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!

Hospital Holiday day 3 -Breathing Boy!

Today Caleb went off of the ventilator! He was able to use a trach mask all day without going back on the vent! He still needs a lot of oxygen, but he's doing much better. I was able to put him on my lap and rock him for most of the afternoon. We were both very happy campers! A sweet mom that I met when Caleb had RSV last winter was also back in the hospital with her little girl, so we were able to sneak away and have breakfast in the cafeteria together. You know you're a "regular" when you see lots of familiar faces! His chest X rays still don't look very good, but it's probably due to his chronic respiratory challenges. I anticipate that tomorrow will be a peaceful day and that next week we will start having some studies done so we can start making some decisions about what we will do from here.

Hospital Holiday day 2

Caleb just couldn't wait to wish all of his friends in the PICU a Merry Christmas, so he's decided to stay for a while until he can give holiday wishes to all of them!
Today he was put on the ventilator at 10 breaths per minute rather than C PAP because his blood gasses weren't where they needed to be. Even now, his gasses are showing that he's not getting enough ventilation, so the doctors are trying to decide what to do next. I visited with the pulmonary doctor, and he suggested we consider partial ventilation at home. We'll do a sleep study when he starts feeling better to see if that seems necessary. Caleb had an echocardiogram that showed that his right ventricle is slightly enlarged most likely as a result of his breathing issues. I have also visited with doctors about his pattern of aspirating and pneumonia, so in the next few days we'll do a swallow study to get more data. Hopefully that will help us with some decisions about a g tube/nissin procedure that would prevent him from throwing up.
Caleb has been so patient with all of his procedures and pokes today. It is mighty humbling to see how he responds to his challenges. I can't wait for him to get off of the ventilator so I can snuggle him on my lap! For now I stay close by and hold his hand. I'm going to stay at the hospital tonight to keep a close eye on him and avoid the snowy roads! (I'll post pictures the next time I'm at home)
I'm so thankful for you, Caleb, my sweet little buddy! I love you SO very MUCH!

A holiday in the hospital

This was a Christmas that we will always remember....
Caleb hadn't been feeling well the past few days and his breathing had become more rapid and shallow. He wasn't able to stay saturated with oxygen the way he should. Yesterday we gave him some motrin at about 7:00 PM and for the next hour the motrin kept oozing out of his trach. He also started constantly oozing blood out of his trach. We thought he was probably aspirating so I called the on-call doctor. He asked us to take him right in the the ER at Primary Children's hospital. It wasn't what he had planned for Christmas Eve, but Dallan and I did some arranging for Santa Claus, and packed up for a holiday trip to the hospital.
Derek and Shantal wonderful to help us! Shantal stayed with our sleeping boys and Derek followed us to the hospital so that Dallan and I could be with Caleb (one to drive, the other to suction) We also planned for Derek to drive Dallan home after we got checked in so that he could be home with the boys on Christmas morning.
We made it through a snowstorm and got checked in at 11:59 PM-- still Christmas Eve!! He was hooked up to oxygen,tests were run and chest X rays were taken. It appeared that Caleb aspirated and was battling pneumonia. Dallan and Derek left at around 2:30 AM and shortly afterward,Caleb was taken to the floor. The doctors and nurses tried for hours to stabilize Caleb, but his blood pressure was dangerously low, and even at 100% oxygen, he wasn't able to stay saturated. Finally at about 7:00AM, Caleb was taken to the PICU. He continued to have blood ooze out of his trach and his color was pale and pasty. He was put on a C PAP through his trach, and that helped him stay more saturated with oxygen. The blood oozing from the trach finally finally started to lessen at about 5:00 tonight. When I left the hospital, he was much more stable. His blood pressure was within normal range and his oxygen has been weaned down to 60 %. He's still on C PAP, but hopefully he'll continue to improve.
I don't think I'll ever forget this Christmas... Caleb and I in the hospital and Dallan and the boys not feeling well at home....
But Christmas came! It came just the same! Our stockings were filled with great prizes and treats- there were presents to open stacked under the tree. There were presents from Santa that surprised us all, and even though achy, the boys had a ball! Our hearts were sure tender, but still full of love, for the gift of our Savior from Father above!

Flop

It's hard to hold your head up when it's so full of
heavenly thoughts!


Dear Caleb,
You've been having a lot of seizure-like behavior the past few days. Some days your arms and legs are doing a lot of jerking. Other days you get really still and your eyes twitch really fast, other days you get really rigid, you kick your legs in a rhythmic way, and your face turns red like a cherry! We recently weaned you off of one of your medications...we're going to give you a few more days before we put you back on it. You may just be under the weather and that's why you're having a lot of break-through. I just want to make sure we're doing the right thing. We want to take the very best care of you! No day is ever the same with a little Caleb!

Christmas miracles

I believe in miracles. I put miracles on my lap every day. I am surrounded by miracles at my dinner table. I see miracles every time I look out my window. I feel miracles happen in my heart. I witness miracles daily in my little neighborhood. I'm reminded of the miraculous events for which we celebrate this season.
I've been blessed with Christmas miracles this week. I am tender, I am touched and I am truly thankful!
Dear Caleb,
My heart is so full. You have been able to be off of oxygen for hours at a time! You are getting more used to an artificial nose and you haven't turned blue since your surgery! You have so much courage. You are so patient with me and with your little body. This week you had an appointment with the plastic surgeon we see for your face and skull. It was the first time you've left the house since you came home. We brought lots of supplies with us, and you were very brave! The doctor was so proud of how good you look. Your skull is looking fine, and your cleft palate and teeth are okay too! You share smiles with me when I need them most. Your pure eyes remind me of your older brother, our Savior. You are a miracle to me my sweet boy.

A wink and a holiday wish!

I don't think Caleb will sleep a 'wink' on Christmas eve!

Buzzed!

Caleb got a new haircut. Tonight Mitchell rubbed his head and said "nigh night Caleb, have fun at the ba ba ball game (basketball game)! I guess we know what he dreams about!

Special Gifts

This clip really touched a tender spot in my heart. (Please turn off my playlist to hear this music)

A new chapter

We've had Caleb home for almost a week! We've quickly adapted to the changes in Caleb's care and feel like things are getting back to normal. Our little boys have been really sweet about Caleb's new look. Josh is over-coming his nervous feelings and is realizing he doesn't need to be so worried. The trach hasn't phased Matthew at all, he still crawls into Caleb's crib to snuggle and cuddle him. Mitchell is happy to have his roomie back even though it's a bit more noisy! Caleb has been recovering well. He's had fevers on and off, and a few scary spells where we've had to bag him and change the trach tube, but over all he is getting better each day! On Sunday I took him off of oxygen and his humidifier and put an artificial nose on him to see how he would do.....he did really well for almost 2 hours! I just loved having him on my lap with out so many tubes attached! He hasn't turned blue since his surgery, so I think we're on the right track! I think having the tubes in his ears has helped him, too. Sometimes he smiles when I start singing to him, and I even startled him the other day when I coughed! We're really looking forward to this new chapter with our sweet little boy! We're so thankful for the sweet concern that has been shown!
Mitchell and his "roomie"