Micah and a cracker

Yesterday afternoon, Micah "requested" a cracker.  Matthew was having his snack (a few yummy organic butter crackers).  Micah appeared to be interested and I asked him if he wanted one.  He actually SIGNED cracker and nodded.  I gave him one, thinking it would get thrown across the kitchen floor.  But he licked it... multiple times.  And he held onto that cracker for about 10 minutes.

This is a HUGE deal but I almost didn't post about it.  I think that's because I feel like I haven't done a very good job of explaining Micah's eating issues, so no one outside the feeding tube community and a few select friends and family would understand the significance of the cracker event.  And I've tried to avoid complaining about Micah stuff, especially since the septic/toxic shock incident.  I feel like I should just be grateful that he's alive and deal with the other stuff quietly.

But it's hard for me to talk about Micah's eating issues without crying.  If you haven't been here (aka, you haven't had a child with a complete oral aversion), you can't possibly understand (I don't say that lightly, by the way... I have a lot of empathetic friends and family members who have been incredibly supportive of us in this journey).  As a mom, one of your primary jobs is to feed your baby/child.  I've never been successful in that with Micah.  For those of you who have not been able to nurse your baby and have resorted to bottle-feeding because you HAD to, not because you WANTED to, you have a small glimpse into this world.

I could go back and search my previous posts to give you links for a history of Micah's feeding issues (for those who haven't followed my blog for 2.5 years or who have forgotten how we got here).  But it's probably faster for me to do a brief summary here:

• Duodenal atresia - The first and second portions of Micah's small intestine were not connected.  He had surgery to repair this when he was 2 days old (should have been day 1 but he got bumped).  He was fed TPN (IV nutrition) for over 3 weeks and wasn't allowed to eat for the first 20 days of his life.
• CHF (congestive heart failure) - Micah had a heart defect called AV Canal (atrioventricular canal).  He went into CHF around 4-5 weeks of age as he was learning to eat.  He did not have the energy to eat all the food he needed to survive, so he had a g-tube placed when he was 7 weeks old so that we could bring him home.
• Between the NICU and his OHS (open heart surgery) at 4 months of age, we let Micah eat as much as he could via a bottle and "tubed" the rest.  Most of it was tubed.  Often he wouldn't eat anything.  That was likely due to part of the summary below (Duodenum not functioning properly).
• OHS - Micah had a rough time with his heart surgery.  One of the complications turned out to be a paralyzed left vocal fold, which resulted in an inability to protect his airway when he swallowed.  He decided at that point that he didn't want to eat anymore because it hurt.  This was the start of his oral aversion.
• Duodenum not functioning properly - Before Micah was discharged following his OHS, I "encouraged" them to figure out why he still wasn't tolerating his feeds (docs had been pacifying us with "it will get better after his heart is repaired" for two months).  Micah was screaming in pain and wretching following each feeding.  An upper GI study and endoscopy showed that his duodenum was still dilated and there was a "blind pouch" where food was pooling and kicking back through his pylorus into his stomach.  This resulted in him immediately getting a gj-tube.  He was then fed into his jejunum (2nd part of the small intestine) while his duodenum continued to heal.  He was j-tube fed for over a year.  That was terrible.  Every time that stupid tube got clogged or coiled, we had to take him to Milwaukee (1.5 hours away) so that Interventional Radiology could re-thread it into his intestines.  It was about a month after he was discharged that his new GI doc gave me the reality check phone call.  I think he said something to the effect of, "You need to adjust your expectations."  Right.  Because I was still holding onto the "he will likely have the feeding tube for a few months after OHS as he's gaining strength to take all of his food orally,"  that we heard in the care conference in the NICU as they were telling us why he needed a feeding tube.
• Eventually late last summer, Micah started to allow us to feed him "solids," which was basically stage 2 baby purees.  Forget liquids.  There was no chance he was letting a cup close to his mouth (after 6 months we were told to give up the thought of him taking a bottle because he wouldn't learn to suck).
• Around that time, we were able to move him from continuous feeds to bolus feeds.  Basically, when he was getting fed through his j-tube, he only had 5 hours/day that he was NOT connected to his pump.  "Bolus" feeds are more like meals.
• Though Micah increased the volume of food he would take at one time, there hasn't much additional progress made since we moved in the fall (the move itself played a role in that, I think).  He still only eats stage 2 (no textures allowed).  But lately he's started becoming interested in drinking from a cup (he won't touch it with his hands, though... you have to do it for him).  He opens his mouth for the cup but we still need to teach him how to close his mouth around the cup lip and take in only as much as he can swallow (most of it drools down his chin, but at least he's trying).
• Earlier this year we made the move from Neocate (insanely expensive formula... think 4x Nutramigen) to Boost Kid Essentials.  So at least we can buy it elsewhere when we travel now.  And it tastes good so he'll spend some time attempting to drink a bit from a cup.
• So... feeding time is basically 4 times a day, spending at least 30 minutes trying to convince Micah to take another bite of yogurt/baby food, and hooking him up to his pump for 6 ounces of formula (though we don't try to feed him orally during the 3rd feeding of the day).

Micah sees a private speech/feeding therapist 2x/week (co-treat with an OT one of those days).  They're both great and are working to eliminate this lovely texture aversion that Micah has.  He has actually WILLINGLY put his fingers into paints lately.  This is huge progress for him.  He also has an SLP (speech and language pathologist) who comes to the house 3x/month to work on speech and a bit of feeding.

It's a long road.  And a bumpy one with lots of detours.  And it stinks.  Really stinks.  I have a boy who is almost 2 1/2 and he doesn't really eat anything of significance and doesn't know how to drink.  And won't put anything in his mouth willingly... EXCEPT A CRACKER!  Not that he ate it.  But he didn't hate it.  He tasted it (well, at least the salt).  And he didn't throw it away.  And he didn't want Matthew to take it from him (resulting in a Matthew scream-fest... yes, the child looks innocent enough... but then he opens his mouth...).

