Doing well =)

After 6 nights in the hospital, we were so glad to get home.  Reed has done well this week.  Sleeping is improving, he wakes up less often but the snoring is just something he will probably always do.
Wednesday was our follow-up appointment and Dr K told us to come back in 6 months. 
We are going to start back with speech therapy soon and can't wait to see the results!

Day 4-5 post op

I'm not sharing all of this because I just love sharing every little detail of our lives.....I'm sharing because 1) I hope it can help another parent with a similar situation and 2) because I will never remember all of this if I don't record it somewhere.
Reed has thrush from the antibiotics.  No wonder these last 2 days have been a painful teary struggle for him. Finally this afternoon he broke down and ate an entire bowl of chicken noodle soup. He kept saying something was in his throat and when he would describe it I knew something was going on. I looked at his tongue and immediately knew what it was. The nurse confirmed and started him on Nystatin.
Nights are tough right now and I'm praying it's just because things are still swollen.  During the night he has been waking up coughing and crying every 45-60 minutes and last night he had a horrible sweat drenched night terror.  He clenched on to me and let out the most frantic cry for about half an hour.
When he finally came out of it, he did not want me to put him down.
Dr K came by today and did not like what he heard so we're staying another night or two to see if his breathing improves.

Important things for us to remember:
Always discuss and give as much detail as we can with Reed days ahead of any procedure and allow him plenty of time to ask questions and get as comfortable as he can with it and know what to expect.  Reed is very detailed oriented and I've found that it has helped in some situations to explain in detail what is going on.  This exact thing happened with the blood pressure cuff, he was terrified. Screaming fit, hiding behind me and pulling away terrified.  I took the time to explain to him exactly what the cuff is doing when it squeezes his arm, showed him what blood veins look like, explained that the heart is pumping the blood through the body....the whole bit worked. He is no longer terrified when he sees a BP cuff!!
Insist that he is with us as soon as he is brought out of anesthesia.  I explained to everyone that Reed is very anxious and is terrified when he wakes from being put under.  Just knowing that they put him back under TWICE to try and get him to calm down breaks my heart.  If I had just been close maybe I could have helped calm him and prevent that from happening.  Another thing that helped contribute to his delirium was the arm restraints (no-nos).  We don't know if he was restrained in the orphanage, but he can not stand to be held down so those things definately added to his anger and fear.

Day 2

We are still in the unit waiting for a room to open up and today was a little better than yesterday. 
With the help of one very creative nurse, Reed had about 4 or 5 spoonfuls of a chocolate milkshake  (we were able to sneak them in after she brought a Wii to our room and let him race dad for a bit)
We've seen lots of sick little ones here and it really makes you wish you could do something to make them all better :(
It's a little after midnight now and I'm in my monitor obsessing watching mode. Every other second I have to look up to see what his numbers are.  We've been moved to another unit today and the nurse hasn't figured out yet that I let every beep and every drop in his oxygen level drive me crazy. It's staying around 96 but it does dip down to 90, 91 when he gets deep in sleep.
Tim and I have been a pretty good team, we take turns sleeping for 2 hours at a time so each of us gets about 4 hrs a night. 
Oh! I just realized it's Mother's Day!!! Happy Mother's Day to my mom, who is an amazing lady with a heart of gold......and Happy Mother's Day to ME, a mom who has been blessed with the most perfect, loving, tender hearted and brave little soul.  I love you Reed Hammond, you are my sunshine!

Day 1

Reed slept most of the day and night thanks to pain meds every 2-3 hrs. Mom and dad slept in shifts 4 hr each :). Doc checked in and said we need to stay in the unit another night since he's still on oxygen. Praying he can tolerate some liquids by mouth today but he has been a trooper. Can't wait for my little man to feel like himself again!

Update:

Today turned out to be a pretty good day.  He's still not drinking anything, but he gave us a big smile when we were able to unhook all the monitors and go downstairs long enough to visit with Elmo.  He even had his picture made with Elmo, what a nice suprise that was!! 

Still taking pain meds but not as often.  Praying tomorrow he can start drinking liquids and work our way into some soft foods in the next couple of days.  48 hours with nothing to eat or drink is making Mama nervous!!!

Surgery day

Surgery went well, waking up not so much.  They had to put him under twice in the recovery room as an attempt level out his vitals and help his delirium.  "Emergence delirium" = restless or irritable wake up,   Reed always has a horrible time coming out of anesthesia.  Today was the worst yet.  He spent 2.5 hrs in recovery before calming enough to go to the unit.  Around 5 pm he finally woke up enough to empty his bladder.  He is resting well on pain meds now and his oxygen levels are holding steady so the nurse is hoping tomorrow we can move to the floor.

4 AM

We made a last minute decision to drive to Nashville and spend the night since we have to be at the hospital at 6.  Our first choice for hotel was booked, so we stayed at one of those older name hotels that are known for cheap rates.  I discovered last night that I'm borderline germaphobe.  The room had that smell of deodorizer and the carpet had visible vaccum marks.....but I could just feel the germs crawling around.  I kept shoes on my feet anytime they touched the floor and slept (for 2 whole hours) on top of the covers in my clothes to avoid the bed bugs.  Don't say it, I know!
Thanks so much for all the prayers for Reed.  Please pray this morning that surgery goes well, he wakes with fear and anxiety removed and that there are no complications. The next few months are going to be a challenge but we're backed by the most wonderful God, family and friends.  We love you!!

Here we go again

Reed is scheduled for p-flap surgery (pharyngeal) on Thursday of this week.  I have been a basket case all week and saw this picture today that put put a smile on my face..........  nothing we will ever endure will be too much for Him, God's got this!  Have a blessed week everyone

Growing pains

Reed is growing so fast he gets cramps in his feet and legs at night. I do whatever I can to ease his pain.....rub his feet and legs, put him in a warm bath, give him some advil and reassure him that he will feel better soon. In 9 months he has grown 2 1/4".

Last night I was up till after 2 am. Just one of those nights that I couldn't clear my mind long enough to fall asleep. I was thinking about how life has growing pains. Things that can cause pain or scars but the important thing is that we grow from them. God doesn't expect us to be perfect, we will always have certain feelings throughout our life because we are human. As we mature they may be less frequent..... but we will always have human feelings. Our reaction to those feelings will determine our healing time and help us to grow through life's pains.

Rain

Hard rain, wind and so much water on the road that I can't see the lines......so, I sit on the side of the road in my dark car (blogging on my iphone) while I wait for the storm to pass.
Wow, this makes me think about the storms of life and how sometimes they are so strong that we can't seem to find our way. Instead of struggling through the storm, fighting the darkness, wind and rain; what if we give God total control of the situation and trust that the storm will come to an end. How much sooner would the storm pass?

So tonight I pray that I can give Him all my anxiety and concerns that I have for Reed's next surgery. I pray we make the right decision about which surgeon and facility to use, and which procedure to go with. *Sigh* It's not easy but I have to stop the needless worry.

"It's arrogant to worry when God knows what He's doing. He has a plan for you"
from A Time To Love by Barbara Cameron

Do It Yourself-ers

After hibernating all winter we're usually ready for a new project around the house. This is still a work in progress, but here's what we have done so far.....

Before:

After:


We still have alot to do; paint, backsplash and replace the sink and faucet but I'm pleased with the way the cabints turned out! If you're feeling up to the task we used Rustoleum Cabinet Transformations in Expresso :)