Friday, July 22, 2016
Successful Surgery!!!!!!!!
Dr. Hanley just came in (9:30p) and said he did the full repair!! He closed the two holes in Micah's heart (asd/vsd), reattached his left lung to his heart, enlarged his right branch pulmonary arteries, incorporated a collateral vessel not seen in the cath lab or on the CT scan, and he placated Micah's paralyzed diaphragm! Dr. Hanley said Miah's pressures in his right ventricle is 29 (normal is 25!!). They even closed his chest (the last two surgeries they had to leave it open). Praise God!!! Hopefully his recovery is as smooth as the surgery. Thank you all so much for your prayers - you truly made this possible!
Thursday, July 21, 2016
The day before Micah's third open heart surgery...
Today is the day before Micah's third open heart surgery. Prayers and all forms of support are greatly appreciated!
Micah after his second heart surgery, taking a break from his oxygen tube.
At this point, Laura and I (and Dylan, I'm sure) feel we've done all we can. Now it's out of our hands.
Micah is doing well today and he's in the best position that he can be, given all that he's gone through. He's going for surgery sometime tomorrow morning. Sometime around 7:20 AM is when things really get going. He will probably be taken back for anesthesia well before that. Laura signed the consent form this morning.
Where we last left off...
To catch you up from Monday's blog post (following Sunday night's craziness). That was truly the peak of our frustrations. Monday itself was mostly a day of calming Micah (and ourselves) down. We really loved all the responses on our blog and got a lot of great advice from other parents, especially in our facebook groups MAPCAs Momas and Papas and Heart or Kidney Parents of LPCH.
On Monday night, Dr. Hanley replied to our email. We haven't had one interaction with Hanley that was anything less than great. He said the surgery would NOT be postponed for 2 weeks and that it would likely be this week.
Tuesday, July 19:
Laura spent the morning and afternoon with Micah and handled a lot of the follow up questions and conversations with nurses.
One key point is that we obtained the exact timeline of medications given from Sunday night to Monday. It turned out that Micah received more than just Tylenol PRNs, he also received two Morphine PRNs. Even though this still wasn't enough medication for Micah (as was evident by all the activity on Monday), he at least wasn't grossly under medicated.
I requested a follow up meeting with our social worker and the attending CICU doctor (Dr. Reddy). We had a great conversation with her for nearly an hour. She was able to explain everything from her perspective, talk about Micah's longer term care and all the nuanced complications that are involved. She was also very receptive of our concerns, so we detailed out some of our suggestions for how the ICU system can be improved to help reduce the likelihood of issues like ours coming up again. While in the meeting, I got a call from Dr. Hanley's assistant saying that Micah's surgery would be scheduled for Friday.
Micah was doing much better today, still a little shaky, but he was even standing in his bed and moving about! (He's a spunky dude) Micah's had fevers on and off for a few days. They're trying to rule out if it's caused by an infection (and not just inflammation).
Wednesday, July 20:
Laura got a call at 6 AM saying that Micah might go to surgery TODAY.
Naturally, I rushed into the hospital. It turned out that Micah was unable to have surgery because his feeds were only stopped at 6 AM, and he needs to be without feeds for 6 hours - which doesn't give enough time for Dr. Hanley to do the complex surgery. At rounds in the morning, the team explained how they're mostly concerned that Micah has an infection, which is causing his intermittent fevers. One doctor explained that "this is not science" and that they have to use systematic guesswork to identify what may or may not be causing an infection and then administer the corresponding specific antibiotics.
On my way to get coffee, Dr. Hanley was passing by in the halls. I stopped him to say hello and he said he would be willing to meet and talk about Micah - right then. We went to Micah's bedside, so he could meet Micah and see how he is doing. We had a great conversation about the details of the surgery (which are outlined in our last blog post) and about how Micah has a nuanced and complex medical condition.
The key info: Dr. Hanley has a very early, game-time decision.
Option 1: Shunt the ghost vessels (Left pulmonary artery vessels that are connected to his left lung).
Option 2: Connect the ghost vessels to the main pulmonary trunk.
If he needs to choose option 1. That's the end of the surgery.
If he can choose option 2, then he does the rest of it. He will fix the right side and close his fenestrated VSD.
Everything that's happened to Micah since coming to LPCH weighs into his decision making.
The rest of the day, Micah's been pretty upsettable - though he has enjoyed playing, reading and watching movies. He keeps cycling through many of his little ASL signs... water, dad, mom, lets go, dylan, grandma, book, pick me up, all done... It's still super difficult as a parent, but it's just the way it is now. Hospital life is totally difficult, things can be steady and OK in a day and your nurse might still break out in tears at the end of her shift. (We love our nurse for the past few days, she's very sweet).
