Wednesday, August 28, 2013


First, we want to thank y'all for all the texts, phone calls,
emails, fb comments 
of encouragement and prayers! 

This was a very scary surgery but 
even more scary if he didn't have it. 

A week ago, Hagan woke up in the morning in tears
complaining about his neck. 
We are still learning Hagan's personality,
so we didn't know what to think about his complaining,
was it really his throat that hurt and he was saying his neck,
or did he just sleep wrong on his neck,
or was it compression of the spine 
that is common for people with Achondroplasia Dwarfism?

We had x-rays taken soon after he got home,
and no compression was seen. 
Feeling confident at that time, we went on with all of his other treatments...

As last week continued, 
Hagan acted more and more tired,
falling asleep at random times,
not being able to hold his head up,
and loosing coordination.
Between our awesome family doc (and her office)
and our doc at Scottish Rite 
we decided an MRI was in order. 

Unfortunately, Scottish Rite was not able to get us in
for an MRI -
so they sent us to Children's Hospital ER.

Hagan and I tucked everyone in bed on Monday night 
and came to Children's. 
Thinking we would be back by breakfast Tuesday morning. 

At about 3am, after more x-rays that didn't show anything,
they told us that they want to do an MRI 
(just what I was asking for all night)
but they don't do MRI's at night -
so we would be admitted to neurology and get on the MRI schedule.

We were in our new room by 6am,
and then in radiology by 7:30am. 
Hagan had to be sedated, and intubated for 2 hour MRI.

We are always nervous when he is sedated due to his 
problems with apnea. 

We waited and waited for the results.
Praying and praying we would make it home to pick up 
the other kids from school. 

Around 1pm we were brought to x-rays for a few more pictures.
My thinking was that the neurologist found something 
and wanted some more information. 
Though we were told, by someone else, the MRI looked good. 

At that point we gave up being able to pick the kids up from school.
Both Hagan and I were so sad. 
He sooo misses his brothers and sisters! 

Around 4pm two doctors came in,
one said, "Let's go over what we have." 
and the other turned the volume from the TV off.
I knew then that it wasn't good. 

As the doctors explained, 
I admit I don't think I heard much of what they said. 
Especially, when they said, 
"Surgery tomorrow morning and y'all will be here for 2-3 days."
I just broke down. 
Even though I knew Hagan needed this surgery -
I hadn't prepared my family for mom to be gone for the week. 
There was still laundry to be done.
I only had meals for a few nights. 
I would have organized school lunches better...
sooooo much I would have done! 

When I asked the doc if had to do it tomorrow,
or could we do it next week?
(not that next week would really be any better - but at least I could prepare -
cause I'm like that.)
He said nicely, "That would not be a good idea, this is very serious." 
 I knew it was, I have had friends whose children have had this surgery,
but I had to ask. 

After talking to Bryan and coming up with a game plan,
I felt much better. 
Now all I needed to do was take care of  Hagan,
and that's easy!
We slept well and snuggled all night. 

This morning my scared little guy was wheeled away from me at 9am. 
Hagan was in prep and surgery for longer then 5 1/2 hours. 
The planned surgery was (in very layman terms) to enlarge the hole 
of the skull where the spinal cord enters the brain. 
The MRI showed that the spinal cord was compressed. 
Doc widened the hole, 
decompressed the spinal cord...
but also had to remove bone that had fused to 
the brain stem. 

I'm telling you - Hagan is a miracle boy! 

We are hoping this surgery will not only relieve the compression but
help his sleep apnea too.

So, tonight we are in ICU. 
Hagan did really well the first few hours,
even had some chicken broth and jell-o for dinner. 

Pain has set in and the fear of having IV's in his 
hand and feet is overwhelming to him.
A CPAP machine is being used tonight to help 
with Hagan's apnea. 
Thinking this is going to a busy night,
with lots of medical visitor in our room. 
Praying Hagan gets the rest he needs to recover. 

Thank you again sooo much to y'all 
for praying for our little man!  


Anonymous said...

Jodi - you all have been through SO much - what a testament to the power of prayer that you & Hagan are doing so well after so much!
Could you ask the Dr. if Hagan could have an HP infusion port inserted? I have one (because when they took out all the lymph glands under my left arm from the Stage 3 melanoma surgery, I got lymphadema which is permanent and can't have any needles in that arm and my other arm has skinny little veins (about the ONLY thing that's skinny on me!!!) that are hard to access. So they gave me a port - it's a little "bulb" like thingy under the skin of my upper chest - they access that for any blood work or if I need infusion of any kind like chemo & it spares me the pain and anxiety of them trying to stick me. Perhaps he is a candidate for this? It has absolutely changed my life - never was too good with blood draws because of the access problems but this is a piece of cake - you can put lidocaine cream on it before they stick you & you don't even feel it! Just a thought! We are praying, praying, praying here - my Mom (your Aunt Jean), me & my hubby Roger, so lots of FL prayers for you guys! Keep looking up - God has a plan in all of this - I can just see Hagan being some famous Dr. someday because of all he's had to go through!
Sending love & hugs......~Faith

Sharon said...

I've been with 3 of my children when they had surgery--nothing this serious, but enough to know it's really hard to have to let your child go through that. Praying.

Dardi said...

Poor buddy...poor mama! Those spinal surgeries are long & scary. The first couple days of recovery for Kemeri were rough (really rough...between pain management & the fact she seemed afraid to go to sleep, wanting to make sure I was there), but then we were over the hump & her recovery was amazing! I hope he finds rest & relief & gets back to himself soon!


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