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!

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!

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)

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!

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!

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!

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.

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!

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!

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

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!

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!

Hospital holiday day 7

Caleb has been awake all day today! All of his PICU friends and helpers have loved seeing glowing face and sparkly eye! Caleb is still hooked up to an EEG-he'll be hooked up for another day or so. Of course he isn't showing the computer any of his tricky moves, but hopefully we'll still get some good data. I haven't heard how his shunt series looked, but I'm assuming no news is good news. Caleb has had a fever today so tests are being done to see what the cause is. I consulted with a pediatric surgeon today about a Nissin/G tube surgery. Caleb's lungs show signs of chronic aspiration and the nissin would greatly help keep Caleb from aspirating anything he refluxes from his stomach. The surgery would entail wrapping a part of his stomach around his esophagus to tighten it up- then the g tube would allow us to feed Caleb through a hole strait into his stomach instead of the feeding tube through his mouth. I was hoping we wouldn't have to do this surgery, but I think it's in Caleb's best interest. Otherwise we just keep putting out fires without tackling the bigger problem. So far the plan is to hopefully get Caleb transferred to a trach/vent unit sometime tomorrow. We'll begin ventilator training which takes 3 days, and then hopefully we're on the road to home. The nissin/g tube surgery will likely happen at the end of January after he's had a few weeks to fully recover. The doctor suggested we bring Caleb home on a OJ tube (a tube that feeds Caleb right into his intestines, bypassing his stomach) so that we can avoid another aspiration before the surgery. The upside- we probably won't have to deal with Caleb spitting up. The downside- we'll have to have him on a continuous feeding and if the tube comes out, we have to have it put back in at the hospital. Luckily Caleb is always up for another grand adventure!

Companions

When Dallan and I were dating, I was also thinking about whether or not I should serve a mission. Any of you who know Dallan will understand why it didn't take long for me to decide marry him! I love my mission as a wife and a mother! Sometimes I feel like a special part of my mission is to be a companion with Caleb. We are great missionary companions for each other! We pray together, read together, and bear our testimonies together. We are usually side by side and don't feel quite right whenever we're apart. It is one of the joys of my life to help others feel his great spirit. He is a remarkable teacher, and he doesn't even need to use words. He is my senior companion, but he never makes me feel inferior. He is so gentle with me, even though I have so much to learn. He always reminds me about the things that are most important. He inspires me to be better, and he brings me closer to the Savior. I love him! Luckily, I know he'll never get transferred. He is my sweet missionary companion forever!

Hospital Holiday day 6

Since Caleb was born, we've been quite conservative about using technology for his care. I knew that having a trach placed would open some new doors for using technology to improve Caleb's breathing, but I didn't think we would need it. Yesterday I was feeling quite heavy in my heart about using a ventilator at home. Today I feel a little bit more empowered. I think when I hear the term ventilator my first thoughts are that you use them to keep a dying person alive by breathing for them. Caleb isn't dying. His health is actually improving since we brought him to the hospital. Choosing to do some partial ventilation at home, mostly at night, could improve Caleb's lung condition and may keep him away from the hospital. Having ventilator options at home could also shorten future hospital stays because we have increased capacities for complex care at home. The option we're considering is using some positive pressure to improve the quality of breaths Caleb is already taking on his own.
We've learned how to use many machines for Caleb's care. In the hospital it seems overwhelming, but once we're at home we find a rhythm that works for Caleb and our family. Today I told the team that I was willing to go the route of getting trained for home ventilation. Caleb doesn't have to have it at this point. But I think it would be a good tool for us to have. I'd rather learn now while we're in the hospital rather than another time or in a crisis situation. I explained that I knew they would give us a regiment to follow, but I wanted them to know that once we got home, we would decide if, when and how we wanted to use it with Caleb. Once I remembered that Dallan and I will be the ones who ultimately decide how we will use this tool, I felt more comfortable moving forward. I trust that Heavenly Father will help guide us so that we don't find ourselves down a road that we didn't intend to travel.
Today Caleb had a few adventures. He had a CT scan and a shunt series done. We wanted to rule out a shunt problem before we use medication to help control his seizure break through. He's also currently hooked to an EEG for the night so that we can gather seizure data. Usually his EEG's are highly abnormal and his seizure behavior doesn't show up as a "seizure" on the EEG. We'll get the results of his shunt xrays and EEG tomorrow. Then hopefully we can begin to address some of his aspirating issues.
Caleb is just so sweet...I can't resist those chubby cheeks, pudgy feet and fluffy hair. I could just snuggle him all day- even with all of those wires in the way. I just love this little boy!

Having a cozy rest...


A nifty new trach with a flex- extendor! Now we don't have to worry about his chubby little chin covering up the hole!

Getting all hooked up to the EEG

A cozy cap to keep the EEG monitors in place.

Hospital Holiday day 5

Today was a quite a day....When I arrived at the hospital, Caleb was still on his trach mask and was being prepared to be transferred to the floor! Once we got the the floor I visited with a pulmonologist who suggested that we not do a sleep study because it was obvious to him that Caleb needed some partial ventilation for his lungs sake. He encouraged us to consider ventilation at home as well. My heart was quite heavy as I contemplated what this means for Caleb's future. As the doctor and I were visiting, Caleb was having a difficult seizure/respiratory episode. After quite a few minutes I suggested the doctor bag him for a minute because sometimes that helps him at home.... apparently they aren't used to children needing to be bagged, so they quickly realized they weren't equipped to handle Caleb's level of care. I went to the cafeteria to grab some lunch and was paged over the loud speaker to return to Caleb's room. They were preparing to send Caleb back to the PICU and were planning for us to begin the process of learning how to take Caleb home on a ventilator. WHOA! I was feeling rushed into making a ventilator decision before I even had a half hour to process the whole idea. I requested to speak to the trach/vent specialist so I could have someone to talk it through with. She was so helpful and realizes that this is a difficult decision for us. I decided that we didn't want to move forward until we had some time to give it some careful thought. So 2 hours after being transferred to the floor, and we were headed back to the PICU. The doctor and nurses on the floor were so caring and kind, and they all hugged me good bye... I got a picture just to prove that we really did make it to the floor for a few hours! When I got back to the PICU, our friends down the hall had left us a treat and a note that said "welcome back Caleb." They were all sweet about our return and we even got our same room back! The next few hours were spent coming up with an appropriate plan for Caleb that we all felt good about. Ultimately I think we're headed toward ventilation, but for now I want to give Caleb some more time to show us how he is going to do. They are going to put him on a ventilator at night for the next few days to see if they notice a difference in his comfort level and the carbon dioxide levels in his blood. We'll also be consulting with neurology and GI doctors over the next few days to discuss additional options for Caleb's comfort and care.... I've felt the weight in my heart of making some difficult choices and of finding the right balance for little Caleb.
Caleb has so much courage. I know that a part of his mission includes these tender times at the hospital, and I'm so blessed that I get to be a part of sharing his influence with others. It is a privilege to be his voice- I am so humbled to be his mother...I LOVE YOU Caleb, more that you will ever know...

Caleb on the ventilator


Now he just needs a trach mask

Proof that we really did make it to the floor, even though it was only for 2 hours!