A Little Something Extra

Tuesday, October 28, 2008

Nathan's reaction

We talked to Nathan over the weekend about him getting another sibling.

Mommy: "Nathan, do you know we're getting another baby?"
Nathan: "A baby sister!?"
Mommy: "No, buddy, a baby brother."
Nathan: "I don't want another brother."

In Nathan's defense, Micah has required more than any baby's fair share of time and sacrifice. Nathan has had to make lots of sacrifices this year. His brother has spent 3 months in the hospital. We were stuck at home before Micah's heart surgery and couldn't go anywhere around other people (and it was too cold to go to the park).

It's difficult for a 3-year-old to understand that not all baby brothers take Mommy and Daddy away from home, etc. So I guess the proof will be in the pudding for him.

By the way... as soon as the schedule at my OB's office comes out, we'll be scheduling the c-section for the first week of February.

Sunday, October 26, 2008

Sickness spreads

Yes, it's true. I'm sick too. I really hope to feel better tomorrow. Mark has been an all-star this weekend, taking care of the boys.

It's sad... it's almost the end of October and I haven't shared much about Down syndrome for awareness month. I'll just have to spread it into November. But if any of you readers out there have specific questions, please let me know. I'll be happy to answer them.

For a bit of humor, I'll add a Nathanism. We've never given Nathan straight juice, other than an occasional juice box at a party. He usually gets about 2/3 water and 1/3 juice (if you're worried he's not getting enough Vitamin C, then you don't understand exactly HOW MUCH this child drinks every day). Anyway... Nathan has recently been saying he would like "the juice up and the water down." It's quite cute and very insightful, actually.

Oh, and another one. Two weeks ago we took a family "hiking" trip to a state park to see the beautiful leaves. We talked about the pretty park all morning. After we walked for a bit, we drove around the rest of the park. After a while, Nathan starting asking, "Where's the park?" We replied, "We're IN the park, buddy." "But where IS it?" "Right here." "Where IS it?" It was a very long, hilarious conversation. Nathan's definition of "park" is apparently more like "playground." He truly didn't understand that we could DRIVE through a park. He was thinking swings and slides.

Thursday, October 23, 2008


Micah still isn't sleeping well. He cries every hour or so after about midnight. It's heartbreaking. And tiring.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yolk upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." (Matthew 11:28-29)

Please pray for rest for us. Mark actually came home from work this morning because he has a nasty cold.

Wednesday, October 22, 2008

More photos

For those of you who knew us when Nathan was an infant, you might recall that he screamed every time he was placed in his car seat. Micah, on the other hand, LOVES his car seat. You can almost see the excitement in words: "Yay! Where are we going?"

Nathan and neighbor Nathan played dress up one night while we had dinner at their house. The boys were so funny!

Mark ran his first 1/2 marathon in September and did it in under 2 hours. And he hardly looks tired!

How cute are these matching thermals?

Tuesday, October 21, 2008


Sickness in our house is spreading... please pray that Micah escapes with no more than his current sneezing and slightly runny nose.

In light of my need to get to bed at a reasonable time tonight, I'm going to just post some photos that should have gone up in September but I've been a bit disorganized.

Micah's first experience in the water

Okay, he liked it better before the water hit his tummy.
Post-swim (his legs aren't quite as chunky now, but they were pretty yummy back then)

Nathan "driving my car and calling Grammie"
Micah in the tub, showing off the war wounds. Obviously, the open-heart surgery scar is the most prominent. He still has some small scars from the chest tubes, but those will be invisible soon, I'm sure. I'm pretty impressed with the scar from his duodenal atresia surgery. It's four inches long, to his right of his belly button (way bottom of the photo), and it's hardly noticeable. Same thing with the one-inch vertical scar to his right of his feeding tube from when they placed the tube. The white thing on his lower left abdomen is his feeding tube. I'll take a photo of that sometime by itself.

Monday, October 20, 2008


Approximately 90% of American families choose to abort a baby when they receive a prenatal diagnosis of Down syndrome. Do those 90% look at my baby and think he shouldn't be here? Or is it just that they didn't want to be "burdened" with a child like him? And if it's the latter, why couldn't they have just placed the child up for adoption instead of aborting the child? It's a sad reflection on our society that it's more socially acceptable to abort a baby than to carry a baby to term and place the baby up for adoption.

