Splitting time

Daddy had to go out of town which meant a lot of extra help has been needed the last few days.  It's very hard to be in 2 places that you want and really need to be in equally!  So thankful for everyone that helped!  A few extra slumber parties, rides to games, watching the kiddos, meals, meals, meals, hugs, calls, & so much more, as well as amazing nurses and doctors that take such good care of caleb and spoil him when I can't be there.   So grateful daddy's back now though!!!

 Although heart wrenching to pull myself away from the baby,  I was able to spend extra time with the kiddos.  We ate out once- whew-- haven't done that in months!, got my flew shot, tidied up the house, then had fun hang out time with them yesterday. Today we made a couple trips up to the hospital.  It was a glorious day, so we even had a picnic outside when the baby finally fell asleep (he awoke at 5 am and didn't fall back asleep for a nap until 11.). Tonight, I brought the crew for the movie night.  Before going down to the hospital theater, they got their first trick or treating in! Then they visited their little buddy.  They just love holding his hand.  Jake said that his fingers are so tiny.  

He's had a "steady" day.  Not much changed today.  His lasix went from IV to PO  yesterday (oral-- or for him, through tube).  He's still requiring a half liter of oxygen and he continues to wrench quite a few times during the day.  I thought he just looked so tired the last few days.  Praying for a big turn around, because we are missing him!  

Gnash & a few Predators came by to visit him today! 

Go DORES

I am still very concerned and worried that there is no cause found for the pleural effusions that Caleb continues to have.  The doctor decided to add the med, sidenafil, today in hopes of helping.  It is typically used to manage pulmonary hypertension, which, thankfully, he doesn't have; however, the med relaxes the vessels which will hopefully prevent his body from building up extra fluid.  

He seemed to start turning the corner yesterday afternoon and was doing better, but today looked very uncomfortable, sweating a lot, and dropping satts constantly- requiring a liter of oxygen.  He just tried to sleep all day, but would wake every so often very lethargic and angry.  The crew came to visit and he actually perked up while they were in there.  It was perfect.  Then I walked them over to see the tailgating experience for the Vanderbilt football game.  They love giving the the VU sign when I take their pics. 

Cath #3

Just got back to recovery from his 3rd Cath after a long afternoon.  He looks good coming off the vent- very tired, groggy, & slightly swollen.  They accessed him through his neck and groin. He had a large venous collateral that had grown that they put two coils in.  This likely caused his oxygen desatts.  There really were no answers as to his increased need of diuretics for fluid retention.  I'm very nervous and concerned that we will continue to see these problems and worried about how cautious and on top of everything, even more than I already am, I'll always have to be.  It truly seems impossible.  Right now I'm trying not to "wish", but be "glad" and I'm glad they didn't do the stent (scared they didn't, but that's a normal feeling), glad for friends that have given so much of their everything to help with my kids, & glad for friends that walked to coffee with me and came and talked/ listened to me.  :)

Back in the Hospital

I brought Caleb into the ED this morning and he's since been admitted to the PCICU.  He's been grunting as he breathes, wrenching (acting as if he was dry heaving-- he can't actually throw up due to the previous Nissen surgery), and starting dropping oxygen saturations.  Everything quickly worsened this morning and was satting in the 60's and really struggling to breathe upon arrival.  They started Vapotherm immediately and tried to get IV access.  He was distressed and crying so hard.  They doctor was concerned he was going to stop breathing at one point.   It was awful to just watch and not be able to do anything to comfort.  They suggested I hold him, to which I gladly did.  He didn't calm down at all, but I felt more useful-  although, holding him while they were attempting to put in a scalp IV was hard.  They did get one in his arm under ultrasound.  Tomorrow picc team will come to put a line in.  The X-ray showed a lot of fluid across his chest cavity, similar to the last admission.  (An X-ray was done at last week's appointment and was drastically different for the worse).  They started IV lasix to diurese him.  They have moved his cardiac Cath up to this Thursday, where they will put a stent in his left pulmonary artery as well as diagnose (prayerfully) what is continuing to cause his extra need of diuresing.  

Home time

Lots of pictures, but I figure they tell the story of how life is going!   Caleb is loving home life.  It's hard to not feel trapped at home, but getting outside to watch the kids play, or to a ball game in fresh air helps.  We  are trying to get used to the g-tube-- daily dressing changes and ventings.  He tolerates the daily bolus feedings and we increased the rate once with no problems.  He gets fussy early evening.  I try to determine whether its gas, needing to be "burped" (which is why we vent his tube), sleepy, or just typical baby fussy. 

We made an outing to the boys' baseball game on Saturday-  got there 30 minutes after the game started, then sat in the car giving meds for the end- but saw great hits and superstar plays while keeping him in his "bubble".

This is Cooper sliding safely into home.

We started oatmeal.  He actually did okay.  We have been trying every day-  hoping he'll like it & just figure out how to swallow and breathe at the same time.

He found his tongue and started making bubbles.  The faces he makes are too cute with his chubby cheeks!

Discharged!

Caleb is home!  I took this picture as I first saw his precious face this morning.  It was a perfect moment.  Tears welped in my eyes as I've never before seen him with no tubes, oxygen, or IV's on his face.  His nurse had him looking so handsome and I was just speechless to see a huge grin when he opened his eyes-- with no scalp iv's or tubes!  I couldn't wait to get this little boy home to his family!  Bo had tried to talk me into going to see him today (although I think he was trying to get out of his flu shots he was getting today!). They were all elated to have their brother home.  I had a lot of "help", although it is so challenging to keep up with all of his meds, feeds, taking care of what comes along with Caleb, and still be Mommy to 4 others that need constant assistance.  We'll adjust and figure it all out, but in the meantime, I'm taking it minutes at a time!   God has blessed is with a glorious weekend with amazing weather for Caleb's homecoming!  We are going to treasure every moment of being together!

Happy Birthday Zack & 5 Month Birthday Caleb!

IYesterday was a great day.  It was Zack's birthday and Caleb turned 5 months old!  Not the ideal way to celebrate either-  after staying up most of the night working, Zack was up and heading out of town for a meeting before most think about waking, then came home to get/ collect the kiddos, care for them, and then continue work late into the night;  Caleb's day spent in the PCICU.  However, to look on the bright side, the best gifts are not tangible, but the gifts of friendship and he definitely has that!   I had multiple people contact me asking how they could help make Zack's day special.  I really didn't know how to reply, I was so amazed.  They recognize how awesome this man is and deserves so much-- even "help" for the day!  

     Caleb had a great 5th month birthday.  He got moved to the floor last night.  Today has been wonderful.  He's been so happy, playing with toys, & cooing.  He tolerated a bottle nipple in his mouth for a bit and actually sucked on it a few times!!!   I was elated and brought to tears!  

    Cooper sent his Vanderbilt hat up for Caleb to borrow yesterday (I think he wanted to cover his IVs.). He was so proud when I showed him a video of Caleb wearing his hat.  He told me that Caleb could just keep it up here until he came home.  What a great big brother!