So, the hard part about updating friends and family when a loved one is in the ICU is that things can change in seconds. I thought it was safe to share that Micah had progressed by having his breathing tube removed (it was actually removed at noon). Well about and hour after the update, he was reintubated. He was extubated for about 12 hours and the last three hours were just difficult.
He's a toddler and everyone knows toddlers throw some of the biggest tantrums. He woke up every twenty minutes thrashing about and crying. His SATs dropped, his lactic acid crept up, he got mottled, and finally, after twenty minutes of fitting, he'd calm down. This cycle just isn't good for healing his little heart so the doctor thought it would be safest to reintubate.
Now that he's reintubated, they can give him sedatives and even paralytics to keep him calm so that he heals. It's not ideal, I'd love for him to be extubated, but not if his tantrumming is going to threaten his own safety...
Thanks so much to everyone for the continued prayers! Yesterday we arrived to CNMC at 5:45a and handed Micah over to anesthesiology at 7:30a. He was SO well behaved. He loved the little car they gave us to stroll around with while we waited.
We got a notification that Micah was put on bypass at 9:38a. We received another notification that surgery was going well, and a final notification that he was taken off bypass at 12:11p. We met with Micah's surgeon, Dr. Jonas at 1p. Dr. Jonas replaced Micah's pulmonary artery conduit that leads to his right and left pulmonary branches. He was even able to mostly closed the hole in his heart (his VSD between his right and left ventricles). This is MAJOR surgery and he told us Micah did really well but since he was still bleeding they decided to wait an hour before closing his chest.
We had lunch feeling SO relieved! Then we headed to to the CICU family waiting room. Around 2:30p we felt like something was wrong because Micah still wasn't in his recovery room and we hadn't heard from any doctors about his status. Heather, Micah's social worker, came and told us they decided not to close Micah's chest because the bleeding wasn't stopping. They needed time to clean him up and get him situated in the recovery room. It was almost 4p by the time we got to see our precious boy. He was so beautiful and I had so many flashbacks of his long hospital stay in 2014. He seems so much bigger lying in his bed. Nurses and doctors keep mentioning how big he looks.
He is on serious pain killers and a heavy paralytic - basically in a medical induced coma.He is so much stronger now! The doctors continue to tell us that he's stable and responding will to weaning his medications. They hope to close his chest sometime tomorrow.
We got a family photo in when Ray relieved me for the night. We weren't sure if we should let Dylan see Micah but he insisted. "Where's Micah? I need to check on him! He's in there? Where is he?!" It was adorable. We got a little video of him saying "I love you" to Micah for keepsake.
I feel really blessed to have such a wonderful little family. We'll continue with the updates! xoxo
Micah is scheduled to have his second open heart surgery the day after tomorrow, Tuesday, February 23, 2016. Micah is having his pre-op appointment tomorrow and we're meeting with the surgeon to discuss the procedure. We'll know more tomorrow.
I'm feeling pretty nervous about it. His last hospital stay was nearly four months long. I know he's so much stronger now but I can't help but feel worried. He's come such a long way! I also feel a bit down that he'll likely regress in some areas of development. He's SO CLOSE to walking! And we even went to the park a few times this past week and he loves climbing and going down the slide. Here's a little video of him taking some steps. We'll update everyone Monday or Tuesday. Send us your prayers and positive thoughts!!
We're in between hospital stays and happily spending family time at home.
Dylan just turned 3, Micah is nearly 1.5 years old.
We excited for the upcoming holidays!
Micah has an MRI this week. He has to be put under anesthesia for the duration of it. We're hoping that the doctors will have a solid plan for when he'll need his next open heart surgery.
It's now Sunday afternoon and Micah's been in the hospital since Thursday morning. We're at the Heart and Kidney Unit at Children's - which is the step down unit. Right after the cath, Micah was sent to the Cardiac Intensive Care Unit (CICU). The main reason we're still here is because his breathing needs to get in order. Here are some photos and videos from our stay, to help give you an idea of how he's been doing.
