Denied

Well, the insurance company has denied approval for nasal surgery.  Reed is still struggling to breathe at night and we are very concerned.  The reason for denial is that their studies show sleep apnea is not improved through surgery.  I do feel it is more complicated than that since Reed's septum is pushed to one side and the turbinate is large.  Both of these factors make it impossible for him to get enough air during sleep......praying and believing God will help us work it out, I've cried all I can cry!!

Medical update

Reed has been having difficulty breathing since the p-flap surgery in May.
We've been back to the plastic surgeon and to an ENT.  Right now we have 2 separate issues that are causing nasal airway obstruction.  His ports are small and Dr K wants to go back in and open them up- the tricky part is opening enough to improve the airway without losing the purpose of the flap.  He also has a deviated septum and turbinate blocking one nostril.
We have a sleep study scheduled for tomorrow night to see how bad his sleep apnea is at this point, and to give us something to compare before and after the next surgery.

God is good and He has a great plan for Reed.  Oh what a story he will tell someday!!
One bump at a time, we will keep traveling down this road and learning as we go :)

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

Daddy with a "D"

Reed has been trying so hard to pay attention to his speech and pronounce his words better. He does get frustrated when I correct him too much but I'm thanking Jesus that one day he will be speaking with ease and clarity!

Today I called to check on him after his speech session and he said "mama, guess what I can say.....Da-dee!!!" For three years it has been "aah-eee" He completely drops the first letter of any word that begins with D, T, Th, G, J, Q. We still have a long way to go, but progress IS being made. Each time he says daddy we will have to stop and concentrate on the letters, but he CAN do it!!!

Why is his mouth crooked?

crook·ed   
–adjective
1.not straight; bending; curved: a crooked path.
2.askew; awry: The picture on the wall seems to be crooked.
3.deformed: a man with a crooked back.
4.not straightforward; dishonest.
5.bent and often raised or moved to one side, as a finger or neck.
6.(of a coin) polygonal: a crooked sixpence.

This is the question I was faced with as I held Reed in my lap for children's church on Sunday. He's still not comfortable in church without mama but he is doing great with preschool. He asks in the mornings if he is going to "Ms Nikki's". The first couple weeks were very hard and we cut him back to 3 days a week, but he seems to enjoy going now.
So- how would you answer this question? I feel like I let him down because it caught me off guard (always does) and I simply said "he had surgery" and I FELT EMBARRASSED. Why? Why in the world would I feel this way, and why was I not expecting that kind of question?

Before and after

Everyone wants to talk about the flowers, puppies and ladybugs but not many people want to share the anxiety, tears and helplessness that can be felt as a parent.
We chose to adopt through the special need program because we felt God's calling. Yes, we researched cleft lip and palate and read about the surgeries required to correct the cleft. No, we were not prepared to see our child turn into a different person. Don't get me wrong, he's still the same sweet boy that I fell in love with- he's just in pain and scared and confused. He is eating and drinking very little, not communicating and withdrawn.
One mistake we've made early on is being overly concerned about him not eating/drinking enough and making it too stressful for him (and all of us). A very dear friend (thank you April) reminded me tonight that Reed has been through so much and does not understand what has happened, or why. Our job is to love him, to keep our cool at all times and to reassure him that he has done nothing wrong and that we did not cause him to be in this pain.
The whole process of adoption is an emotional and traumatizing experience for a child. We must make sure he feels safe and loved and not insecure, angry or confused. Use whatever support network you have. We are fortunate to have friends, family and a church that loves us and offers advice or help when needed. Don't be afraid to ask for help when you need it!!


Please don't scroll down if you would rather not see the palate repair. I hope there is someone out there that can learn from what we've experienced so far. I know it's still early and there is a lot of healing left to do but I'm amazed at the difference. Every day I wonder what we did to deserve such a blessing. I am so thankful for our beautiful son, he brings so much joy to our home.



BEFORE:

AFTER: (yes, that's scrambled eggs from a couple of days ago smushed in the packing-- any ideas on how to clean it out??)



