The most difficult cath yet...

Where we last left off...

In our last update, we talked at length about the surgical options. We're thrilled that he has so many choices. The troubling thing is Micah's having a really rough time recovering from his cardiac cath from last Monday (July 11). We left off the last blog on Wednesday, July 13th. 

Thursday, July 14:

My aunt visited us for a few days, which offered some moments of relaxation (Dylan & Laura went to the beach to see whales, we went out for nice dinners, Dylan and I went tree climbing at Sharon Park). Unfortunately, today was also when things got really stressful. 

Micah was basically the same as the previous days - bleeding in his lungs, no one quite sure why, still intubated.  The doctors were talking about bumping him up for surgery because there's an opening on the schedule. I said that, all things being equal, I don't want them go to surgery because Dr. Hanley said he doesn't want to perform a surgery if he's bleeding - which he is.

They are thinking about extubating him tomorrow, because they don't know what else to do. Staying intubated causes problems:

• The longer he stays intubated, the more he relies on it. The weaker he becomes. 
• It's more difficult for him to heal his bleeding. 
• There's a higher risk for infections.

Plus, doctors are having conflicting opinions about what is causing the bleeding. Some think it's the breathing tube, some think it's not. Lastly, if they try extubating, it could go well or it could make it worse. 

Thankfully, they're also hoping to move him to Cardiac ICU. Micah's been in the PICU, in a 4 person, dark and noisy room. It will be nice to have only cardiac experts caring for him.

Friday, July 15th:

Micah was extubated today - but it was short lived. He went to the high flow nasal cannula (similar to what he wears around at home) then to the CPAP (a mask over his nose that can push much more air into his lungs) and then eventually they decided he needed to be re-intubated. It took 3 attempts (first the tube was too high in his body, then too low, then right). All vital signs were good. This is how we figured things would go - Micah's lots of much trouble with things that other kids do easily.

In good news, right after we finished with re-intubating we were carted off to the CICU. Unfortunately, we won't be able to stay over night, but he'll be around experts all the time.

Photo traveling. So much equipment.

 

After all this excitement, Micah was too awake. The poor guy just keeps signing water and the nurses freak out when he puts his open hand towards his face because they think he's going to pull his tube. He's also super pissed with all the equipment he has stuck in him, so he brings his feet up in the air and throws them down. So Laura and I are sitting bedside, trying to calm him down and hold his limbs. We would sing to him but he would still cry, which is also extra sad because he can't actually cry due to the tube. His little eyes start welling and his mouth trembles. Of course, he also can't have water because of his tube and he's so dehydrated because he's on lasix because reasons and reasons.... The one thing we can do is give him these little sponges on a stick with water. Which he really likes. He holds the stick in his mouth and tries to fall asleep. We were doing this for like an hour yesterday. To make all this worse, the nurses in the CICU didn't have orders for new meds, which was really dumb. So, finally they gave him some meds, but it still took him a bit to settle out.

Just stinks that Micah is having this rough time after his cath (which wasn't even corrective - just looking for information). He's had only 1 other cath that went like this, it was 5 days in the hospital. It's already past that point.

Saturday, July 16th:

He's awake and not pissed this morning! He was sooo happy to see me. He was bouncing his legs up and down. He even had a little smile when I bounced a plush toy up and down and booped his nose.

This is all really hard, Laura and I went into this with such a positive attitude and there's so much to be encouraged by... but it's still very hard. At every end of the day, the weight of the day just crushes us and it seems to add from each day prior. As bleak as each night might be, there's always a new morning!

For the first day, Micah stopped having blood in his breathing tube. When they "suction him" they clear the tube and they usually get bright red blood. Not today!

Sunday, July 17th:

Such a good day, Laura was with Micah all day while I worked on MBA homework with Dylan mostly playing mario games on wii u, ipad, or watching movies. Laura sent me reports about him being playful and interacting. She said how he seemingly was hallucinating - but the nurses said that it's normal and not to worry about it.

Since Micah had a great day yesterday, they were able to extubate him! He was off the tube and on a nasal cannula. Laura, Dylan and I went to church that evening at the beautiful Stanford church. 

Monday, July 18:

Let me tell you, a lot can happen over 12 hours at the ICU. Today has been more difficult in ways that we had not expected. As if it wasn't clear enough already, Laura and I are being tested in all ways imaginable. 

