In Surgery

Thomas saves the day!

Matthew was taken back about half an hour ago. Here are a couple pics from pre-op. Looks like the hospital staff is smart enough to know that having plenty of Thomas the train characters on hand will go a long way in distracting a hungry/thirsty 2 year old.

More Thomas!

Happy Boy

My favorite new way to travel!

Lately I can't walk a real long way without having to rest and catch my breath, which my surgery today will help correct. Dada says we walked about 8 miles around Boston on Saturday though and I didn't feel tired AT ALL (Dada didn't seem to share my energy level at the end of the day though)!! What a DAY!!

Big Day!

Does my butt make this chair look big?

Hi Friends,

Matt Matt here. I've been in Boston more than a week now and mostly we've just been having lots of fun! There was one day they took me to Boston Children's and back to the cat lab, but again, I saw zero cats in there (I'm thinking they need a better name for that place). I did go sound asleep again but this time my visions were lots more exciting. Probably because I have seen and done so many things now.

I was really sleepy for the rest of the day but also I was really sick of people telling me to lie still and flat on my back. Don't they know how many things there are to do in this city?? I was ready to jump up and get OUTSIDE but nope, uh uh. Mama was able to lie down in the bed with me though and at least that made it all a little nicer.

The next day things took a big time turn for the better. Mama, Dada, Mimi and I all went to a big museum just for kids!! It was so cool even the adults in my family were acting like kids and playing with me. There's a group here made up of men that are blue (kind of weird but whatever) and they play these funny drums made out of white tubes. They had a set at the museum and we all got to play even though we aren't blue! I'm glad they made that exception.

Just when I thought things couldn't get better, someone gave us tickets to see the Red Sox play!! I haven't been to a baseball game before and Dada said I was very very lucky to see my first game at Fenway Stadium. Everyone seemed a bit more relaxed and Mimi told me it's because I'm here to have a big surgery but it got moved to Monday (today) so we had some time to relax a bit.

The weekend was totally awesome as well. After Grandfather got here we all got on a big boat in the harbor and went around to see all the cool things about Boston by water. I dubbed myself captain at one point and took the helm.

We went to a bar that apparently has a long history of knowing everyone's name but that bar did not live up to that reputation. That's okay though because I already know exactly where everyone knows my name, and that's at Boston Children's Hospital.

Speaking of, I have to go take my shower and get ready for the talented surgeons here in Boston to open my chest up once more and complete the process of replumbing my heart so that I can breathe easier and so things will run a little more smoothly for me going forward. It's a complicated procedure and I think Jen Jen will tell you a bit more throughout the day.

But once again, I'll be sleeping soundly, flying with birds and superheros, lifted up by angel wings, and missing out on all the action here. I asked Jen Jen to send you pictures of some of our cool adventures while I'm sleeping though so I hope you guys enjoy them. She will also be telling everyone how I'm doing throughout the day.

For now, much love and appreciation for all of your thoughts, prayers and focused, positive energy for me and my family today.

XOXOXO!
Matt Matt

Surgery Date Moved

Couple quick updates.

1. During the heart cath the doctors found Matthew's left pulmonary artery (PA), which supplies blood from the heart to the left lung, was "tortuous." This is a medical term which basically means coarse which causes some obstruction of blood flow. This is not the kind of thing they would intervene on during a heart cath and they may or may not elect to do so during surgery.
2. Otherwise, the doctors were pleased with everything else they found during the cath.
3. Finally, the surgery has been bumped to Monday from this Friday due to an influx of emergent open heart surgeries at Children's Hospital. 
4. Matthew and family are having a day at the Children's Museum in Boston, thanks to some generous donors at Boston Children's Hospital who make tickets to all kinds of cool events available to families in town for medical care.

Heart Cath Complete

Matthew is in recovery now. Will and Nikki will go back in the next 30 - 45 minutes to see him. He will be required to lie flat for 6 hours and let me just say, I have NO idea how they'll pull that off! This is one of the busiest kids I know.

Good news is Matthew will be able to leave the hospital this evening (there was fear they would have to stay overnight after this procedure) so they will enjoy one more free day tomorrow in Boston before the surgery.

No interventions were done as far as balloon dilation or otherwise. We will know more once they get back there and can speak with the doctor directly and I'll update again then.

I'm guessing Matt Matt is going to have a few words of his own later today!

Heart Cath In Progress

Matt Matt is sleepy this morning (all that fun in the park yesterday must have worn him out!) and as I type now his heart cath is underway. He went back just a few minutes ago. This procedure is critical to give the doctors an understanding of Matthew's current heart condition (pressure, volume, etc.) in advance of Friday's operation.

Living in the moment

Preoperative blood draws are out of the way, so now it's time to play!!

Here we go again...

Third time is the charm, right?

Window seat ftw!

Back to Boston

And they're off! Nikki, Matt Matt and Mimi are en route to Boston this morning. Will leaves tomorrow for this week of pre-operative testing and care prior to the big day Friday.

They have friends waiting for them on arrival, like Patty O'Neil, who's adorable daughter Katygrace has also been well cared for by the excellent team at Boston Children's hospital.

