A Little Something Extra

Thursday, May 29, 2008

Brett Banford

Did anyone watch So You Think You Can Dance? last night? I didn't, but check out this video. Make sure you watch the ending: "People with disabilities can actually have a normal life and live it."

Wednesday, May 28, 2008

Busy at home

It's been a bit hectic around here this week, and I apologize for the delay in an update. We're adjusting to life back at home as well as preparing for my brother, Jim's, wedding this weekend. On Sunday we have some family and friends coming up here to visit so we're frantically trying to clean our house. But don't worry... we're not going to exert any effort in cooking. Welcome to Wisconsin... enjoy some brats and beer on our deck. And we'll throw in some potato salad and cole slaw from the grocery store, along with some frozen custard from Culver's. Can't cope with cooking yet.

Micah hasn't taken any milk from a bottle since last Wednesday, I think (I wish I had asked for copies of everything while he was in the hospital). If a few drops of milk drip from the bottle into his mouth, he inevitably gags. He gags also on occasion due to what appears to be post-nasal drip congestion. He gags also on his own saliva if he decides to suck on a pacifier. So in we go for another swallow study. At what point do I get concerned about the amount of radiation this kid has been exposed to?

Micah's sleeping has improved each night since he has gotten home (the first night, he woke up about every hour... it was quite tiring). We are going against all sleeping advice for babies and are letting him sleep occasionally in his swing because it keeps him elevated and reduces the number of times he wakes up coughing or gagging.

But the smiles are increasing in number, along with the number of hours he's awake during the day. He doesn't poop out as easily as before his heart surgery. He's a very forgiving little guy. One minute he's miserable with the gagging thing, the next minute he's smiling at you.

I want to go home!!! (taken 5/16)

Smiling at Uncle Jim (and soon-to-be-aunt Jen)

This is Crazy Mike, a CV PA (cardiovascular physician assistant). He didn't actually close Micah's chest, but for some reason he liked hanging around us. I think he just felt guilty for calling Micah a "she" when he first met Micah in the PICU.

Check out the eyelashes

Meet Dr. G. She was Micah's critical care doctor during most of his time in the PICU. She was a great advocate for Micah.

There are so many people I wish I had photographed while there. I'd say "maybe next time," but I'd really rather there not be a next time (though there probably will be).

Saturday, May 24, 2008

On Our Way Home

Micah has been discharged! We're heading home right now. Yay! I'll post more later.

Thursday, May 22, 2008

GJ Tube on Friday

Currently Micah has a g-tube, which is a way of pumping food directly into his stomach when he's not able to eat it himself. Tomorrow morning at 8:00am, a radiology PA will be inserting a gastrojejunostomy (GJ) tube through the existing hole in his belly. That tube will go through his stomach through the duodenum (first part of the small bowel) into the jejunum. This way, his food will bypass his stomach and duodenum and be fed into his small bowel. Hopefully this will help his belly pain that seems to be caused by a backup in his duodenum.

Micah recovered well from his endoscopy this morning (which lasted longer than the hour I had been prepared for). And it was quite a relief in the PACU to hear him cry afterward (I'll forever be concerned about his right vocal fold now that his left one is paralyzed). The duodenum is quite dilated. Not sure why that's the case and not sure how long it's been like this. But it was clear that there are a couple of things in there that could be causing pain for him.

So... what does this mean for feeding him and letting him eat orally? According to the gastroenterologist, we can still feed him orally. But we'll probably have to drain that from his stomach once it gets there. Hm. Should be interesting. Or annoying. But hopefully he will be more interested in eating if his belly isn't cramping up when he eats.

Ultimately, there will likely be a surgery to repair something in there. The surgeon who did his original duodenal atresia surgery and follows up on Micah in Neenah (he's there once a month) has already heard about today's procedure and will be reviewing the tapes of the endoscopy. I'll talk with him about it at Micah's next appointment in early June. If he does need another surgery, I hope we can get a two-for-one and take care of his undescended left testicle at the same time. Can we get a punchcard for the operating room at Children's Hospital and after four intubations, the fifth one is free?

When Micah's g-tube was first placed back in late February, the prevailing thoughts were that he would only need it until a month or so after his heart surgery when he would be strong enough to eat everything by mouth. This GJ tube is a step in the opposite direction. He will be connected to a feeding pump for 16-18 hours/day. If it makes him a more content baby who is more interested in a bottle, it's worth it. But I won't tell you it doesn't make me incredibly sad.

