26 January 2013


Now that I am no longer holding my breath, I wanted to give a recap of our past week.  This is my way of processing.  And please do not comment that I post too much info.  I have no tolerance for stupid comments right now :).  Thank you.  Moving along...

Ok so we are able to breath in deep again.  Like, I have taken many deep breaths this morning, watching my precious new baby boy sleep more peacefully than he has in six long long days.  Praise God.  Praise praise praise our most holy glorious Father in heaven who is our healer and comforter.  Ok, recap in pictures...

This past Saturday our little guy started getting snotty.  Sunday afternoon I sent this picture to Bud to show the nurses and ask if we should be concerned.  They said to keep a close eye, he very likely could be getting RSV.   

Sunday night his head wasn't warm at all but when I went to change his diaper I noticed his body was on fire.  Sure enough he had a fever over 101.  It was time to pack up and get to the hospital.  The tears flowed as I knew we might be about to walk down a long hard road.  But soon after you just buck up, basically, and have Gods grace to stand strong for you baby.

That night he was admitted to the hospital in San Angelo.  The days there were very up and down.  He would do great then get worse.  Nights were the absolute worst.  My last post on here I talked of the worst night.

But then after that blog post, the worst two nights followed in Cooks hospital.  Our pediatrician felt San Angelo was not the best care he could get at this point with him not having made any drastic improvements and it was time to get to some top notch specialists.  We loved our nurses and respiratory therapists though and were thankful for all they could do.  There's not pediatric ICU in San Angelo and a team that could respond as quickly in case of anything.  So Wednesday morning the call was made to get him flown to Cook Children's Hospital in Dallas area.  Tears flowed again and I knew I better get a snot slinging cry in the shower before we left.  

Thankfully Claire was out of the hospital and fully recovered.  Her and big brother were SO so happy to be back together.  I so wish I could of see them play again together after being apart the longest they ever had.  I know it was such sweet moments.

All our family, Garden church family, and dear friends have risen to be around us and support and help in many many ways.  Its been incredible to have that.  My parents had Elisha and Claire, Bud jumped in the car to drive to Dallas, and my dearest friend Lauren was able to make it up to the hospital and hold Ezra while I packed and showered.  


The plane arrive within a few hours and we were transported to the san angelo airport in an ambulance.  Ezra had to take his first flight, not the flight we wanted it to be, but his first of many to come.  
The paramedics that transported him were absolutely AMAZING.  I loved them.  They loaded Ezra in this microwave looking box that was on a stretcher.  It was like a mini hospital room for him, with his stats still running and showing us on the outside of the box.  The three numbers I've been staring at for the past week:  heart rate, oxygen saturation, and respiratory (how hard he is breathing).  Seeing the numbers show up on the stretcher was comforting.  He fussed but once we got moving, he snoozed some.  Tears flooded again seeing him on the stretcher.  Thankful I had Lauren there to walk us out.  

We loaded up on the Teddy Bear Transport jet plane.  They asked if I had ever flown before.  I laughed.

We started to take off and another person asked if I had flown before.  I laughed again.  Then explained how we live in Kenya.  That started up a conversation that helped make the plane ride go super fast.  Always good to talk about our Mattaw family.  It got me all pumped up again about getting back home soon.  Ezra was doing well, they kept assuring me that he was ok and doing well.  Then somehow I managed to sleep the second half of the plane ride.  I mean it was only about a 45 minute ride.  But I'm known for being able to sleep easily on planes, just didn't know I could in these circumstances.  Oh but I did.  God's peace was beyond understanding.  I dreamed we had made a stop in California to go to the beach.  I was a little disappointed to wake up and see water as we were descending and it was only a lake in Dallas.  We then got into another ambulance to be transported from the airport to Cook's.  It was a brand spankin new ambulance and Ezra was their first patient to transfer in it.  The whole ambulance crew was hilarious.  They said they are one big dysfunctional family.  I loved to have the witty comic relief for awhile.  They shared all about how there's a chickfila, starbucks, lego center, build a bear, and so on in this hospital.  I knew physically I could survive in this place :).  I wished Claire could of been here when she recovered from RSV.  But then again, she might not have wanted to leave :).  We got to our floor.  They were admitting us into a room on a floor, not ICU.  There was some miscommunication and the room wasn't clean.  They were so ashamed to welcome us in that way.  We stood outside and I stared in at my baby boy, seeing him snooze in his microwave.  

