Wednesday, May 17, 2017


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




Friday, August 12, 2016

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. 

Friday, July 29, 2016

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.


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Wednesday, July 27, 2016

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.



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!

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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!


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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.


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Monday, July 18, 2016

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. 

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Thanks for the prayers. 

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