Is our life more difficult today than it was a year ago? Absolutely. But the smile that starts with a bright shine in his eyes... wouldn't trade it!

I've heard of some parents of little ones with Down syndrome who say they wouldn't change the fact that their child has Down syndrome. I confess, I'm not there. I would take it away if I could, especially since it would likely mean that Micah wouldn't have had to go through abdominal surgery when he was 2 days old and open-heart surgery when he was 4 months old. And he likely wouldn't have the awful digestion issues that he has. And...

I didn't mention much about his visit to the pediatrician except that his weight was down. I do realize that his actual weight is not terrible... the problem is that he hasn't grown in two months. I've always said he wouldn't be as big as he is if HE was the one who was deciding how much food went into his body (and I'm going to talk to the nutritionist about this when we get to Feeding Clinic on 11/5... more about that later).

Anyway... the first thing that happens at a well visit with the pediatrician is that the nurse brings you into a room and asks you developmental questions about your child. I wonder if I can request that they just don't do that anymore. It's heartbreaking to have to answer "no" to absolutely every question. "Is he pulling himself up on furniture?" Actually, he's hardly pushing up while on his tummy these days. He's never tucked his legs underneath himself while on his tummy. He only rolls from his back to his tummy going to his right. I know that "he'll get there, just at his own pace." But sometimes it's just really hard. I don't like looking at video or photos of Nathan as a baby because it reminds me of how delayed Micah is. And nevermind how it feels to hear someone "complain" about how their 6mo old is crawling and getting into absolutely everything...

So surely there's a prayer request in there somewhere. I guess it's really about being content with our current circumstances and not try to compare Micah with anyone else.

Sunday, October 19, 2008


I missed a post yesterday. There's not much new to report. Micah hasn't slept well at all lately. He screams overnight with belly pain. We're guessing it's gas and/or constipation due to changing formulas. Whatever it is, it's awful to see him in such pain. He didn't offer up many smiles this morning, but he felt much better after he filled his diaper and took a nap.

I'll try to post some more photos tomorrow.

Friday, October 17, 2008


At Micah's 9mo. checkup yesterday, he weighed just 15lb 4oz. This is not good. He was 15lb 13oz when we checked him into the hospital on 9/28 and he was underweight then even because he was so dehydrated. I think he had hit 16lb at some point. Way back at the end of August he weighed 15lb 3oz. There are a few contributing factors, primarily related to his illness, the hospital stay where he didn't get much nutrition for too many days (he wasn't tolerating it, and then when he did, his tube got clogged so he went another 24 hours without food).

Back we go for more weight checks. No big deal, really, because I have to take him back for more shots anyway. He's behind on his immunizations and I don't like to subject his little body to more than 2 shots per visit.

One of these days I'll get back to posting tidbits about Down syndrome...

Thursday, October 16, 2008

Buddy Walk photos

Back on 9/6, we walked in the Green Bay Buddy Walk. I couldn't believe how many people were there! We had a great time walking with Erin and her family. Erin's mom, Kris, and I lived on the same floor in the same dorm my freshman year at Michigan State. Crazy! They have a super fun family with seven children.

We also got to see Logan and his family. Nathan just loves to hang out with Devin.

Nathan went on his first pony ride and had a lot of fun.

Wednesday, October 15, 2008

New tube works!

(this photo was taken at the Buddy Walk on 9/6. I'll post more info and photos of that sometime soon)

So far, so good. Micah's new tube appears to be well-placed downstream so nothing is backing up to his stomach. This is very good news.

Our happy boy seems to be taking a hiatus, though. Since leaving the hospital, Micah is much less likely to issue smiles to people he doesn't know. He wanted nothing to do with his speech therapist today. I guess it's understandable that he wouldn't be incredibly trusting of people. He's had a rough few weeks. He had some periods of discomfort today and I don't know the cause. I think he's becoming more of a mommy's boy too. He is crying when I leave his room and he doesn't often do that in the evening. He only smiled at Grammie yesterday when he heard my voice. Yikes. I hope he gets back to himself soon.

Please pray that I would be able to lovingly get him back on track with his therapies. He is rather weak and protests "work," but he needs to get back to exercise too.

