A Little Something Extra

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)

54 comments:

Ann said...

I'm so happy that Micah is doing better and grateful that you posted all your "do overs" (good information). I'm praying that he continues to get better and you see his cheesy grin soon.

Sally Carter said...

Thank goodness he's feeling a bit more like it! Been thinking of you all - what a horrid time you've had. More prayers all round.

Amber said...

Jennie, I can't imagine the roller coaster ride you and your family have been on. Our family is praying for you.

my family said...

poor little man, tears stream down my face as I read this...my heart is breaking for all of you. I am so glad to hear he is doing better. is he still on the vent now? I wish you were closer and I could help you out with the other boys but I will pray instead for God to give all of you the strength to get through this tough time. You mom is in my prayers too.

{hugs}

Bridget said...
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Cathy said...

Jennie...thanks so much for posting all of this. I've had prayer warriors asking how he's doing. Micah really is a warrior and a beautiful testimony to the power of our almighty God! My prayers continue.

Kris said...

I read your beautiful post through streaming tears. What a little warrior indeed! And may I mention that you, Jennie and Mark, are also warriors?! Oh, and add your mom to the warrior list as well. Thank you, God, for giving Micah to us for a longer while here. Continued prayers...(PS. Great Halloween constumes!)

Kris said...
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Sari said...

Dear family,
I clicked on your post through FaceBook and though I do not "know" you, I wanted to send a comment/prayer/hugs your way.

My name is Sari and I have a little one - Samuel-who will be 4yrs old next month-with Down Syndrome.

My heart is hurting for your little one and for you-
Praying for him and for all of you. For the medicines to work quickly and heal his little body, for strength for everyone!
We will spread the word for continued prayers.

Much love from SC.

Mommy to those Special Ks said...

Oh my goodness how scary! I'm so glad he's doing a bit better! I can't imagine being told that he may not survive! I would have been terrified! Sorry to hear about your mom, too! We will be praying that Micah is home soon and back to his normal smiling self!!

Anonymous said...

Looking at those pictures of Micah has reaffirmed my faith in God and miracles. And I have always been a believer! I think our children with designer genes are really strong and tough-God made them that way! Continued prayers and well wishes from WI.

Jonathan's Mom said...

Praise God for his mercy. We are continuing to pray like crazy and our readers, family, and friends are, too. Love to all of you!!!

RK said...

Oh Jennie...what a great deal to go through! We've been praying for Micah and your family and will continue to do so. When you described the wanting water but not being able to drink it... I know that so well. That's the worst feeling, as a mom. You know and now HE knows that he needs something but he can't get it. So hard!

We're praying that he continues to get better, that you all are able to juggle all the other responsibilities of the other kids and your OWN health...please update when you can, but we understand that you're busy, of course! We serve a powerful and loving God, and we trust him to hold and heal little Micah right now when you are not able to.

Cassie said...

Continued prayers for Micah and your family (and your mom). I can't imagine what your family is going through. God Bless you all.

Sonia said...

Very glad to hear he is doing better. I will be praying and asking my friends for prayers too.

guitarSevilla said...

Still praying for Micah. I am happy he is doing better.
God bless you.
Cherie

Lacey said...

Praying hard for your little warrior! I'm in tears, this brings back memories for me, especially those pics with those horribly puffy eyes!
Our little angels get so sick so fast, but they also have the ability to heal that normal people weren't blessed. That stubborness is the reason why they are still with us. Kiss him from all of us!

B. McKenzie said...

Oh my. Just found your blog through babycenter. Praying so much for Micah to fight and for God to heal. Hugs your way.

Andy and Katie said...

Continued prayers, Jennie....and I have tears running down my face reading the summary of your week/weekend. Our God is HUGE!!! Yay God! Keep fighting, Micah....and Mom and Dad...and Grandma....and Nathan and Matthew! :) Love to you all.

Amy and Aaron said...

Oh my... oh my.

I found your blog through Cathy at Lily's Garden - and will definitly be praying for your whole family, and for a speedy recovery for Micah and your mom.

We are no stranger to the hospital ... or to miracles. I have 3 boys: Micah (4), Matthew (2), who has Ds and is our miracle, and Jesse (7mo). Matthew wasn't expected to live more than a few hours when he was born, and spent 6 months on Hospice before open heart surgery ... and is a vibrant and incredible 2yo now! I think God has a special purpose for our "little extra's!"

You have incredible taste in names, by the way! We will keep up on your story, and know that you have many prayers coming your way. Hang in there - this is SO very hard!

http://babymatthew.wordpress.com

Erin said...

Thinking of you and your family right now. Even though it's still tough, it's wonderful news that Micah is doing better.

Kelli said...

Jennie...just wanted you to know that I haven't stopped thinking about you since I first heard the news about Micah. I read this post through streaming tears because of the fight your lil' guy is showing everyone he has. I have asked many I know to pray for you and your family. Thank you for sharing the post with all of us...HUG. HUG. HUG. HUG. HUG. HUG.
...and many more!

Melissa said...

I am sending prayers your way and am so thankful Micah is doing better!

Rochelle said...

Grateful God heard all those prayers and Micah is doing better. We will continue praying for him.

Emily said...

God answers prayers... that's for sure. We'll continue to pray for your little warrior!

Lori said...

I am glad he is feeling better. We are continuing to pray for your little warrior, and for your whole family!

