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Beethoven
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How has it been since the discharge? How is Matthew and how are the parents? What does your road to recovery look like from here?

9/8/2014 1:38:49 PM

Honkeyball
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The road to recovery is going surprisingly smooth since discharge. My wife and I swapped places for the week, with some grandmother assistance to keep the sanity.

The liver itself is functioning beautifully (and I mean like textbook numbers.) We had a clot on day 3 and a second trip into the OR, which cleared up the issue and put Matthew on a 6 month regimen of Lovenox (an anticoagulant.) Unfortunately, it's a needlestick every 12 hours for that time period. It's unpleasant, but after a change in the gauge of needle, it's not a big deal.

The biggest hurtle for Matthew has been, and continues to be, feeding. He's been tube fed since the initial neurological event, and when you turn off the entire GI tract in a kid who already has motility issues, it might as well be starting over at square one.

That said, the difference between Matthew in hospital, and Matthew out of hospital is astonishing. I am sure a lot of it has to do with his mom being there, but his entire countenance changed as soon as we stepped out of the lobby doors last Friday. Since that time we're almost up to the feeding schedule he was on prior to transplant (with a more diluted formula.) Once we have a schedule that works, we can play with the concentration and, Lord willing, get him off of TPN feeding. (For those unfamiliar, that's total parenteral nutrition. http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601166.html) While we've had a feeding tube and managed that for 15 months, a switch to an IV is a whole other ballpark. The risk of infection through a G port versus a vein is of a completely different scale, but we've adapted quickly.

The way forward: We need to get him completely reliant on his GI system for nutrition in approximately a week and a half (two weeks post discharge.) TPN is not a long term solution, and if we cannot provide adequate caloric intake via his G tube, we will have to swap it for a GJ. (Short version: a tube that skips the stomach and goes straight to the intestine.)

So far we are tracking appropriately for that goal, and both mom and I are feeling optimistic about our ability to meet the goal.

All things being equal, we're doing quite well. And the road to recovery puts us home sometime between a week and a half, and the end of September. The biggest factor at this point is whether his now bi-weekly appointments are ready to be spread to once a week, and whether we can wean off of TPN entirely.

Enough with the talk. Pictures:


9/10/2014 10:22:07 PM

elise
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As a nanny I met another nanny at a park who took care of a boy who was born with his esophagus disconnected from the stomach. He was 18 months and just learning to eat on his own, but still getting supplemented through a tube into his stomach. They managed to find some amazing therapists from I want to say Sweden or something and he went from eating maybe a cracker or two a day and needing to be supplemented every meal to eating enough to only need to be supplemented right before bed in a matter of maybe 2 weeks. It was awesome. Good luck on your journey!

9/11/2014 9:21:18 AM

DROD900
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damn man, good luck! Hopefully the recovery continues on an upward track. My daughter was born with septo-optic-dysplasia http://en.wikipedia.org/wiki/Septo-optic_dysplasia , and doesnt have a pituitary gland, so I can sort of relate. Definitely puts life in perspective (and makes you feel like you should get an honorary doctorate degree).

Good luck, thanks for sharing

9/11/2014 9:25:35 AM

Beethoven
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Glad to hear of progress! Has he ever been able to eat without a G-tube, or is this a post-surgery thing?

And good pictures. He looks absolutely precious.

9/11/2014 11:34:43 AM

Honkeyball
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Beethoven Matthew has been able to take one or two ounces of food orally, pre transplant. Not nearly enough to sustain without the tube.

Early on he was taking food by bottle, but we lost a lot of those skills due to a prolonged fight with vomiting, due in part to an unrealistic expectation on the part of his dietitian about how much he could take in. The OTC itself required he get very little protein, so he wasn't able to have regular formula, and the special formula tasted terrible.

As we're released to go home (perhaps next weekend?) we will pick back up with relearning bottle & sippy cup feeding. The doctors are optimistic that he's young enough that we can pick up lots of lost skills, despite his original neurological damage.

Time will tell! For now he seems to be doing pretty well, and the transplant doctor he met with Thursday thinks he may be on track to discontinue the TPN feeding as early as Monday!

