Hi all, 

Everything's been going great since our last post!

Follow us on instagram / Facebook or elsewhere if you want to keep in touch.

Thank, 

Ray

Micah's 10th Cath Upcoming

 Hey all!

I know it's been too long since an update - but in this case, no news is good news! Micah is doing very good lately, thriving. That said..

Micah has his 10th cardiac catheterization coming next week, if all goes as planned. 

It's in DC with the wonderful Dr. Kanter on Wednesday at about 9:30.

We do not expect any ballooning's or coilings to occur, however, we're going to double clarify the morning of with the doctors. 

Why is he getting a cath? Well, his cardiologist saw that he has more collaterals going towards his lungs than before. Collaterals means that the main way isn't good enough. Therefore, pressures could also be off, and there could be narrowings (which is fixed by ballooning's) or collaterals that aren't useful (fixed by coiling). 

Thanks for reading and keeping us in your thoughts and prayers.

Also! If you're interested in more frequent updates. I (Ray) have started a podcast and I am frequently bringing up any important update about Micah's health. Plus, it covers many other topics (family related mostly). You can find it by searching "So We Press On" on any podcast service. Here it is on apple https://podcasts.apple.com/us/podcast/so-we-press-on/id1498395379?uo=4 

Micah’s 9th cardiac catheterization

hey all, I made a video instead of a text update. Micah and I went to California this summer for his 9th cardiac catheterization. It went really well! 

An Update on Family Life

Hey folks! It's been a while since we last updated our blog - so here's a bunch of photos with a little blurb about how things have been going. 

First - we love being home with Micah since his successful surgery from last summer with Dr. Hanley. I can't explain how great it is to have our little family healthy, happy and growing. 

Micah's really getting stronger and more agile. He's also super smart. He knows so many signs. 

But - as all parents know - the highs are the best, but the lows are that much harder. 

Micah's gotten sick for three separate hospital stays. He's gotten some kind of lung related cold each time. One was 5 days, one was like 18, the other was in between. 

But, he's stayed super happy all throughout and gotten better each time. He just wants to be a kid, play outside, and be a brother. 

Micah's next milestone is a follow up cardiac cath sometime this summer. Other than that - we're just in a "keep Micah's lungs healthy" kind of mode. 

Thanks for all your continued prayers and feel free to comment or hit us up on other social media (where we are a lot more active!).

Here's an album of the photos/videos in this blog post: https://goo.gl/photos/Bf6nrd4Pu4xUXgHU8 

A couple more videos are on my YT page.

Ray

Micah is discharged!

Micah is being discharged today!

Since Micah's ET tube extubation two weeks ago, Micah's been slowly - but surely - on the mend. Today, he's getting discharged (on oxygen) but discharged none the less!

WHERE WE LEFT OFF...

Micah was just extubated after a couple failed, near-attempts. The recovery has been quicker than normal - but still quite a challenge! As parents, the recovery part is the hard part.

TWO WEEKS AGO:

Two days after extubating, Micah was changed from CPAP (mask over the face) to a high flow nasal cannula. This was a big step, because he isn't as frustrated (by the mask) and we can hold him easily. As amazing as you imagine this to be - he really didn't want to be held very much. Poor Micah tends to ask to be held, then realizes we aren't leaving, then gets fed up with me and wants to be put back down. 

He got his chest tubes removed, which you could tell also eased his frustrations. Those are often described (by older patients who can talk) as a real nuisance. I actually helped with the removal (i.e. held Micah down). Pretty gross!

He is so thin. He's dropped weight to under 9kg (under 20 lbs). Since doctors and nurses don't know Micah from before his stay - I actually have to remind them that "this is totally not normal". Can't wait til he is chunky again - but from a nutritional point, we know it's a long road. He has to go from partial feeds, to full feeds, to dealing with throwing up (most likely as we've experienced) to finally eating solid foods and so on. Thankfully, Micah actually wants his wubanub (paci). That's an improvement from last recovery.

Oxygen (breathing support, lungs being healthy, so on) is the main story from here on out, but he's also had some on and off fevers. He's at a good level of awareness - but still so pitiful - that you start to just feel sad for him a lot more when you're sitting with him and keeping him occupied. We're hoping he keeps moving down on his rate and doesn't have any fevers. On 7/31 he's on 8 liters of oxygen (needs to get to 0. His pre-surgery oxygen at home was 2 liters).