I walked into the CICU this morning and felt like the rug was pulled from under me. Micah was off to the side of his bed, full on crying, both arms in restraints and visibly shaking. I immediately went to his aid, got one of the restraints off his arm. He starts signing for water with his hand shaking more than I've seen before. I find and get him a new water, sponge stick. I see that his dressings on his left arm have dried blood. I get him repositioned. Oh, and he's got a CPAP mask over his face... what the _____. 

Micah's nurse came over after a couple minutes - she was tending to a newborn baby directly across from us. Either due to Micah's obvious distress, or due to my obvious distress for Micah - she jumped to full attention for us. She called over the resident doctor - who also gave us full attention. It turned out that last night, Micah didn't receive any scheduled doses of narcotics. Our nurse said he was having a rough night - so he was receiving "round the clock tylenol". I feel stupid even having to write that out. He was literally only on a minimum dose of drop/IV painkillers and tylenol. The moment I relayed this information to Laura, she broke into tears. You could tell by the look in the doctors eyes as she was administering morphine that she was shocked that he was only getting tylenol. She said that he needs to be on a schedule for narcotics immediately. 

Micah was completely inconsolable, he was shaking more that I've ever seen. Doctors were concerned that he might be having seizures. When Micah wasn't crying, his eyes were rolled up and fixated above his head. Doctors said that some of the drugs he's been on could cause hallucinations. Soon enough, the full team came during their rounds. 

The attending doctor introduced herself, said they were going to be rounded (as if I don't know what was going on...) and at the end there is time for questions. (Even for a level headed person like myself, it was hard to keep it together). 

They did a usual very thorough analysis, focusing in on how Micah's right lung (his "good" lung) is half collapsed. The attending doctor said that it could be 2-3 days before a recovery (before surgery) could happen... or it could be 2-3 weeks. She settled on "it will probably be 2-3 weeks, maybe more, before the surgery". She also said she hadn't talked to Dr. Hanley recently. I respectfully took this new, and quite alarming, new information and decided that (in all honestly) no real decision about the surgery is going to happen before she talks with Dr. Hanley. She also made some suggestions about why Micah's having such a bad time with the drugs and that they want to get him back to being calm. 

With it finally my turn to speak my mind, I said something on the lines of... I've been with Micah through 2 surgeries, over 160 days in the hospital, 6.. now 7 caths. This is now the worst cardiac cath recovery that he's ever had. He was on hard drugs two days ago, and last night he was given ONLY tylenol. Any other time we've been in the hospital - Micah has never done well with JUST tylenol. Yesterday, he was hallucinating and nurses wrote it off as something mildly humorous. Other than that, he was doing fine yesterday - on high flow - and now he's a wreck and on CPAP. I consider the lack of drugs to have caused him to need the CPAP. He needs to be on a schedule for drugs, not just PRN, and - WHEN he needs to be cut off the medications - he needs to be on a scheduled wean." The attending agreed and made a point about how he's on some medications and there's a transition from using drip medications (as they were doing in the PICU) to using IV medications. I replied, reiterating that it's a terrible decision to not have him on a schedule and to just use tylenol. She agreed. 

After that, the whole morning was filled with tending to Micah, trying to get him to calm down (only after 1PM did he relax and sleep). I emailed Dr. Hanley, about my concerns on the date and medical issues for the surgery. I also called his assistant to set up a date for a meeting - scheduled for Thursday. I was planning to find the exact right nurses/doctors to complain to, pertaining to the lack of care last night - but by the time noon rolled around - I was kicked out of the ICU because another child in our pod needed to receive emergency open heart surgery. I walked home.

I can't stress how frustrating it is to be a parent, doing all we can to advocate for our child - who can't speak - who is constantly under distress and who just wants water, mom & dad and to be held. He has the smallest desires right now in his little life. We're doing all we can - and as tired and worn out as we are - Laura still calls the nurses every night and asks for updates on how Micah is doing. We would happily do more - if we thought it could help. And to think that last night, we could have done more - we could have been there and seen the situation escalate and advocated for Micah. It's so frustrating that the care was this poor - something perhaps we've taken for granted at Children's national in DC. 

Micah's calmed out now, Laura's at the hospital. I wanted to send this out before we get even further behind on updates.

UPDATE: After a number of inquiries, on Tuesday we were able to get more information on Sunday night. It turns out, Micah received 2 Morphine PRNs overnight. We are happy that the care given to Micah was, at least, closer to being fully appropriate for that evening. Also, we're very happy with the communication of the doctors, social workers, and teams involved after this experience. 

Subscribe to our blog below. Also, we have open dates for food on our meal train site (https://www.mealtrain.com/trains/o2mgw1). 

Thanks for the prayers. 