Tuesday, October 14, 2008

New tube

I wonder if this should be "feeding tube awareness month" rather than Down syndrome awareness month. Micah got a new tube again today. Let's hope this one stays put for the full three months before it needs to be changed again.

I spoke with the PA (physician's assistant) in radiology before they worked with Micah's tube. He said he would put in a slightly longer tube this time in hopes that it will stay put in his jejunum. So far so good. Micah has been on feeds since about noon and has been very comfortable, barring the pain he feels around the site on his belly. He was none too pleased to have this done again. It took longer than usual, I guess because of where they were trying to place it. Poor little guy... big alligator tears when I came in to get him (I can't be in there for the procedure). He looked mad for an hour or so. He would start to smile at me and then it was as if he thought, "Wait a minute... I'm still mad at you for taking me there."

ABC News featured a girl with Down syndrome this evening. She was voted Homecoming Queen at her high school. Check out the story (and video) here.

Monday, October 13, 2008


I have to take Micah back to Milwaukee tomorrow to have his J-tube repositioned... again. After all this backup into his stomach, we decided to head to our local hospital to have the position of the tube checked (it's called a "contrast study"). The tip of his tube is in his duodenum, not his jejunum. The reason he has a J-tube is that his duodenum doesn't work properly. So with all of his food going into that spot, only some of it is actually going through. The rest of his food is backing up to his stomach.

The radiologist who did the study talked with me about the possibility of him someday being able to replace/reposition Micah's tube here so that I don't have to take him to Milwaukee every time. He doesn't do many of these with babies. And the major issue really gets down to the possibility that he would have to be sedated for the procedure and since he's a "cardiac kid," he has to go to Milwaukee for sedation, since that's where the pediatric cardiothoracic anesthesiologists are located. But I really liked this radiologist.

Anyway... by our calculations, the interventional radiology (IR) dept at Children's is batting .500 right now with Micah's tube placement. That's not a stellar record, in my humble opinion. Seriously... his tube was just replaced last Wednesday and it was out of place by Saturday. How does that happen? Anyone out there reading this who has a kid with a J-tube? Please share your experiences.

I really want to share a positive post, especially during this month of Down syndrome awareness. Please pray that we get through all this yucky stuff soon. Micah's weight is dropping since he hasn't gotten enough nutrition now for 2.5 weeks. He's pretty weak. It's getting a bit scary.

Sunday, October 12, 2008

The call, one year ago today

It's been a year since the dreaded phone call from the geneticist. It's been a hard year. Most of the time, our issues are related to the medical issues that Micah faces, not the underlying diagnosis of Down syndrome. But there are definitely days that I'm sad about that too.

I'll be spending some time on the phone with GI again tomorrow. Yesterday morning, Micah started vomiting. He would probably still be vomiting if it weren't for the drainage bag we are using on his stomach now, per a conversation with GI yesterday morning. We're supposed to replace everything that comes out of his stomach with an equal amount of pedialite. We didn't do that yesterday (we didn't have any pedialite and we wanted to give the kid a break, though he truly needs some nourishment) and Micah slept peacefully for TWELVE HOURS last night (before going to the hospital, we were struggling with him being uncomfortable and not sleeping longer than an hour and a half at a time... very tiring for all of us). His poor little body is more comfortable without food going in. And if the volume of milk he's getting is too much for his little body to handle, then how is pedialite going to improve that? Yes, it can help keep him hydrated, but ultimately the pedialite or the formula is going to go up to his stomach and get drained off.

Maybe it will just take a while for his system to be able to function efficiently enough to "consume" the calories he needs to grow. My guess is that we will also need to increase his formula to 27-calorie concentration. He's been on 24-calorie since mid-February. Regular infant formula (and breast milk) is 20-calorie.

I just want him to be better. And he's definitely better than he was when we admitted him to the hospital two weeks ago. But his poor gut...

We're so thankful for our little guy. His smiles just melt your heart. He's awfully sweet and that makes it hurt even more when he hurts.

Saturday, October 11, 2008

Micah and Nathan are getting a baby...

... brother. Yes, Colleen, it's baby boy#5 (after our two and your two) who will be wearing the same clothes. :-)

Friday, October 10, 2008

We're home!