And mad. I'm really mad. Mad at myself for not pushing harder earlier. Mad at some doctors who made incorrect assumptions about Micah's belly. Mad that Micah went through months of pain. Mad that if this had been caught earlier it might not be as bad as it is now.

It's easier to "be" mad than sad. But ultimately, I'm just very, very sad.

Oh So Sad - Pray for the Chapman family

I cannot imagine how absolutely devastating it would be to lose a child to a horrible accident, especially at such a young age. Steven Curtis Chapman, Christian recording artist, and his wife, MaryBeth, lost their youngest child, Maria, to a tragic accident in their driveway. Apparently one of their sons did not see Maria in the driveway and his vehicle struck and killed her yesterday.

The Chapman's have been adoption advocates since adopting their first of three girls from China (they also have three biological children). You can see a photo of their family on their website: www.stevencurtischapman.com. Please pray for their family as they grieve. And pray especially for their son involved in this tragedy... that God would meet him in his distress and help him feel God's immense love for him (I don't know which son, but it's either Will Franklin or Caleb). Their eldest daughter, Emily, was recently engaged last weekend so pray for her and her fiance as well.

Wednesday, May 21, 2008


(side note: Thank you, Amy, for updating the blog so often for me since the hospital wireless does not allow me to do so on my laptop... I'm at the Ronald McDonald House right now with 15 minutes before the computer lab closes!)

After a long day of waiting, a gastroenterologist finally saw Micah this evening at 6:00pm. I won't bore you with all the details of the day. But after this GI guy saw him, he informed me that he would like to do an endoscopy tomorrow. There are a few things that could be causing the "pooling" of liquid in Micah's duodenum, including scarring from his duodenal atresia repair when he was 2 days old or his duodenum simply not contracting. The former would require surgical repair. The latter... I'm just not sure if there's even a fix for that.

Anyway, we'll know more tomorrow. Micah is on the schedule for about 7:30am. Please pray that there are no complications with the anesthesia (specifically, that his right vocal cord would be well-protected and that he does not need to remain intubated after the procedure is finished) and that the GI doc will find something that will explain Micah's enlarged duodenum.

Mystery solved?

We're still here. But we might be getting closer to understanding Micah's tummy troubles. Hooray!
(side note: Micah does not have an oral aversion, praise God!)

History - Micah started screaming almost immediately after we brought him home on 2/29. Initial thought was constipation. Then it was due to just being a kid with a g-tube. Then it was a dairy allergy. Then it was a dairy and soy allergy. Then it was difficulty digesting complex proteins. Then it was slowing of the digestive system due to a weak heart. It might be all or none of the above. But there appears to be a potentially larger issue causing Micah's feeding difficulties.

Micah had a swallow study done yesterday morning (they add barium, I think, to his formula and put him on an x-ray table to watch how the food goes down when he swallows). The very cool thing is that the swallow study went well. He was almost completely asleep, so he wasn't irritable and he sucked and swallowed almost perfectly well. His speech therapist and I were a bit confused, but it's a good thing that we were able to see that his body is capable of doing the right things. But he still wouldn't eat much during the day, and he just screamed when presented with a bottle for the next feed. That screaming with feeding sent me over the top. Because the feeding intolerance wasn't really present last week, I asked if it could be due to his MIC-Key button being replaced on Monday.

So, he went back to x-ray for a g-tube study. They injected a barium liquid through his g-tube to see if it's placed correctly and not obstructing anything. The g-tube placement looks good. But the radiologist looked a bit longer (I can't remember the acronym, but it's an upper-GI study). He said, "It appears that the liquid is pooling at the upper section of the small bowel." I asked him if that was his duodenum and he looked at me kind of funny and asked how I knew that. I told him that Micah was born with duodenal atresia and it had been repaired when he was 2 days old. At that point he went back to Micah's history to see previous upper GI studies. He was very concerned when he found out that Micah had only had one previous upper GI study: the day before his duodenal atresia surgery (apparently they only do a follow-up GI study if the baby doesn't tolerate his feeds... "tolerate" has different definitions, depending on who you talk to).

Micah went back to x-ray an hour later to see how much had gone into his intestines. It appeared that most of it had made its way into his intestines. We knew there wasn't an obstruction, or he wouldn't be pooping. But it didn't go through as quickly as it should have. It might be that his duodenum is just simply not functioning (contracting to push food through). Or there could be adhesions around the repair sight that make the passage more narrow than required. The surgeon on service today came by this morning and he's going back to review the x-rays. I think he's planning to meet with the gastroenterologist too. I'll try to post again later today with an update once I hear something.

