Questions And Answers

Ok. So today we opened up our Facebook status for questions related to David. I hope this answers them. If not, just ask!

The fluid they found around David's heart was actually a large blood clot. Within this clot, they found bacteria which turned out to be MRSA (methicillin-resistant Staphylococcus Aureus - or a staph infection that is resistant to the basic antibiotics). I know that there are many horror stories about this infection - it's not called a superbug for nothing. However, we are not too worried b/c when they first thought an infection might be present, they pulled out the big guns. They gave him an antibiotic (vancomycin) that is so strong it's actually semi-toxic. It's hard on your kidneys, which was our worry since we've had trouble with them this go around. There are different strains of MRSA that are sensitive to different treatments. It takes a few days for the cultures to come back and tell us which strain he has. Luckily, it's a strain that can be treated with a drug called clindamycin. This is much less toxic to his little body. It also comes in a form that he can take by mouth. Meaning we don't need to stay in the hospital until treatment is done (approx 4-8 weeks). Once this treatment is done, David shouldn't have to be on a lifetime regieme of meds for MRSA.

Because of the infectious nature of MRSA, we are asking that no visitors come to the hospital at this time. We're in a quarantine of sorts with gowns and gloves and such. We don't want to put anyone else at risk of contracting MRSA.

As of right now, we're not sure how long we'll be here. He's improving, but apparently he's not quite ready to leave. I guess he wanted to see his weekend nurses again! We have to wean him off the oxygen and keep his heart rate and blood pressure under control. It's a dance we're doing with meds and David's stats.

People have asked what we need. Honestly, we have been so blessed already! We don't really need anything. We've received gift baskets of food and things that we're sharing with the staff and still have 3 giant bags full! What we really need are your prayers. I know we ask for them a lot, but they are a huge reason we are still able to function! So, keep 'em coming! For those who like to pray for specifics, we could use healing in his incisions, healing from MRSA, continued improvement in his lungs, excess fluid to leave his body, and his physical abilities to return (sitting up, walking, etc) after being in a bed for 16 days.

As far as Drew and I are concerned, we're doing okay. We're tired and ready to be home. We're blessed to have the best, sweetest, strongest, most courageous little boy ever. We rest when we can and lean on each other when we need to. We're lucky that Drew's mom has the space and compassion to keep our dogs at her house and take care of them while we're up here. Our families have been bringing us meals so we don't have to eat at McDonalds 3x/day! And our awesome friend, Jamie, is watching our house, getting our mail, paying our bills, and eating our cookies! :-)

David has started to get back to his normal self. We watched most of Sesame Street this morning. He's watched Elmo and P&F on Netflix & YouTube. We even read part of a book (Grover is the monster at the end of the book, btw).

Well, I think that covers it. If there's something I missed, I'll have to answer tomorrow. Right now, D's asleep. So we will be too!

A Brand New Week

Today starts a brand new week. One that will hopefully be more positive than last week. Since the last post, so much has happened.

On Thursday, David was extubated. He was doing okay and he downed pedialyte, so on Friday we decided it was time to try Pediasure. He ate about 4 ounces and got a little agitated. We thought he was still hungry, so we gave him more. All of a sudden, his numbers dropped out. It turns out one of his lungs had collapsed and he aspirated some Pediasure. They had to reintubate him to be sure he was getting the oxygen he needed. It was scary just sitting back watching the docs and nurses work on him. But knowing how great everyone at Kosair is made me feel a little better. After a small moment of worry - okay a major breakdown - we gathered ourselves and waited to hear what the docs would say.

The new plan was to "not rock the boat" and to let him rest and heal up a bit. The last 3 days have been good. He's slept a lot, his lungs have much less fluid in them, and he's breathing more on his own. He's gained 3 pounds since we got here. So much fluid! But, we asked for prayers for pee, and they have been answered. He's been negative (more fluid coming out than going in) for the past couple days! That's what we want to see! However, they are a little worried about his kidneys - they aren't working as well as they'd like. Now that his heart is working like it should, they should also improve. The nephrologist (kidney doctor) says that right now the receptors in his kidneys are sad. For some reason, I love that description. So now we want happy kidneys that produce good pee! :-)

The surgeon said he likes how his heart looks. It's working like it should and his numbers are looking great!