Pre Cath: Thursday
Post Cath: Friday (in the CICU)
Post Cath: Saturday (in the HKU)
Post Cath: Sunday (in the HKU)
Finally removed his oxygen tube!
He's had a pretty solid good night sleep in the HKU both night. He's been eating and breathing on his own some today. He's still super tired, but actually smiling some today (not around any nurses/doctors, though). Here's to him coming home tomorrow! Thank you all for prayers and well wishes - Laura and I really appreciate it.
We didn't do many photos or videos of Micah in his first 100+ day stay at the hospital because he really just laid there pitiful, most of the time. Now that we know what his personality is like, seeing him in pain causes a different kind of heartache.
Why does Micah need caths so often?
His last cath was in Jan, 2015. This is his fourth cath. The reason he has already had so many and the reason why he will need them all through his life are mostly for two reasons.
The cath's give information that is useful for planning ahead.
The doctor can do some fixing up, while they're in there.
Can't x-rays or sonograms do the trick? or It seems like caths are so risky.. is it worth it?
The image quality is so much better than a sonogram and an x-ray does a different job. X-ray's will show space and lack of space. For example, bone (white) and air (black). It's useful for viewing information about the lungs. To get an idea about how much better a cath is vs a sonogram, Micah currently has a pseudo aneurism almost the size of a golf ball that they didn't notice via sonogram back in July.
Being able to balloon the narrowings in his lungs, close off the collateral arteries (too bad they don't just close themselves) and perform other extreme scenario events are some of the fixes that the doctor can perform. These things that help prevent the next surgery from happening sooner, rather than later. You want to avoid surgeries on little babies as much as possible.
One year ago today we were discharged from a 109 day stay at Children's National Medical Center. And to celebrate, we're back in their CICU...
Micah had a scheduled cardiac cath (his 4th) with Dr. Kanter this morning to check out his heart and balloon any narrowings in his pulmonary arteries. He also got his PEG tube changed to a "low profile" button (so excited about that!).
Dr. Kanter didn't balloon Micah's right pulmonary artery because it looked nice and large! The left pulmonary artery looked super small. Kanter ballooned it causing the lower left lung to be overwhelmed with the new blood flow. The capillaries leaked into the air sacs and now he needs to recover in the CICU. The riskiest part of this is when the blood flow transitioned from small to large. The pic below shows the before and after - there is way more blood flow toward the lower part of the lung.
Kanter also told us about a pseudo aneurysm about the size of a golf ball growing off the conduit. He suspects that the conduit tore a bit during the cath he had back in January. I don't think it's at risk for bursting but it does change the timeline for his next open heart surgery. We estimate his second surgery to be within the next six months.
Lastly, Kanter coiled off three of Micah's remaining collateral arteries that weren't vital for blood flow to the lungs. Now Micah is collateral free! (Something that happens to most of us shortly after birth).
I feel worried and taken aback at the news post-cath. My biggest fear is another larger tear and/or clotting. And we just found out that he didn't tolerate extubation after the cath so they'll try again in a few hours. If you remember last year's hospital stay, his breathing tube was the main thing that kept us for so long. The next 24-48 hours will keep us on our toes but I have faith that he will get through it so we can bring him home this weekend.
Yesterday was Micah's first birthday! I remembered the feeling of his pending arrival and how worried we were not knowing how the birth would go or how he might handle surviving outside of the womb. It took 4 long months of fighting in the hospital but he DID survive!! I can't tell you how overwhelmed with happiness and love I feel for Micah. He is such a blessing I can't believe he made it to his first year after all of the near-death experiences he faced.
I honestly feel like this birthday is more like a celebration of survival and resilience. He is one of the happiest kids I know - his eyes literally sparkle when he smiles!
Ray and I were talking about Micah's easygoing demeanor a few days ago and he said, "considering Micah's our medically complex child, he is a lot easier than Dylan was!" And thats saying something because Dylan was also an incredibly easygoing baby.
And to celebrate his birthday, we had a small family get together. I know he loved the attention but once he dipped his hand in the frosting he decided it was all too much. He cried but still managed a few bites of cake!
And now we're relaxing at the beach. I don't know if he's a natural beach baby but he sure is cute!
