Back at home...G-Tube and all!

We are back! We were notified of discharge on Friday morning and then it was off to clean up and load the car so we could make it back to Mobile at a reasonable hour! I was able to actually sleep in a real bed on Friday night. It was more than I could ever hope for! I completely understand why a hospital can't be a 5 star hotel, but the running line seems to be that the extra "bed" for the parent/caregiver is notoriously awful...Why? Why can't they make it just a bit more comfortable? It's as hard on the caregiver to be in the hospital as it is on the patient. Oh well. There are more important things to think about anyway.

I did make it out of the hospital every day. I went "home" (i.e. the family friend's house...more to come on that in a minute) to shower each day and repack an overnight bag, plus to pick up break-lu-nner (that is the one meal that encompasses all three when you are staying in a hospital). I would pick up one decent meal from somewhere and bring it back for my mom and I to share in the hospital room. It doesn't sound all that great, but when you aren't doing much more than sitting in a small room, you don't really need that much sustenance.

We arrived home late last night (we = my mother, myself, and Bobby). Emerson was beyond excited to see us...which always makes you feel better. Love those longer than normal hugs. :) I think not long after, my dad went to pick up dinner and then my mom, Bobby, and myself fell asleep in the den. Somewhere after that, in a foggy daze, we hooked up the feeding pump and all went to bed. Sleep is important since you don't know what will ever happen next...might as well get it when you can.

Bobby always gives or brings Emerson a present when he is in the hospital. So just as any good brother would do, he brought home a present in the form of Disney's Repunzel from Tangled. Emerson loved it. And she gave Bobby a sweet kiss and thank you - unprompted I might add.

(At this stage, Emerson refuses to look at the camera/phone. Instead, she completely ignores any crazy thing you might be doing to get her to look at you. Oh well. This too shall pass.)

Today was a lazy day. By lazy I mean that we didn't go anywhere really, but it still wasn't quiet, relaxed, or even lazy. I did get to take Emerson out for a "cheese samich" at Camille's. And then we ran to Target for the essentials (i.e. Goldfish bread, bananas, blueberries, strawberries, grapes, and cheese). I also found a Disney Princess Ultimate Dream Castle for 70% off in the clearance section. Talk about a score! It will be going in the attic for a future birthday or next Christmas...whenever Emerson starts playing more with Disney princess dolls or Barbies. Then it was home to nap. Well, Emerson to nap. Bobby is still very much in pain so it's just a lot of holding and trying to make comfortable. I hope he improves soon. :(

I thought about this quite a bit while I was in Birmingham (multiple reasons...but it kind of goes along with my personal life problems). I thought of how I would ever thank the friends that offered a place for me...us to stay while trying to take care of Bobby's medical needs. There really is nothing I could do that would ever tell them how grateful I am for all of this. We have several very good friends that live in the Birmingham area that have offered the extra rooms in their home. And I truly appreciate it...And may be using it sooner than they think. But, in the meantime, we haven't had to exhaust others with our trips. So, I know I tell you, but just if you read it too, THANK YOU!

G-Tube & Hospital Stay

I know I should have posted this before now, but we are currently at Children's Hospital of Alabama (Birmingham) recovering from Bobby's g-tube surgery. After a series of events that occurred during my non-posting blog period, it became apparently clear that he needed the g-tube, but to get that, he needed a new doctor. I had two people with heart kids (both around 4 years old now) suggest Dr. Steven King (Alabama Pediatric Gastroenterology). And his name was actually mentioned in August by one of the cardiologists at UAB. So, I asked for and received a referral in November from our cardiologist and received an appointment for December 7th. Dr. King was awesome and knew exactly where we needed to go from where we were at the time. The holidays put a damper on any type of procedure so we waited until after the New Year to schedule the tests and G-Tube surgery. Apparently, the scheduling worked out very quickly in our favor and I received the call only a few days before we needed to be in Birmingham.

Look at that smile! He is ready for his tests...

Getting ready for the Barium Swallow...But then put on hold and told to wait in the waiting room while he continues to digest his stomach contents.

Awwww...Look at me! I am so handsome in yellow (even if it is a hospital gown)! ;)

What?!?!?!!! I am not handsome? Nooooo, I didn't think you said that either. I will show you some leg so you know who is the cutie patootie.

Uh-oh. Do not hold him down. Bobby not likey.

This is my attempt at taking a picture of us together. There are actually very very few of me and Bobby together as it is extremely hard to take a picture of yourself. And who else am I supposed to ask...Emerson?

Awww. Just another one for good measure. And I love the smirk he gives me.

On Friday, Bobby was to report to CHOA at 9:45am for the Barium Swallow (a procedure that primarily evaluates the esophagus) and a Lower GI Tract X-ray (an x-ray examination of the large intestine/colon). Both required Bobby to drink barium...The x-rays for the Barium Swallow was performed while he actually drank it (and by drink...I mean the nurse used a bulb syringe to shoot it into his mouth while he screamed and spit as much as possible back out)...The Lower GI was done a while later after time had moved it past his stomach (a lot less traumatic).