The plan for today is to let him continue to rest. They've started him back on Pediasure via a feeding tube. They're reducing some meds and want to extubate (for good) tomorrow at the latest!

We would like for everyone to know how much we appreciate your good thoughts, prayers, and support for us. We wouldn't have made it through without you!

Thursday Afternoon Update

One of the joys of open heart surgery in babies, and I guess for anyone but just knowing our context, is that no one follows an exact script.  They have an expected road but every baby tends to walk their own unique way.  As always David is doing things on his terms in his way and he has decided that it is going to be a little bit slower than people would like including mom and dad and his family!

The doctors really want to get him extubated (I'm sure I spelled this wrong but off the breathing machine is what I mean) as quickly as possible, in fact many times they do that before they leave the operating room.  David threw them a curveball with some wacky numbers and wanted to wait until this morning.  Well this morning he decided to throw them another fun number or two so they are now waiting until this afternoon as they try to balance his heart rate, body temperature, blood pressure, air flow, pulse ox, and cvp numbers.  The fun part is the medicines usually have a good effect on one and a negative on another so they have been playing the balancing game really well. It is absolutely amazing to see doctors and nurses at work, the people at Kosair's and I'm sure many other places do such a good job communicating to each other as well as to us what's going on.

David is also slowly starting to wake up so they are having to manage pain as much as they can as well as his anger at the breathing tube.  In fact as I type this Nicole had to jump up to keep him from trying to pull it our himself. We had to remind him that's what we are paying the nice doctor so much money to do (or at least our insurance is)

So we are kind of in a holding pattern right now, David has 3 chest tubes, a g tube that is draining stuff off his stomach. He's on a water pad that heats up or cools down according to what his body is doing. He has 13 different pumps to give him medicine and a whole lot of lines in case they have to push anything else. Hopefully by the end of the day we will have him awake a little bit more to breathe on his own and to cough and start getting that going as well as starting to get some of the fluid that they have pumped into him off of him.

Thank you all for your prayers and concerns.  We have felt all the love and we believe David has as well.  The next couple of days will be a little bit slower then yesterday was but that is a good thing. Just keep praying that he slowly gets better and we rest up some.  Thanks and God Bless

-Drew

Tomorrow Is The Day...

So tomorrow is David's surgery. They take him back at noon and should start a little after 1. We would very much appreciate your thoughts and prayers for the doctors, nurses, and all those taking care of David tomorrow. Also for peace of mind for us as we sit and wait for them to come out and tell us everything is fine. The docs expect him to be in the hospital from 4-7 days. We're hoping for the shorter end of that range. :-)

The last few days have been wonderful just spending as much time with him as we can while he's happy. It'll be a little while before he gets totally back to his normal, sweet, happy self.

We want to thank everyone for their love, thoughts, and prayers as we've prepared for this (hopefully) last surgery. We could not have made it without your support!

I know this is short, but I'm going to try to relax and get some sleep before we hit the ground running tomorrow. Stay tuned for an update after surgery. If you'd like the play-by-play, be sure to check our facebook and twitter accounts.

Night all!

Surgery Date

A few weeks ago, David had a heart cath. Everything went pretty well, They said his pressures were good and low (necessary for the next surgery). Once he got back in his room (he was on 6 hours of bed rest - yeah right! He's 18 months old!), his incision site started bleeding. Not just a little, either. I don't usually flip out with David. During the last 2 surgeries, I saw blood and his heart, they stuck him with a bazillion needles, and it wasn't a thing. However, when they pressed on the site and it bled worse, I got a little woozy. It was awful. They always tell you that if the site bleeds to press on it for 10 minutes. I always thought, "yeah i can do that". I was NOT prepared for the amount of pressure needed, or the pain it would cause David, or the bruise that would result. It's finally almost gone, only 2 1/2 weeks later.

