Friday Eve.

Hello Friends and Family,
Well another late night of blogging and just wanted to let you all know that Hayden got his stitches out from around his tummy tube and got an adjustment on his headgear for tongue swelling. Although it was a busy day Hayden has had a good one.

Papa is now back in GA and missing his boys and we miss him already, but he is so ready to get back to work. We hope you all enjoyed the pictures we sent of our tour of duty mission site. We hope to send more later. I just wanted to let you all know we still as of this day do not know about future surgery. Will keep you posted. Hayden is suppose to get a call Monday from neuro surgeon's office to let us know when we have an appt. to see him for f/u. Hopefully we will get more insight for future of where we will be. Please pray we and the Drs. make the right decision regarding this surgery since the holidays are upon us.

Thanks again for all the prayers.........

Still Praising Him for His Love, Mercy and Grace,
Mimi

From Hayden and Mimi

Hello everyone,
This note if from Hayden: I love you all very much. Thank you for praying.

Love,
Hayden

Hello all,
I started posting and Hayden came over and wanted to post something also. He continues to work on pulling his tongue in and keeping it in for small periods of time. When he went to orthodontist today they made a headgear piece of equipment to wear to help pull tongue in and keep it there without him having to work so hard. We are trying to help those muscles gain more strength to keep his tongue inside of mouth.

It is 11:07 pm and here I am posting again late at night it seems there are not enough hours in the day to get it all done. Well Papa has been here for a while and he will be leaving on Friday early so he can get back to work. We appreciate our church family to allow him the time to be with us at this very trying time with our family. God has allowed us to go through this for a reason and we feel we have been blessed by being half way through this tour of duty and Hayden is continueing to improve with his tongue issue. We are very thankful for all He is doing to heal Hayden. God has allowed us to minister to other parents, and nurses and staff while we have been here and many have told us that they have been touched by Hayden's sweet spirit, and I believe God is using this for His glory. Thank you for all ministering to us and lifting us up with your prayers. We are so grateful for our church families and friends who continue to hang in there with us.

Dave's nephew and his wife have come to visit us for the day and it is good to see some familar faces. They are getting ready to go to their room so I will close for now so we can have prayer.
Please pray for safe travel for return home for Jena and Brian their earthly home in Nashville and Terry in Georgia. Until next time.....

We are Still Praising Him,
Mimi and Hayden

Tues-eve

Hello everyone,
We have enjoyed a day of just not doing anything and still it is late at night to be posting. Everyone is still up and going strong except Mimi and she is fading fast. Mason is like the energizer bunny, he just keeps on going. Hayden is also getting a little tired but he still does not want to go to bed, but it is time.

Hayden and Mom and Dad are going to the Orthodontist on Wed sometime to get some kind of guard to help keep tongue in mouth and protect it from the teeth, which we hope will strengthen up his muscles in the tongue to be able to pull it back in so we can get him to swallowing and eating with us and that trach out. We will see how that goes. So please pray.

We are enjoying all being together for a little while. Will keep in touch on Wed to let you know of any other appts. that will be done this week. Thanks again for all the comments and prayers. We love to receive greetings from home, we are really missing everyone.

Still praising Him for His continued goodness,
Mimi

At Hotel

Hello Family and Friends,

Yes we are finally at the hotel. Hayden was soooooooo happy to leave the hospital I believe he would have walked if the car was not starting. (we are having some battery problems) Any ways they got to hotel and he and brother have just been loving on each other all day. One would pick on the other and each just grinning and laughing and we could hardly hold back the tears watching them. They love each other so which is as is should be. Well about Hayden, Mom and Dad are doing their trach care, feedings, mouth care and now we are all trying to wind down from a busy day. Hayden has had a good day today and we are looking forward to more days like this one.

Mason is having a melt down and the men are watching the ball game so you know what that means. I must close for now. Thanks again for all your prayers.

Still Praising Him,
Mimi

Yeh!!!!!! Hurray!!!!

Hello family and friends,
Wanted to let you all know that as of this pm Hayden we hope is going to get to leave hospital on Monday. We are all looking forward to a little time away, but I believe Hayden is the most excited about it coming to the hotel. Even if we can not come to Tn home this will have to do until Dr. Al-Mefty says it will be more surgery or God chooses to heal the rest and when they do another MRI it will all be gone. We continue to see His hand in all that has transpired in the last 5 weeks even though it on some days feels like it is never ending with problems. We know God has a plan and He will reveal it in His time.

Hayden has had a good day today. He seems to get really tired by the middle of the afternoon. That sounds like Mimi these days. I have been over joyed to see him progress with his walking and playing so well and his right side to have good strength in it so far. His tongue is still outside his mouth but hopefully when he gets out of the hospital he will be more relaxed and it will continue to go down and then he will be able to eat, drink and be a little more happy. Mom and Dad will have a great responsibility tending to feedings and trach care and g-tube care. So please pray that all will go well without problems. We all are so ready to be through with our home away from home (hotel), we miss our humble homes in Tn and Ga and most of all our church, families and friends.

We again want to tell you all how much it has meant to us receiving the cards, comments, and support you have shown to us through this journey. It has on many occassions lifted us out of some major down days. We love you and appreciated you all. We do not know what will transpire in the days to come as to when the next surgery will take place but we will let you know via blog. We are still going to post on daily basis hopefully so please continue to send comments. Thanks again.

Still Praising Him for His faithfulness,
Mimi

from Hayden

. hi everyone,



This is HAyden! !mimi and mama are letting me write. I am feeling better today. I might get to go to the hotel and I am very happy about that good news. Thanks for all prayers for me.