Micah was discharged this afternoon. He got very excited when I put him in his car seat in the stroller. Then he slept the whole way home. It's great to be here. I'll share more tomorrow.

Thursday, October 9, 2008

Please vote

You'll see on the left bar there's a place to vote on whether you think our next baby is a boy or a girl. Please vote. We'll release the answer on Saturday at noon. Yes, we know the answer, but you'll have to wait until Saturday to find out. I meant to post the poll earlier, but we've been a bit busy with Micah in the hospital.

edited to add: Micah's feeding rate has been increased gradually for the past two days. He is now at "full feeds," though that's with a lower rate over 24 hours rather than his regular rate at 21 hours per day. We'll go home on the 24-hour rate and work on raising the rate next week so that he can have a few hours a day off the pump again soon. Anyway... they want to watch him on "full feeds" for 24 hours, which would mean we should be able to check out of the hospital tomorrow afternoon. Yay! He's a much happier baby... smiling lots, but he grumps at the physical therapist. He's very weak but I'm hoping he bounces back soon. The prevailing theory about what caused him to be so sick is that he had some sort of virus last week that shut down his intestines. Yikes. It's not even viral season yet. This could be a long winter... Fortunately, he qualifies for another year of RSV shots due ot his heart defect, so we don't have to worry about that particular virus. But we are going to spend another winter probably keeping him away from other children.

Wednesday, October 8, 2008


"Your attitude should be the same as that of Christ Jesus." (Phil 2:5). My, isn't that a tall order?! It doesn't say, "as long as the circumstances are to your liking," or "as long as you feel justice is being served." There are no caveats. Here's the whole section of Phil 2:1-11

1 If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, 2 then make my joy complete by being like-minded, having the same love, being one in spirit and purpose. 3 Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. 4 Each of you should look not only to your own interests, but also to the interests of others.
5 Your attitude should be the same as that of Christ Jesus:

6 Who, being in very nature God, did not consider equality with God something to be grasped,
7 but made himself nothing, taking the very nature of a servant, being made in human likeness.
8 And being found in appearance as a man, he humbled himself and became obedient to death - even death on a cross!
9 Therefore God exalted him to the highest place and gave him the name that is above every name,
10 that at the name of Jesus every knee should bow, in heaven and on earth and under the earth,
11 and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.

Does righteous anger fit into this somewhere? How do we determine when it's okay to be angry? Jesus was pretty angry in the temple and that was okay. I'm afraid my attitude is not exactly Christ-like right now. Please pray for me.

Micah's feeding tube clogged last night around 9:00pm. We tried multiple things to unclog it. Micah's nurse was waiting for something to come from the pharmacy to use when I left at 10:30pm. I figured it would work. No such luck. It's like there's cement in his tubing. Nothing is working. We had to wait until 8:00am to page the on-service G-tube nurse. When she called back, she basically told Micah's nurse that there's nothing she could do that wasn't already tried, so we had to call interventional radiology. Between the calls to GI and radiology, we finally now are at least on radiology's radar screen to get Micah in for what will likely end up being yet another tube replacement sometime this afternoon. If this happened at home, I certainly hope it wouldn't take this long to get him in. At least he has an IV line and is getting IV fluids. But he hasn't gotten any food again since 9:00pm last night. So, we're losing ANOTHER DAY just waiting. We're in Children's Hospital prison. Where's the room with the padded walls? They'll need to put me in there soon.

Tuesday, October 7, 2008

Micah is smiling again!

Micah is feeling much better. He is closer to his normal, flirty self. I've missed the full-face smiles so much and it's wonderful to see him happy again.

Today it was 5:00 before the GI doctor came to see Micah. I made a decision at 2:00 that I was sick of waiting. The resident on the floor agreed with me and we increased his feed. He told the GI doc that's what we were doing and he gave a verbal okay. At 3:45 I met with someone from Patient Care to express some of my concerns with the delays and inefficiencies we've experienced while being here. At 4:15, Micah's GI doc (not the one on service in the hospital) dropped by. There has apparently been discussion about what is potentially causing Micah's feeding discomfort. They think there *might* be a semi-obstruction more downstream. There's no plan to test for that at this point because it's another trip to the OR. So we're going to try to increase his feeds to the volume he needs and take him home. If we hit a point where he's not tolerating the feeds, then an endoscopy that goes all the way through his intestines is the next step.