We served a meal at the Ronald McDonald House with some friends from MOPS, small church, and Mark's office a couple of weeks ago in honor of Micah's health and in thanks for the many meals we received recently as well as from volunteer groups who provided meals for us during the time we spent at the RMH in Milwaukee during Micah's first year of life.  We were very busy serving so we didn't have much time to interact with the families staying at the House.  But I did meet a dad outside when I arrived.  His daughter was in the NICU and was scheduled to get a g-tube the next morning.  He was nervous about the surgery but anxious to have an opportunity to bring his daughter home.  I mentioned that I understood how hard that decision was because our son has a g-tube too.  And then he asked the question, "How old is he?"  Oh, how I hated answering him.  I told him that there were a lot of other issues that Micah had faced that resulted in the long 2.5 years.  But I know that it hurt the dad to hear of the possibility of a long-term issue.  I know that it hurt because I saw his face and I know it hurt because it hurt ME so much to even tell him.  A little friend of ours here just got her g-tube removed recently.  She's five.  Five.  Long cry from a couple of months.

In closing, I would like to give some advice to those of you who know a parent who has a child with a major oral aversion (or texture aversion, etc... this is not just for kids with Down syndrome).  The next time you hear that parent complain about a pending dentist appointment or haircut, please don't suggest a sucker to pacify the child.  There is no bribing a kid who has an oral aversion.  And that parent would probably let her kid eat candy at every meal if he would just EAT CANDY.  And though it might seem logical to bribe with a sticker instead of a sucker, keep in mind that the oral aversion often comes with a texture aversion, and that sometimes includes sticky things like stickers.  Maybe offer to come along as a distraction... someone to hold the iPhone and run a video while the parent puts said child in a head-lock.

Thanks for reading my vent.  And a huge thanks to all of you who have supported us in this journey.

P.S. To any feeding tube parents out there... Do you have babysitters (other than family members) who know how to feed your kid?

the afghan

After visiting 14 states in the U.S., the T21 Traveling Afghan is on its way to Canada.  We're sad to see it go, but we're really looking forward to following its journey.  It was to have visited another little one here in MN before heading up north, but she was sick in the hospital and we didn't want to bring our germs over there.  We tried to work out getting it to someone else, but I couldn't make the logistics happen.  Sad tale from a former logistics engineer!

Micah didn't get a formal photo shoot like his buddy, Max.  But I took some fun ones in the family room.  I wasn't sure how Micah would do with the afghan.  He's not much of a blanket kid... he has some texture aversions (likely related to his lack of eating as a baby, by the way).  But he really enjoyed playing with the afghan!  And the afghan provided warmth to Micah in the PACU in a propofol-induced sleep following his CT scan.

Antibiotics, anyone?

The verdict is in.  After the CT scan, lots of phone tag, voicemails, and conversations with doctors (both Micah's and my own personal expert, Colleen), the powers that be have decided to treat Micah with a 14-day course of antibiotics (clindamycin, to be exact) to treat for staph.  The CT indicated that he "might" have an infection under/around his tube site.  We took pictures of the redness around the area before beginning the treatment.  Micah's pediatrician will look at it when the antibiotic course is finished.  Micah is scheduled for a follow-up with an immunologist on July 6th.  This was meant to just be an immunology work-up to check for any sort of immunity concerns (he can't be tested prior to then because of the IVIG treatment he received when he was in septic/toxic shock).  But the immunologist (who is an infectious disease doc) will also look at his tube site.  He will also be seen by his GI doc on June 25th and she'll take a good look at it too.

Meanwhile, I received a call from the pulmonologist, Dr. C, who does the sleep studies (he's also the critical care doc who discharged Micah on 5/2).  He was great.  He basically did a phone consult to eliminate the need to see Micah for an evaluation prior to the sleep study.  He also said that he prefers to wait at least 6 weeks after a child comes home from the hospital to make sure they're back in their regular sleep habits.  That would put us to mid-June.  Frankly, I really don't want to add something else to the mix right now, so I'm delaying the sleep study until after the July 6th appointment with Imm.

Micah had an appointment with ophthalmology today.  He sees Dr. B again in September.  This was a check-up with the orthoptist who works with the ophthalmologist.  She noted Micah is crossing his left eye up close and his right eye at distance, which she said was good because he's using both eyes.  She doesn't recommend patching at this point (which is good).  We're still likely dealing with a repair in the fall.

P.S. Micah is eating a little more these days.  And he slept through the night the past 3 nights.  Wahoo!
Pics soon...

Wordless Wednesday

Cutest thing in sneakers

Please pray for James

The reality of what Micah went through in April hits me sometimes like a brick.  Today was one of those days.  A friend on Facebook posted a link to an article about a boy named James in Albany NY who is in the hospital recovering from septic shock.  This little 3yr old boy has had a leg and an arm amputated.  His kidneys still aren't working.  And he has brain damage.  He's been in the hospital for 7 weeks.  He has months of inpatient rehab in front of him when he's stable enough to be discharged from the hospital.

When Micah was at Children's last week for his CT scan, the nurse who pre-op'd him was remarking about how amazing it is that Micah looks so great after going through his Toxic Shock experience last month told me of a boy she knows who lost all four limbs to Toxic Shock.

So who am I to complain about Micah's eating regressing about a year?  Or that we're still dealing with an issue around his g-tube site?  We're blessed to have him HOME and ALIVE.
(On a separate note, I've been wondering if Micah's pesky extra chromosome helped save his life through his Toxic Shock experience.  Kids with Down syndrome have a higher survival rate when facing leukemia.  Any chance it helped him combat a toxic infection?)

Not to say that life has been a cake walk since he came home.  Honestly, I'm tired.  I am in desperate need of a major vent.  But I find it difficult to vent right now because I feel guilty.  There are so many others in more challenging situations than mine.  We're all home... together.  And I'm not sitting here worrying about my husband's safety in Afghanistan or Iraq.  There are many out there who are.  And there are many others who have lost loved ones in the military, both recently and long ago.  So this weekend, in particular, I'd like to just simply say, "Thank you," to those families.
And I ask that you would please pray for the Deere family in Albany NY.