As a dad (and starting to feel more and more useless), I did have a couple moments that I was proud of. First I sent a note to Eric Carle's website and asked if they would consider sending a gift to Micah. And they did! Second, I've made good buds with one of the fellows and actually proposed and convinced him to move down the oxygen from 8 to 6 one night.

He's been throwing up a lot. If you recall, he threw up a lot during recovery from the last surgery. Even during the first month at home, he would throw up at any moment around the clock. Just another one of those things that Laura and I have had to come to terms with.

Micah had a lung perfusion study - where they can use images to determine what percent each of the lungs are doing. Ideally, you want 50% and 50%. If you don't remember Micah's previous lung perfusion study results - that's OK - it's because it's only his second one! Pre-surgery at Stanford, he was 85% and 15% (right side doing nearly all the work). The docs told me that a 70-30 would be a great improvement to see. And, go figure, that's exactly what it was! We're thrilled that his left lung went from basically no use to doubling in a short amount of time. He got to ride a wagons to the test location. Yay wagons!
At the end of the week, Micah made it all the way to around a liter of oxygen so he got moved to the step down unit! It's called "3 west". It's kind of dark and noisy in our room (and by "kind of" I mean "very"), but we're glad to be out of the ICU.

THIS PAST WEEK:

To start off this week, we got a call from a supplier of a nebulizer equipment saying "you might be discharged in the next couple days, according to your case manager - so we're sending you equipment". Since Micah is so near to being discharged, I decided to purchase plane tickets for our return flight for 8/14. We figure sticking around till then will be fine - even if he does get discharged prior to that. I'm also nearly out of vacation days - so I decided that I'll head back to work all this week. It's obviously a major strain, but Laura is an amazing mom and able to keep up with the both kids at the hospital during the day.
Micah had a bad fever one night - so he got put on contact isolation - which meant we had a quiet room to ourselves. That was a nice change of pace! They figure that the fever and the throwups are due to - what they call - aspiration pneumonitis. This means that 1) you aspirate (or throw up) 2) something gets into your lungs 3) you get a fever. Thankfully, Micah isn't actually getting an infection - just slight fevers on and off. It's just sad that so much suffering happens simply because of the ET tube getting shoved down his throat and being stuck in there for days.
He had a barium swallow study where they found that he was aspirating on both thin and thick liquids. This means that he isn't allowed to have any water. Thankfully, they don't think it's permanent. Once he gets used to using the flap that covers his airway when he swallows - things will work like normal again. (Hopefully a month or so?)
Laura and I have spent a lot of this week talking with other parents and some of the stories that we experience are the exact same thing that they've experienced - perhaps only a week prior to us. A lot of common themes come into play, so it's nice to have folks to bond with. They just get it. All of it. If I see a dad catching throw up, mostly on his shirt and pants, I totally understand what kind of emotions he's going through. Even though Laura and I are - more or less- surrounded by other folks who are going through some of the hardest moments in their life - the inspiration I get from these really good parents is going to carry with me all my life.
Parents saying they're blessed - despite all the trouble going on. Moms and Dads staying at bedside, nearly around the clock...travelling to a strange location, having barely enough money to cover it, waiting day-over-day for a new morning, putting aside jobs and careers, but always knowing that it's what you need to do. Life is hard. Really hard. When I see the true love that a parent has for their kids - it reminds me how 1) you get through it and 2) it's all worth it.
So many parents here love a child that the secular world would rather toss away. If you ever have the thought "...is every life precious?" pop into your mind...come talk to me about it. I'll set you straight. 

TODAY - FRIDAY, AUG 12

So! Micah is getting discharged today on about .25 liters of oxygen. At this point, we're just happy that we can all be under the same roof at night. Even though I'm annoyed that we'll need some oxygen for Micah, we know he'll eventually kick it. We're moving our flight - probably to next weekend - and sticking around NorCal for a bit. Micah has a follow up appointment on Thursday, the 18th. 

Micah is extubated!

Hey all, big milestone yesterday. Micah is extubated from the ET tube!!

This means a lot of good things…

• He doesn’t need to be heavily drugged and/or paralyzed.
• His heart is working well (his oxygen saturations are UPPER 90s or even 100%).
• His lungs are working well (even his left lung, if you can believe it).
• He’s strong enough to start breathing on his own.

Where we left off…

Since the surgery, the doctors and nurses (and us, whenever they ask for our input) are working hard to find the right level of medications for Micah. Since he’s mostly knocked out, we’ve gotten some restful nights at the RMH (the Donald Home, as Dylan says).

Wednesday, July 27, two extubation attempts.

