Post–Op: Day 4

 

They say day 3 after surgery is always the worst and there was no exception for Matthew. He had a couple of bumps the road but had a good night and seems to be doing much better today. Jen Jen is on her way! :-)

 

Man, I have been looking all over the place for this thing!!! It's great to see you smile again, son!

Post-Op: Day 3

Matthew's common atrial line (an IV that went directly into his heart) was removed today which allowed us to take a short walk. Earlier today, the plan was to transfer Matthew out of the CICU and out to the floor, but due to a shortage of beds on the floor, Matthew gets to enjoy being the "wellest" baby in the CICU. We've had a few issues this afternoon with urinary retention as well as continued output from his chest tubes. These problems will eventually take care of themselves with continued treatment. All in all a good day. It only gets easier from here!

Post-Op: Day 2

Precious Matt Matt and "AnAn"

4: 37 a.m. Matthew is still off of the ventilator and doing very well with it. His first discernible words post op were "Covers off!" He later shared with me around 3:30 this morning, "I feel better." Little bits of the precious Matthew that I know and love are peeking through already. I am so excited to see what today holds for my son! I'm also rather a bit excited about the prospect of a nap too!

10:08 a.m. Matthew has been taking juice and milk and had a Popsicle. Still hoping for some of the lines to be removed today. According to Nikki he's doing really well!

Post-Op: Day 1

Matt Matt and Jen Jen, pre-surgery. Happy baby!

EVENING UPDATE: Matthew has been extubated and is doing very well so far. His pressures look good. O2 sat is great. Plan to start pulling central and arterial lines tomorrow.

AFTERNOON UPDATE: Things are sounding more positive for Matthew. They have removed one of three chest tubes. He is responding well to diuresis. ABG's look good as well. Planning to extubate him around 7:00 eastern today.

MIDDAY UPDATE: All is progressing with Matthew. It's a hard recovery process (at this point harder for the family members sitting and watching him than for Matthew) but everything seems to be going as expected, which is a good thing. Mimi says he will occasionally raise his arm (though he is not conscious) or move it, which the nurses say is a good thing for him to do. Matt Matt probably knows this instinctively. ;)

MORNING UPDATE: The overall news remains positive for Matt Matt. He had a rough night in terms of bleeding and fluid loss. He received a lot of replacement in terms of packed red blood cells, platelets (and other medical terms Will and Nikki rattled off ;).

His sinus rhythm is normal and has remained so through the night. There was some concern as they were warming him after surgery because he was a "junctional" rhythm (an abnormal heart rhythm that results from impulses coming from a locus of tissue in the area of the atrioventricular node, the "junction" between the atria and ventricles). This corrected on its own however and the continued normal rhythm is positive.

Of course we all want to race ahead to the point where Matthew is up and playing in the outdoor garden space at Boston Children's and walking around in his new light up shoes from Mimi, but it's a tremendous relief to have a successful surgery behind us and now it is one step at a time. Hopefully the breathing tube comes out later today.

Thought I'd share one of my favorite pics with Matthew this morning... just because it makes me smile.

SURGERY UPDATES

First, many thanks to all the amazing people who care so much about Matthew and are eager to hear how he is doing, as well as for all the love, thoughts, and prayer throughout this process.

I will update THIS POST throughout the day as we have updates from the OR. Please check back here for the latest on Matthew's progress. All times below are Eastern.

2:43 - Incision has been made. Surgery is underway.

4:15 - Matthew is now on heart/lung bypass. 

6:00 - No significant update. Matthew still on bypass. Surgery is progressing well. 

6:45 - During the bypass process, they cool patients down to slow the cellular metabolic rate down. The liaison nurse just told us that the operation is essentially complete, and they have just started warming him up to take him off of bypass. We have not heard from surgery for a full report of the operation yet. 

7:23 - Officially off of bypass. It will be another 45 min to 1 hour before we see him or hear any more. 

8:20 - Matthew is back in the CICU (Cardiac Intensive Care Unit). Still haven't seen him or the surgeon. 

10:20 - Will and Nikki are with Matthew now. Dr. Baird said that everything looks really good. They put a graft into his left pulmonary artery (PA) to expand it. For those of you who missed the earlier post - during the heart cath last week they said Matthews left PA (supplies blood from the heart to the left lung) was "tortuous" or in lay terms... had some obstruction. Dr. Baird said they will watch the PA to see if it needs any more attention in the future, however, any intervention could be done in the cath lab. Just got one more quick update from Mimi, who just saw Matthew and announced that he looks "beautiful." :)

So many thanks to those of you who have remembered Matthew and family today in thought, prayer, or an uplifting word.  Our gratitude is hard to measure. 

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.

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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.