Wednesday night at 7pm.  They got us in the room and settled.  Bud got there soon after.  We had a room bigger than the condo we are staying in in San Angelo.  Ok not really but pretty dang close.  We had this great view of the princess castle courtyard.  They got Ezra hooked up.  At this point he had not eaten in quite awhile but was on an IV to keep him hydrated.  He hadn't taken a bottle since the night before and I hadn't nursed him since Tuesday morning at 7am.  I very much remember that being the last time.  It had taken him over 30 min to latch on and he only ate about 10 min.  Anywho, he got settled and my best friends from high school came to visit.  I graduated high school from this area and four of my friends living nearby.  It was very comforting to have them visit.  We sat around until visiting hours were over at 9pm.  Then we managed to finally eat dinner.  While eating, the nurses and respiratory specialist worked hard to get Ezra settled and comfortable.  He kept getting fussier.  Then another nurse came in to meet us, she knew Bud when he was really little.  SMALL WORLD.  Bud's dad coached her when she was in high school.  She shared that the dr we had is the best in the hospital.  That put us at ease again.  The dr came in and we could tell quickly that she was right.  He left and kept coming back to check on Ezra.  He explained that he couldn't give Ezra a higher powered oxygen machine on the floor, that Ezra would have to go to ICU if he was going to need it.  He left.  Tears flowed again.  We kept proclaiming God's Word and truth over Ezra.  For the Word does not return void.  Even when it didn't look like he was improving or God was at work, we stood on His promises, because God's character does not change.  I don't understand why some are healed and some aren't but I do know that my God is the same yesterday, today and forever.  He is our ultimate great physician and desires that all would be healed.  So we stood on that.  Not to sound super spiritual here, because its definitely Gods strength to keep on, but I have been interceding more for Ezra in the past week more than I ever have prayed within a week.  We sat and watched him.

Then by 11:30am the Dr. came in and made the call to move him to ICU.  He said "hey guys your little monkey just isn't improving so we need to move him downstairs to help him better".  Did I mention how amazing our Dr is.  He decided to help roll Ezra down with us and the nurse.  We got to the pediatric ICU and to our section.  Immediately a team of five people went after him, rushing to get him settled, checked in, vitals checked and on a better machine.  He first started out on a tube in the nose that put pressurized ventilation into his lungs.  We were up and down the whole night, Ezra struggling to breathe.  His respirations were very high.  The pulmonogist came over to sit and talk to us.  Tear rolled and he asked questions and Bud had to respond.  I could hardly breathe.  Sure enough the love of Jesus came rushing in and gave an extra pump of strength to get up and intercede for Ezra.  I was so thankful to have Bud here.  He's been a rock to stand with and hold mine and Ezra's hand.  Then the worst moment for me of this week came, which I'm thankful it could have been worse.  One of the dr.'s came over and explained that he is getting tired and they might have to to a breathing tube which is invasive.  Just the way she looked at him, then me, then him and the tone of voice she had when she said "I'm just concerned for him, he's getting really tired and I don't want him to give up".  That was not an awesome moment.  Things started to calm down and we were so drunken tired that we managed to squeeze on the little couch in our area and close our eyes.  I was woken up later by Ezra's squeal.  I look over to see a team rush in and my heart sank.  They were putting an even higher powered machine with this funky little head gear.  I thought the whole time they were doing a breathing tube and just wept.  The nurse came over to explain what they were doing but I really didn't hear anything she said.  I know she tried explaining it for me to understand but all I heard was big medical terms and charlie browns teacher talking.  After they finished and I went by him to look, I finally discovered it wasn't a breathing tube but another type of oxygen machine to help put pressure in to open his lungs so he could breathe better.

 We couldn't decide if it was his gladiator helmet or scuba gear ;-).  Gotta get some comic relief in where you can!  If we had some foil to wrap around it, he'd look like a stellar warrior :).

That night lasted forever.

The next morning he was doing so much better on this machine.  His levels were wonderful.  Life was good.  The day went on and we were able to slip out to go shower at a friends house.  We came back refreshed and ready to keep on interceding for our baby boy.

It was a long day but mostly really good.  He was getting breathing treatments and snot sucked out every 3 hours.  A nurse is assigned to him 24 hrs a day to watch and care for him.  I began to really be thankful for ICU.

That night his levels were so good, we got to go back to the pressurized nose tubes.  Then one of the highlights of our week happened.  I got to hold him!  AND feed him a bottle.  It was a fabulous moment.  Better than Christmas.

As it got later in the night, levels began to go up and crazy again.  He was great.  He was not great.  He had to work so hard to eat from a bottle that he got worked up and just could not settle.  The nurse tried holding him to settle him then I took him and tried rocking him.  Nothing worked.  It was almost as though he was hyperventilating.  So they put him back in his bed and went to work to get the gladiator helmet back on.  With that on though he started doing a little better then got worse again.  He was breathing really really hard.  They decided to prepare for a breathing tube.  This time they prepared me for the next step and explained what they would do if it had to happen.  But said not to be concerned, they were just being overly prepared by setting out stuff in case a breathing tube had to be put in.  The dr on call came in and said officially no more feeding him again and hooked his IV back to fluids.  The nurse and respiratory specialist kept thinking they were about to put it in.  The Dr wanted to give him a fighting chance and said wait an hour, just up the oxygen level.  After an hour he had barely improved but the dr said wait a few more hours.  We could tell the nurse didn't think that was the greatest call but of course continued doing the best she could to keep Ezra comfortable and improving.  It was one of the longest nights ever.  By morning his rates were low enough to decide he probably would not get a breathing tube.  Victory!  We were all relieved and proud of our little fighter for hanging in there strong.  They kept testing to make sure no CO2 was getting in his blood and it wasn't.  That morning he was resting peacefully with his head stuff on.  Which that was yesterday morning.