When I came in the morning, Micah was moving a good amount. Mostly just his head, shaking right and left, like he’s emphatically saying “no.” The nurses were practically pinning him down so that he didn’t move too much. Obviously, being this is not a sustainable situation, the fellow came in and things just escalated from there. The attending decided that it could be a good opportunity to extubate. 9 times out of 10, extubating attempts are super tense for Micah. No exceptions today.

The first attempt was initiated because Micah was alert - which was good. The room was full with people and the respiratory therapist was at the stage just prior to pulling the tube. She was using a bag to see how much Micah was breathing on his own. At this point, Micah coughed a lot (which is good) but as they were suctioning him, they saw a lot of old blood come up. They weren’t entirely concerned by this - but as they realized how much liquid is still pushing on his lungs, they decided to cancel the attempt. Though we were unsuccessful, I was feeling motivated that Micah got all that junk out of him. They decided they wanted to attempt again later today.

On the second attempt, the timing of it was initiated more based on the doctors schedule. Micah was actually knocked out and tired from all his medications (which they gave between the first attempt and now). Go figure, the one time we don’t want him knocked out - he is. The team was really patient with Micah - but since he wasn’t awake enough, he wasn’t making much attempt to breath on his own and they couldn’t pull the tube.

Laura and Dylan were here at that point - so I was able to take a break from the hospital for a while. To be honest, I was surprised how discouraged I got from the two failed attempts. Thankfully Laura was able to take over and I was able to hang out with Dylan.

Thursday, July 28, Extubated!

Laura was with Micah in the morning and, being that all signs were good (drugs OK, lungs OK, etc.) they went into the extubation attempt right after rounding. It went really well! Laura described it saying:

“I was sitting there, texting you that they were about to extubate, and I looked up and everyone was already standing around. So I asked if this was really happening... and it was! They just pulled the tube right out! It was very calm and everything.”

Woo!

Micah went to CPAP because they want to be able to push air pressure into his lungs, to combat against all the pressure against his lungs. In a way, it sounds like the doctors want to be overly cautious (given his previous couple weeks). He’s been doing really well so they started to wean down the pressures and settings. Soon enough he can be on a nasal cannula, like he was at home.

Here’s a little video to get an idea of how good he’s doing!

Friday, July 29, today

I got here this morning shortly after Micah woke up. He’s much more awake, alert, and interested in things. During rounds, the doctors decided to push for a lot of progress today - which is definitely exciting. They want to pull out his chest tubes (he started with three), wean his drugs (we’ll keep a close eye on him, don’t worry), pull out a line that’s going into his neck and keep weaning on the vent!

Here’s the sentence you all really wanted to read: he’s cleared for having water!

Here’s a video of Micah drinking some water...and even helping his stuffed animal have some too. How thoughtful :)

We're still working on our thank you letter to Dr. Frank Hanley (see the end of the last blog post). We have a list of over 100 friends and family. We're going to need to find a big card.

Add your name and email if you want to be included on the thank you letter.

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Micah's surgery story and recovering...

Where we left off..

Micah had his successful surgery last Friday. Now that we’re done celebrating, we’re getting used to the next phase - which is recovery.

Friday, July 22, Full story on the day of surgery:

This was a wild day. Laura, Dylan and I ended up spending about 14 hours waiting for Micah at the hospital. As you can imagine, we went through a lot of emotions that day. Thankfully, ending the day with hope in our hearts and words of thanks on our tongues.

We got up bright and early (iPad for Dylan? Check. Charging cords? Check.). Got to the hospital at around 7AM to hang out with Micah. We kept him occupied the best we could, considering he was thirsty, hungry and generally upset.

He was the first surgery of the day, so he got sent back just before 8AM.

We talked to Dr. Hanley around 9:15. He sat down and talked through all the various factors and decisions. Dr. Hanley said he would try to get us an update on if he would go for a full repair or just a shunt to the left pulmonary artery.

Side note but important: I know “full repair” is a little misleading of a term if you’re unfamiliar. Full repair means that his heart can structurally function like it’s meant to (it has all the parts, no holes, no workarounds). Kids with these repairs need further surgeries due to the simple fact that the replacement conduits don’t grow with the rest of the heart. Once Micah outgrows his conduits, he’ll need another surgery.

Laura and I reiterated that we trust in his decision, that he certainly has his work cut out for him and that we can’t thank him enough.

We got updates every 2 hours going forward. If you’re familiar with waiting in surgeries or any procedure where your child is knocked out and taken away - you’ll realize that the updates usually come in 3 ways. 1) “everything is fine, things are going well, we’ll update you later on” 2) “the doctor will fill you in later” 3) nothing. The fourth option is that something went wrong - but thankfully we’ve never had that given to us via a phone update.