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Post Cath and Meeting w Hanley

Alright so, a lot has happened in the last few days. Following Micah's cath, the cath doctor - Dr. Peng - gave us some encouraging news!! Based on the pressures out in the distal branches, she doesn't think Micah has pulmonary hypertension!!! This is AWESOME news because this is the diagnoses that suddenly put a shorter life expectancy on Micah. One less disease to worry about! Furthermore, she proposed TWO options that Dr. Hanley might take to fix Micah's left pulmonary artery. TWO! We left Children's with no surgical options so this totally blew us away. She said there are some narrow branch arteries in the right lung that need to be addressed in addition to reconnecting Micah's left pulmonary artery. We were so full of hope after meeting with her. There is a plan!

Even though we got some good news, Micah came out of his cath with bleeding in his lungs so they kept him intubated. They put him in the PICU because there was no room in the CICU - hopefully we'll head to the CICU today. They've been trying periodically to sedate and paralyze him to allow his lungs to clot and heal so the bleeding stops.

Unfortunately, on Tuesday we were told that Dr. Hanley didn't want to perform the scheduled surgery because of risk for hemorrhaging. We agreed that postponing surgery was the best option... even though we just want to see Micah fixed.

We got to meet with Hanley on Tuesday morning which was another huge hopeful moment! He said for kids with this particular CHD, Micah is a 3 out of 10 in complexity! He is very confident that he can fix Micah. This man appears to have this diagnoses down to an exact science. Dr. Hanley pioneered the process for fixing Micah’s condition - so we know he’s in good hands.

Dr. Hanley elaborated on all of the details, considerations and options for Micah. The surgery has 3 main elements. Right pulmonary artery, left pulmonary artery, and the heart.

(Read on at your own risk - it gets complicated and we’re not 100% sure we’re explaining it correctly - this is just our understanding. We provided a drawing of Micah’s anatomy as a visual.)

First, he wants to fix Micah’s right pulmonary arteries. We didn’t expect Dr. Peng to talk at length about fixing the right side - we were so focused on IF Micah’s left side could be repaired that we didn’t even consider how Dr. Hanley would also want to repair the entirety of his heart. Poor Micah is currently sitting in the unfortunate position of his left lung being in excellent shape but the pulmonary artery is cut off, meanwhile the right pulmonary artery is OK but his right lung has poor distal branches. It would be convenient if at least one side was all good and the other was all bad. His right side is what lead the doctors at Children’s in DC to diagnose him with pulmonary hypertension. There’s so much pressure in his heart - but it’s due to the narrow passage of his right arteries to his lungs. Dr. Hanley can surgically go all the way out towards those narrow passages and enlarge them - something we only thought could be done via a cath!

Second, Dr. Hanley explained the two options for the left arteries. Dr. Peng called them “Ghost vessels” because Micah’s various branches from his left lung are disconnected from the main pulmonary artery - and without blood flowing through them, they’re hard to see.

OPTION 1: Connect the right pulmonary artery to the ghost vessels. This would be the ideal fix. Dr. Hanley started saying things like “full repair” (!)

OPTION 2: Create a shunt that leads oxygenated blood to the ghost vessels - so that they can grow and eventually (somewhere around 6-9 months from now) be connected back to the main pulmonary artery (full repair).

One of the main factors that influence the left side is how small his left arteries are (currently measuring 2.5mm) and if he’ll be able to branch all the way out to them. Dr. Hanley suspects that Micah’s left side became discontinuous due to a “kink” (like a kink in a water hose). He suspects this occurred due to the very large pulmonary conduit being placed next to the very small left pulmonary artery.

The last points that he talked about were how he decides whether to close or leave open the hole (VSD) in Micah’s heart. This was particularly interesting to us because Dr. Hanley can pretty accurately measure how leaving open or closing the VSD will affect pressure in the heart and arteries. Micah was born with a VSD, but during his last surgery - Dr. Jonas partially closed the hole, leaving it fenestrated. The intention of this is to regulate the pressures of the blood flow to the lungs. When there’s too much pressure in the right ventricle, blood can shoot to the left ventricle which leaves Micah with poor oxygen saturation. The part that gets interesting is that Dr. Hanley plans to perform a flow study - right then in the operating room - to determine whether or not to close the VSD. We had never heard of such a thing. As you might remember, Micah gets caths all the time (already had 7) and the caths are the best way to get an understanding of blood flow through his arteries. After Micah’s last surgery, he struggled, went home, did poorly, went back to Children's, had a terrible episode, then had a cath to figure out what was going wrong. Well, Dr. Hanley will basically do a cath -during surgery- so that he knows if the pressures are correct or if he needs to keep going and make further adjustments. This flow study will hopefully prevent a similar episode Micah experienced shortly after his last surgery.