(If you're wondering about Micah's CT scan results... so am I.  There's some sort of thickening on one side, but it doesn't appear to be a major abscess.  Micah's GI doc wants him to see an Infectious Disease doc.  We'd like to avoid needing to move his g-tube site, which would be a surgery and another war wound on his belly.  And given all of the g-tube concerns, I'm postponing the sleep study until July... or August.)

Micah medical update

Ugh.  Yes, there's more to write.  It's exhausting to think about putting it all together in one place, which is why I haven't tried before now.

INFECTION:

Micah was NOT sleeping well the week after he came home.  By Friday 5/7, I couldn't take it anymore and took him to the pediatrician.  We decided the lack of sleep was likely due to a) a urinary tract infection (UTI)  and/or b) withdrawal symptoms from the heavy-duty sedatives he was on while in the hospital for so long.  A CBC (complete blood count) revealed that Micah did, indeed, have an infection brewing again.  After running blood cultures, she gave Micah a shot of rocephin to treat for a UTI.  The next morning his CBC showed a much lower white cell count so the rocephin was doing its job.  He got another shot of rocephin then started 8 days of augmentin (in case you're curious, the blood cultures all came back negative a few days later, so it was not a systemic infection he was fighting)

We also changed his MIC-KEY button (Micah's feeding port), per the recommendation from his pediatrician who felt that should have happened in the hospital due to the fact that staph can reside on plastic.  Whether it was due to the button change or the antibiotics, Micah's tube site looked great for about a week (it doesn't usually look "clear", but it's never looked super bad, i.e. pussy).  His tube site is now red and streaky again (he finished antibiotics on Monday and the tube site started looking questionable on Thursday).

He had another CBC done today and it looked fine.  But with the tube site looking red again, the pediatrician consulted with Micah's GI doc about the possibility of an abscess below the skin.  If there's an infection down under the skin, it wouldn't ooze or be noticable as a valid port of entry for the staph that almost killed him.  But if there's an abscess there, it could be (and likely was) a ticking time bomb.

So... how do we find out if there's something buried there under his skin?  A sedated CT scan is the answer from GI.  The first opening is Tuesday morning, and after the nurse at the pediatrician's office got that all scheduled for us, I realized that this is the morning of Nathan's last day of school and he has a program that morning that I'd rather not miss.  So now we wait until Monday when the scheduling office is open again.  Micah is still a "cardiac kid," so I don't know what all will be involved in sedating him for a CT scan.  Guess I'll find out soon.

EATING:

Micah has not eaten well since he came home.  There was some concern that maybe he had thrush since he had been on almost every antibiotic known to the medical community during the month of April (and again in May with the rocephin and augmentin).  But he has had major difficulties swallowing.  He'll open his mouth for a bite of stage 2 baby food (which is the only food he allows in his mouth, and in very small quantities to start with), but then he'll appear to gag on it and not take any more.  So... I wanted to make sure that he didn't have any damage due to his extended period of intubation (and the fact that the intubation did not go well in the first place and was done emergently).

We visited Micah's ENT on Wednesday to see if there was something going on inside there.  Throat looks fine.  Micah still has enormous tonsils, which are blocking roughly 80% of his airway.  The ENT wants to do a formal sleep study to check for apnea before we address a swallow study to check for issues with eating.  I believe he used the phrase, "You have the luxury of a feeding tube to keep him nourished."  I SWEAR, IF I HEAR THAT PHRASE FROM A DOCTOR EVER AGAIN, I MIGHT HAVE TO DECK THAT DOC!  I'll postpone the feeding rant posting for another day.  But suffice it to say, there is nothing luxurious about having a child with a feeding tube.

I'll keep you posted when the sleep study is scheduled.  Can you imagine Micah having a bunch of electrodes glued to his head and him falling asleep that way?  I've heard that some clinics will allow the child to fall asleep BEFORE attempting to attach the monitoring stuff.  Does anyone out there have sleep study experience?  Please share in comments below.

The other thing that happened at the ENT's office is that the doc had to put Micah under a microscope to remove some wax buildup that was blocking the doc's view of Micah's eardrums.  Good thing he did that.  From Micah's left ear this doc pulled out a large scab.  It was gross!

That was Wednesday.  Micah slept through the night that night.  And he ate an entire 4oz container of stage 2 bananas for dinner on Thursday.  Coincidence?  Unlikely.  I didn't put two and two together.  That was the brilliant mind of Micah's SLP (speech and language pathologist) - who Micah blew off today by taking a nap instead of working with her.  That gave us time to chat about all of Micah's feeding stuff.  She thought maybe Micah was having some irritation in that ear and by having the scab removed, his ear might feel better and that would make swallowing easier.

Unfortunately, consuming said bananas might be why he woke up crying FOUR times last night.  This child is anything but a controlled experiment.

CARDIOLOGY:

Yes, it's been a medical week for us here.  Micah saw his cardiologist yesterday for his 6-month checkup (oh, how I long to hear the, "See you in a year!" comment that most AV Canal repairs get after one year).  But I'm not complaining... this was the best news of our week.  Micah has mild leakage in his mitral valve and his tricuspid valve.  His mitral regurg used to be mild-to-moderate, so this is actually an improvement.  He is on enalapril and that has helped shrink the size of his heart and reduce the leakage.  It appears that he'll be on enalapril for a long time (maybe a lifetime?).  But the cardiologist does not think Micah will need another surgery to repair the valves.  Praise the Lord!