9/12/2014 10:14:00 AM

Beethoven
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Sorry for all the questions -- but thanks for answering them! Don't feel you have to if I am prying too much, but I literally know nothing about this diagnosis other than what your family has shared.

What do you mean by neurological damage? I saw on your blog post that he's working with new sounds and words now. Do the doctors think he will continue to grow in that area as well?

That's really exciting to think you may be able to erase some of the deficits in the long run. I'm sure having older siblings who can model things for him is helpful too.

9/12/2014 10:44:48 AM

Honkeyball
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It's not prying at all, and we don't mind.

The initial onset of the disease flooded Matthew's body and brain with ammonia (http://en.wikipedia.org/wiki/Hyperammonemia) the levels he experienced broke 1800 and 2000 µg/dL (Normal for a sick kid would be in the <100 range, while a truly 'normal' level would be in the <25 range.) As a result, of this extraordinarily high level of ammonia, and as well as the length of time he experienced it, his MRI showed significant Encephalopathy, particularly in the Parietal and Temporal lobes (both sides.) Specifically, what we saw were large cysts (essentially just voids) in these portions of the brain. The extent of damage, because it's not an exact science, won't be known until he develops further, but we know that gross and fine motor skills were hit. His frontal lobe and the 'captain's seat' if you will, appear to be all intact. Basically, it's Cerebral Palsy, but it was caused by this disease instead of oxygen deprivation. And, like with other forms of CP, the right kind of therapy and intensive management of his muscular spasticity can help teach his brain to work around the damaged areas.

A first possibility that was thrown out with that first MRI was that he may very well be in a persistent vegetative state, the damage was that severe. Instead, he continues to show more and more progress (slow and steady) in arm, leg, and neck control as well as speech. We won't know for some time if he will walk and talk, or to what degree he will need assistive medical equipment in the long term, but so far he's already outperformed the worst of the predictions. I've got imaging on my other machine, I'll see if I can grab a few few shots of the various images to show for reference.

9/21/2014 6:54:39 PM

BobbyDigital
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I never followed up from my post in June.

Quote :
"We're having a son, due august 15, but likely will be earlier. An ultrasound a couple of months ago showed his heart was pushed all the way to the right. Further investigation uncovered a large mass where the upper left lobe of his lung should be. The last 8 weeks or so had us in weekly ultrasounds, and bi-weekly trips to CHoP in philly to measure the growth of the mass, as there was danger of it pushing the heart against the chest wall to the point where it would fail. About 2 weeks ago it seemed to stop growing, and as the baby grew, it gave the heart more room, so there's a little bit of relief there.

In about 3 weeks, we'll be going up to philadelphia for about a month and a half. we'll know in a week or two when they'll schedule the c-section. he'll need open-chest surgery shortly after birth to remove the mass/upper left lobe of his lung.

"



My wife started contracting 5 days before her scheduled c-section (on a saturday night). They determined she was in early labor and we later found out that this situation was her OB’s “worst nightmare” when they called him in the middle of the night to tell him that “Janine T is here”. His instructions to the on-call OB was “keep her pregnant because she needs a fetal MRI to determine mode of delivery”. They gave her shitloads of fluids to see if they could slow the contractions and then on Sunday morning she went for the MRI to determine if an EXIT procedure was needed. (EXIT procedure is an extension of C-section where the baby is partially delivered but remains attached to the umbilical cord and placenta while the fetal surgeon operates. Once the fetal surgeon is done the umbilical cord is clamped and the baby is fully delivered). Thankfully an EXIT procedure was deemed not necessary after the fetal MRI and a regular c-section with immediate open-thoracic surgery in the adjacent operating room was arranged for Sunday afternoon.

The C-section went smoothly and I remember when they took him out, I heard a little cry and I knew he'd be ok. He was immediately whisked away to the resuscitation room between the two operating rooms where he got his umbilical arterial and venous lines, IV’s and was intubated for surgery. He weighed 5 lbs 11 oz and was 19.5 inches long. His surgery went really well and turns out he didn’t have a CCAM but an even more rare extra-lobar pulmonary sequestration. This is a piece of tissue that ultimately develops into lung tissue outside the normal lungs and is not attached to the airway so it is non-functional and and just takes up a lot of space. The bright side to this is that he didn’t lose any normal lung tissue (like we thought he would) and still has a full set of lungs. The CHOP fetal surgical and NICU teams actually brought him into the postpartum room on the way to the NICU so his mama could get a glimpse of her boy after his surgery - pretty cool that they did that!