Counting my blessings,
Tina

Food fights

We came home on Friday after spending 2 nights at the hospital. Nights have been hard; he cries and cries and will not let me put him down. What little sleep he gets is in my lap. I believe he is still trying to get used to breathing through his new airway and wakes up several times a night coughing and trying to catch is breath.
We've also had a hard time getting Reed to eat and were making some good strides until tonight. Each day has been a fight just to get him to eat anything. Today he woke up and had pancakes for breakfast, lunch was a struggle but he finally had some bites of applesauce, cream potatoes and peas. We were eating dinner and he started to cry. We checked his mouth and he has pieces of food stuck in the packing that is on both sides of his palate. Poor baby. He just cried and cried and would not drink or eat another bite.
This has been so hard. It hurts me to see him in pain and I can't wait until he is pain free. When I think about everything we've been through up until this point, I know that we are very blessed and I know that the Lord will continue to see us through these challenges.
One thing I was not prepared for is hearing the change in Reed's voice. He is very nasally sounding and does not say some words as clear as he did before- it was amazing how many words he could say with the cleft.
I pray that someday he will understand how much we love him and how much we want him to be happy and healthy.

Surgery update

Here's a quick update for all my bloggie buddies :)
We arrived at the hospital at 7 am and they took Reed (crying for mama) at 8:30. The whole time we were waiting he was very unhappy and clenched on to me. I guess after the last hospital stay he has had all he wants of this place.
Around 12:15 the surgeon came out to tell us the palate repair was not at all a breeze (he has told us several times that Reed's cleft was very wide and would not be an easy repair) but that it went well. He also gave us a memento- a rather large tooth that had to be pulled because of the placement.
He still will not eat or drink anything, and has not had a wet diaper yet so we're very concerned. Please keep praying that his kidneys wake up soon and that the pain meds keep his pain under control.

Home Sweet Home !

The grass is high, the dogs are hungry, and the cat is mad. We're finally home and glad to be here!
I'm not 100% satisfied with the answers we received but we were told that the infection was caused by bacteria that is normally found in your mouth. The diagnosis was cellulitis which does not make sense to me at all but we're home with another week of antibiotics.
7/5, waiting for surgery:
7/6, after surgery7/8, resting
did someone say I can get out of here??

Still here

Reed seems to feel better and is ready for new scenery. We're waiting on lab results from the surgery to make sure the antibiotics are right. I'm ready to go home but I'd rather stay here until we can be sure that things are under control and there is no more infection.
Thanks for all the emails and phone calls, keeping in touch with everyone has helped us get through this!

Update

Reed is resting and we are hoping to be released in 24-36 hours. I made a trip to the hospital across the street last night and found out that I have a staph infection. I've been taking antibiotics for a few days for an infected spot on my left leg. It has gotten worse so I went over the the ER at 3 am while Reed and Tim were sleeping.
No matter how bad you feel or think your situation is; there is always someone with greater suffering. I haven't seen many children in the hospital because we've not been able to leave our room but I know there are many children and parents here with more serious health issues.
God has been so good to us and He is my strength. Have a blessed Monday!

Long day

Today has been a very long day. Reed was finally taken to surgery at 4:00 pm and was out of recovery and back in the room by 6:00. Dr R believes his body was rejecting the stitches and therefore created the infection. He said that this is very rare, 1 out of 400 cases. They had to open his lip and remove the stitches. He has gauze in the opening and this should come out in a day or so. No one knows how this will look when it heals but I'm only concerned about him getting well and not how he will look when this is over.

He is doing good now, eating jello and drinking juice.

God is good!

Surgery in the AM

We're back at Children's and Reed is scheduled for surgery in the morning (few hours from now). He just finally went to sleep a few minutes ago and has had a very hard night. We got here around 9:00 and they got us into a room in the ER pretty quick, but it took over an hour (and 3 people) to get his IV in. After he calmed down and we got settled into our room upstairs, we put in a movie and I held him until he was asleep. As I was putting him in bed I noticed a spot of blood on his hospital gown and Tim quickly turned on the light. His lip had ruptured and started to drain and his poor little mouth was covered with infection. We called the nurse and cleaned him up (as you can imagine this was painful). A little while later the Dr came back in to tell us the plan for tomorrow and also took 2 samples of the infection to send to the lab (I had to leave the room for this, a mama can only handle so much).
Please pray everything goes well tomorrow and that they are able to clean out all of the infection and close the wound.
Leaning on Him,
Tina

Happy Independence Day

I hope everyone has a great 4th and remembers to thank a solider today for our freedom~!

I'm very concerned about Reed's infection, it seems to be getting worse and not better. I'm going to wait until tomorrow and see how things look before making a decision about going back to the hospital.