I confess that I was worried about this appointment.  Micah had an echo done in the hospital after he got out of the PICU.  I requested it because I knew he had this upcoming appointment with his cardiologist and given the chance, I'll have the echo done while he is still on mild sedatives in a hospital bed, thank you very much.  Micah wouldn't even let the cardiologist's nurse get his blood pressure on Thursday.  I cannot imagine having to suffer through the torture of an echo on Thursday!  Anyway... I was worried because his heart took a major beating when he was in toxic shock last month.  His blood pressures were dangerously low (almost non-existent for a short period of time when he was being intubated).  And his heart was working hard to get blood to his organs.  It wouldn't have surprised me to hear that his heart had been damaged.  But it wasn't!

Please pray for answers to Micah's eating issues, sleeping issues, and most importantly, that there would be some sort of resolution to his tube site redness (ideally, that it would not involve having to go in and surgically remove an abscess, but we'll take that if it means he'll be more comfortable and we can have peace about no recurrent infections in our little man).

On a separate note, we have the T21 Traveling Afghan.  Pictures to follow!

Self-advocate talk and random photos

(If you subscribed to my blog on Feedburner and receive emails, I'm sorry that they're looking odd lately.  If you click on the blog title in the email, it will link you to the blog and you can read it in the appropriate format.)

Our local Down syndrome parent group had a speaker tonight.  She's 30 years old and has Down syndrome.  She lives independently with a roommate (who also has Down syndrome), she does her own menu planning, cooking and shopping, she balances her own checkbook, she has two jobs, and she speaks very well.  What an awesome encouragement to all of us parents in the day-to-day grind of therapies, IEP's, etc.!  Lori's mom came with her, but mostly just to answer questions we had (and she ran powerpoint for Lori).

It was wonderful to be there with Micah.  Our last gathering was a pizza party and Micah got sick the next day.  This group pulled together and gave generously to us while Micah was sick.  We're so blessed!  This was Micah's highlight of the night:

(Have I mentioned he hasn't been sleeping well?)

Saying "farewell" to our faithful childcare providers!

More photos, just for kicks.

Doesn't everyone sit like this when watching a video?

We had a fun trip to Chuck E. Cheese on Saturday with the H family.  Our boys LOVE these girls!

(I could not figure out how to take this picture without Mark's head looking enormous)

Monday Micah update

Sorry for the lack of creativity.  I will do a Mother's Day post soon... maybe.  I also need to post pictures of our vacation in early April.  Micah got sick 48 hours after we arrived home on Saturday the 10th, spent the whole week sick, then ended up in the ER that Saturday (you know the rest).

Since coming home from the hospital on Sunday May 2nd, Micah has not been sleeping well.  After five days of that, I took him to the pediatrician on Friday.  We both guessed UTI (urinary tract infection) or withdrawal from the methadone he received in the hospital (ironically to reduce withdrawal symptoms from the other meds he was on during the first week).  The only way to accurately diagnose the UTI would be to put in a catheter (which would cause major irritation, which he clearly was already experiencing).

So, she opted to run some blood cultures (results still not back) and check a CBC.  The CBC (complete blood count) indicated a bacterial infection so she gave him a shot of rocephin on Friday and again on Saturday.  He's still not sleeping through the night, but this weekend was better than last week so we hope we're on the right track.

She also pointed out that bacteria can live on plastic so it would be a good idea to replace his MIC-KEY button (his feeding tube).  I had asked about replacing the button when Micah was in the hospital but was told it wasn't important.  Hm.  Anyway, we changed his button on Saturday and the area around his tube site looks better today than it has in months. Hm.

Micah is on an 8-day course of an antibiotic to treat for staph and the UTI, just in case.  I should have stopped his Miralax last Friday after the rocephin shot (you mommies of constipated little ones know EXACTLY what I mean here).

He's still only taking a very abbreviated nap and not sleeping through the night.  Please pray that he gets more comfortable soon.  Please also pray that he would get his strength back.  He used to beat Matthew up the stairs and he still can't climb them all the way.  His countenance is still off a bit too.  And he's had a couple of purple experiences (he's oxygenating fine, so it's more of a temperature regulation problem).  But we're blessed to have him home!

Happy Heart Day, Micah!

I had glorious intentions of sending a fun photo card of Micah to all of his medical friends at CHW who cared for him during his heart surgery and the weeks following.  But the past three weeks have completely obliterated my ability to accomplish that goal.  I might still do it and send them late.

Last year I gave a summary of Micah's heart repair day (May 5, 2008... Micah's 4-month birthday).  I won't re-hash that again this year.  Two weeks ago I thought Micah would still be in the hospital on this anniversary date.  Two and a half weeks ago there was a possibility that Micah wouldn't make it to this anniversary date.

I'm convinced God has HUGE plans for our little warrior.  He's survived so much.  He's strong and courageous.  And sweet as can be.
Happy Heart Day, sweet boy.  I love you!

Pictures from discharge day

It was a beautiful day to go home!

Bye-bye, nurses, docs and RT's.  Thanks for all you've done for me!

Happy to be in the car

About 5 minutes later

Home with Oma

What is this kid doing to me?

(Nathan was very excited to see Micah)

Micah was discharged this morning and is sleeping peacefully in his crib here at home. Praise God, the Great Physician.
I'll post some pics tomorrow. I'm exhausted.

Saturday Micah pictures

Check it out.  The cheese face has returned!

Thanks to all who sent artwork.  Micah has loved looking at his wall.

Micah and I went on a few stolls today.  Here are some pics of Micah with two of his PICU nurses.  Cally cried when she saw him today.  She was on the PICU team that was sent to the ER when Micah was critical.

I was lovin' the snuggle time with cheesy boy.

We're taking our boy home tomorrow!!!

Mom update: Mom's ankle is healing well but it's going to be a long journey.  She is to be non-weight-bearing for 6 total weeks.  She was "released" from the rehab center today and is staying at our house for a week before flying back to Illinois.  We set up a bed in the office on the 1st floor of our house for her as we have no 1st-floor bedroom.  It's not a very private arrangement... there are no doors to the office.  It's open to the foyer and the playroom.  Good thing she's an early riser...

Thanks again for the prayers, everyone.