He did well through his surgery and was brought to the NICU with a breathing tube. They were very prepared with nitric oxide, the basics to start ECMO (heart-lung machine), enough IV pumps for multiple patients etc. Thankfully he just needed a regular ventilator to assist with his breathing and dopamine (a medicine to help his heart and blood pressure) after the surgery. He was a trooper and his breathing tube was taken out on Monday (1 day old). He did require a nasal cannula with high-flow air to assist his breathing so he didn’t have to expend as much energy to breathe. His dopamine was weaned off on Tuesday night so by Wednesday he was maintaining his blood pressure all on his own. One of his biggest issues after surgery has been pain control since he has a chest tube to help seal any air leaks he may have and collect any fluid drainage. On Wednesday (the day they were planning on taking his chest tube out) he developed a pneumothorax (air pocket in his chest) so the chest tube went back on suction and obviously was not pulled. He absolutely hated his high flow nasal cannula and tried to rip it off his face at any given time, but thankfully that was weaned off on Thursday night (4 days old).

They started letting us feed him a bottle on Wednesday but by Friday he was draining chyle into his chest tube. (Chyle is a milky fluid consisting of lymph and fats from digestion.) This was our biggest set back yet since the chest tube has to stay for an undefined period of time. He was not allowed to drink fatty milk until the lymphatics heal which took a while. He went without oral food for 9 days, and after that his feeding was slowly stepped up as his stomach was too small to get enough food in him. He went 19 days without 'normal' nutrition all in all.

After 27 days, he was discharged from the hospital, with only a feeding tube remaining. We left Philly a day later and were back home a few days before our daughter started 1st grade. He had the feeding tube for about a week before our local pediatrician confirmed that he was gaining enough weight through breast feeding. 4 months later... though he's on the smaller end of the size spectrum, he's otherwise a normal baby.

We're very fortunate compared with many others. A lot of fear, and a very serious medical issue, but it was all encapsulated in one event. As far as we know, there are no long term effects (i guess we're not 100% out of the woods yet, but all indications now are good), and all the trauma is behind him. he'll have a sweet scar to show to girls one day.


Ryan post-op, and at 1-3 months




At 4 months--giving the finger to congenital issues. or maybe giving me the finger for taking too many pictures of him.

[Edited on December 4, 2014 at 10:49 AM. Reason : .]

12/4/2014 10:46:38 AM

Honkeyball
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That's awesome man!!!! So happy for you guys.

12/4/2014 5:41:02 PM

Beethoven
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Wow, you can see his progress right there in that short amount of time. He is very handsome.

12/4/2014 6:14:34 PM

Smath74
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^^^congrats. I'm glad things worked out so well.

[Edited on December 5, 2014 at 12:34 PM. Reason : precious by the way]

12/5/2014 12:23:37 PM

slappy1
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Honkeyballs - I don't have anything of substance to say/add but I just want to say I read your updates and have you and your fam in my prayers. What a crazy curveball you've been thrown. But it seems as though this kid was given to just the right parents. He is blessed (and so are you). Keep us updated on your handsome little guy.

BD - whoa. So scary - the whole ordeal. I'm SO happy everything turned out for you guys! I have a renewed faith in modern medicine.

12/7/2014 5:08:29 PM

qntmfred
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thanks for sharing Bobby. I remember seeing that there were complications but didn't know the seriousness. what a relief for your family


I had a coworker whose daughter got pneumonia or something when she was 3, and something happened that led to her having brain damage. She was 20 years old and had the mental equivalence of an elementary school kid. The burden on my coworker and his wife was obviously immense.

And my dad, he fractured his skull riding his bike when he was 7 years old. Survived, of course, but has had sleep issues since, which causes a lot of health problems.

So even though all of my kids have been 100% healthy since day one, I count my blessings every single day, knowing that it can change in an instant.

[Edited on December 7, 2014 at 10:47 PM. Reason : .]

