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"

Home

Caleb is home with us tonight! We spent the morning getting all of his equipment set up and his supplies organized. When everything is running, it sounds a little bit like a subway station! We picked Caleb up this afternoon and he looked so cute wearing clothes again! He always looks a little bit sicker when he's just sitting there in his diaper with wires and tubes everywhere! On the counter we found that another therapist left her name and phone number to call if we ever needed help with Caleb while we went to church. I was so touched.
Caleb did well on the car ride home and is doing well in his cozy bed. We are so happy to be all together again. One thing I am feeling tender about is his ability to be portable. Right now he really needs the humidifier and oxygen so he is quite confined to his little room. It feels like we are back to where we were when he was a new baby and didn't leave the nursery for 3 months. I know that as time goes on, we'll be able to see what Caleb is capable of, and all of his new cares will be a normal part of our routine. Life is like that. You just adapt and find joy in every day. We're all together, Caleb can breath better, and that makes me happy.

Thankful

Sometimes the hospital can be a tender place to be...tonight I'm thinking of things I'm thankful for during this hospital stay:
* Nurses and techs who are compassionate!
* A visitor!
* A surprise balloon and teddy bear!
* 60 cent mashed potatoes in the cafeteria!
* A remodeled front entrance
* Meeting special families.
* Free ice water
* Leaving the PICU! (who knew you could use the phone, have visitors, use the bathroom and eat in your very own room!)
* Meeting a special down syndrome friend in the PICU
* BYU and UTAH rivalry among patients and staff
* A special visit from Josh and Matthew
* A few moments alone with my hubby in the cafeteria
* New knowledge
* Selfless service from family and friends
* Yummy surprises
* Driving to the hospital listening to Christmas music
* Driving home from the hospital while listening to Christmas music
* Not ONE bad weather day to drive in!
* A special friend who has "been there" with a trach child
* Kind comments to read when I got home at night
* Chocolate chip macadamia nut cookies in the cafeteria
* a parking spot every day
* Soft hands (they have good hand lotion in Caleb's care box)
* unlimited rocking chair time
* The Calder game (the book I read)
* Secret Leaf rakers
* Oxygen
* Only two IV's!
* Tissues
* A pink little boy
* Answered prayers
* Courage

Answered Prayers

We would never expected to have Caleb home by Thanksgiving, but he is coming home tomorrow! We were doubtful for a while today...Caleb spiked another fever, didn't have enough wet diapers, and was labored in his breathing. After blood tests, urine tests, and another chest xray, they are still going to let him come home! His test results came back in normal range, and his lungs look the same as they did when we brought him in. They say he has chronic lung disease. In response to that diagnosis, Caleb started breathing better and has had his oxygen turned all the way down to 1 liter! He won't let chronic lung disease keep him from being home for Thanksgiving! He still has a ways to go, and we're gearing up for around the clock care for a while, but we're so happy we can snuggle him at home!
On another note, I had an answer to yet another prayer today. Caleb's nurse and technician were both asking me how we find balance with our other boys. I was telling them how privileged we feel to take care of such a sweet little boy and how the boys are really understanding of the ways we have to adapt. I told them that one of our biggest challenges was getting to church in the Winter. I can't leave Caleb with anyone who isn't trained to care for all of his needs. Because Dallan is the bishop, sometimes the older boys have to sit with ward members while I stay home with Caleb. Both the technician and the nurse we had today told me that they live in my same city and that they would love it if I would call them to help watch Caleb while I go to sacrament meeting with my other boys. I cried....a lot. One of these sweet ladies isn't even LDS, but saw that it was important to me and wanted to help. I was so touched by her Christ-like willingness to serve our family. Because they are nurses, they are already trained. Because they have been watching over Caleb the past couple of days, they already know him and his little personality. There are so many things that I've prayed for over the past few weeks. I almost forgot that request for help in the midst of so many health concerns. Heavenly Father didn't forget. I am humbled that while I've been praying for help and clarity with Caleb, Heavenly Father saw fit to answer this prayer at a time and in a place where I didn't even expect it.

Lap time

Caleb had a much better day yesterday! They were able to put an artificial nose with an oxygen adapter on his trach and he tolerated it quite well. He isn't requiring quite as much oxygen, but will likely still need it for while when he gets home. I gave Caleb a bed bath yesterday, and he loved that! Then I pulled the rocking chair over to all of his monitors and put him on my lap for the rest of the afternoon. Caleb was actually able to relax while I rocked and snuggled him! Today they are going to continue turning his oxygen down, and they'll continue to treat the skin around his trach and neck. His poor neck is so red and inflamed. Hopefully it's starting to heal. We are planning to bring him home tomorrow! We are so thankful that we'll get him home for thanksgiving! We are truly blessed!