Attempting a mobile blog update for the first time, so I'm sorry if this doesn't work well.

Micah spent the evening with mostly NO OXYGEN. He had good O2 sats, but he did have a purple episode (resolved by a warm blanket and an hour on high-flow oxygen).

He is handling "full feeds," though on a continuous flow rather than bolus. We're doing a trial of bolus feeds tonight and tomorrow.

We might be able to bring our little warrior home on SUNDAY!!!

Thursday Micah update

Would you believe our little warrior is out of the PICU?  And he spent most of the day playing in someone's lap or in his crib (though he's WAY to tightly tethered to his high-flow oxygen, which we're hoping can change to a regular nasal cannula tomorrow).  He laughed.  He signed.  He babbled.  He smiled.  He gave me a cheesy smile! (though I was unable to capture that on camera)

Though he's very weak and somewhat wobbly, he is getting back to his normal self a lot more quickly than I expected after being sedated on a ventilator for 9 days (he wasn't on a paralytic drug the whole time, but a fair portion of it).  PT and OT were both in today.  The OT is going to recommend a Feeding consult so that I have some security around him trying to eat.  He had a tube down his airway for 9 days and I'm a bit protective of his oral aversion.  I'd like his first eating experience to be a good one so that we don't risk starting this feeding thing over from scratch.

Micah got some great snuggle time with Daddy this evening.

Micah is normally not a finger-chomper.  But he cut his two upper front teeth while he was on the ventilator!  Though I wouldn't have gone to such an extreme, I'm pretty glad he was sedated through that experience. :-)

Micah's first room in Intermediate Care had a lovely view of a port-a-john, a crane, and multiple construction workers (if you could have opened the window, you would have walked out onto the rooftop on which they were working).  It was VERY loud and not very private (assuming you left the blinds open).  I asked if we could change rooms and they were very accommodating (the charge nurse even apologized that it was going to be late in the day... they couldn't move us right away due to nursing assignments that had already been made).  The room into which we moved late tonight has a stellar view of the Minneapolis skyline.

Thank you again for praying for our boy.

Wednesday Micah update

Micah had a good day today.  He looks soooo much better!  We had some snuggle time, read some books, watched some Signing Time videos, and played.  I saw him laugh (still not enough volume to hear major sounds out of him yet).  Mark is with him at the hospital doing overnight duty tonight.

Sweet boy still hasn't cried.  I actually wish he would... it might help his lungs get some much-needed exercise.  He complains occasionally about the nasal cannula and tries to get it off (note in the photo his arm in a "No-No" so he can't get his hand to his face).

Micah is still on 40% oxygen through his cannula, he is tachypnic (breathes rapidly) and he is still retracting when he breathes (meaning he's working pretty hard).  Not sure why this is and whether it's common 48 hours after extubation.  I'm hoping he gets an echo in the next couple of days to check his heart function.  There is a bit of confusion over the status of leakage in his heart valves when he was first admitted.  I'm praying that it's nothing of concern.

Tuesday Micah update

Micah is off the ventilator!!!  Sorry for the lack of update yesterday, but I never turned on my computer.  I can update Facebook from my iPhone, but I have no idea how to post to my blog from my phone (anyone with simple instructions, please help!).

Monday morning's chest x-ray showed that the upper lobe of his right lung was still collapsed.  So the doc did a bronchoscopy and was able to suck out some mucus plugs (it was bizarre being able to see inside my child's lungs on a video monitor).  Micah was fairly irritable most of the day yesterday since he was being weaned off his sedation meds in preparation for extubation.

After he was taken off the ventilator, they immediately put on a nasal cannula at 100% oxygen.  His breathing was VERY raspy and he needed frequent suctioning of his lungs to remove goop.  He was tachypnic and his chest was retracting with every breath (those were his two primary symptoms of congestive heart failure prior to his heart surgery two years ago, so I'm all too familiar with seeing his chest do that).  You could hear his breathing a few doors down the hall.

His breathing has gotten better since then.  By this morning he was only occasionally raspy and the doc was happy to not hear his breathing outside the room.  He's down to 40% oxygen and only occasional suctioning.

This morning they took out THREE more things: 1) arterial line, 2) another IV line in his femur, and 3) foley catheter (now he needs to pee on his own).  He still has a central line in his femur.  I actually saw the doc put that in while Micah was being treated in the ER.  It was definitely done on an emergent basis... kind of scary.  Anyway, the primary purpose of this line now is to provide Micah with TPN (nutrition through his bloodstream rather than his digestive tract).  He also still has a chest tube which is draining fluid from his chest cavity.  I'd like that one to be gone soon.

I was almost finished with this post and the doc came in and decided to take out his chest tube.  Yay!!!

So, where do we go from here?  They started Micah on a very slow drip of formula through his feeding tube this morning.  Previous attempts have not gone well (he has not digested anything of significance).  The rate is only delivering an ounce of formula every six hours, so it's not much.  But please pray that it's not all sitting in his stomach tomorrow morning.

Great progress since Sunday, praise God!  Now I'm off to hold my son for the first time in 10 days.

Sunday Micah update

Looks like today is our "one step back" day.  Micah's sedation medications had been stepped down starting on Friday, hoping to take him off the ventilator yesterday.  But on Saturday morning he was still having lung secretions.  They could have extubated him, but then they would rely on him to cough.  Micah doesn't have the most productive cough on a good day (could it be due to low muscle tone? don't know).  So they opted to delay extubation until today.  His white cell count came back high yesterday (33, if anyone cares... it was 19 last Saturday morning and fluctuated greatly after he arrived at the hospital).  It's still 33 today.
* The Infectious Disease doc was just here and she said that it's likely C-diff, a bacteria that takes over the gut when other "good" bacteria are destroyed by antibiotics.  She's not really worried about the 33 number, but she doesn't want to see it spike up.


And... today he has a partial collapse of his right upper lung.  He'll be getting some treatments for that today and he'll hopefully get off the ventilator tomorrow.