12/7/2014 10:39:21 PM

BobbyDigital
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Quote :
"I count my blessings every single day, knowing that it can change in an instant."


definitely!

we had 2 NICU babies, and both could have been so much worse than they ended up. we are incredibly blessed.

12/8/2014 10:08:39 PM

Honkeyball
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Update on the Matthew man, he's recently decided to start taking his feedings by mouth! After a year of zero bottle feeding success, this is a huge deal. http://www.healingmatthew.com/2014/12/thanksgiving/



Also cool news, the local AIA (American Institute of Architects) chapter got together to do a little fundraiser for us here: http://www.booster.com/healingmatthew We did a fundraiser last October at Tir Na Nog that had some cool bands and an art auction, and rumor has it there will be a new dedicated art sale featuring work from several Raleigh artists in the near future.

All things considered, it's been an amazing three and a half months since transplant, and this little guy continues to impress us all every day. Cheers.

12/14/2014 10:27:15 AM

rjrumfel
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That's really awesome!

12/15/2014 7:15:43 AM

BobbyDigital
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Awesome, glad to see progress!

12/15/2014 4:29:03 PM

BobbyDigital
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Crossing my fingers -- Ryan's getting his 6 month post-op 120 point inspection at CHoP today/tomorrow. I had to stay behind so our 1st grader doesn't miss any more school, but at least my wife can send pics.



[Edited on February 23, 2015 at 11:00 AM. Reason : .]

2/23/2015 11:00:27 AM

shoot
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OMG. He's suffering.

2/23/2015 11:04:01 AM

Beethoven
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Good luck to him! He looks precious!

2/23/2015 11:37:02 AM

Honkeyball
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Little man is looking great!

2/25/2015 12:23:06 AM

Honkeyball
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Hard to believe it, but this guy is two years old today.


His personality is really showing through these days. Laughing, smiling, reacting to people, sounds, clearly understanding the tone of shows and movies. Big things!


We're still building up muscle tone and balance, and as you can see, sitting up on his own remains a challenge.


Still celebrating small victories. This bottle feeding, is now transitioning to baby foods as a primary source of nutrition. I'm hopeful that working those same muscles will give him the strength he'll need to speak. For now, he's non verbal, except for occasional baby-style babbling and cooing, and perhaps mama and dada.

Hoping this is a big year for us, and for him!

[Edited on May 29, 2015 at 2:00 AM. Reason : Spelling]

5/29/2015 1:58:48 AM

BobbyDigital
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awesome, glad to see the progress-- everything still good with the new liver?

5/29/2015 1:11:16 PM

Honkeyball
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So far so good. We've had our share of ups and downs, primarily on the developmental and feeding side. The liver itself has consistently functioning properly with no rejection.

6/2/2015 10:46:28 PM

rjrumfel
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I haven't seen a bump in a while. I hope all is well!

11/16/2015 8:44:51 PM

Honkeyball
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I haven't bumped in a while! Things are progressing okay. It's tough facing the realities of limitations, understanding what may and may not be even possibilities for him.

We had a three week long hospital stay this summer and nearly lost him due to a combination of kidney failure and hemolysis onset from some kind of viral infection. (Turns out kidney failure is a known side effect of one of his anti rejection medications.)



Eventually we got through it and brought him home, but it was scary for a while there, and after the stay he lost a lot of ground.




Now six months later, some of that ground has still not been regained. Prompting a ton of questions about his level of stress, possible drug interactions, and the very real possibility of additional neurological damage. MRI and EKG showed no new damage, and so we decided to take a break from in-home nursing care for a bit.



We're into week two of that adventure, which means mom is doing pretty much everything herself. In that time we've seen a significant turn around in his level of effort in therapy, and he just seems happier overall. There's so much about the brain that isn't definitive, and his condition is an extreme case of the disease, we have to remind each other how fortunate we are that he's with us still.



He's my hero, toughest man I've ever met. Mom has been updating the FB page pretty regularly as well: https://www.facebook.com/HealingMatthew/

[Edited on December 1, 2015 at 10:37 PM. Reason : .jpg > .JPG]

12/1/2015 10:37:03 PM

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