Back in the Hospital

We made it one week at home this time. Back in the hospital today.  He was wretching (dry heaving) over and over  basically to the point of not able to breathe.  Praying we get him comfortable  and able to tolerate feeds.

Cardiology Appointment

Caleb had a cardiology appointment today.  Nothing like an appointment while kids were on Fall Break! Walking in to the hospital, we ran into our friend who's precious little girl is inpatient currently.  New friends that God has put in our paths through this journey are such amazing support and "new family".  We all pray, cry, and cheer each other on.  We quickly hugged and shared quick updates as my crew was quickly getting antsy and we laughed hoping I would remember where they were putting my keys!
  They helped to echo the Xray receptionists calling out for patients, making sure everyone "heard" their names being called and even questioned them what their "progress" was, when they were ready for our turn.  Overall, they were surprisingly wonderful throughout the appointment.  Thankfully, Daddy met us there for a good bit of it!  He had a few questions to ask and it was definitely helpful for backup with the kids.  We questioned whether he needs the oxygen at night since he fights it all night.  He pulls the nasal cannula off, puts it in his mouth and just plays with it.  I'm not sleeping at all because I'm either repositioning it all night or just worried that it isn't on him.  She said to monitor his sats for about 30 minutes to an hour after he falls asleep and if he's above his okay range, then we will formulate a plan.  So, naturally, I just put him on his pulse ox and he's right at 75.  Ugh.  
His xray looked good.  We are stopping one diuretic- Hydrochlorothiazide.  They took bloodwork to check his electrolytes- praying he can stop some of his minerals because I think they attribute to his stomach discomfort.
His cardiologist just is so wonderful.  It has truthfully been and will continue to be extremely challenging at home.  But she just reassured me that he is thriving.  Although it will be touch and go for a while, our time away from inpatient stays will grow.  She was just so pleased with him smiling at her and seeing his adorably cute tongue making faces back at her and even reaching out.  She said that as parents we are doing everything right.  She said she can tell Caleb knows that the world is an amazing place full of love.  It was so pleasing to hear someone say these kind words.  All the medicine in the world couldn't make a Mom feel more "healing" for their child than to hear that someone else can see that their child is truly loved and happy.

Discharged, 6 month & 10 year Birthdays

Caleb turned 6 months old yesterday and we are home!!!!  We were discharged Wednesday night and got home around 8:00 pm-- just in time to quickly set meds and feeds up and get them started!  It was a hectic day that turned into a whirlwind night and nothing has been calm since!  He has come home having to be on oxygen at night as well as a lot more medicines.  He is currently eating 6 bolus feeds a day now and has been wretching a lot.  It has been getting worse and worse. I spoke with his GI doctor today and she said it is a motility issue and she wants to adjust his amount and calories over a few days and will hopefully be able to help him.  Last night, he couldn't breathe he was dry heaving so much.  It got scary!  

Yesterday was a big day for Kate!  It was her "golden" birthday-- she turned 10 on the 10th!  I just can't believe my oldest was born 10 years ago.  She really is the most wonderful blessing to our family.  She's so smart, kind hearted, easy going, and calm child.  I know the next 10 years she will accomplish amazing things, but I only wish I could keep her young!  :)

And yes, he does have on a plain onesie and one sock for his 6 month picture!!-It's that wild around here!

Brothers had to "test" out her new present (lip gloss that they turned into face, leg, arm, and carpet paint)!  Ugh!!

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.