Micah will likely soon be glowing from all of the x-rays he's receiving. It's starting to become concerning. But I do want to find out what's going on before we leave here, which might be Friday. People keep walking in wondering what we're still doing here. He's been cleared by cardiology so we can go home once the GI issues are resolved, whatever that means.

Tuesday, May 20, 2008

Not today, probably not tomorrow

We're not home. And we probably won't go home tomorrow either. We might actually be at the place we've dreaded since he had feeding issues in the NICU. That place is referred to as "oral aversion." Micah has no interest in a bottle. In fact, "no interest" is an understatement. He screams when he senses it's time to be fed. I won't bore you with all the details, but this is a really bad thing. The act of sucking builds muscles in a baby's jaw that form the foundation of speech development.

The upside to this new-found oral aversion is this: he possesses deductive reasoning capacity. That's great mental development. He realizes that suck+swallow=pain, so he just doesn't start the process so he doesn't experience the pain. Stay tuned for his next milestone: long division.

Saturday, May 17, 2008


When I mentioned yesterday that we'll be missing Micah's coos that we heard before his surgery, I didn't mean to imply that he won't be able to talk. He is able to make sounds... the sounds are just raspy compared to before. And he's now taken to growling, so rather than being our courageous lion, we might have to call him our bear cub.

The ENT doc came in this morning to see if I had any additional questions. He was trying to be encouraging that we would actually be able to go home soon, whereas other babies in a similar circumstance would not because their parents would be struggling this week about placing a g-tube. But Micah already has a g-tube, so he'll get to go home. It was as if he expected me to be thankful that Micah already has a g-tube. Can't quite get to "thankful" that he has one because he needs it. But I am definitely thankful that the technology exists. If it didn't, I don't think our little guy would be alive (I'm actually not sure how long ng-tubes vs. g-tubes have existed, but I think you get my point).

So speaking of going home... MONDAY! Micah is scheduled for a sedated echocardiogram at 7:15am on Monday. If all looks good, he will be discharged on Monday afternoon. Yay!

Friday, May 16, 2008

Vocal cord paralysis

Micah's left vocal fold is paralyzed. Apparently this occasionally occurs during heart surgery since the nerve runs close to the heart. What does this mean for us? Heartbreak at the thought of not hearing the sweet little coo's we heard before his surgery, constant worry that he will aspirate milk, saliva or medicine into his lungs, and a longer attachment to his feeding tube.

It's so not fair... this poor little guy. After months of anticipating his feeding to improve after his heart surgery, we're now faced with more feeding problems than before. He can only eat on his right side because that lowers the risk of aspirating. He now hardly takes 5 cc's of milk before coughing or gagging.

According to the ENT (Ear, Nose and Throat) doctor who scoped his throat today, there's about a 20% chance that the nerve damage is temporary. And we know that God is able to heal Micah's vocal cord if He chooses. Please pray with us that this would be God's will for Micah. And please pray that we would rest in the knowledge that God loves Micah and desires His best for him.

Thursday, May 15, 2008

Snuggles and 4th floor

We were able to snuggle with Micah yesterday, praise God. He didn't make it to the floor yesterday, but his voice improved so we were able to start feeding him. Nathan and I spent some time at the children's museum yesterday while Mark spent time at the hospital.

This morning I arrived in Micah's room to see that he had been completely weaned off oxygen overnight. Look, Mommy, no O2!
Micah is now out of the PICU (as of about 11:00am today). He's sharing a room with another baby, so I don't think I'll be sleeping there tonight. I had planned to room in with him, but the thought of being sleep-deprived due to TWO babies crying is a bit too much for me, especially since one of them isn't mine.

I don't know how long Micah will be in the hospital. His bloodwork showed elevated white counts this morning, so they'll be watching him for infection. I hope we can go home in a few days.

Here's a shot of Micah with the surgeon who repaired his heart. Thank you, Dr. G!

This is nurse Kim. She's the one who spent all day on May 5th coming out of surgery to tell us what was going on with Micah. She had a long day that day too.