I was exhausted but we were able to slip down to grab starbucks.  I got a double soy latte.  Double double kind of day :).  We went back to our little warrior and the nurse practitioner came in.  She said her main goal of the day was to get him nutrition.  When the dr did his rounds they decided to get a feeding tube in.  Ive been pumping milk as much as I can and haven't been able to produce as much as usual but at least its been something.  I was glad we've been storing it up for this day.  They were able to get in a tiny tiny tube thats would not be very noticeable for him.  He has a monitor on it, slowly feeding him.  This was able to put him even more at ease and comfort his little tummy.  Also give him some nutrition to gain a little strength to keep fighting well.  Then I saw this on someones Facebook page. Thought it was pretty appropriate for our soldier in training :).  We think it'll make him a better runner so he might have a chance at keeping up with his kenyan friends one day.  Just maybe.  Hey, we can dream BIG :).

I also caught this verse on a friends page after she had just shared to pray for Ezra and it brought encouragement too.  Actually many have prayed and declared certain scriptures that were so God's perfect timing.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”  John 16:33

Yesterday he did so so well.  They nurses were impressed to see his drastic change.  Last night he got to once again take the head gear off and go back to pressurized nose tubes.  They got him changed out, vitals taken and diaper changed just in time for my parents to arrive and see him doing so well.  They arrived here about 7 last night to see their youngest grandson (out of 8 grandkids) at peace.  He was WIDE awake too.  The first time all day that he had woken up to bless us with his big sweet eyes.  We all stood and stared at him with smiles on our face.  Then he fell asleep and we went to dinner.  As hard as its been to leave him to go eat or shower, its done wonders for us to regroup to come back stronger for him.  

My parents treated us to a wonderful meal then we came back to find our baby still doing so well.  I then was able to hold him for the first time yesterday.  It was late at night but I was sure thankful to be up and tending to him because it was a good thing, not bad.  

 Miraculously, Bud and I had almost a full nights rest. Amazing what small of space you can sleep in when you're completely wiped out tired.  I woke up once in the night to them doing a breathing treatment and found how well he was doing.  It was the best he's done at night since going into the hospital.  This morning we woke up to find him wide eyed and very content.

So all the nurses and dr.'s said he has made a turn.  FINALLY.  They would say that and then he would crash again.  But we are almost 100% sure he has made a major turn.  In the past couple of days I would post on Facebook what a great turn he had made for the better then hours later he'd go down again and I couldn't go back to say any updates to follow such good news.  But now.  Now is good :).  Which is why I can sit here and finally unload what all has happened here on this bliggity blog of ours.  I hope to read this to Ezra one day and show him what a testimony to God's healing power he was through all of this.

It's been a good morning and we are watching them slowly wean him off this machine and get him on nose tubes that are just normal oxygen without the pressure being forced into his nose.  Hoping tomorrow he will get to that machine and get to transfer out of ICU to our own room back upstairs.  But if it takes a few days, that's ok too.  We are just happy to see him healing so well.  This virus is a mean one and takes quite awhile to recover, especially for tiny babes.  There's a lot of tiny babies here in the ICU with the same thing.  Which is good to know how extremely experienced they are with this.  We remain hopeful in the Lord.  Our God is mighty and faithful to give strength when needed.

We are so very blessed by all the prayers, calls, txts, emails, Facebook comments, voicemails, and visits to see us and pray over Ezra.  He has quite the group of people that love him dearly.  So thankful.  


Sarah said...

I've watched as a dear friend had her little girl in and out of the NICU so many times in her first couple years (she actually spent her ENTIRE first year in the NICU). Hopefully knowing that there is a nurse with tiny man 24/7, you and Bud can get some rest. Praying much for you and tiny man these days - and for C & E as they are away from Little E. Nasal canulas can seem scary, but not compared to a breathing tube! Hang in there, God is BIG!!

With prayer and thanksgiving,

Brenda said...

Just now read all of this amazing story. First I've known of any of it. Delighted to see God's awesome faithfulness to this precious one & his family! Will add him & all of you to our prayer list & trust that he will just keep getting better very quickly. Love y'all!

NeNe said...

This is a great documentary of your days. I'm just amazed, but not surprised at the peace that God has given you through it all. It really is a wonderful gift, he promised it , and he delivers it... I've lived it myself.
I'm so proud of you and know that this story will be a foundation of faith and strength in your walk the rest of your lives. Looking so forward to rejoicing together in the days to come.

Whitney said...

Praying for you my friends!

Mary said...

Wow, Kim. Just wow.
We have been praying for Ezra and all of you HARD!
I am SO glad to hear he has turned a corner. I know this is so hard. Glad to hear you are staying strong in the Lord. Love you all!

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