About Tetralogy of Fallot
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
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
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 -
he needs to be cut off the medications - he
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
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.
: 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,
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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