A Little Something Extra

Friday, April 30, 2010

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, April 29, 2010

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, April 28, 2010

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, April 27, 2010

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, April 25, 2010

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.

Friday, April 23, 2010

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, April 22, 2010

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, April 21, 2010

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.

Tuesday, April 20, 2010

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)

Sunday, April 18, 2010


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.