate! My heart was a little bit tender because I didn't have a chance to prepare for a celebration...but some sweet sisters in my ward brought over dinner with birthday paper plates, festive food, special drinks and a birthday cake with a #4 candle on it! We were just tickled!! We were also surprised with a special gift...! We were so touched, incredibly humbled and completely excited!!! Happy birthday sweet Caleb! You are so precious to us!

Preparing to come home from the hospital!


Some festive FUN


It's time to celebrate!

The best gift of all...being together!


Four years old!

Monday, January 5, 2009

Hospital Holiday day 12- homeward bound!

What would the best birthday present be for Caleb?.... COMING HOME! Right now the plan is to get him home sometime tomorrow! However the weather is horrible right now which is making it impossible for me drive home, so I'll be staying the night. Without me coming home tonight, it complicates our plans to get Caleb's room all set up with our home health care company. It's also going to be a bit tricky to have both Dallan and I in the car with Caleb when I'm here with one car... But if the weather cooperates and the planets are aligned, we'll figure out a way to get him home! Otherwise, we may bring him home first thing Wednesday morning! HOORAY! Today I also found out that Caleb is going to qualify for some nursing at home through a waiver program for trach kids!
Thank you for your many prayers for our little family. I know that Heavenly Father carefully considers every request, and we are truly humbled and grateful for the miracles that surround us! It is overwheming to be the recipients of so many blessings due to the faith and prayers of so many. With all of our hearts...thank you!
Our hearts are full as we head for home... Snowplows, may the force be with you!

Sunday, January 4, 2009

A Caleb sticker!


Today when Dallan picked up Mitchell from nursery, he was proudly carrying the picture he colored. When Dallan asked him what it was, Mitchell pointed to the winking smiley face sticker that his leaders had put on it and said "It's Caleb! One eye!!"
Mitchell misses his roomie and keeps saying: "Caleb come home from doctor...NO POKES!"

Caleb right before he came off of the EEG-- I couldn't resist...

Hopspital holiday day 11

We were so relieved to find out that Caleb was RSV negative... I had a hard time sleeping last night just thinking about more weeks in the hospital! I don't think I mentioned that Caleb left the ICU late Friday afternoon! We went to a special trach/vent unit so even after having a tough day yesterday, we were able to stay!
Last night Caleb had a couple of larger seizures, so they increased his phenobarbital dose by quite a bit. As a result, Caleb was super sleepy today. He came off of the ventilator just fine and had a pretty peaceful afternoon. Dallan and I finished our ventilator training today, and we even took Caleb on a wagon ride to show we could transport him with a ventilator. It was comical to see how much stuff we had to drag with us. We just needed a baton thrower and we could have been quite the parade! Hopefully tomorrow we'll begin to discuss a plan for coming home....




RSV negative!

I just called the hospital to check on Caleb's RSV test before I head up there to spend the day...
The results came came NEGATIVE! What a relief! Hopefully he'll start feeling better soon!
Here are a few snuggly pictures from yesterday




Saturday, January 3, 2009

Hospital holiday day 10

Little Caleb is always full of surprises! We came to the hospital for some ventilator training today, and within the first hour, Caleb turned blue at least 5 times! His secretions are really thick so the Respiratory therapist finally put him on the ventilator this afternoon. The therapist also took a sample of his secretions to test him for RSV. He thinks he could have picked it up since being at the hospital. I'm so worried about the possibility of RSV; last year we were in the PICU for an entire month with RSV before he was stable enough to come home. It was so hard on his little body. We probably won't know until tomorrow....cross your fingers!

Friday, January 2, 2009

Hospital holiday day 9

HAPPY NEW YEAR!
Caleb sends loads of love to you for 2009!
Yesterday was a pretty calm day at the hospital. All of the tests that were run for Caleb's fever came back in normal range. Caleb's shunt series came back normal as well. Usually shunts have lots of problems so we've been really blessed that we've never had any trouble with Caleb's in the 3 years he's had it! We reviewed the results of Caleb's EEG. Most of his seizure behavior doesn't record as seizures, which makes it difficult to medicate. The events that did show as seizures probably wouldn't be helped very much with medication unless we want him so medicated that he's sleepy all the time, so unless they keep getting worse, we're just going to keep our medications the same for now.
Dallan and I start ventilator training tomorrow and if all goes well we should be able to bring Caleb home on Monday or Tuesday. Just in time for his birthday! Dallan is going to spend the day with Caleb today while I catch up around the house and spend some time with our other cute little boys!
Wishing you a 2009 full of happiness and love!