Thursday, July 21:
Laura's been with Micah today. He's more himself - like yesterday and the day before. He hasn't had a fever today, which is good. When Laura signed the consent papers, it had a specific call out for ECMO (life support). For a heart surgery, it's unusual to call out the risk for ECMO specifically. Scary to think about and it definitely brings flash backs to when Micah was on it for a number of days.
At this point, Laura and I (and Dylan, I'm sure) feel we've done all we can. Now it's out of our hands.
Micah is doing well today and he's in the best position that he can be, given all that he's gone through. He's going for surgery sometime tomorrow morning. Sometime around 7:20 AM is when things really get going. He will probably be taken back for anesthesia well before that. Laura signed the consent form this morning.
Where we last left off...
To catch you up from Monday's blog post (following Sunday night's craziness). That was truly the peak of our frustrations. Monday itself was mostly a day of calming Micah (and ourselves) down. We really loved all the responses on our blog and got a lot of great advice from other parents, especially in our facebook groups MAPCAs Momas and Papas and Heart or Kidney Parents of LPCH.
On Monday night, Dr. Hanley replied to our email. We haven't had one interaction with Hanley that was anything less than great. He said the surgery would NOT be postponed for 2 weeks and that it would likely be this week.
Tuesday, July 19:
Laura spent the morning and afternoon with Micah and handled a lot of the follow up questions and conversations with nurses.
One key point is that we obtained the exact timeline of medications given from Sunday night to Monday. It turned out that Micah received more than just Tylenol PRNs, he also received two Morphine PRNs. Even though this still wasn't enough medication for Micah (as was evident by all the activity on Monday), he at least wasn't grossly under medicated.
I requested a follow up meeting with our social worker and the attending CICU doctor (Dr. Reddy). We had a great conversation with her for nearly an hour. She was able to explain everything from her perspective, talk about Micah's longer term care and all the nuanced complications that are involved. She was also very receptive of our concerns, so we detailed out some of our suggestions for how the ICU system can be improved to help reduce the likelihood of issues like ours coming up again. While in the meeting, I got a call from Dr. Hanley's assistant saying that Micah's surgery would be scheduled for Friday.
Micah was doing much better today, still a little shaky, but he was even standing in his bed and moving about! (He's a spunky dude) Micah's had fevers on and off for a few days. They're trying to rule out if it's caused by an infection (and not just inflammation).
Wednesday, July 20:
Laura got a call at 6 AM saying that Micah might go to surgery TODAY.
Naturally, I rushed into the hospital. It turned out that Micah was unable to have surgery because his feeds were only stopped at 6 AM, and he needs to be without feeds for 6 hours - which doesn't give enough time for Dr. Hanley to do the complex surgery. At rounds in the morning, the team explained how they're mostly concerned that Micah has an infection, which is causing his intermittent fevers. One doctor explained that "this is not science" and that they have to use systematic guesswork to identify what may or may not be causing an infection and then administer the corresponding specific antibiotics.
On my way to get coffee, Dr. Hanley was passing by in the halls. I stopped him to say hello and he said he would be willing to meet and talk about Micah - right then. We went to Micah's bedside, so he could meet Micah and see how he is doing. We had a great conversation about the details of the surgery (which are outlined in our last blog post) and about how Micah has a nuanced and complex medical condition.
The key info: Dr. Hanley has a very early, game-time decision.
Option 1: Shunt the ghost vessels (Left pulmonary artery vessels that are connected to his left lung).
Option 2: Connect the ghost vessels to the main pulmonary trunk.
If he needs to choose option 1. That's the end of the surgery.
If he can choose option 2, then he does the rest of it. He will fix the right side and close his fenestrated VSD.
Everything that's happened to Micah since coming to LPCH weighs into his decision making.
The rest of the day, Micah's been pretty upsettable - though he has enjoyed playing, reading and watching movies. He keeps cycling through many of his little ASL signs... water, dad, mom, lets go, dylan, grandma, book, pick me up, all done... It's still super difficult as a parent, but it's just the way it is now. Hospital life is totally difficult, things can be steady and OK in a day and your nurse might still break out in tears at the end of her shift. (We love our nurse for the past few days, she's very sweet).
Thursday, July 21:
Laura's been with Micah today. He's more himself - like yesterday and the day before. He hasn't had a fever today, which is good. When Laura signed the consent papers, it had a specific call out for ECMO (life support). For a heart surgery, it's unusual to call out the risk for ECMO specifically. Scary to think about and it definitely brings flash backs to when Micah was on it for a number of days.
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Monday, July 18, 2016
Thursday, July 14, 2016
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.
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.
Friday, July 8, 2016
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!!
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
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
Wednesday, July 6, 2016
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!!
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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