Micah had a great night last night (he only woke up twice). But... he just woke up pretty uncomfortable already and it's only 9:00. I'm not sure that we should raise his rate again tonight (the plan was to up it every 8 hours, so he's due for another increase at 10:00). It's tough to know how much to push him. If we are able to get him up to his necessary rate tomorrow, then we could likely take him home on Thursday.

Down syndrome stuff: I mentioned in yesterday's post that individuals with Down syndrome are much more likely to get leukemia than the rest of us. Someone posted a comment (anonymously) which I think you all will find interesting so I'll post it here on the "front page" since not everyone reads comments:

However, kids with Down syndrome also have a much higher CURE rate for leukemia. They also have a much lower rate of other cancers. For example there is only 6 cases of lymphoma in people with Down syndrome... in the last 30 years. They very rarely get anything other than leukemia. When they do get leukemia they respond better to the medication. There is something on the 21st chromosome that helps them fight cancer. Researchers are looking at people with Down syndrome to find the cure for cancer. So while they have more of a risk of GETTING leukemia, far more of them BEAT it than typical kids. 90% for typical kids vs 98% with kids with DS for ALL... and 85% for typical kids vs 95% for kids with DS for AML. I think it's a trade off that's worth it. :) More likely to get it, but also more likely to beat it. Not to mention, helping find the cure for cancer.

I wasn't trying to be negative when I pointed out that little Down syndrome tidbit yesterday (just adding a small fact). I very much appreciate the positive attitude contributed by the person who commented. The 21st chromosome seems to possess a lot of interesting traits. Other research has shown that individuals with Down syndrome may show symptoms of Alzheimer's at an earlier age. I'm so glad to hear that people with Down syndrome could potentially help develop a cure for leukemia and Alzheimer's. But I have to say, I just feel that our little guy has been through so many health-related issues already... please, God, don't let him get anything else.

Monday, October 6, 2008

Slow day

Micah seems to be feeling better today. He issued a number of smiles (including at his aunt, uncle, and cousins who were here visiting from Georgia). He seemed to be less comfortable in the afternoon.

Because it's Monday, that means we have a new GI doctor on service. We didn't see him until 4:30 this afternoon. In a nutshell, he ordered another belly x-ray. This was, apparently, "unremarkable." Sadly, he didn't come by again after those results came in. And he didn't put anything in Micah's chart about what to do if his x-ray didn't appear to show anything significant. So the rate of Micah's feeding has not increased in 24 hours. We basically gave an entire day to Children's Hospital today. I'm glad to have a new set of eyes trying to figure out what's wrong with him. But I don't want to repeat a bunch of tests without making forward progress either. I can't write any more about it without fuming so I'll stop here.

Down syndrome fact of the day: Individuals with Down syndrome are 15-20 times more likely to develop leukemia than individuals without an extra chromosome. Scary.

Sunday, October 5, 2008

Slowly starting feeds

The comedy of errors continues. Apparently, anesthesia can cause a slow-down in the GI tract, so yesterday's upper-GI study was pointless. So... if they KNEW that was a possible side-effect of anesthesia, why didn't they do his upper-GI study a few days ago BEFORE doing the endoscopy, etc.? I couldn't go back to the hospital to meet with the GI doc this afternoon. Mark met with him instead. Though tomorrow is going to be a pain because there's a new GI doctor "on service" and we'll sort of start from scratch with him, it seems it will be a good thing to rid ourselves of the GI doc we've had this week. He seems to be a fairly intelligent guy, but maybe he was too distracted with some other more serious cases this week and has made some questionable calls with Micah's diagnostic procedures.

We're insisting on another upper-GI study either tomorrow or Tuesday to see "if" he has a significant slow-down in his intestines. They've started his feeds back up and will increase them very slowly to see what he will "tolerate." I really don't like that word. I've been told that they consider Micah to be "tolerating" his feeds because he doesn't vomit. The truth is, even with his reflux, Micah has only really vomited one day (the day before we brought him to the hospital). When he refluxes, very little actually makes its way to his mouth. I don't think he has the muscle tone required to truly vomit. And besides, when he seems to be getting uncomfortable, I have the ability to "vent" his stomach and take out the excess air and fluid through his G-port. I don't want to have to stop venting him just to prove to the doctors that he's not "tolerating" his feeds. Does screaming and a bloated stomach not count as "not tolerating" his feeds?