On Monday, surgery was tentatively scheduled for 7am (although we all knew it would be later as nothing ever starts on time). So, my mother and I loaded Bobby up and headed to the hospital at 5:15am. We sat in the surgery waiting room until 7am when we finally got called back. Weight, temperature, O2 sats, respiration all taken before we were put in our temporary room. Anesthesia and various nurses came by and took medical information while providing insight into the procedure and expected recovery.

Monday morning...And here is my sweet non-g-buttoned tummy one more time. Take a good look.

Soon after, I carried him down the hall to the operating room where we gave our kisses and said our "see ya later's" (remember: no goodbyes here!) until later. We were escorted back to the same waiting room where Emerson had arrived and was already riding in a red wagon.

Thankfully, CHOA is designed for kids (obviously) and it isn't terrible to sit in a surgery waiting room with a 2 year old (much different than UAB's Cardiac waiting room). All the TVs are turned to Nick Jr. and there is even a tree house in the middle of the room to climb all over. Oh - and how would I ever forget - the red wagons that litter the hallways. Thank goodness for the wagons. :) Emerson kept us all busy as usual. (My father arrived shortly before we went back to drop off Bobby for the operation.) So, between myself, my mother, and my father, we have a team handling her. And believe me...it takes a team...and lots of various toys and activities (which we brought too).

A long while later, Dr. King appeared and gave us the news that all had gone well. His stomach is apparently more midline than normal (??? - my thoughts exactly...). And the tests done on Friday were supposed to point that out (which they apparently did), but that was not noted on the report sent to him. Either way, it wasn't a big deal and the g-tube is just fine about 1.5 inches directly above his belly button.

Bobby received a MIC-KEY tube. Specifically, he received the Low-Profile Gastrostomy Feeding Tube. There are several types of feeding tubes to choose from apparently, but this one seems to be the best, especially for him. Here is a basic picture of the MIC-KEY button/tube. The balloon is located in his stomach and is what secures the button from falling out...if the balloon deflates, the whole thing falls out. The tube plugs into the top which is the only portion I can see and when its not in use the stopper pictured is plugged in to the button.

Remember that sweet tummy from the BEFORE:

It now looks like this in the AFTER:

Bobby was in recovery longer than expected. Not sure really why, even now. But I do know that he was to be admitted for a 1 night stay. It's Thursday - And we are still here. What followed was a consistently high fever (102+), swollen feet and hands plus general puffiness all over, and obvious pain and discomfort. At first, we were told that he would stay on his IV and receive Pedialyte until 3pm at which time we would try to feed a bottle and whatever he didn't take would be given by bolus feeding.

Bolus feeding is basically when the formula is inserted into a very large syringe which is attached to the end of the g-tube allowing gravity to push the formula into the stomach. Bobby's feeding issue is not centered on the fact that he refuses a bottle (as some babies do), but is centered on that at some point during taking a bottle, he begins to actually burn more calories than he is consuming, therefore, eating becomes less beneficial - even contradictory than intended. (i.e. His poor little heart works so hard just to eat it is, as the doctors keep saying, like running a marathon when everyone else is standing still.) So, as important as it is that he does not actually forget how to eat (Yes, forget! Who knew you could actually forget how to eat? Obviously, not my personal problem.), it is also important that he actually be on the positive side of calories too. He will still be given bottles, but at some point, he will receive the remainder of his feeding by tube. And in the evening, he will be put on enteral feeding which is where he will be fed continuously by feeding pump all night while he sleeps. Since he will not have to "work" for these calories, this is where we hope he will begin to put on weight and start making his way out of the "failure to thrive" category.

After the bottle (offered 4 oz, took 3 oz. by mouth), the remaining 1 oz. was given by bolus. Not much later, I felt a little wet spot on my stomach. I pulled Bobby away to find that his gauze was soaked and his stomach was leaking onto my shirt. The g-button was fine, but his stomach contents were leaking out of his incision. The nurse checked him (nothing seemed overly wrong, but she did let the doctor know). We were told that "oozing" was normal as they had just pierced his stomach to put in a large tube. Seems reasonable. I switch off holding him with my mother. A little while later, she feels the wet sensation to pull him back and find she is wet, the blanket he was wrapped in is soaked, and he is really "oozing" now. I would have thought that his whole bottle had now leaked out, but he continues to "ooze" for a few more hours which ends up with large absorbent pads and an ace bandage being wrapped around his middle section. All further feeding is stopped until the incision can heal more (as it cannot heal if liquid is constantly coming out of it). Over the next 2 days, the bandages get changed out and the leaking basically stops. He has stayed on constant fluids by IV. All meds were transferred to IV as well (in order to prevent them from oozing out of his tummy and not really knowing how much he was absorbing).

You know it's a children's hospital when the first visitors are a bunch of clowns. Literally, clowns. :)

We are trying a bottle this morning. First feeding since the "oozing" incident. You would think Bobby would be inconsolable with hunger, but no...He seems pretty content not eating. Hopefully, this will jumpstart his feeling the need to eat (as he has always been a poor eater and never shown the type of "immediate need" for food like Emerson did).

His weight is just one stepping stone...a BIG stepping stone...that we need to cross to get to his next heart surgery.

I have some more pictures to come when I upload from my real camera (not just my phone). :) Check back soon. I promise...I am back!