Sunday Hugs

 

A Roosevelt Road Trip

We don't usually take Caleb far from home, but we recently packed up and drove for a couple of hours to Roosevelt to see my brother Jordan and his family!  It was so fun to take a little day trip together and to spend time with people we love a whole bunch!

A Little Caleb Clip

Cardiology Appointment

Caleb had a Cardiology appointment yesterday.  We discussed his low heart rate issues and the cardiologist had us do an echocardiogram (an ultra sound of the heart) to see if there were any evident complications.  The ECHO showed that his heart actually looks better than it did in 2008 when he had his last echo.  He did point out that there is some flow into the right atrium that is unexplained and he wanted to get a second opinion before we discussed it.  In the meantime, he also sent us home with a Holter monitor.  The monitor is hooked up to Caleb for 24 hours so the cardiologists can get a better idea what his heart is doing during a full day.  Hopefully with more information we'll know if there is anything we can do to help his heart rate improve.  

Rosy Cheeks

For the past several weeks, Caleb's heart rate has been really low, so we're loving it when he wakes up with his sweet rosy cheeks!

Asking in Faith

A few weeks ago our little rabbit Lu Lu died.  It was really heart breaking for all of us.  It was the first close experience my children have had with death.  They loved and cared for their bunny every single day and seeing her still little body just broke their hearts.  We've all been really tender about it.  Matthew took all of the pictures down that he drew of her because they made him too sad.  Sometimes the boys still cry at night when they think about her.  One night as Matthew was sobbing, he said, "If it hurts this much to have Lu Lu die, how will we stand it if Caleb dies?"

Oh my sweet boys.  They love their brother so much.  We live a joyful life and can usually put our fears aside and focus on the blessing of each day.  However, sometimes there are moments when fears of losing Caleb creep up and make us feel extra tender inside.

For the past several weeks Caleb's heart rate has been really low.  He's been spending more and more time in the 40's and one night even dipped all the way down to 36.  The fears I  keep tucked in the quiet corners of my heart have been creeping.  I've been extra tender inside as I've visited with doctors and scheduled appointments with cardiology.  My little boys have been extra worried too.


The other night Matthew said to Dallan,
"Dad, Caleb isn't going to die."  to which Dallan responded, "well everyone is going to die sometime."  Matthew replied, "Not if Caleb makes it to the Lord's second coming, then he'll just be "twinkled" right?  And besides, in the scriptures it says if you ask in faith, you will get it.  So I prayed that Caleb wouldn't die- and that if he does, well then we'll just need to go together." 


Sometimes I wish I could shield my children  from worries that seem too big for their little hearts.  Yet I know  their hearts are growing in ways  I can't fully comprehend.  So when I'm feeling extra worried, I'm asking Heavenly Father -with lots of faith -to bless each of our hearts to have the capacity they need. 

Morning Snuggles

I'm not sure if there's anything cuter than seeing my little boys climb into bed with Caleb to give him good morning snuggles...

Brothers are the Best Medicine

Salt Lake Adventure Day

This past week Caleb had some follow up appointments in Salt Lake, so we decided to make it an adventure day!  While I was at Primary Children's hospital with Caleb, Dallan took the other children to hike Ensign Peak.  Then while I was at the Endocrinologist he and the kids visited the Hogle Zoo!  Caleb was a great sport and didn't complain once that our adventures were in the doctor's office.

 Ensign Peak is a prominent hill on the northern edge of the Salt Lake Valley. On July 26, 1847, two days after arriving in the Salt Lake Valley, Brigham Young and seven other pioneer leaders climbed the hill to survey the valley. From its summit they laid out in their minds the city they intended to build.

 The men fastened a yellow bandanna to a cane and waved it from the mountain peak. Brigham Young named the spot Ensign Peak. The pioneers had carried two American flags with them across the plains. Within a short time a flagpole was erected and one of those flags was flown from the peak.

Moments That Matter Most

A Full Heart

Caleb has been home for over a week, and he has improved each day!  We came home needing about 4 liters of oxygen, and now he's down to 1.5  liters.  The light has come back into his little eye, and he sneaks us sweet smiles to help us know he's okay.

Our home sounds so much better with hum of his machines, 

and we've all been catching up on snuggles and smooches!