I'm hoping to get a nutritionist to consult with us tomorrow. I'd like to know what level of food Micah needs to be getting for sustenance. I want to make sure that they're calculating his food level while taking his low motility into account. It's possible that we're over-feeding him based on some kcal/kilo calculation for a "normal" kid and I'd like to consult with a nutritionist who knows more about kids with Down syndrome and the effects of slow motility.

I realize I've been more than a bit negative lately. I'm not sure what to do about that except pray. Could you please pray that I would have a peaceful heart and speak pleasantly to Micah's caregivers? The nursing staff has been wonderful and I hope I can show them some appreciation in the midst of my frustration.

BTW... Micah is 9 months old today. I'll try to post some photos soon.

Saturday, October 4, 2008

And the verdict is...

Hey, guess what. Micah has incredibly low motility in his GI tract (surprise, surprise). He finally had his upper GI study this afternoon. But it was basically cancelled after just one x-ray because the barium fluid they injected into his J-tube did NOT travel down his intestines. It all backed immediately up into his duodenum and into his stomach. Surprise, surprise.

I don't know what the next steps are. But this is not the easiest diagnosis to treat. I probably won't be back online this evening, but I'll update more tomorrow.

Down syndrome info for the day: Motility is an issue with lots of kids who have Down syndrome, so Micah is not alone in his GI struggles. Not many have issues as extreme as his, though.

Friday, October 3, 2008

Okay, so maybe NOT a diagnosis

So apparently this supposed bowel infection (called C Diff) does not impact babies under one year of age. This bacteria(?) creates a toxin and babies' bowels don't yet possess some sort of binding property that would enable the toxin to do damage. So that's not what's causing his issues.

Micah actually got a four-for-one in the operating room today. It was quite a deal, really. 1) Someone from radiology put in a PIC line (he kept blowing IV's, and we don't know if he's going to be able to tolerate feeds so he *might* end up needing nutrition through that route... I'm glad to lose his other IV because after blowing another IV yesterday, they had to put one in a vein on the top of his head... I'll post a pic after I get home since I can't do pics at the hospital). 2) GI did an endoscopy (EGD) and took a camera all the way to his jejunum (2nd part of the small bowel) and biopsied his colon as well. 3) His surgeon was there to investigate improvement in his duodenum. 4) An ENT (ears, nose, throat) doctor cleaned out his ears and checked for fluid (he would have put in tubes if Micah had needed them... Micah had lots of wax, but no fluid).

So there's good news and bad news. The good news is that they didn't find anything wrong. The bad news is that they didn't find anything wrong, so there's nothing to treat.

Tomorrow Micah will get and upper and lower GI study. They will inject barium into his tube and take x-rays for about 12 hours to see how long it takes for the fluid to make its way through his system. This will check for areas that might have slowed down significantly. I'm still not sure what they would do, if anything, if they find a slow spot.

It's completely possible that Micah has some sort of virus going through his system and will take another week to work its way out. Once they get the results from the biopsies, if all looks good with them, they will cease his antibiotics, increase his feeding through his tube (he's only getting 3 hours tonight... should have been 6... but somehow that didn't get communicated to his nurse... imagine my surprise when I returned from dinner to find that Micah was still not getting food), and likely send us home whenever Micah gets to full feeds.

There are some things I still don't understand. Does green bile in his stomach really not concern the GI doctors? They say it happens. Okay, I've checked the fluid in Micah's stomach five times a day for the past, oh, four months or so, and it's always been medium yellow in color. I've seen it go from dark yellow to brown to green this week. Call me crazy, but back in January after he had his duodenal atresia surgery, we weren't allowed to feed him until the green stuff was no longer present in his stomach.

I'll update more tomorrow. And sorry... I'm exhausted, so no little fun fact about Down syndrome today.