They started him on slow-drip feeds through his tube yesterday.  But he had a high residual today (meaning, lots in his stomach that hadn't gone through).  His belly is distended and the x-ray shows a lot of gas.  The GI doc thinks he's just not ready for feeds yet so we're stopping them.  Side note: the GI doc "on service" the past four days has actually been Micah's regular GI doc.  It's been great having someone here who knows him.  She was here on Friday when Micah's pediatrician was here and the three of us were able to discuss what to do with Micah the next time he gets sick.  Short summary: The next time Micah gets something resembling a GI bug with diarrhea, we will bring him to the hospital for an outpatient treatment of IV fluids in order to give his gut a break.


We were really hoping that Micah could get off the ventilator today.  I miss my melting Micah snuggles.  And we're tired emotionally.  The first couple of days were so crazy: it's taken a while to really get my mind around everything that happened those days.  For example, I've been following Chrissie's story on her mom's blog.  Chrissie is on ECMO.  Reading about her being on ECMO (a MUCH bigger deal than Micah's situation) reminds me that the doc here in the PICU had an ECMO conversation with us the first night Micah was here.  And I remember hearing her talk about him not having a pulse in his right arm for hours.  And how his pressures dropped so much during intubation that they were concerned about brain damage.

Micah's wonderful cardiologist in WI called me Friday.  Micah has been so well cared for by doctors here.  And he's clearly made an impact on those who he no longer sees.  Dr. S made mention of how great it was that we were so close to a major children's hospital when this happened.  If we had taken Micah to our local hospital back in WI (which happens to be a satellite of Children's in Milwaukee), he would have been life-flighted to Milwaukee... one more step in what was already a difficult Saturday.  He might not have made it through one more step.  We truly believe that God had His hand on everyone who touched Micah on Saturday and are forever grateful for those who cared for our son.


From across the hall, I hear a baby crying.  Oh, how I wish that was Micah.  I long to hear him say, "Dada."  Please pray that when we do hear him say it, that there would be no raspiness in his voice.  Because Micah's intubation was an emergency and there were a lot of other things going on (i.e. puking and very low blood pressure), I'm concerned about potential damage to his vocal folds.


Please pray that Micah can be extubated tomorrow.  And that his gut would start working well.  And that he wouldn't get any additional infections.

a death in the "family"

(to my biological family... sorry for the shocking title... this is not someone you know)

The phrase "Down syndrome community" does not do justice to the tie that binds us together.  I love the tight community I have found thanks to that pesky and perky extra 21st chromosome that Micah possesses.  This community exists online as well as in person.  There are so many kids (and moms) who I feel like I know, even though we've never met in person.  I can't even begin to guess how many hundreds of people have been praying for Micah since last weekend.  And we are so grateful.

8yr old Carly died today.  Very unexpectedly.  She had her heart repaired as a baby.  She beat leukemia in 2004.  She suddenly got sick today and died.  Unexpected.  Tragic.  And I would say "unimaginable," except that last Saturday, we were almost in her family's current situation.

Why did God spare Micah's life and not Carly's?  I cannot begin to fathom.  His ways are not our ways.

Hug 'em if you got 'em.  Be thankful for every day.  And pray for Carly's family. (they're in Michigan, in case you were wondering)

Friday Micah update

Micah looks SO much better today.  I convinced his doc to take out his scalp IV yesterday because it hadn't been used in 2 days.  Then they took a line out of his left arm overnight too and gave him a sponge bath overnight.  It's so nice to see his hair without a bunch of tape in it (the nurse taking that out last night was questioning the overkill... I think it was related to the fact that it was so hard to get a line into him on Saturday that everyone was extra protective when they got said line in).

They turned down the rate of his ventilator at 11am and ran bloodwork at noon.  Blood gases look good, so they'll turn the rate down again at 5pm, run labs at 6pm, and then go from there.  If that continues, they will extubate him tomorrow (Saturday).

Micah still doesn't have bowel sounds.  They are hoping that will change after he's extubated and more alert.  They will likely not attempt to put food into his stomach again until they hear bowel movement.  He still has a bunch of extra fluid in him too, but he's peeing well.  Okay, how do you define the word "peeing?"  Does it count if it's simply coming out of your bladder into a foley?  Personally, I think of it as more of an active/intentional verb.  I just asked the nurse.  Officially, he's "making urine," but not "peeing."  Got it.  But I digress.

Some of you have asked how you can help, be it near or far.  If you have small kids who are praying for Micah, you could ask them to draw or paint some fun pictures for me to post on his walls.  If you're local and want to join the meal or babysitting crew, let me know via Facebook or email.

But another way you can serve us is to serve others by you.  It is sooo much easier on us than it is on other families who are here who do not live close to a pediatric hospital.  There are many families over at the Ronald McDonald House for MONTHS at a time.  You could get a small group together and pick a night to cook and serve a meal to families staying there.  We enjoyed those meals tremendously when we stayed at the RMH in Milwaukee 3 times in 2008.

I can't wait to hold my boy!!!

Thursday Micah update

Thanks for checking in to see how our little guy is doing.  His weight this morning put him at about 22% higher than his normal weight.  That's great compared to the 40% higher that he showed on Sunday.  But Micah was positive on fluid most of the day today (meaning, he was given more fluid than he peed off... not what we want, so they're increasing his diuretic and not taking out the chest tube).  His color is "normal."  His skin is peeling and bleeding in some places, but I hear that's common when recovering from the extensive rash he experienced a few days ago.

They tried giving him some food through his g-tube yesterday and overnight.  Unfortunately, all that was given ended up coming out of his tube when they checked his residual this morning (nothing moved downstream).  So we wait another 24 hours and try again.  Getting Micah's bowels to function again is probably going to be the biggest issue related to his release home.  He seems to be doing well from a respiratory function.  He is taking more breaths on his own today but it does not appear that he will get off the vent until this weekend.