This is some of the posse (aka, the Critical Care doctors who were caring for Micah in the PICU)

Tuesday, May 13, 2008


Micah is having a good day today. They took out his chest tubes this morning and he didn't enjoy that at all, but then they took him off the CPAP around lunchtime and he's doing great. Another line was removed and they're now giving him food through his feeding tube. He still doesn't have much of a voice and there's some concern about nerve damage so they're wary of letting him take anything orally yet. But there are now only two things that need to happen before he will be released to the floor: 1) remove the CV line and 2) wean him off one more heart med and replace with another that isn't on a continuous drip.

So it looks like he might be moved to the floor tomorrow. Praise God! After that, I think there are two more major things that need to happen before he's released: 1) increase his feeds to full volume and have him "tolerate" the feeds (aka, no puking or screaming) and 2) no more oxygen.

He's kicking his legs, moving his head, and even SMILING. Can you believe it? It's amazing how much better he must feel today. Once his CV line is out, we'll be able to hold him with ease. Mark is coming down tonight. My mom is heading home tomorrow so she's going to bring Nathan here on her way through Milwaukee. I'll spend the day with Nathan and Mark will spend the day with Micah. Then Mark will take Nathan back to Neenah and Mark's mom will take care of Nathan on Thursday and Friday. Maybe we'll even get to bring Micah home on Friday or Saturday!

Enjoy the new photos... I certainly do!
Trying to rip off his nasal cannula (he's frequently successful, but I'm trying to keep him calm enough so that they don't have to put the nasty patches on his temples)

He occasionally looks like he's trying to lick the cannula off his face

This is the closest thing to a smile I could capture on film

Thanks for praying for our little guy. He's made huge steps forward today.

Photos of Micah

Check out my scar and my cool headgear! (pay no attention to the nasty bruises from my IV lines)

Don't I look like a baby Kramer getting cross-eyed? (finally, a sponge bath and hair wash yesterday!)

Monday, May 12, 2008

CPAP still on

Sorry, still no photos to post of Micah with his helmet/snorkel/elephant trunk apparatus (AKA the CPAP). I'll try to email a photo to Amy tomorrow and ask her to post it.

I was really hoping the CPAP was going to be a 24-hour affair, but no such luck. The new attending MD (they switch every week) said that Micah needed to get his voice back before he'll talk about stepping him down. Great. And I already miss last week's attending. Apparently the nurses like this week's attending better, but I don't care for his bedside manner.

Micah had a very rough spell this afternoon and was completely inconsolable. It was heartbreaking. He was crying so hard, but not making much noise. Morphine didn't even do the trick. His nurse had to add a sedative. Maybe he will be more comfortable tomorrow after they take out his two remaining chest tubes (okay, maybe he'll be more comfortable a few HOURS after they take them out... he screamed for a while after they took the last two out on Saturday). All I want to do is pick him up and snuggle him to sleep. I can't stand it.

I'm sick of "sad jail." I know that Children's Hospital is supposed to be a place of hope. But I still see it from a sad perspective. It's my realistic side coming through, I guess (Mark will call it pessimism, but I prefer to call it realism). I enter in the morning to see moms in their slippers going to get a cup of coffee. They've been with their sick child all night and just need a break. Or I see moms pushing their disabled teenager in a wheelchair into the Clinics building for one of likely multiple visits that week, looking like they desperately need a break but trying to keep smiling.

I have to say, that I don't feel like I'm entering prison as much as I did when Micah was in the NICU after he was born. Maybe a good portion of that is because I'm no longer pumping so I at least don't have that piece of equipment to worry about and I don't have to be doing something I hate every three hours. The nurse asked me if I was headed home when I was walking out this evening. "I guess that depends on your definition of 'home,'" I said. I can't stand that Micah has been in the same bed in the same room for 7 days. I know he won't be moved to the 4th floor until he's off the CPAP, and I don't think they will move him on high-flow either so it might be a while. His lungs are still rather sick.

"His lungs are sick." That's what the nurse told us around 6:00pm last Monday while we were in the surgery waiting room (after all others had come and gone). That's when they were having a difficult time getting him off the bypass machine. That was a long evening.

Micah had his first echocardiogram since surgery today. It showed that he has a small amount of leakage through the valve on the right and "moderate regurgitation" on the left side. According to the cardiologist, that regurgitation is exaggerated by the inefficiency of his lungs so it should improve as his breathing improves. Please pray that is the case.

