Appointments after Appointments

Caleb's had a great transition home.  He really likes his side now-- prefers to sleep on his side and is starting the process of leaning to his side from a back position (beginning of the roll process).  He's still not a fan of tummy time, but we try to encourage it with fun toys and siblings!  Yesterday was full with doctor appointments.  We started with surgery for a Mickey button check.  From there, went to hematology.  They had to draw blood to check his Lovenox levels, which is always torturous.  After attempts in all extremities, and nearing respiratory distress, they called in IV therapy team to draw from his scalp, which tends to be the easiest access.  I'm will ask for them from here out.  They are also trying to determine whether he has a clotting disorder or if the clot is simply due to the number and length of procedures and access he has had.  They tried to prepare me that he will likely require the shots twice daily for a while-- probably up to a year after his Fontan surgery!!!  It is just such a critical location.  Last, we went to Neurology-  we were very late by the time they finally finished his blood work.  (3 appointments back to back on a Friday afternoon was definitely shooting for the moon thinking we'd make them all on time!). I was so glad to finally get this clinic appointment in- it's been cancelled multiple times because of his hospital stays.  The doctor increased his medicine for weight gain and prescribed a med that we will have to keep with us at all times should he have a seizure.

All in all, it was a long day, but felt very productive!

Today, we are enjoying blessed family time, watching the boys' baseball games from the warmth of the car!!  So grateful we can cheer them on.

Discharged... Again

After an attemp at reducing his diuretics, X-ray yesterday (as well as dropping sats a couple of times) showed fluid in his chest cavity again.  So he's back to his high lasix and aldactone.  I'm just thankful he was impatient and being monitored so closely with the change.  It is so scary to be home when med changes are made because it is obviously much more challenging to see changes-- until they are bad and he's in distress!  

He's getting discharged today and is ready to be home with his family!  Prayers of thankfulness once again for his amazing doctors, nurses, nurse practitioners, & therapists.  They all love him so much and hold such a special place in my heart and daily prayers!  

Diuretic changes and Shots

Caleb's had a good couple of days in the hospital.  Quite a few medicines have been changed and adjusted, including a couple of diuretics-- which have made me nervous- including stopping spiralactone and cutting back lasix from 3 times a day to twice a day.  This is a huge change. (Necessary, though because they are hard on his kidneys.)  Although he's had past issues with attempts to reduce diuretics, he should tolerate it now and I am so glad that he is being closely monitored in the hospital with these big changes.  They are watching everything so closely with frequent X-rays and lots of the special attention that Caleb loves!!!  He had his shots today (he's still behind-- today was the typical 4 month old shots as well as his first of 2 flu shots).  We pray he tolerates them okay because shots sometimes rock these cardiac babies.  But again, so thankful that he's being watched carefully as well as we know it is so essential for him to stay healthy!  Just a reminder to get your flu shots (& not mist).    :)

Caleb discovered his voice the last couple of days-- I think he is making sure everyone knows he's here.  He loves all the nurses' attention (& most definitely gets it!). It's so funny to hear him having a little conversation and he's quite loud!

Gastric study

     Of course, here we are, in the hospital, and he has had a great day.  GI has been consulting with our cardiac team to try to figure out why he's been refluxing terribly since after the Glenn surgery, and retching for the last few weeks.  They stopped Erithromiacin last night in prep for today's Gastric Empty Study.  They gave him radioactive material in his formula through his g-tube and watched it every 10 minutes through a nuclear study.  He did amazing the entire hour and a half thanks to watching Elmo!  

He's been his super fun, silly personality today-- which is so great.

      Results just came back and said that his motility is normal-  wonderful news-- but now what?!?!?  Hopefully can figure him all out tomorrow.  :)

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.