Dr. Hanley is clearly going to have a lot of judgment calls during the surgery, it sounds like the ideal plan is to 1) replace the main pulmonary conduit 2) fix narrow pulmonary branches on the right side 3) see if he can connect the ghost vessels on his left side OR place a shunt 4) perform the flow study.  

We also asked if Micah's diaphragm still looked elevated (something we thought was contributing to Micah's low sats). Thankfully, Dr. Peng said that Micah’s diaphragm looks fine. (I suppose all that praying a few months ago paid off! haha). We assumed that if his diaphragm was OK, then Micah’s oxygen saturations would be OK (which obviously isn’t the case). When we brought up our concerns with Dr. Hanley, he reassured us that he carefully identifies the phrenic nerve (controls the diaphragm) during surgery and moves them out of the way - so that the risk of diaphragm pushing up into his lungs is reduced (but even the act of moving it could cause trauma). These types of things get complicated when there’s multiple surgeries performed - and thus lots of scar tissue - making things harder to identify.  

We really feel that we made the right decision to come to LPCH. We are blown away by Dr. Peng, Dr. Hanley, and the whole team. Their strategy, practice, and team is set up to best help kids like Micah - who have complex pulmonary issues. Perhaps the only way we would have ended up at LPCH is with things becoming as bleak as they did back east. Sometimes roadblocks and hardships in our life are the only things that can redirect us to where we are supposed to be.

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CT Scan and Hematology Appointments

Sorry for the delayed update! I meant to write this last night but I was just too exhausted.

Yesterday morning Micah had his CT scan. We arrived to LCPH around 6:30a and had to wait around a while.

Micah was taken back around 7:45a. Not knowing Micah and how he reacts to anesthesia, the anesthesiologist expressed concern that his pulmonary hypertension might cause problems and land him in the ICU. Strangely enough, I didn't share her worries. I just knew Micah would do fabulous during the procedure, and...

He did!!

The whole thing lasted only 45 minutes and when they told us we could see him he was wide awake, thrashing about, and aggressively signing for water. Good thing I remembered his cup! He calmed down right away and cuddled with his blanket. They let us leave about 20 minutes later.

Today Micah met with hematology to go over when to wean his blood thinners. They want us to get labs drawn on Saturday too. I hate labs. Ugh. Micah has tiny little veins and some phlebotomists get him the first time... And some dig around under the skin >.< It drives me crazy!

Thank goodness we had something to look forward to after the hematology appointment. We got to visit Ray at Google!! I think it's totally AWESOME that LCPH is so close to Mountain View. Ray still plans to take off a few weeks of work but if Micah's stay turns into months then he can return to work while still being close by. Did I mention I LOVE GOOGLE?! Here's a family photo at the Googleplex.

Anyways, thanks for checking in and thank you all SO MUCH for prayers, donations (wow!), and support. Also, don't forget to stop by Alexandra's lemonade stand if you live in the Fairfax area 😊 It's tomorrow, Saturday, July 9 from 11a-2p on the corner of Burr Oak Way and Oak Leather Drive in Burke, VA. Big thank you to the Rossiters!!

Meal Train for Food Donations

Hi folks!

Quick post. A lot of people have asked if we need food while in California.

Short answer: Some food will help! See below.

Long answer:
Being that we are from Virginia and are currently in California - we're in a little bit of unfamiliar territory. We are so grateful to be staying in the Ronald McDonald House, they provide a lot of free meals. We even have a little fridge, freezer and pantry space. If you want to help by ways of food, check out our "Meal Train" for more information.

Meal Train: https://mealtrain.com/o2mgw1

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LPCH Pre-op

Yesterday we made it safely to Stanford!!! The boys were SO GOOD on the 5.5 hour plane ride. I was seriously impressed.

Today was Micah's first appointment at LPCH. Everything went relatively smoothly! We checked in with the heart center and first on the list was Micah's echocardiogram. He HATED it - probably the combination of not having had a nap yet and the three hour time difference. We tried to soothe him with a lollipop, the Minions movie and singing an extended (and odd) version of the Wheels on the Bus.

Those distractions would only work for a small bit before he'd start to get really upset again. He ended up getting so upset that he fell asleep!! He slept through the EKG and through half of our discussion with his nurse practitioners. Poor guy! Dylan was such a good and patient brother through the 4 hour ordeal (he did have an ipad after all).