Never Alone

We all have things that we do in our lives that we have to do alone. Some of those moments take place in the hospital for me. There are times when it's just me and Caleb in his room and I'm watching his monitors drop, I'm wondering when and if he's going to start feeling better, and I'm wishing it wasn't necessary to learn how to "bag" him and do CPR. I don't feel abandoned, it's just that this is a very individual experience at times. Sometimes when I'm eating in the cafeteria, I see tables full of nurses and others laughing and carrying on... they don't know that I'm sitting in the corner wondering if my little boy is going to be with me for very long. Sometimes it feels like the world just shouldn't go on like that. But, I know in those alone moments, that Heavenly Father is so near. He knows how we feel as we sit in the corner, and His world stops to feel it with us. Caleb had a challenging day today. He had a hard time relaxing, his heart was racing and he needed so much suctioning in his lungs. He seems like he's still fighting illness and is trying to recover from surgery as well. His skin on his neck and around the trach is so red from all of the moisture. Over all, I still think he's doing well, I just worry.
Today we learned how to clean and take care of his trach. We took the trach out and put a new one in and did a lot of hands on care. After Dallan left I put on a pair of scrubs and crawled into bed with Caleb and just held him for 4 hours. I think being able to do that is one of the hidden blessings of being in the hospital. I could give all of my attention to Caleb, and I could keep him on my lap as long as I wanted. I got really good at holding him with one hand and suctioning with the other. I know Caleb knew I was holding him even though he couldn't relax at times. He knew I was there and that he wasn't alone. I know he'll continue to recover from being sick, and that his body will be strong and his skin will heal.
I know that even when I can't relax, I only need to be still and know that The Heavenly Father is holding me and that I'm never alone.

Special visitors

Caleb was moved from the ICU into his own room yesterday! Dallan spent the morning with him, then took a break to go to the BYU vs. Utah game. He met Josh and Matthew at the game then brought them back to see Caleb. Caleb was sad to hear the score- but he was so happy to see his brothers!

RA RA RA-RA-RA...Go Caleb!

Yesterday was a pretty good day for Caleb. He was able to come off of the ventilator and is breathing on his own with a little bit of extra oxygen! He did spike a high fever, so much of the day was spent trying to keep his fever down. He had spells of being quite uncomfortable, but had some restful times too. Today he's going to have his first trach change. I can't wait because his neck is so dirty! The doctors haven't let us wash it because they don't want the trach disturbed at all until the first trach change. Yesterday we learned how to suction the trach, so I practiced all day on him! I'm amazed how much can squirt out of that hole... hopefully when he gets feeling better, it won't be quite so much, or we're going to get some snazzy bibs for Caleb to wear!
The hospital is in the heart of UTE territory, so we've been having fun wearing our BYU clothes-we even put a BYU hat on Caleb so there's no doubt where we stand!! It's been funny to bond with fellow BYU fans, and to get razzed by the UTES...all in good fun! Dallan is going to sneak away from the hospital to see the game, then he'll go back to let Caleb know how it turned out!
RA RA RA-RA-RA..... Go CALEB! (and cougars, too)

Rosy cheeks and bubbles

We made it through 24 hours after surgery with no major hic-ups! Hooray for Caleb!
Today Caleb was still on the ventilator, but as the day went on, he started breathing quite a bit on his own. The doctor has slowly been weaning him of the ventilator and will probably do a spontaneous trial tonight to see how he does with only a trach mask. Hopefully by tomorrow Caleb will be breathing on his own through the trach. Caleb's color looks so good! It is so wonderful to have a little boy with rosy cheeks! His cheeks stayed pink all day.... ALL DAY! It made my heart feel so much more peaceful to see that the trach really seems like it is going to help Caleb feel happy in his little body. Caleb has so many secretions coming out of his mouth, nose and trach! You should see the bubbles he can blow! So I constantly slurped the bubbles for him and enjoyed every minute I got with him today. Dallan and I had a 2 hour training today to introduce us to trach care. We have another class in the morning for 2 more hours, so we're slowly learning how to be Caleb's experts! I'm excited to learn all I can so that I can take good care of him and bring him home! We truly appreciate your prayers! We know our family is so blessed by the faith that is exercised in our behalf!

Faith instead of fear

Caleb had so much courage today! Caleb had a difficult morning because he still wasn't feeling well. When we got to the hospital and checked him in, the doctor ordered a chest x ray because he wasn't getting enough oxygen. Sure enough, he's fighting pneumonia! They all agreed that going forward with the surgery was in his best interest, so we changed him into his hospital clothes and wheeled him down the long hallway with the anesthesiologist. Saying good bye was the hardest part. I just love that little boy so much. Dallan said the last words from his mouth were "Play hard Max Hall... go BYU!" The anesthesiologist called to tell me that his intubation was smooth, and that the surgery was going well. It took a little over an hour, but everything was "smooth sailing" as our doctor put it. He told us we could see him in about 10 minutes--- but we ended up waiting for almost an hour and a half! I could sit still for a few minutes at a time then would have to pace the hallway. We were so happy to finally see him. He looked so much better than we thought he would. His color already looked so much better! We spent the evening with him, then got him all tucked in and cozy before we left to get some sleep. He still isn't feeling well, but hopefully he'll be on the mend. Right now he still isn't breathing on his own. He is being ventilated through the trach. Hopefully, his little body will remember what to do! Dallan and I have 4 training classes- 2 hours each, and then we have to take care of Caleb on our own for 12 hours before we can bring him home. I am so thankful for sweet Caleb. I am so thankful for a loving Heavenly Father who stands by our side in our most tender moments. And I'm so thankful for all of the kind words you have all shared with me. Thank you for helping me to feel faith instead of fear!
Right before we took Caleb to the hospital


Waiting for surgery

We got lots of comments about our obvious preference for BYU



After surgery