In His Hands: March 2014

Monday, March 10, 2014

An Overnight Stay (March 6-7)

Thursday March 6

Our scheduled GI appointment got moved to Thursday at 1pm so Dr. A, Beau’s cardiologist, also said she would squeeze Beau in today as well.

After waiting for over an hour just to see the GI doc, we explained our concerns with the retching, heaving, and reflux that Beau is having. The GI doc said though Beau is a candidate for a G-tube, at this time he wanted to schedule an upper GI exam to get a closer look at his anatomy. He did a little change to his reflux med. The doctor was actually a bit concerned about Beau’s respirations today as they seemed high with some retractions so he called for an x-ray.

We headed down to x-ray (now after 3pm) but had to wait for almost another hour before getting the x-ay completed! Ugh… this day was not going as planned. Once we completed we headed to the laboratory because Dr. A mentioned we needed to get labs done for Beau before coming to her. So we arrived and there was no order for Beau to get labs… it’s now 4:30pm and the pediatric clinic is closed. So I had them call up to Dr. A. as my phone had no service and she was still there waiting for us... oh I felt so terrible. Well, then the hospital corpsman (clinical tech in the Navy) decides to do a heel prick to draw blood instead of a needle draw so that took even longer than anticipated.

We got upstairs to cardiology FINALLY and Dr. A did a quick echo on Beau. She also saw the x-ray was showing pulmonary edema (fluid in the lungs). She was also not comfortable with his high respirations and wanted to have him admitted immediately. So we made our way up to the pediatric unit and got ourselves settled in. They were not able to get an IV in Beau (he's becoming popular for being a hard stick) but they were watching him carefully and bumped up his diuretics. Thankfully, I have learned to bring Beau's medications and extra Monogen formula (which the hospital doesn't carry) whenever we come to the hospital... just in case.

Happy as always, even at the hospital.

I stayed overnight with him and he did very well... by morning he looked MUCH better. They did another x-ray and it looked way better than yesterday and his lungs sounded good as well. So they did the paperwork for discharge and we were home by dinnertime on Friday.

This face is so funny!

Before bed, Andrew and I were looking through Beau's discharge papers to find that he was admitted with Congestive Heart Failure (CHF)... EEEK I'm glad Dr. A didn't tell me that before hand or I might have begun to really worry. I'm not exactly sure what she saw on his echo before admitting us but CHF is associated with pulmonary edema and heart difficulties leading to retention of fluid causing congestion. Just to clarify, it does NOT mean the heart stopped working!

So once again we are glad the staff at the hospital kept a watchful eye over our sweetie and we're glad to be back home!

I know the Lord is always with me.

I will not be shaken, for He is right beside me.

Psalm 16.8

Saturday, March 8, 2014

Home Sweet Home Feb. 26 - Mar. 5

After 3 weeks of living out of a suitcase, we were so excited to be back home and able to relax and sleep in our own bed. There is nothing better right?

February 26, 2014

Beau is always so awake before his morning bottle!

I capture some of the best smiles and expressions!

February 27, 2014

Beau loves to play on the floor with Mommy and practice holding his links.

He really started bringing his hands to his mouth after surgery.

February 28, 2014

I snapped a couple happy faces in the morning before our doctor's appointment today.

Beau loves the doctor.

Once he gets weighed we wrap him in his blanket for the rest of the doctors to get a peak at him.

Cousin Joshy got Beau his Vikings blanket!

Today he had an echo and an EKG. Dr. A drew a picture of what Beau's heart looks like now with a couple leaks that were never explained to us. We always knew Beau's pulmonary artery would leak because when they patch it the valve is left cut open. Well our doctor informed us that there is more back flow than they would like to see. It is actually flowing all the way back from the lungs and back down into the heart. This is called Free Pulmonary Insufficiency. Though it is a greater leak than she'd hoped for, this is something that can be tolerated and will be watched closely. There is also a small leak in the VSD patch that is allowing a small amount of blood to pass from the left ventricle (LV) to the right atrium(RA). She is also not concerned about it and will watch it closely but it could pose a probelm as the LV is the highest pressure chamber of the heart and the RA is the lowest. Overall she felt the repair went very well and all his pressures look good!

March 1, 2014

March 2, 2014

Beau is getting excited for his visit from Nana and Papa at the end of the month!

Nana got Beau this special Tae Kwon Do bear that sings to him.

Beau was loving his links today and I captured my most favorite picture yet!!

We got a follow up call from Beau's cardiologist from our appointment last week to do a few tweeks to his meds. I talked to her about how since surgery Beau has been retching/heaving like he's trying to vomit but isn't able to. It has only gotten worse where it's happening at almost every feed, sometimes during but mostly toward the end of even up to an hour or two after. He's unable to lay down for almost 2 hours after every feed. He no longer wants to take his formula by bottle. She told us to solely NG feed him until our next appointment on Friday and she was going to put in a consult to see the Gastrointestinal (GI) clinic. Unfortunately the retching is still happening even when we NG feed him. :( We're hoping they can give us some answers on Friday.

March 3, 2014

Beau has started making bubbles!!! He was the smiliest little boy today but of course my camera couldn't capture the happy boy quickly enough so they're all fuzzy pictures but this one gives you an idea!

March 4, 2014

Our friends Jackie, Steve, and their son Graham are moving to California later this month so we got the boys together for what might be one of the last play dates for a while. Beau wore his special sea turtle onesie from Auntie J because he knows how much Miss Jackie loves sea turtles!

We will miss them so much! Next time we're together we'll be building sandcastles under the sun!

March 5, 2014

Beau had his first PT appointment today. We learned how to practice neck control sitting on our laps since he is still on sternal precautions from surgery. His therapist also taught us how to properly play with Beau so his eyes focus in the right direction and he begins realizing his hands as his own. We are noticing more eye tracking too which is great!

Praise the Lord!
Give thanks to the Lord, for He is good!
His faithful love endures forever!
Psalm 106.1

Saturday, March 1, 2014

A few more days at CHOP - Feb 21-25

We spent the next week at CHOP as they tried to balance out his medications and clear his chylous effusion to get him home. It was daily xrays, echos and a constant up and down of his diuretics... up with there was more fluid build up but then down where there was too much and his kidney function "numbers" were being effected.

Beau took a few days to get used to his new Monogen formula but generally was taking between 30-60mL (1-2 ounces) by bottle and then rest was put in through his NG tube. He was still doing some of the retching/heaving during/after his feeds. The CCU team didn't seem too concerned about this as he does have reflux and he passed his swallow study on Feb 14th.

Here are some pictures from our last week at CHOP. We were finally discharged and took Beau home on February 25th!