We will update as the week progresses!

Thief of Hearts

Matt Matt and Mimi

We are now just 3 weeks away from Matthew's third open heart surgery, the Fontan Completion. In a couple weeks he will make his way, once again, to Boston Children's Hospital where the pre-operative care and testing will begin.

I have been fortunate to spend a lot of time with "Matt Matt" (as he calls himself - and now so do we) over the last several months. He is a great talker with a huge vocabulary and excellent enunciation (better than many adults I know). He really seems to enjoy words and you can watch the process as he learns a new word - he stops and considers the word first, then begins to utter each syllable, one at a time, before stringing the word together. He will continue to work on the word until he is comfortable that he's saying it like he hears it.

Matt Matt has also been going on the potty for the better part of the last year. Not exclusively of course but he's very good about it every time he wakes up and randomly throughout the day. He's truly an exceptional kid. He's a fan of redundant syllables (Mama, Dada, Mimi, Papa) and so I have become "Jen Jen." And let me tell you - Jen Jen loves her Matt Matt!

In many ways I feel this will be the hardest surgery. Not due to the level of difficulty of the surgery itself (though it will be highly complex like the others), but because Matthew is now a little person - the best little person we know. We loved him during his first two surgeries, when he was 6 days and then 6 months old, but he was still a little blob who made strange noises we couldn't quite identify. Now he talks to us, he interacts with us, he makes us laugh (a LOT). He has his own personality and his own distinct way of interacting with the world around him. The very peaceful and loving presence his mother exudes is evident in Matthew's sweet and goodhearted nature.

Everywhere he goes people fall in love with him. I asked my brother one day, HLHS aside, if he knew how lucky he was to have a two year old who is so pleasant and agreeable nearly all the time. He did. We took Matt Matt to a local alpaca farm a few weeks ago where we picked up some locally grown, organic vegetables and eggs. Matthew breezed through there like a cool wind on a warm day that draws your attention upward and brings a smile to your face. I watched him effortlessly steal hearts from every person he encountered. If he'd had a bag to put them all in it would have been overflowing before we left.

I marveled how a child, whose own heart is so badly broken, became such a master of stealing the best of what others hold in their hearts. Someone told me recently that I couldn't understand a particular sentiment because I didn't have children. I replied: I assure you that, while I haven't given birth, I'd give half my own heart to make this child whole again if I could. This is the effect Matthew has on people. This is the Matthew we are taking to Boston this time around. And this is the precious child we look forward to watching walk down the sidewalk without losing his breath when we come back.

Hope is the thing with feathers that perches in the soul.

Matthew's birthday. Such a treasure this child is. Two years today and he's already lived a lifetime of pain and trauma. Yet he is the happiest baby, blissfully unaware of what's in store for him in 5 short months.

Open heart surgery is not the sort of thing babies should have to anticipate, much less endure. Children should not have to face the idea of death before they've had the chance to fully embrace life.

But we know it happens every day. Sometimes unexpected illness takes a life. Sometimes the inexplicable act of a single human who has lost its grip on reality senselessly takes 20 little ones from their families just before Christmas.

It always seems like it will, but our pain does not stop the Earth's rotation. The sun does not go dark and the moon does not lose its luster. How can that be? These events do not define us, do not steal our ability to be happy, joyful people and to go on loving, even when it seems that it should.

Sisters by Heart: New Moms Start Here

Sisters by Heart: New Moms Start Here: Welcome to the heart community! Your baby has a severe heart defect . We know you’ve recently heard those words. We know you’re scared,...

Coming Home Again!

Check it out! I have a foot!
This is the greatest day of my life!

First, apologies for the delay on recent updates. Both Mimi and Aunt Jen are in Gulf Shores this week for Hangout Music Festival. While we are keeping close tabs on baby Matthew, we have not made the time to sit and update the blog.

Next, and more importantly, I bring you great news... Matthew is being discharged this morning from Boston Children's Hospital. He has made a fantastic recovery from his Bidirectional Glenn Procedure (we expected no less, of course!). Just like in December during his Norwood Procedure (first open heart surgery) the one struggle he had was coming off of the O2, but again, he made a phenomenal recovery this week.

We are working on finding new flights for the three of them, to get them back home to Daphne tomorrow.

Post-Surgery Update

M post-surgery,
on "blow by" O2

Matthew is doing well since his surgery ended Friday night. He was extubated yesterday afternoon and spent most of a day on "blow by" oxygen. This means there is a tube blowing oxygen into his face, rather than the nasal tube of direct oxygen.

However, he did end up needing to have the nasal tube, which you can see in the picture here of the first time Mom got to hold Matthew since before surgery. By all accounts he's doing really well and some staff have remarked "he could be out of here in a week!"

Finally holding Matthew!

Of course we know from his first surgery that hiccups do happen, so just like with all CHD babies, everyone is taking it one day at a time, always hoping for the best but trying to be ready for whatever may come.

Mimi will head home on Tuesday. Grandpa Hall returns Monday.

