We love U!

Most of Caleb's puzzles have been solved... except for one.  So, he is still in the hospital, but we should definitely be coming home tomorrow- just in time for labor day weekend and BYU football!

We are still waiting for the bacteria from the respiratory cultures to be identified so we can treat Caleb with the right medication when we get home.  He may need a PIC line if he still needs IV meds, but hopefully we can transition to oral medication instead.  

One of Caleb's night nurses at the hospital is a die hard UTE fan and kept insisting that Caleb's rash was from the BYU blanket I put putting on him.  One morning I found a big "GO UTES" on our marker board, and today I found Caleb dressed in a shirt that he had decorated himself with a red marker!  HILARIOUS!  I couldn't stop laughing!  Caleb and I decided we could be UTE fans just for today. 

  HAPPY FACTS ABOUT BEING ON THE FLOOR  INSTEAD OF THE ICU:
* I can actually get Caleb dressed every day! He always looks way less sick when he's not just hanging out in his diaper with a million tubes showing (how embarrasing!) 

* It's so much easier to get lots of snuggle time!

* I can bring food into the room and munch my heart out!

* If Caleb's on the floor instead of the ICU, it means the hospital stay is way less stressful!

* We were able to have some very sweet visitors spend some time with us!

 Caleb's getting his sparkle back, and his cheeks are ever so smoochable!

 Gotta love the rivalry banter!

Thank you too the wonderful doctors and nurses who have taken such good care of us.

We love U too!

Puzzling

Caleb has been a bit of a puzzle today: 

Puzzle piece #1: His lungs sound diminished, yet his chest x rays look reasonable.

Puzzle piece #2: His white blood cell count has gone up instead of down. Hmmm.

Puzzle piece #3: His heart rate isn't back to base line yet.

Puzzle piece #4: He developed a hive-y looking rash on his chest and cheeks.

However, the spinal fluid from his shut is clear, his urine cultures are clear, and his viral panel is negative!  

 In spite of a few puzzles, Caleb looks improved today and I bet the puzzles will resolve in another day or two.

A Primary Children's Adventure

Caleb and I are having a little adventure at Primary Children's hospital this week.  We were admitted late Sunday night and are planning to be there for the next several days.
For the past week or so Caleb just hadn't been himself and was more agitated than usual.  I decided on Friday that we'd get through the weekend, and then I'd take him to the pediatrician on Monday.  Late Sunday evening his heart rate and respiratory rate spiked, and I started to get that anxious feeling that we needed to get him in right away.   Our last hospital stay showed us how quickly things can get critical for Caleb and I felt certain that Caleb had an infection.  So after a long night in the ER we were admitted because his blood cultures showed he was definitely battling some infection and his breathing was quite labored.  Last night he had a CT scan and shunt series, chest x rays, blood work, urine sent to culture, and trach secretions sent to culture.  At this point we think he has a possible pneumonia and a trach infection that can both be taken care of with IV antibiotics.   The neuro surgeons tapped his shunt today because a CT scan showed a slight increase in the fluid on his brain.  We are also watching for a bladder infection.  We'll likely find out more test results tomorrow, but in the meantime these are the things that made me smile today:

*Frozen yogurt in the cafeteria!  YUM
* Snuggling with Caleb in his hospital bed
* The attending doctor's name is  B. Kalm  (How funny is that!!)
* We were admitted strait to the floor- not the ICU!    HOORAY!
* A sweet husband who was willing to pick me up and bring the boys for a visit.
* A note on the white board from Matthew that says "Don't forget to Squish his cheeks"

I am so thankful those anxious feelings that would not leave my heart until we were in the car headed to the hospital.  I know that Heavenly Father is aware of Caleb's needs and that He helps us to have specific feelings when we need direction.   How thankful I am for His loving guidance and tender care.

Caleb's heart

I've been visiting with a cardiologist for the past several weeks about Caleb's heart.

We used a Holter Monitor for 24 hours at home so the doctor could get a good idea what is happening in a 24 hour period.  The results showed  is heart rate is very low- as low as 41 when he's sleeping- but there doesn't seem to be anything causing it.  The echocardiogram showed Caleb has an atrial septal defect which means there is a small hole in the right atrium.  At this point we've decided to watch it because it doesn't seem to be doing any harm.  We are going to do an ultra sound down Caleb's throat so the doctor can get some better images just to make sure we shouldn't intervene sooner. 

Over the past few weeks Caleb has had a bladder infection, then an ear infection, and the good news is his heart rate has been elevated during that time.  It seems like his heart is rising to the occasion when it needs to!

Bless his little heart.

Motherhood

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be," 

Joan Ryan, "The Water Giver".

Luau Caleb

Caleb recently came with us to a Luau at my Brother's house. He didn't get up and hula, but you know he wanted to :)

Swinging till the Sun Goes Down

Caleb loves his "Make a Wish" Swing. Last night he let me swing him until the sun went down. It makes me laugh that he'll let me push him higher than Mitchell will!

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 :)