It's a tough balance to strike with paralytic drugs (super dose of muscle relaxant), sedation, and getting Micah to breath more independently.  But he's doing better today than yesterday.  Since arriving here, he has not had one day worse than the previous day, which is not what we were told to expect.  So that's very good news.

Specific prayers:

• More independent breathing
• Digestive tract to "wake up" and start working
• Continue to expel fluid, through chest tube and urine
Here's a photo of Micah with his pals yesterday.
Say hello to Barkers, Sock Monkey, Dandy Dog, and Lancelot.

Doesn't Barkers look concerned?  He's been with Micah the longest (we brought him with us from home before anything else because we thought Barkers would be lonely in Micah's crib all alone at home).

Here's a photo of Barkers taking care of Micah on Monday by holding up his ventilator tubing.

(Micah's head is hiding behind Barkers)

Wednesday Micah update

Here's what we know this morning:

• Micah is completely off blood pressure medications and his pressures are doing great.
• The docs are trying to manage his diuretics to reduce his fluid level, but not too quickly.
• Fluid around his left lung has decreased but it is still not completely clear.
• They took him off the "roc" (rocuronium bromide... kept him from moving), but he was moving around too much last night (he's not awake... it's more like twitching) and they were concerned about all of his lines and tubes being compromised so they put him back on it last night.
• Micah's vitals look great.  His skin tone is back to "normal" (almost getting pale, actually).  He's performing well in his lead role in "The Incredible Shrinking Baby."
• They're starting to feed him through his g-tube this morning (roughly 3cc's/hour, which is about 1/10th of an ounce).

Next steps:

• Start removing peripheral lines and the chest tube
• Continue to reduce the assistance of the ventilator (he's taking a few breaths on his own)
• Hopefully take him off the ventilator this weekend
• Increase his sedation so that they can decrease the "roc" and enable him to breathe more on his own

Specific prayer requests:

• Micah still has a lot of secretions in his lungs and we'd like that to diminish.
• Continued fluid reduction, specifically 200-300 cc's per shift, which is 7-10 ounces
• Tolerate (and increase) the feeds through his feeding tube so that he can get off the TPN (total parental nutrition... it's nutrition given through an IV... can have some side effects)
• Intestines to kick in and digest the food that's going into his tube

Thanks for your prayers, everyone. We are so very thankful for the life of our little boy.



Mom update: My mom is being moved from the hospital to a rehab center today, where she will likely stay for 5-7 days.  Thankfully, the place is close to our house.  Her ankle will not be casted for 2 whole weeks.  Yes, it was quite a set of breaks.

Update on Micah's health

(this is not how Micah looks right now, but it was the last cheesy smile I got on camera before he got sick)

Sorry for the delay in updating since Colleen posted to the blog on Sunday morning.  Micah was in VERY rough shape over the weekend and we are beyond blessed to have him still with us.


When Micah hit the ER on Saturday, he was quickly diagnosed as "septic," meaning he had some sort of infection raging through his blood stream.  He was also terribly dehydrated.  He had been sick since overnight Monday.  His temp and rash started Tuesday.  Pediatrician swabbed for strep on Tuesday but it was negative.  He had a super red rash on his belly on Wednesday (I posted a pic on Facebook... I'm glad I have that to go back to because that's my only documentation of the week and I think it helped the Infectious Disease doctor determine a treatment regimen this week).


Wednesday night his diarrhea started and he still didn't feel better on Thursday so I took him back to the pediatrician.  Bloodwork showed a white count that was barely above the normal range.  With no infection present in visible places (g-tube site looked fine, ears clear, throat red but not infected), the doc recommended to keep trying to keep him hydrated and bring him back on Saturday if he's not better.


Micah spent the majority of last week rolling around on the floor and appearing quite uncomfortable.  Being held didn't make him feel better.  He didn't sleep more than 1.5 hours at a time between Tuesday night and Friday.  Then Friday night (after a very long day of 14 messy diapers.... I'll spare you the gory details) he slept from 11pm to 6am.  I did not wake him to give him anything through his g-tube because he was so tired he was appearing delirious on Friday night.  Sweet little guy... he kept signing "eat," and would open his mouth for baby food but once it hit his mouth, he didn't swallow it.


Micah does not know how to drink.  He's had a few sips of water from a cup before, but he does not allow much of anything to get close to his lips.  I'll share more about his feeding issues in a later post.  Anyway, Micah signed "water" constantly on Friday.  He even swallowed some when we tipped a cup to his mouth.  Most of the water ended up on his front because he didn't know how to close his mouth and swallow it.  But he knew he wanted to drink.  It was heartbreaking.  He finally had the desire to drink, but he didn't have the energy to learn how.


Anyway... after his long sleep on Friday night, he woke up with green bile leakage from his g-tube site.  I took him to the pediatrician again.  His white cell count was now in a range that looked like he had some sort of bacterial infection, so the pediatrician gave him a shot of rocephin (a heavy-hitter) and a prescription for an oral antibiotic.  We decided to try to hydrate him at home for a few more hours before taking him to Children's for IV fluids.  In retrospect... (trying not to go there)


So, he had been to his pediatrician on Tuesday, Thursday, and Saturday morning.  It was not for lack of attention that he ended up so sick.  Apparently kids tend to "tank" quickly, rather than do a gradual decline in health.  Micah hit that point on Saturday afternoon.  He tanked.  His blood sugar was 5.  His respiratory rate was in the 20's.  His blood pressure was down to about 40.  It was very difficult to get a line into him because he's a tough stick on a good day, let alone when he's dehydrated.


I think at one point I counted 13 medical personnel in the critical ER room with him.  He vomited green bile while he was being intubated (meaning that got into his lungs... though that hasn't mattered given the fact that he has received so many antibiotics that it would be tough for any bacteria to grow in his body right now).  Two docs came down from the PICU and within minutes he had a central line placed and he was intubed.  I asked at some point, "When is he going to get moved upstairs?"  The answer: "When he's stable enough to be moved."  Honestly, this all happened so fast that I was still thinking he just had some sort of stomach bug and he was severely dehydrated.  Sometime while all of the craziness was going on, someone from registration came and got him in the system.