When we were admitted to the PICU, I was sure we'd be there for weeks.  I don't think I've ever seen him so sick.  But I could also feel the power of prayer lifting our spirits.  I know Caleb was closely attended by heaven.  It is humbling to know that I am a part of a miracle that is so often the combined effort of so many heart felt prayers.  Thank you for exercising your faith in our families behalf.  Thank you for loving our little boy, and thank you for your prayers.  Our hearts are full.

HOME!

We were able to come HOME yesterday evening!  HOORAY!

I didn't tell the boys, so you can imagine their surprise when they  came home and found Caleb here! 

Caleb still needs three times as much oxygen and extra time on the ventilator, but we feel confident we can keep him stable at home while he recovers!
Our hearts are full and we feel so blessed!  We are thankful for every single prayer.  

Thank you.

 Caleb hooked up to the EEG

 He had wonderful nurses who fell in love with him.

 I loved finally being able to crawl into bed with him.

Hooray for HOME!

Moved out of the ICU!

Today Caleb was moved from the ICU to the floor!  We are so thankful for the wonderful doctors and nurses in the PICU for taking such good care of us.  Today we had a few ups and downs
Ups:
I can use my cell phone now!
I can eat in our room!
I can snuggle Caleb much easier because he doesn't have as many lines
Caleb has had dangerously low potassium levels, but the levels went up today!
My brother in law and his wife came to visit and I got to meet my little niece for the very first time!

Downs:
Caleb's lungs are pretty diminished and he had to go on the ventilator earlier than usual
He had numerous episodes of severe agitation and posturing that needed medicine to calm him
Caleb is hooked up to an EEG so that neurology can closely monitor his seizure activity

The plan for tomorrow:
Check for a Bladder infection
A possible CT scan to see if Caleb's shunt is still in tact
Closely monitor his little lungs
Lots of snuggling (if Caleb will promise not to let his diapers leak on me any more :)

Homeward Bound

Caleb has made a lot of progress and we're hoping to bring him home in the next day or so!  Our hearts have been full as we've felt the prayers offered in his behalf.  Today Caleb's lungs have become more diminished.  He hasn't had to go back on the ventilator but doctors think he'll likely need more ventilator support at home for the next several weeks while he continues to recover.  He has also had a lot of seizure activity for the past two days.  We're hoping that as he recovers, his seizures will calm down as well. 
HAPPY THINGS...
Pomegranate frozen yogurt in the cafeteria today
 Visits from people we love
Caleb lost a tooth!  (I told the tooth fairy she can come when he gets home since the PICU doesn't really appreciate glitter)
I finally got to hold Caleb today and we rocked in the rocking chair until my sitter almost grew to the seat.
We're definitely homeward bound... HOORAY!

Thinking of Ben

Today it has been a year since sweet Ben passed away.  I was blessed to have the opportunity to snuggle him and feel his amazing spirit- and he felt like Caleb.  I know that he and Caleb were dear friends before they came to earth, and I love how they found each other again even though we live on opposite sides of the country.  I know he has been at Caleb's bedside this week and has given him heavenly help.

To the dear Orton Family, our hearts are full of love for you on this tender day and always.  May your hearts be filled with love and peace.

Make your own free scrapbook

Much Improved and a Late Night Adventure

Dallan is spending a quiet Sunday with Caleb, and I stayed home to go to church with the boys.  He informed me this morning that Caleb was off his ventilator, and he is off all of the blood pressure medication!  Caleb has responded well to treatment and will likely be able to come home in the next few days!  Our hearts are so full of gratitude.

Yesterday I spent the day with Caleb and had a little adventure on my way home.  There was a violent rainstorm going on in Salt Lake when I left the hospital.  I like to be brave, but to be honest, driving in dark stormy weather really scares me.  I could hardly see the road and called Dallan to see if it was raining in Utah Valley.  While we were talking the tire light went on. That light goes on all time time and rarely indicates a real tire problem so I planned to continue.  I hung up with Dallan and said a little prayer that Heavenly Father would keep me safe... and almost immediately I felt like I should pull over and check the tires.  I pulled off in the last spot possible before getting on the freeway, and sure enough, my tire was almost completely flat.

I called Dallan who without hesitation packed up our other little boys and drove all the way to Salt Lake to rescue me.  He filled the tire and we decided to see how far it would go.  He drove the van with the flat and told me he'd go ahead so I could follow behind him and not be so scared.  I couldn't see the lines on the road for most of the trip home, but as long as I kept my eyes on Dallan's tail lights I wasn't afraid because I knew he would get me home.