Speaking of preparing for surgery...I just got off the phone with the surgery group. David's surgery (the Fontan, for all those playing at home) is scheduled for Monday, August 6th. We've been preparing for this for the past 18 months. But now that we have an actual date - not just "sometime this summer" - it's real. And scary. As soon as the date was set, all we wanted to do was hug David and cry. Maybe it's too early to be stressing, but it's what we do. :-)

Here is a picture that shows a before and after drawing of the Fontan. They're pretty much going to graft a new section of his Inferior Vena Cava to bypass his heart and connect to his Pulminary Artery. This will send the un-oxygenated blood from his lower body to his lungs to get oxygenated, then out to his limbs.

Fontan Picture

So, here are more pictures!

David loved playing in the playroom while we waited for his heart cath!

Right before they took him back, they gave him some "happy juice" to help with any separation anxiety. About 5 minutes later, his head just got too heavy for him to hold up. He was super loopy and it was hilarious.

 

The next week, we went to pick up Drew and some kiddos from church camp. While we were there, our amazing friend, Lisa, took some awesome pictures of David. We're hoping to get down to Memphis before surgery to get some family pictures made. Here are a few of the ones she took.

Man I love this kid!

This is David's new favorite place to sit and watch Sesame Street. I remember when he was barely big enough to see over that ottoman!

David loves blowing kisses and waving bye! Well, he kisses his hand (and by kiss, I mean open-mouth licks it - those are awesome on your cheek, too. :-P). We haven't mastered the "blow"  part yet...

When my mom and sister came to visit, we painted the living room and dining room. It's an awesome dark tan. We were wiping down the walls before painting and David wanted to help. :-)

 

We got one of those little plastic pools for the backyard. David loves to splash around! He can't leave the house without his hat, though. He likes to wear it backwards like his dad.

 

Well, it's naptime for David. And since Ms Sandra is coming today, that means cleaning time for mom!

Thanks for reading!

Events of Last Week

We are less than a week away from David's heart cath. I'm freaking out. Since we've made the appointment, I haven't been sleeping well at night. I can seem to shut off my brain. So, we've been napping together. This is the reason I can't get anything done. How can you not just lay there and watch this sweet face?

We met with and were accepted into the Tennessee Early Intervention Program. Mostly b/c David wouldn't eat anything that looked like food. Paper, books, sticks? Sure, right into the mouth. Maybe he just needed fiber. So we met with the girls from TEIS and have an appointment for Tuesday to meet with the speech and feeding therapist. So since we talked about him not eating, guess what the little stinker decides to do...

Yep. Those are carrots. He's eating 2-3 jars of food each day. Just another reminder that he will do what he wants when he's good and ready.

Last week, we headed down to Memphis to go to the zoo with our friends, Peggy, Luke, & Ben. We had a great time (and burned some calories, too!). David loved pointing out the animals:

"Look, there are the penguins!"

"Mom! It's a panda!"

He's also starting to like wearing hats. When he was tiny, he wouldn't keep them on. Now he puts Daddy's hat on whenever he can. We got him the cutest "old man" hat. This is the first time I have been able to get a picture of him in it.

He sure does love his Cards!

Now that he's keeping hats on, apparently he's afraid they'll fall off. I didn't notice he's holding them on in both pictures!

We found out 2 things he hates this week. The vacuum and power outages. I vacuumed before we had company, and he had a total meltdown. I'm talking sitting down with his forehead on the ground, alligator tears, gasping for air. And 2 hours later, he finally let me put him down. I guess I'll have to save the cleaning for after he goes to bed.

There was a storm a few days ago. Wind, rain, thunder, lightning. None of it phased him. However, when the lights flickered, you would have thought something bit him. He screamed and jumped and ran (as fast as his wobbly legs go) to me. It's not like it was dark out - maybe 2 in the afternoon. But the flickering got him. We got the flashlight, a lantern, a couple of those push-on-push-off lights. He would not let that one go. He carried it around the house - even after the power came back on. We were out of power maybe an hour. It was clearly the worst day ever:

I can't believe I haven't posted a link to this yet! David is on YouTube! This is the link to my videos:

David On YouTube!