I hate that we're now needing to plan for another weekend in Milwaukee. I don't know how much longer we will be here, but the fact that Micah is still in the PICU does not bode well for us leaving soon. I just want to get him home so that we can move forward. That statement alone makes me cringe. What does that look like for him? He's four months old and can't hold his head up. How much of that his weakness due to a weak heart? Or is it more associated with the fact that he has Down syndrome and has low muscle tone? Time will tell. But I'm so jealous of the family that is leaving tomorrow with their baby girl whose heart was repaired a week ago and will likely never see Children's Hospital again and will likely develop at a "normal" pace.

Sorry. Having a pity party tonight.

Sunday, May 11, 2008

Micah's weekend experiences

(I wrote this hours ago, but I'm just now getting around to posting)

Yeah! Micah was extubated yesterday. There was an area of one lung that had collapsed. He had to get some extra pumps of 100% oxygen. He did fairly well yesterday (Saturday), but he was put on high-flow oxygen after just a couple of hours. Then this morning they took him off the narcotics and he was more than irritable when we arrived this morning (if his voice was working, we would likely have heard him down the hall because he was screaming but unable to make noise). His blood pressure was crazy high. He's had some more oxygenation issues today so now he's on CPAP (looks like a football helmet with a snorkel on the nose). Ugh. Are we ever going to get out of the PICU?

But... when he was irritable this morning, he actually orally took two bottles of two ounces each. Rock on, little guy! He hasn't done that in two months. Now we just need to get him off the CPAP so that he can eat again (he can't eat while on CPAP). It stunk having a new piece of equipment enter his room (and they're not comfortable taking away the ventilator yet so it's not as if the CPAP replaced anything). He's no longer on one-to-one care from a nursing perpective. But we're still in the PICU.

Micah was so agitated this morning that we didn't feel we could leave him alone. So Mark stayed behind while I went to brunch with Nathan, my mom, Mark's parents, Mark's brother, and my brother and his fiance. It was great to be with everyone at lunch, especially my little Nathan, but I missed Mark and Micah. It had been a week since the four of us were all together. And no luck for a Mother's Day surprise to check out of the hospital. But enjoy the new photos:

Alert on Friday morning for the first time

Saturday before extubation with his lion (thanks, B family!)

Saturday after extubation (he just wanted to lick his thumb but he wasn't quite strong enough to get his hand to his face without help)

Resting on Saturday

Attempting to hold Micah on Saturday (it didn't work... he was so uncomfortable I just cried)

Nathan at brunch (chocolate pudding did a job on his face)

Mother's Day with my boys (before addition of CPAP)

Happy Mother's Day, all you moms out there. Snuggle 'em if you got 'em. And to those of you for whom Mother's Day is somewhat sad because your mom or your child is with Jesus instead of with you, or you're missing a child you've been dreaming of for so long, may you find rest and peace in Christ.

Friday, May 9, 2008

AV Canal Details

Micah is sort of alert this morning. I walked in and his eyes were open (sort of rolling around a little, though). His blood pressure went up while I was there because he got rather "excited" to see me. I just wanted to scoop him up and make everything better. Oh, I hate not being able to hold him.

His pain meds are down. He's not as puffy today so his body is removing more of the excess fluid. More importantly, he's not on the pacemaker anymore and his heart rate is doing great (about 140 bpm). There's a possibility that they will try to take him off the ventilator later today. Please pray that he would be able to come off the ventilator the first try. That's one more step toward getting out of the PICU. After he's extubated (off the ventilator), the next step is to remove the chest tubes which are used to drain excess fluid from his chest. I'll try to update again later today after rounds. Oh, by the way, Santa is back today! :-)

AV Canal defined - Some of you have asked what was actually done in his surgery and why. Here's a brief summary in Jennie language (those who really know medical stuff will likely find this inadequate at best - Noel or Andy D, if I get something wrong, please comment). An atrioventricular canal defect (AV Canal) is basically where the inside of the heart does not completely form in utero. It's not as simple as your standard holes in the heart. He did have holes, both between the atria (ASD - atrial septal defect; the atria are the top parts of the heart) and the ventricles (VSD - ventricular septal defect; the ventricles are the bottom parts of the heart). But he also had a big hole in the center, meaning that rather than having two valves separating, top to bottom, the atria and ventricles, one on the left and one on the right, he had one big valve in the middle. This is referred to as a "complete AV canal defect." There was 100% mixing of good blood (oxygen-rich) and bad blood (oxygen-poor).