Surgery Updates

Will & Matthew, pre-op

Hi All,

Aunt Jen here. Mimi is in Boston with Will, Nikki and Matthew, so I will plan to update this post as I receive news. All times EDT:

Friday, May 13
2:30: Matthew is in pre-op. Will and Nikki are still with him at this time
4:30: Matthew's surgery begins
5:45: Matthew is on bypass
8:00: Surgery went well. Surgeons are wrapping up (closing, etc.), then Matthew will be moved out of OR and will have chest x-ray and other tests necessary after the procedure. Probably will be another hour or so before Will and Nikki can visit with him.
11:00: According to Dr. Baird, Matthew's left ventricle was better developed than they anticipated. They proceeded with the Glenn operation, but said there is hope for a future biventricular repair, which is outstanding news.

Matthew is recovering.

Saturday, May 14
9:00am: Matthew is doing pretty well. He is still intubated this morning, but has started breathing over the vent. The weaning process has begun and hopefully he will be extubated by this evening.
6:00pm: Matthew has been extubated and is doing well. He woke up this afternoon for the first time since surgery and he apparently protested rather loudly. The team gave him some meds to calm him and he's resting comfortably now. Now that he's waking up I have a feeling he'll have an update for himself soon... :)

Matthew's Update From Boston

Hi Friends!

I don't think I've had a chance to talk to you all directly for a couple of months, but I've been spending a lot of time with Mimi and she told me she's been updating everyone. As you know, I'm back in Boston with Mom and Dad, getting ready for my second heart surgery, the first step of the Fontan Procedure. Below is an overview of the issue and the operation, for you really smart folks that like the details. I had the Norwood procedure back in December and now I'm going to have the Bidirectional Glenn procedure this time.

Do I have a story for you!

I was scheduled to have surgery on Monday, but after they made me go to sleep so they could keep me still and get a clear picture of my heart earlier this week, I woke up and have wanted to keep the oxygen ever since. For this reason Doctors Baird and Brietbart decided to move my surgery up to tomorrow.

I heard Dad saying something about Friday the 13th and Mom said that must mean really good luck for me! Plus Aunt Jen told me she and Uncle Ryan intentionally got married on Friday the 13th because they thought it was such a lucky day, so I think this is a great sign.

Dr. Baird told Dad today that I'm in really good shape for this next surgery and they are really excited for a good outcome. Dad told me it's because I've been doing my arm and leg aerobics so much and getting my heart ready!

My Grandpa Hall was planning to be here with us, but Mom's grandma passed away yesterday so he has to be back home with the family. I just found out Mimi has decided to hop on a plane and join us up here for all the festivities. She'll be here tonight and she's going to stay at the hospital with me. It will be just like back home when I get to spend the night with Mimi on the nights Mom and Dad are both working at the hospital!

I think I've told you guys most of the important stuff. You can read more about what the doctors are doing to my heart and why in the information below. Thanks for all your love, thoughts and prayers. I know Aunt Jen and Mimi will keep you updated and I'll write again as soon as I can! XOXOXO!!

Matthew

Children with hypoplastic left heart syndrome have a single effective ventricle supplying blood to the lungs and the body (either from birth or after an initial surgery e.g. Norwood procedure). They are delicately balanced between inadequate blood supply to the lungs (causing cyanosis) and oversupply to the lungs (causing heart failure). In addition, the single ventricle is doing nearly twice the expected amount of work (because it has to pump blood for both lungs and body).

The Fontan is usually done as a two staged repair.
The first stage, also called a Bidirectional Glenn procedure or Hemi-Fontan (see also Kawashima procedure), involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply (e.g. a shunt created during a Norwood procedure, a patent ductus arteriosus, etc). The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.
At this point, patients are no longer in that delicate balance, and the single ventricle is doing much less work. They usually can grow adequately, and are less fragile. However, they still have marked hypoxia (because of the IVC blood that is not fed into the lungs to be oxygenated). Therefore most patients are referred for another surgery.
The second stage, also called Fontan completion, involves redirecting the blood from the IVC to the lungs as well. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia, and leaves the single ventricle responsible only for supplying blood to the body. 

Back In Boston

Here is the most handsome grandson anyone could have!! Well, he has a couple of cousins who are pretty cute too! ;-)

He is also so very precious!! His smile lights up the entire room!

In the pre-dawn hours yesterday, Matthew, along with his mom and dad, boarded a plane and flew to Boston. According to Will, he was a huge flirt on the airplane, no doubt winning the hearts of total strangers!!

Quick Update

Early this morning, Will and Nikki took this picture of our sweetheart, wearing his Bee Happy outfit (on the 'back side', it says "Life Is Good!').

Will just called to tell us that the sedated MRI is complete and Matthew did just fine. A cath is not necessary because the doctors were able to see what they need to see on the MRI. Dr. Breitbart, Matthew's cardiologist at Children's Hospital in Boston, is very optimistic that he will have a very successful Glenn procedure.

All of this is very good news!!

Our Journey Continues-

This is Dottie, Matthew's Mimi. We promised to keep you up to date on news about Matthew as it became available. That's the reason for this post. I also want to share some recent photos!!

Will and Nikki spoke to the folks at Children's Hospital in Boston and now have the schedule for the next trip...