As I followed Dallan in our little red car with the backseat full of sleeping little boys, my heart was so full of love for him.  He never once made me feel silly about not trying to get home on my own.  He just came.    He gave me a light to follow so I wouldn't be afraid.  That is who he is.  He is a quiet light who I know I can always count on to lead me home.  

I am so thankful for Heavenly Father's watchful care.  I know Caleb has been closely attended by Heavenly helpers.  I know I was prompted to pull over.  And I know he blessed me with a husband who will always come to my rescue.
My heart is full.

Steady Progress

Caleb had a good day yesterday, and he is making steady progress!  He was weaned off one more blood pressure medication, and he is slowly being weaned off the ventilator.  Doctors are still calling him the "the sickest kid in the PICU" but are really pleased that he is responding so well.  Since his blood pressure is stabilizing, they were able to give him higher dose of pain medication so he was finally able to sleep.    

Caleb fights with so much quiet courage.... I am so proud of him. 

Showing signs of improvment

Caleb had a good afternoon and showed reasonable improvement.  The Respiratory therapists are slowly decreasing his peep on the ventilator, and his oxygen saturation has been much better!  Caleb's labs are showing improvement and they were able to wean him off of dopamine!  He's still got a ways to go, but I am really encouraged with his progress.
As I watch Caleb, I am so touched by his little spirit.  When he looks at me with his red fevered little eye, I know he is trying to reassure me that all is well. Oh how I love my little boy.
Thank you for your prayers and concern for our little family.  It has really touched our hearts.

Septic Shock

Caleb is in a state of septic shock which basically means that the infection is in the blood stream and his condition is very serious.  As a result, Caleb's blood pressure is still really low and he's requiring dopamine, nor epinephrine and epinephrine to keep his pressures up.  The good news is his lungs are doing better and his oxygen saturation is much improved.  He is still on the ventilator but we feel optimistic that we'll be able to slowly wean him down.  As always, Caleb is so patient with all of the medical procedures, and he has the sweetest little spirit about him. Thank you for your love and prayers.

In the PICU

Poor Caleb is in the PICU at primary Children's hospital.  For the past several days we have been having issues with his respiratory equipment, and his respiratory rate had been slightly elevated.  We assumed it was because his equipment hadn't been working properly because he wasn't showing any other signs of illness-until last night.  He started to have blood come out of his trach, and by this morning he obviously wasn't feeling well.  His heart rate and respiratory rate were abnormally high, and his ear drum looked like it ruptured.  I took him to the pediatrician who agreed that he looked quite sick then gave him a double shot of antibiotics and prescribed another antibiotic as well.  While in the office Caleb's Oxygen saturation decreased, and he would only SAT in the low 80's on 3 liters. 
When I brought him home he continued to spiral, I had to turn up his oxygen to 5 liters and he would still only sat 77-80.  I visited with the pulmonologists and Primary Children's and they encouraged us to call an ambulance.  We decided to take him in ourselves and felt we could keep him stable enough until we got there.
Once we arrived  there was a flurry of activity to get him stable.  His blood pressure was extremely low, and he wouldn't saturate enough oxygen.  So, the rest of the afternoon was filled with lots of worries and pokes:
IV lines
Central lines
Arterial lines
Chest X rays that showed collapse of the right lung
A chest tube put in to drain fluid from his right lung
An intubation tube with a cuff placed in his trach stoma to try to get better ventilation
Lots of fluids and blood pressure medicine
PEEP on the vent at 12 at 100% oxygen
IV antibiotics and lots of tests being run.

So far it looks like he has bacterial pneumonia, and he is one sick little boy.   I've only seen him this sick once before, but that was before his trach.  At least now his trach allows him to have better ventilation without the trauma of intubation.

On a happier note:
Doctors were able to get him stable enough for us to come home and get a few hours of sleep. 
Dallan was able to be at the hospital with me.
My mom was able to watch my other little boys and keep them over night
There was Papa Murphy's pizza in the cafeteria and peach frozen yogurt!!
The attending PICU doctor who worked with us was fantastic
Our room is right at the front entrance so we can smile and wave at everyone who walks in :)


Please keep our sweet boy in your prayers!