Micah's surgery was longer than initially planned because the middle part (creating two valves from one) was a bit messier than they appreciated on echocardiograms (ultrasounds of his heart before surgery). Dr. G spent a lot of time on the valves to minimize leakage and hopefully prevent future needs for surgical intervention.

Myanmar update - The news this morning said that the UN is halting aid to Myanmar because the Myanmar junta ("government" in a very loose description) has siezed everything coming in. Please consider sending aid to Asia Heartbeat since Bill is in the country and is able to distribute supplies to people who really need the food, etc.

Thursday, May 8, 2008

Myanmar relief

On a separate note... we have a dear friend who is a doctor in Myanmar. I've known Bill since 1993 and he emceed our wedding reception.

Bill was in Thailand when the cyclone hit. He has finally been able to get back into Myanmar to assess the damage. I'm hesitant to post his entire letter, but suffice it to say that all of their orphanages have been affected. There will be many more people who will die from lack of water and food. It's been difficult for foreign aid to get to places where it is most needed. But I know that money sent to Bill's organization will actually reach people who have been affected because he and his group live and work there. They are beginning with purchases of rice, beans, cooking oil, candles, water treatment kits, plastic sheeting and charcoal. They also need to rent vehicles and cellphones.

If you would like to give to the relief effort there are 2 options. You can give by credit card on their website at www.asiaheartbeat.org or send a check by mail to Asia Heartbeat, PO Box 63720, Colorado Springs, CO 80962-3720. Asia Heartbeat's overhead is minimal, and your money will go directly to relief efforts if you so desire.

Thank you for praying for Bill, his wife, the staff and children at the orphanages, as well as the rest of the country of Myanmar.

Chest Closed!

The surgeon just came out to talk with me and she said they were able to close Micah's chest. Thank you, God! She added two more pacer wires to help pace his heart for a bit, but she said the procedure went very well. Thanks, everyone, for your prayers.

Quick Update on Micah-Thursday Morning

The PA came in this morning and said they had a surgical case cancellation this morning so they're going to do Micah's exploration at 9:45am instead of 2:00. Please pray that goes well and that the surgeon is able to close his chest. He's still very swollen this morning, but he's starting to move a bit. He was moving his tongue and wiggling his hand a bit so I put his little hand by his mouth. He started moving his tongue more. Sweet little boy.

Wednesday, May 7, 2008

PICU day 3

The good news of the day is that Micah's internal oxygen saturation levels are going up, meaning his heart is doing a good job of pumping oxygen to his brain, kidneys, etc. The price he's paying for that is that his heart rate is still quite high (currently 195 and it's been up to 206 beats per minute). It's too high for the pacemaker to take over (he "competes against it").

The surgeon is going to do an exploratory surgery here in the PICU tomorrow at 2:00ish. If she can close his chest after that, she will. But she doesn't feel comfortable closing his chest with his heart rate as high as it is. So please pray that his heart rate would go down overnight. It's possible that some of the leads, etc., inside are irritating his heart so taking some of the stuff out might help lower his heart rate.
** I typed that earlier, and I just called his nurse to ask about him before I go to bed, and his heart rate has slowed enough that they're now able to pace him at 170. Praise God! I think that's still too high for the surgeon to close his chest, but it's a lot better than 200.

When I was getting ready to leave this evening, Micah's blood pressure started increasing and his attending thought he might have some junk in his lungs. That did not appear to be the problem. But they've given him more pain medication and it appears to be lowering his blood pressure so the little guy's pain level was probably too high and that was causing his blood pressure to go up. Oh, how I wish I could just fix him up and take him home.

Micah's cardiologist from the valley called me in the room today just to check in. She'll be here in Milwaukee tomorrow so she's planning to stop by. It was very kind of her to call and check in.

I'll try to update after the exploratory is finished. Thanks for your prayers, everyone.

Tuesday, May 6, 2008

Micah - Tuesday morning

Here's a photo of Mark with Micah before we handed him over.

Here's what he looks like now.

And here's a photo of Micah's nurse for 12 hours today. His name is Jeff and he's worked in the PICU for 24 years. He tells little kids that this is Santa Claus' job during the off-season and they totally buy it.

7-10 days has become more like 12-14 days. It appears he will likely be in the PICU through the weekend. I just spoke with the attending and she doesn't think they'll close his chest until at least tomorrow. After that, it will be a couple of days before they take him off the ventilator, and a few days after that before they'll move him to a room.