Saturday night was one of the more difficult nights of my life.  Micah was not without a doctor (or two) by his side in the PICU for hours.  I mentioned to the doc that Mark was coming with some stuff for me and to see Micah.  We were going to trade places (I would go downstairs to watch Nathan and Matthew while Mark went up).  The doc told me that she would like to talk to both of us together about Micah's condition and she would find someone to watch the other two boys.  Okay, kids under 5 aren't allowed in the PICU.  How will that work?  "Don't worry about that."  Um, okay.


How sick was Micah?  The doctor told us, "I'm concerned about Micah's ability to survive this."


But that doctor doesn't know our little warrior.  More importantly, she may or may not know our God.  But regardless, it appears that God has more in store for our little guy here on this earth.  He made it through the night, thanks to the prayers of hundreds, I believe.  And with a lot of help from a ventilator, a defibrilator, fantastic medical staff, and lots of drugs.  He kept getting more red and VERY swollen.  He was getting tons of fluid.  His BP had dropped low enough that the doctor was concerned about blood flow to his brain (he had a CT scan overnight and there was no swelling, so that appears to be okay).


So... they were able to control his BP and his heartrate most of the night (barring the one time he was in atrial fib and needed to be shocked... scary).  And his kidneys were still producing urine this whole time (his bladder got super full, though, as no one thought to cath him until the middle of the night after his belly CT showed the size of his bladder).  By Sunday morning, he was doing a bit better.  Still not out of the woods, but much better than the day doc thought he would see when he got in.


Sunday afternoon, the Infectious Disease doctor came in to check Micah and talk with me.  I think she was there for at least 2 hours.  Her best guess at a diagnosis was Toxic Shock Syndrome, though we still didn't have an isolated cause for it.  She started treating him with IVIG, which is basically a transfusion of other people's antibodies in hopes that those antibodies would kill whatever toxin was in Micah's blood that his antibodies were unable to kill.  It appears that (and the additional antibiotic) are working.  He was doing better last night after that was added.


Early Monday morning the docs put in a chest tube to drain some of the fluid accumulating around his lungs.  It gave him some very quick relief by draining a bunch of fluid off.  Micah's color has gotten better all day and he is becoming less swollen (Sunday morning if you touched his skin, you felt like you were touching a drum because his skin was pulled so tight).  He basically had about 8 POUNDS of excess fluid in him (keep in mind that he only weighs 22 pounds, if that).


So... after a couple of days, are you wondering, "How in the world did Micah get Toxic Shock Syndrome?"  You are not alone.  Everyone has been wondering that.  The cause has likely been idenfied by a blood culture result that came back today.  His blood contains "gram positive cocci in clusters," aka staph infection.  Want to see a picture?  Click here.  Or look below.  Mark and I went to a friend's birthday/Halloween party dressed as staph (don't ask... she's an infectious disease doctor, go figure... and she's the one who updated my blog on Sunday morning).
How ironic that Micah has our most original Halloween costume running through his veins.

Going forward, he needs to continue to pee off all the fluid.  We spent the first three weeks of his life praying for poop.  Now we're praying for pee.  Gotta love being a mom.


So what went wrong?  Could this horrible TSS have been prevented?  Not sure.  But there are a few things for which I wish we could get a "do over."
1 - Take him in for IV fluids earlier.  Next time he gets a nasty stomach bug, you can bet that he'll be getting a bolus of IV fluids at the hospital to give his intestines a break.
2 - Do not let an antibiotic into my child's system before having a blood culture run.  Why?  Because the rocephin shot he received at the pediatrician's office compromised his bloodwork in the hospital.  Once you have an antibiotic in your system, the blood cultures that are run do not have accurate data because there's an antibiotic messing with it all.  Side note: that said... if he hadn't had that rocephin shot, he might not have made it out of the ER and into the PICU.  But if the pediatrician had run a blood culture before the shot, she still wouldn't have known immediately what bacteria was there, but at least there would have been a quicker diagnosis.  Hind sight is 20/20, though.
3 - Take better care of his g-tube site.  A staph bacteria needs a place to enter the bloodstream.  Best guess is that Micah's entered through his g-tube site because he did not have any open sores on his body.


Thank you for your continued prayers.  Micah is making progress, but we have a long way to go before we bring our little boy with the cheesy grin home.

On a separate note... my mom came into town yesterday to help with the other two boys this week.  She fell down the stairs and broke her ankle.  We had an ambulance at our house on Sunday night at 10:30 to take her to the hospital because we couldn't get her to the car.  She was white as a sheet and almost passed out.  She stayed at the hospital and had surgery Monday morning to place 2 pins and a plate in her ankle.  She'll likely be discharged on Wednesday.  It appears she'll be spending a couple of weeks on our sofa.  I won't lie... we didn't need that to happen.  And I feel badly that I can't care for her right now.  But with Micah in the PICU, I know she understands.  We'll find some help for her at the house.

We have had so many offers to help with the boys and to bring meals to our family.  We are quite blessed with a great community of new friends here in MN who have pitched in mightily to serve our family.

I'm posting pictures below, but if you have a queasy stomach, you may not want to look down any further.

These first two were taken on Sunday

This was taken this morning (note less puffy eyes)

PLEASE PRAY FOR MICAH

Micah is in intensive care as of yesterday evening. He had a gastrointestinal illness that has turned into an overwhelming infection requiring him to be on a ventilator and very very sick. They were not sure if he would make it through the night, but he did and is doing slightly better this morning.

They have some friends that have helped them out by watching the other two boys last night and today, and Jennie's mom will be there tonight. She had no specific requests except prayer.

Please pray for Micah's body and the healthcare team caring for him, and to sustain Mark and Jennie; they hardly slept and things are still very critical.