Little Liam said...

Prayers for Micah and your family as you try and cope during the difficult time. I am glad to hear that Micah seems to have gotten through the worst of it. God Bless your family.

Jennifer said...

Jennie - So sorry to hear of all that has happened to Micah this past week. We prayed for you as a group on Monday. Your pictures break my heart. He didn't even look like himself. He is such a warrior! We continue to lift ALL of you up in prayer!

Love,
The Kuhlow Family

one_plustwins said...

Jennie, thank you so much for the update. God bless your family. We will continue to pray for Micah and his team of doctors.
And I cannot wait until we get to see a new picture of Micah...sitting up and playing with the cheesiest grin you have ever seen sitting on his face!!!

Loren Stow said...

Happy to hear that little Micah is doing better - all our best thoughts and prayers are with you all!
Hoping Micah comes home soon!

Anonymous said...

I just wanna say im praying for your little man. I just wanna kiss his face.....My son got a pretty bad infection in his incision when he had his heart surgury and we kinda went through the same thing trying to figure out what kind of bacteria it was. Your little guy looks like a fighter. Good Luck. May the Lord be with him.
Karessa from babycenter

The Lehnick Family said...

Thank you so much for updating all of us...God truly answers prayers...I have many friends praying for him as well...(((Hugs!))) to you all!

Becca said...

Oh my goodness, how terrifying!!! I'll be hoping for a swift recovery for your sweet little guy.

Jessica-MomForHim said...

Thanks for keeping us updated. We've been praying hard for you here, too!

Rena said...

Poor little Micah!! I had no idea this had happened. I will be praying he makes a quick and complete recovery.

Cory said...

Awww!!! I love your "re-do list", and we are continuing to pray for continued success with Micah, and your mother. Bless their hearts! Also we are praying for you and your hubby to be sustained through this time, along with your other kiddos. :-)

Heidi said...

Those pictures of Micah just break my heart. I have been praying for him and your family so much over the last few days. I will continue to keep you all in my prayers.

Baby Gabe said...

He's such a fighter. I'm sure he'll improve everday and give you another cheesy smile in no time. Hang in there...you are a great mom.

Nana said...

Hi! Colin's Nana here again. I'm glad to see a slight improvement for little Micah! It certainly shows what a warrior he is! Again, we will keep you all in our prayers and thoughts! I also hope your mom is feeling better! Little ones shouldn't have to suffer so. Take care! Love, Nana

Kathleen said...

My thoughts are with you and your family as you go through these challenges together. Micah is a fighter. He always has been. All the best to everyone and speedy recoveries for all!

Kim said...

Jenny, I am so relieved to hear that Micah is improving. What a precious little boy and such a fighter. You and your family are in my prayers. Many people (life group and friends from work) have come together to offer up prayer for Micah. He is touching many lives as God holds him in His hands.

Kim said...

Jenny, I am so relieved to hear that Micah is improving. What a precious little boy and such a fighter. You and your family are in my prayers. Many people (life group and friends from work) have come together to offer up prayer for Micah. He is touching many lives as God holds him in His hands.

Kim said...

Jenny, I am so relieved to hear that Micah is improving. You have all been in my prayers. Many people (life group and coworkers) have gathered to offer up prayers for Micah. He is so precious and such a fighter. He has touched many lives, as God holds him in His hands.

Kacey Bode said...

I am so glad to hear that Micah is improving. I can NOT imagine how incredibly scary this has all been for you. The pictures of Micah made me cry, I can't wait to see a picture of that sweet smile soon!!! I will continue to pray for you all.

Signe said...

just simply want to say that you ARE in my prayers. That wonderful little guy just has to get better and get on with his amazing life. I am sorry to be far away..i wish that there were something I could do or say to help. Stay strong, Mama..fight the good fight.

Deb Iams said...

Jennie - prayers are flowing from Springfield for you, your boys and Marge! Tell your mom she should not try to keep up with all the ladies at FCC - what with broken shoulders, elbows and ankles! It is not a contest! Glad to hear Micah is doing better, although I am not convinced by the photos. Can't wait to see a more current grin!

Derek, Kenzee and Gage said...

We'll keep praying for Micah and your family, I am so happy to hear he keeps improving. What a blessing.

Anonymous said...

Jennie - Thanks for the update. I think you're right - God has a lot more for Micah's life, evident by what a little warrior he is. May quick healing come to your little sweetheart! I'm praying for all of you! Dove

Anonymous said...

Oh Jennie! I am so sorry Micah is going through this...hang in there and stay strong. I pray for a recovery and stregth for you all to get through this.
--Nathan's Mom, Sherry Perez

Wyatt's Grandma said...

My heart goes out to your family. We went through something like this when our little guy was 3 months old. He was super sick for 6 1/2 weeks. He is 4 now and doing great.

I will keep your family in my prayer. Sending a big hug your way.

Eric and Crista said...

We're so happy to hear Micah is doing better. Your posts bring such tears! Know that he is in our hearts and prayers.....

Adina said...

I am praying for Micah and your family. I can honestly tell you that I know how you feel since as I watch my little one slowly get better in the NICU. No one should ever be told that their precious child may not survive, it is the worst thing that can happen to anyone. It sounds like you are a strong family, but I believe extra prayers always help. Hugs - Adina

Anonymous said...
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Anonymous said...

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