On the second update, we got the usual..

“things are fine, going to plan, we’ll update you in a couple hours”.

So I said, “Great!... Did Dr. Hanley say which plan?”

“...No, I’ll try to get that information for the next update”

On the next update..

“Things are going fine, going to plan, we’ll update you in a couple hours. I tried to get specifics on the plan, but the surgeons didn’t want to relay the details at this point”

If you’ve kept up with our blog, you already know how things turned out, but at the time Laura and I figured that this meant either 1) things are going fine - just the usual business of a surgery and no time to communicate it or 2) something unexpected is going on.

We spent the next number of hours updating family, keeping Dylan occupied (he made a friend, which was nice!) and increasingly beginning to wonder if things weren’t going well. The following updates were always good, but as the waiting room slowly emptied, as it got dark outside, after we had our dinner and were completely tired of staring at our phones for nothing else to do - you can’t help but question your faith. The last update came in person. Our updater said he was heading home for the evening and that they should be finishing up in a couple hours.

Finally, around 9:30PM, Dr. Hanley strolls in.

He sits down and said, “So as you know, we did a full repair...”

Laura and I are shocked and excited and say, “WOW! No, we didn’t know! Go on!”

It turned out that Dr. Hanley tried to convey that he was doing a full repair, but it got lost in the communication train.

Once Dr. Hanley made it to Micah’s LPA, he found that it was nearly twice the size that he expected.

• He was able to bridge the gap to connect the LPA to his main pulmonary branch.
• He replaced the previous pulmonary conduit.
• He enlarged the branches of his right pulmonary arteries.
• He connected a collateral vessel (which wasn’t even seen on the CT or cath images)
• He closed the VSD and the ASD.
• He performed the flow study, which showed that his pressures on the right ventricle were 29 (normal is 25!).
• He closed up his chest.

Dr. Hanley said that Micah’s oxygen saturations would be in the upper 90s! No more oxygen at home! (God willing!)

We were thrilled. It felt like a dream when he was talking to us. We had such deep faith that this day would come. We went from Virginia where “there is nothing we can do” to California where “we completed a full repair”.

We kept thanking Dr. Hanley (and his team), we messaged everyone in our families, we thanked God. Dylan and I went to the RMH and had some celebratory Nutella sandwiches. Laura waited to see Micah off to the CICU.

My beautiful Micah. Now starts the long haul of recovering. His heart surgery yesterday was a huge success! Laura and I deep such faith that this whole trip would eventually lead to today. Heading from Virginia where "theres's nothing we can do" to California where "we completed a full repair". I'm no longer praying for strength, I'm praying for thanksgiving. 🙏🏼❤️ We cannot thank Dr. Hanley and his team enough.

A photo posted by Ray Bennett (@ray10x) on Jul 23, 2016 at 11:33am PDT

Saturday through Tuesday, Recovering:

The past few days, Micah’s been intubated and heavily drugged. Overall, he’s doing really well! The next milestone is to extubate him (remove the breathing tube). We’re working on a different timeline of events this go around. We’re used to Micah not extubating in the usual 3-5 days post operation. We’re trusting that the right levels of medication can keep him in the right spot so that he doesn’t move his tube too much, so he can heal and so that his lungs look good. It’s a super delicate balance. A nice aspect is that Laura, Dylan and I are able to catch more breaks and spend some restful evenings together.

Micah’s been moving a lot! One of the doctors one morning said, “everything looks good… so long as we can keep him on the bed!” Of course she was joking, but for some reason (probably his history of hospital stays) he’s been able to tolerate a super high amount of narcotics. At one point, he was on the same level of medication that they use PRE-operation. They’ve put him on and off a paralytic to keep him from moving. But overall, being more active is a good sign, because it shows he is a fighter.

We’re hoping that he will get extubated soon - so we wanted to share a post just pertaining to the surgery and his recovery thus far. And….

Giving thanks!

We are planning to send a handwritten card to Dr. Hanley (and his team) to thank them for the successful surgery. We want to include anyone’s name who has prayed, wished Micah well, or just wants to be on the card! We’re getting a huge list together in the next couple days and then getting it signed by our close family and then delivering it to him ourselves.

We’re going to snag people names of people who comment on our blog and have liked/commented on our facebook posts. If you want your name included on the card, please sign up with your email below and we’ll happily put your name on it!

Add your name and email if you want to be included on the thank you letter.

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