Also, I've met two other families here whose children have the same heart diagnosis as Micah!! It's so nice to talk to other heart moms and dads who just get it. Here's a pic of me and Lizzy - her daughter Abby was in surgery today for over 10 hours! She's out now and I was told everything went well - Praise God!!

I'm so thankful for LPCH and the RMH for everything they've done for us - and we've only been here for a day!! They've given us a lot of hope and peace of mind. Tomorrow Micah has his CT scan. We'll update everyone again tomorrow evening. Keep praying!!

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Ready for our trip

Ready for our trip: VA to CA

It's July 4th and we're one day away from our trip to Lucile Packard Children's Hospital in Stanford, California. There's so many emotions and so much to do leading up to the trip, but the family is really in a good spot right now.

Even though it's only been two months since being discharged from Micah's last open heart surgery, it feels like this is the right time to take the next step. Micah's first month back at home was really rough. He was on round-the-clock meds, shots 2x a day, not eating, not sucking his paci, generally distraught, sickly, exhausted most of the day, woke up needing water all through the night, would throw up once a day (at any time) and needed to be on 2 liters of oxygen at all times.

The past month has been much better. Micah's more his old self now. He's back to eating nearly all his calories, not throwing up, no more shots, he's standing and trying to walk, sucking his paci and sleeping really well. He's learning so many new words (sign language). Just today he was asking for his "caterpillar" + "book" (who doesn't love the Very Hungry Caterpillar).

As good as he's been doing, we still acknowledge that he's got a long way to go and a third open heart surgery is the only way to get there. He's still on a lot of medications for his Pulmonary Hypertension. He's still on 2 liters of oxygen because he's only using one lung. When his shirt is off you can see how he has to really pull each breath with his right lung :\

We've really appreciated all the prayers and feel the love, over the past months. With this upcoming trip and surgery, there are so many unknowns. But because of this, Laura and I are in a unique position where we can choose to put our hope in God - and not material things like our home, our nearby friends and family. We trust that He will take care of Micah.

July 5: Check into the Ronald McDonald House
July 6: Pre-op appointment
July 7: CT angiogram & Meet with Dr. Hanley
July 11: (7th) Cardiac Catheterization
July 13: (3rd) Open Heart Surgery


Also, we have a local artist at Yellow Doors Studio, Steve, who drew this for Micah. Please like his work on Instagram.

7 But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me. Israel Will Rise 8 Do not gloat over me, my enemy! Though I have fallen, I will rise. Though I sit in darkness, the Lord will be my light. -made for little Micah

A photo posted by SDSwartz (@yellowdoorstudios) on Jun 30, 2016 at 10:47am PDT

Across the Country

So sorry for not having posted for about a month!! I made a short announcement on Facebook a few weeks ago that said:

"Everyone!!!!! Micah is HOME!!!!! He's still on oxygen and we have a crazy med schedule but I am just SO HAPPY that we're all together again!

Also! Dr. Hanley (the surgeon we contacted about a second opinion) has agreed to take on Micah's case!!!! We'll fly out (maybe within the next two months?) for Micah to get a cath and CT. Based on their findings they'll schedule a date for surgery.

I praise God and have a renewed sense of faith and hope. I'll leave you with the last few paragraphs of Dr. Hanley's letter that moved me to tears."

Micah having his third surgery at Stanford is super special because Ray was born at Stanford Hospital!! Everything just feels right about going across the country and I have high hopes :)

We have been so happy to have Micah back. The first week was kinda rough - he wasn't sleeping through the night, he was vomiting quite a bit, and he was fussy all the time. I think he just needed time to adjust to being home.

Fast forward two and a half weeks and he's not vomiting as much, he's actually smiling, laughing and playing, and we're starting to see the old Micah!

The big news is that we got the dates of Micah's procedures at Stanford:

July 6: Pre-op appointment
July 7: CT angiogram
July 11: (7th) cath
July 13: (3rd) open heart surgery

Stanford will be our home away from home as we plan to take Dylan with us. I'm pretty nervous about not having our huge support system out there with us - you all have been so wonderful with bringing us meals, watching Dylan, or just stopping by to hang out.

I pray for a smooth and uneventful surgery and recovery so we can come back to VA as quickly and safely as possible.

Also, the big M will be 2 at the end of the month! Can you believe it?! We've been so blessed to have him in our lives for the past two years. He's shown us his power of resiliency and taught our family that we are all strong in the face of adversity. We love him so much!

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