We got into the PICU around 11:00 last night. We thought we would just stop in, see him in his new location, and head to the House. But there was no way we could leave with lots of doctors in his room trying to figure out how to best control his heart rate, which was 188 bpm at the time.

He is doing better this morning. They've gotten his heart rate down so they are able to control his heart with a pacemaker. He has five drainage tubes from his chest and lots of leads for the pacemaker, etc. He has been on a cooling blanket to help keep his heart rate down. I hate holding his hand and having it be so cold.

I just want to smooch his face and snuggle him. As you can see by this photo, I can't do that right now.

There's a couple who spent a good part of yesterday afternoon in the surgical waiting room with us. They're from Wausau and their pastor came in last evening and stayed the night at a local hotel to be with them. This couple is staying at the RMH as well and ironically are in the room next door to us and their little girl is in the PICU room next to Micah's. Anyway, their pastor came in and prayed with us for Micah this morning. He's a super great guy. He shared from Philippians 4. I referenced the same passage back in November.

Monday, May 5, 2008

In the PICU

10:00 - Micah is finally in the PICU (Pediatric Intensive Care Unit). The doctors and nurses wheeled him past the waiting area for us to see him. We haven't been allowed in the PICU yet, but we'll go in soon and just check out his room and head off to get some sleep.

It's probably going to be a long recovery process for our little champ. They had to leave his chest open because of the amount of time he spent on the bypass machine and he's pretty swollen. We're hoping they'll be able to close his chest in 24-48 hours. He's quite sedated and will be for a while. He's on meds to help his breathing and minimize his blood loss.

I don't know how to ask for prayers except for the obvious.

Urgent Update from Jennie

6:45pm - Micah is still in surgery. The valve repair took longer than expected. They had to put him back on the heart/lung bypass machine twice. They've given him extra medications to help his lungs because they are not responding well. But they've now taken out his canula's so they believe that he will not need the bypass again. They might need to keep his chest open tonight. He's apparently quite swollen. We haven't seen him since we handed him over at 8:45am. It's been a long day.

The Latest from Jennie

1:30 - Nurse Kim came out to talk with us again. Micah is still on the bypass machine because Dr. G is still working on his valves, which is the most tedious and detailed part of his repair. She's going to come out again at 2:30 to give us another update. Please pray that his valve repair would be finished by then and she's moved on to his ASD.
I'm still in awe of this whole process. Your heart is roughly the size of your fist. So Micah's heart is roughly the size of HIS fist, which, trust me, is not very big. Think four chambers, a couple of holes to repair and a valve to separate into two. And Dr. G's hands are in there working on this (well, okay, her hands are not really in there, but she's guiding instruments that are in there). Thank you, Lord, for gifting surgeons with the skills to fix our little guy's heart.

Update on Micah

Here's the latest from Jennie:

9:30am - Micah is currently in surgery. The surgeon's nurse just came out to tell us that they're still placing lines in him and that he'll be on bypass in another hour or so. The surgeon told us this morning that we would likely not see her come out until about 3 or 4 this afternoon. She will use an artificial patch to repair the VSD (hole between the ventricles), Micah's pericardial tissue to repair the ASD (hole between the atria), and stitches to repair the valves.
Micah had a terrible night last night. In retrospect, we should have slept at home last night and driven down here early this morning because none of us got any sleep. Micah cried a lot. Then as I was moving him in the crib, I got his g-tube caught on my shirt which caused his mic-key button to come out (again). Yes, it's true. Micah's 4th trip to the ER was the morning of his open-heart surgery. Mark took him in (guess it's a good thing we were across the street). There wasn't an open seat in the waiting room and the wait was estimated at 3 hours. Mark asked if he could take Micah somewhere that wouldn't be around all the sick people (after months of keeping him away from illnesses, the last thing we need is for him to get sick this week). They had mercy on him and ended up putting a tube in his belly immediately instead of making them wait. They would have taken his mic-key button out during surgery anyway. But it was quite kind of them to just take care of it in triage so that they could get out of there. And I think they appreciated getting a smile and a thank-you out of Mark, since most people they see at 1:00am are not smiling.
As soon as his button came out, Micah stopped crying. You would think the opposite would occur, since it surely is painful for it to come out. But really, how much of his current tummy trouble is that his mic-key button is bothersome? Micah was talkative with the nurses and doctors this morning... such a sweet boy.
Thanks for praying for our little guy.