Thursday, October 2, 2008

At least one diagnosis made

Micah has had quite a busy afternoon. He's had a testicular ultrasound (long story... I'll find out more from urology tomorrow), an echocardiogram (which showed that his heart looks the same as it did back in May... not worse, but not better either... he still has a bit of valve leakage), a brain MRI (the thing I don't understand any better today than I did yesterday... we should have the results of this by tomorrow afternoon), and a belly x-ray.

Once we got back from all of those procedures, we found out that a culture came back positive for a bowel infection. This infection could be causing most of his belly pain. Wouldn't it have been nice if they had tested his stool on Sunday or Tuesday when we asked if they should? (to which they always replied that it wasn't necessary, until they ordered the test on Tuesday afternoon after he had pooped that morning and didn't poop again until today). He has quite a miserable belly right now. When I check his stomach for gas and fluid, there's bile in it, meaning his intestines are slowing down significantly and backing stuff up into his stomach.

Anyway, he is to start a round of antibiotics tonight. I'm not sure how long the course of treatment is, but it will be given through his IV line. Please pray that one round of antibiotics would kill this infection and that it will not return (which is unfortunately common, and not something we care to deal with). This infection could have already caused damage to his colon. Please pray this is not the case.

Micah will be going to the OR tomorrow at 2:45 for his endoscopy and to check his ears. Please pray that the procedure would go smoothly and quickly.

Down syndrome info for today: Many individuals have a simian crease (aka single transverse palmar crease. Micah has a simian crease on each of his hands. It's very cute. I'd post pictures, but I can't do that from the hospital. So here's the link to Wikipedia if you'd like to see examples.

Wednesday, October 1, 2008

31 for 21 begins

Seems like a perfect time to have committed to updating the blog every day. I'm certainly not at a loss for what to share. It's condensing it into readable form that creates the problem.

Today the 3-ring circus really grated on my nerves. It's been a comedy of errors around that place this week, with Micah bearing the brunt of the errors. We have received numerous apologies from doctors and nurses today. The biggest decision made today is that Micah's GI tract needs to be "scoped" (an endoscopy, or EGD, for those of you in the medical profession). After setting a time of 3:30, the GI fellow realized (after questioning from "Mom"... they don't bother learning parents' names around here) that she was dealing with a "cardiac kid," so the procedure couldn't be done in the normal location... it had to be done in an operating room with an anesthesiologist who specializes in cardiology.

Putting Micah under general anesthesia in an OR is something we try to avoid, but this EGD seemed to be inevitable to us all week. So once the on-service GI doctor put in the order for it, Mark decided to pack it up and drive here so that he could be here while Micah was in the OR. We were "on call" for the afternoon, meaning it could happen anytime that an OR opened up with an appropriate cardiologist. I had a 5-minute warning that surgery was coming up to get him at 1:00ish. So, down we went to surgery (Mark was en route at that time). Long story short, after talking with me for 10 minutes, the anesthesiologist went out to do some more "research" on Micah.

She ultimately decided that she didn't want to put him under until they could rule out infectious endocarditis (an infection in the lining of the heart). The reason for concern is that Micah has had intermittent elevated temps since Sunday (his highest being 102, which is the threshold, apparently, for when they would take it seriously... are you serious???). So not much concern has been placed on his elevated temps (this is one of the circus rings, I think). Don't worry... no one REALLY thinks he has endocarditis, but they have to rule it out.

They had him scheduled for an echo cardiogram this afternoon but didn't go through with it because the cardiology team couldn't decided whether they could even give him the sedative required for the procedure. Once they worked through all this, it was past 5:00 so it appears he'll have his echo tomorrow. After they sedate him for the echo, they'll also do an MRI of his brain. Don't ask me to explain why. This is the one piece of the puzzle that I don't understand.

He now won't get his endoscopy until Friday. They're also going to have an ENT (Ear, Nose and Throat) doctor in there to check his ears while he's under anesthesia (can I just tell you that if this all comes down to an ear infection, I'm going to go ballistic???). But if the ENT deems it necessary, he can place ear tubes at that point rather than us having to schedule that for a later time.

This brings us to the Down syndrome education point of the day. Most individuals with Down syndrome (Ds) have narrow and sometimes oddly-shaped passages resulting in frequent ear infections and higher incidence of hearing loss. So placing tubes early on can sometimes help avoid those side-effects.