Also check out Drew's videos:

Drew's Videos 

Well, he's napping, so maybe I can be too!

:-)

It's only been a month!

WooHoo! Only 1 month between posts! Look at us go! :-)

I spoke to our cardiology office today and they have tentatively scheduled David's heart cath for June 21. We say tentatively b/c the cardiologist may want to check the ECS (Electrical Conduction System - electrical pulses that regulate heartbeats) of his heart. If that's the case, it requires a bit more of an in-depth cath, which won't be possible until sometime in July. Either way, they are shooting for 4-6 weeks after the cath to do the actual surgery. So, by the end of the summer, we will (hopefully) be done with the whole "jimmy rigging" of David's heart. Given, we don't really know what's going to happen after that, but we knew this was a 3-stage surgery process. It will be a relief for it to be done. And then a whole new set of worries come in. But, I'm not in a dwelling-on-the-dark-side mood, so we will skip all the "what ifs" for now.

Every day I am more and more astonished at how anything gets done around here. I know I'm a bit biased, but he is one cute kid. He's becoming such a little man and growing into his personality. He's so much fun!

So, at the end of April, my awesome friends and sister volunteered to run in the Nashville Rock N Roll marathon series in honor of and to raise $ for David and his medical bills. Peggy & Susan ran the 1/2 marathon - they were awesome! Since I'm such a slacker, I knew I wasn't prepared for that. So, I did the mini-marathon. And I convinced some friends and my sister to switch too! So there were 2 rock stars (Peg & Susan) and 4 weenies (me, Sister, Lee, & Jamie). :-)

I would like to give a big thanks to all of our supporters and those who donated to our TeamDavidHayes fund! We raised $675!! Woohoo!

Here's a pic of David & Drew cheering everyone on:

Well, I had more pics, but my stupid internet doesn't like to reach upstairs, so I can't upload them...I guess you'll have to wait for the next blog! Here's hoping it won't be too long! :-)

Night, all!

~Nicole~

Our New House

Ok so maybe 4 months is a little bit of an excessive time to not post a blog...

So - it's been a whole week since we moved to Union City. We miss our friends and Mt Olivet church family, but we are also super excited about our future with UCCPC! Here is a pic of our new home. We love it - although it's still full of boxes!

David had an appointment a few weeks ago with the cardiologist. They said everything looked great. They'll send the info from his appointment to Dr. Kim (the heart cath doc) and the cardiac surgery team. We are looking at the cath early this summer and then surgery later in the summer. I'm in a weird place about it. I'm ready to get it done and over with so it's not looming over us anymore. But I'm also scared out of my mind. The first surgery was scary because it was our baby laying there. The second was worse b/c it wasn't just our baby hurting - it was our son - we could tell that he wasn't himself. Now that he's 16 months old (16 MONTHS OLD!?!?) he's really coming into his sweet little personality. I don't want him have to struggle to get back to that. I know it will save his life, I just don't want him to hurt. How dare he make me love him so much!?

Now that I'm done blabbering, here are some more pictures. :-)

I LOVE this picture! He's almost as big as Daddy...

Hey Hollywood! :-D

David loves swinging! We walked to the park the other day and he had a great time!

This picture cracks me up. He looks like the people in the movies who wear the fat suit. Check out those chins!

 

David was not very much help in the packing department - everything we put into a box had to come back out. However, when we started unpacking, he was all over it! Here he is helping me unpack the snacks to put in this cabinet.

I love being home in the mornings with David. I am beyond grateful that I can stay home and love on him all day. I love being home when Drew comes in for lunch.

 Bath time is so much fun!!

"Oh My!"

 Waiting for Daddy to get home from work.

 Since he's in bed, I guess I should stop typing and go do something productive...Or maybe just go to sleep. :-)