Friday, May 2, 2008

Too many cooks

If there's one thing I miss about the NICU, that would be the opportunity to get all of Micah's caregivers in a room at the same time to discuss his care. Here are who we are dealing with these days: pediatrician, cardiologist, gastroenterologist, endocrinologist, general surgeon, cardio-thoracic surgeon, speech therapist, physical therapist, and home health nurse.

Micah's reflux is getting worse. He screams a lot during his feeding sessions. He's refluxing up but not spitting up too much. It seems to go sort of into his sinuses. That must really hurt. I asked the home health nurse on Wednesday about increasing his dosage of omeprazole (Prilosec). The original Rx was written by his pediatrician, who was out on Wednesday. The ped covering said since he was being seen by GI and he had heart surgery coming up, they didn't want to mess with his med. Okay, so let's try cardiology. Nope, they don't want to mess with it because that's not their gig, but it doesn't affect heart surgery if someone else decided to raise his dosage. Okay, let's try GI. Finally, this afternoon the home health nurse received word from the GI nurse that his current dosage is sufficient.

Excuse me... have you tried to feed this child? And how is it possible that the dosage is still correct if he has gained over a pound since the last increase? Long story not short enough, I told a nurse in GI late this afternoon that if no one called me back within 10 minutes to authorize an increase in his dosage or offer another solution, I would have the on-call gastroenterologist paged. That wasn't what she wanted to hear close to close-of-business on Friday (I inferred that she was fairly ticked off). Anyway, it must have worked, because I did receive a call from Micah's GI doctor a few minutes later. After a long conversation, which included him questioning why I didn't try EleCare longer than three days (ummm... maybe the blood in his stomach was something I wasn't comfortable with?), we finally got to the dosage concern. He thought if it weren't for heart surgery, he would consider starting him on reglan. I finally convinced him that Micah's increase in weight should justify an increase in the prilosec so he calculated how much Micah should be receiving based on his weight. What do you know? Rather than 1.6ml's, he should be getting 2.8ml's. That's a pretty big difference, don't you think? And I think the problem is that no one bothered to calculate based on the concentration of medication in the suspension. I think they assumed a higher concentration than is actually in the suspension.

If you are sensing that I'm not a big fan of the medical profession right now, that's actually not true. We had a good trip to Milwaukee today for Micah's pre-op appointment. We really liked the nurse and PA who cared for him today. And the phlebotomist is the same one who did a great job on Tuesday (we waited a long time to get in, but the result was positive). He also had an EKG and a chest x-ray. Micah's least favorite part of the day was the left-side-lying x-ray where they held his hands above his head. For some reason, he dislikes having his hands above his head anyway, so holding them down while lying on a hard table was just not fun. Otherwise, he did very well. We didn't get to meet the surgeon because she was called into an all-day surgery. But she did call us this afternoon and asked if we had any questions prior to meeting her on Monday. She seemed very nice.

The PA told us to expect Micah to be in the hospital for 7-10 days, two of which will likely be in the PICU. But I'm going to pray for a special Mother's Day present, which would be having him home after 6 days!

Thursday, May 1, 2008


Since we don't have enough going on these days, we decided to add another trip to Milwaukee for Micah to see an endocrinologist (sense the sarcasm?). Seriously. I was looking through some paperwork from the NICU at TC and saw that he had an elevated thyroid level at his last bloodwork drawn before he went back to Milwaukee for his g-tube. No one ever mentioned that to me. And thyroid issues are fairly common in children with Down syndrome.

Early last week at his interim pediatrician's appointment (congrats, Dr. R., on baby boy #3, but your timing for maternity leave could have been better :-) ), I asked when they would test his thyroid level again (not knowing that he had elevated levels while in the NICU). He told me they would test it again at 6mos and one year. But then I found this information in his paperwork and called him on Friday. He said to bring Micah in on Friday evening for a blood draw. He got the results Saturday morning and called the on-call endocrinologist at Children's who said they should see Micah early this week. Nice. I'm glad I noticed it. But who wouldn't have noticed it. That's why lab reports show "in range", "L", or "H" by the results. Strange how the multiple H's weren't noticed by anyone else. Maybe strange isn't the best word. Maybe crappy is a better word. I'm tempted to say irresponsible, but I hate to point fingers.

Anyway, Micah is now on synthroid. Because he doesn't take enough medications...

Sorry for the negative ranting. Maybe I'm a bit stressed about our upcoming week.