NJ- NG-now NJ... What's next?

Caleb moved to the floor yesterday.  His tube was pushed NG (stomach) and his feeds were returned to schedule.  By early evening, he started wrenching terribly and it continued through the entire night, throwing up 5 times.  It was a sleepless night.  It was decided to push it back to NJ midday today and he seemed to do better.  Cardiology and the GI doctors are consulting to form a plan. He did better today, but did have a throw up this evening that had blood in it.  

I started giving him the shots.  He is one tough little guy and luckily, super chunky which helps a bit!

Blood Clot in IVC

Still working with diuretics to get fluid off Caleb's lungs.  He's on oxygen and was very agitated this morning but a bit more himself by this afternoon.  He blew 3 IVs and became happier after we gave up on that form of access.  Although this would not have been where I wanted to spend today (although I think Caleb wanted to be close to the Vanderbilt football kickoff game tonight!), it really was a God-thing.  Last night, on the echo, they saw a spot that needed further assessing via an ultrasound today.  They confirmed he has a blood clot in his Inferior Vena Cava.  It is in the reinal vein area and is non occlusive.  Catching the clot early prevented it from blocking blood to flow around it.  So thankful we were in the hospital to catch it!  Unfortunately, to treat it, I will have to give him Lovenox shots in his thighs twice a day.  Not really sure what to think of this, trying to dwell on being grateful for finding it.  It really could've caused a big problem with his future Fontan surgery being where it is, but also just a clot is not good.
 We'll give the first shot tonight, second and third tomorrow, then four hours after the third, check his low molecular weight heparin assay levels and continue this until the dosage and his blood is at therapy level.

The boys started preschool and pre k 5!

Back in the Hospital

Back to the ER.  Caleb had retractions while breathing, was satting low, sweating and sleeping a lot.  Xray showed streaks on his lungs.  He's been put on oxygen, had IV lasix to help get the fluid off and has been admitted to PCICU.

Encouraging a different Pacifier

During Occupational therapy today, we worked on exercises leading towards taking the bottle.  We are trying to get Caleb to use the hospital big round pacifiers because they are similar to the bottle nipple.  He gags on both just the same!  As soon as it touches his lips- tongue, he thrusts it out of his mouth with his tongue and gags.  We dipped it in milk and he didn't despise the taste or smell- just the actual pacifier.  Hopefully with practice, he'll begin to tolerate it!  His therapist held him in a position so that he was strengthening hisneck muscles to hold his head up as well as to stretch his neck towards the left.  Cooper and Bo were big helpers in manipulating his toys to get him to turn the directions. They loved being involved in his therapy and asked many questions!  They told her that they can't wait for Caleb to take a bottle so they can help!

Mommy's feeling much better today.  I'm not dizzy anymore.  I just feel like I have a terrible headache and exhausted-  but that's functional!  :)

Dizzy Mom

Today has been one of those days that I find myself praying that I know God won't give me any more than I can handle, but my plate has already been filled, overflowing, and now broken.  Over the last couple of days, I've found my mind wandering, wishing, that this beautiful baby boy didn't have this awful physiology.  I've thought, wow,  it's going to start getting easier... then i remember that he isn't "repaired".  So waking up today with vertigo, myself, pushed me to my max!  I get it every so often and it is awful to feel so dizzy you have to hold on to a wall.  But add to that, caring for little Buddy and all that goes along with him, and his siblings!  We have been blessed with so much help throughout this journey (and we are so grateful to each of you and that huge thank you will come in a future post), but today God sent friends to help me get through today.  I look at each one that helped me and know that they had so much else going on in their lives, but so graciously gave that up to help us, from watching the boys, to bringing food, snacks, lunch, dinner, flowers, prescriptions, baby toothbrushes, and even the calls and texts mean so much and remind me of all the love and support for our family.  I guess it was God's way of reminding me that we'll just get through one day at a time, beat that day and be ready to tackle tomorrow.  (Just wish the boys didn't do so much "tackling" of each other-- especially starting at 6 am!)  Anyway... thank you so much to our amazing support group!  We are so, so blessed and loved.

GI Procedure Results

The results from the GI procedures showed that Caleb has allergy cells (eosinophil cells) in his small intestines; confirming that he does have a milk protein allergy.  They could remain in there for up to 6 weeks after he had the dairy and could be causing discomfort.  He is currently on Elecare which is a non dairy formula that is amino acid based.   He had many acidic reflux episodes that presented on the probe.  The doctor doesn't want to adjust any meds- he is maxed out already on 3 reflux medicines.  Prayerfully, with time, his body will heal and the terrible reflux episodes will reduce.  Since starting Reglan a week ago, I've already been able to tell a difference.  He isn't throwing up as often-- typically only once a day now.  If only we could get him to take a bottle or even just not be pump fed continuously!
 This is a picture of how he sleeps.  He loves to be wrapped in his miracle blanket.  The moment I wrap him, he manages to wiggle one of his legs out and then goes right to sleep.  When it's morning wake time, I unwrap him and he does the cutest stretches with every little muscle in his body.  This is my most favorite baby item!  All of my children have used it and I recommend it to every new mom.  Now, they were all weaned off it by 3 months, but this little guy may be using it a lot longer!  This picture shows off his hair puff.  He was born with really fun hair that the nurses loved to "style"- mow hawk, spikes, and fuzzy.  One of the medicines that he was on after the Glenn surgery made his hair fall out-- all but a puff at the crown of his head!  It's now starting to grow back in all over.

Happy birthday Bo

Our little Bo turned 3 a couple of weeks ago.  He has quite a fun personality.  He's very quiet in a sneaky way, obsessed with holding small toys, wants to wear his running shoes all the time, can eat yogurt and cereal three times a day, and rides his bike (or his friend Charlie's) as much as we would let him- even bringing it in the house for extra practice!   Love this buddy!