I love all of you,

Hayden



Hello everyone,

Hayden wanted to write on the computer today and let everyone know how much he appreciated all the cards and goodies being sent to him in the mail. As of today we are scheduled to leave here (hospital) and stay at the hotel on Monday. So pray that Mom and Dad will learn all that needs to be learned in regards to trach cpr and care and feedings with the machines and extra nourishment that has to be mixed. I will be talking to ya later today I h0pe.Must close for now Hayden wants to watch sprout on the computer.



Still praising Him,

Mimi

Making Progress

Good evening everyone.

Hayden had a really good day today. He had some visitors, Memaw, cousin Kim and her husband Allen. His face lit up seeing someone different besides us and 50 million doctors, nurses, PT etc. that come through the door to his room. He's really smart though he will want to go walking to gift shop or play areas just about all the time, I think I've figured him out, he thinks if I'm out of my room they can't find me to do anything else to me. Smart kid thank you very much he is my child. HAHA!!! :) Papa and Daddy are staying with him tonight so I can try to rest. We hope that in a few days they will discharge us to a hotel. WE are BEYOND ready to be home but the hotel will have to do. At least we can all be together. Mason said all day today I miss Hayden! Pray that we will all be together soon. Pray for his tongue to continue to improve. We have a dentist involved and we talked about his tongue being pretty stretched and out of the mouth for so long, so he suggested putting a compression dressing around under his chin and wrap around his head. We will try to put the tongue inside his mouth as much as possible and this dressing on to help his jaw and tongue relax. Pray that this works. Hayden has been a real champ but he is ready for this to be over.

I, as Mom have had better days this week. I'm very thankful. This is in no way about me but Hayden. I love him so much that when your children hurt you hurt. The bad part is I have not been able to fix this. God certainly is teaching me patience and that I'm not in control! I once again just need to let GOD be GOD and as for me just keep on loving and nurturing Hayden. God is certainly in the details but I usually give it up to Him only to quickly take it back. Well....we will keep you guys posted. Thank you does not seem adequate enough for every prayer, card and monetary support that we've had but truly we say thanks!! Keep loving on us, it does get awfully lonely here......

Christy

Update-Thursday night

Hello Family and Friends,
I know it has been a long day waiting on an update from us but I have just now had the time to give it to you. Here's the scoop......Hayden did well with the surgery today and the ENT dr looked at the site where the brain tumor was removed and it has not changed from last time. Not any better or not any worse those were the words I believed he quoted. So Hayden now has tummy tube for feedings and no more nose tube in and incision has not healed as of yet and still has trach. Tongue is still swollen out side of mouth and is very uncomfortable for him. So please continue to pray for the swelling to go down and incision from tumor removal to heal correctly with no infections.

Dave's Mom came over today with his neice and her husband so that was a great surprise for all of us, and she brought us a home cooked meal which are few and far between here because of schedules and lack of cook ware. But we need to loose a few pounds anyways. HaHa!!!!!

We continue to see God's hand in Hayden's healing and we are looking forward to seeing the light at the end of this tunnel and the end of this tour of duty with this chordoma. We are so thankful for family and friends who lift us up daily for peace and comfort from your prayers on our behalf. Thank you for being there for us.

Still praising Him for His faithfulness,
Mimi

Hello

Hello Friends and Family,
Just wanted to let you know that the G tube was suppose to be put in on Wed. but was not because Hayden had a lot of secretions and was coughing a lot yesterday. I did not get home from hospital until 11:30 pm last night and I'm sorry but I was to tired to post. But the tube was to be put in at 7:30 am this morning but as of yet because of an emergency surgery has been put off for 2 more hours. Hayden got some rest last night and I believe Mom and Dad did also. Please pray that all goes well this am. I'm here at the motel with Mason, he just woke up and is ill this morning so I will post later and let all know about g=tube surgery and incision update as they are suppose to look at that while he is under sedation to see if it is closing now.

Thanks for all the prayers.


Still Praising Him for His goodness,
Mimi

Hello from Little Rock

Hello Family and Friends,
Just a short update Hayden had a good night last night and Mom and Dad I think got some much needed rest. Mimi will trade off with Mom tonight and stay at the hospital with Hayden and Dad and Mom and Mason will be at the hotel. We are facing another procedure on Wed. to put G tube in tummy so please pray it will go well and Hayden will be able to tolerate the feedings thru this tube. It is administered a little differently from the nose tummy tube.

Hayden does not want to stay in the hospital room he is so ready to be out of that place. We are expecting to maybe get to get out of hospital for a few days to let swelling of tongue go down and then we will have to be back for the next surgery. Most likely family will have to stay close by because of trach and feeding tube plus the incision not healing so it's doubtful that we will leave Little Rock. But at least it will be a change for Mom and Dad and Hayden from beeping machines and being awakened by nurses and techs for bp's and medication being taken. It will be a little scary coming out with a trach and feeding tube because we've never had to deal with a trach before now. (Cleaning etc. not to mention blockages that can occur) But life is about always learning something new and different.

Papa and Jeremy got back here on Sunday and we were sure glad to have some re-enforcements to help with Mason. He seems to be tired of listening to Mimi all the time. Which means he has been a typical 2 yr. old. Wide open, mouthy, and very strong willed not to mention hard headed. When Papa came to the hospital he brought prizes for Hayden and Mason from Ms. Sandra and I wish you could have seen the smiles he had opening all of the prizes Ms. Sandra sent. He loves getting mail and that always puts smiles on his face. Thanks Ms. Sandra.

Well I must close for now and get back to hospital. Will post later.
God has been so faithful through out this ordeal and we are very thankful for His blessings, for rest and healing. We are so grateful to all who are praying and phone calls, cards, comments and support. Thanks again.

Still praising Him for His goodness,
Mimi

Update-Monday-10-20

Hello All,
We have completed the surgery on the tongue today about 1:30 PM. Hayden seems to be doing well at this point. Dr. Sun who did the closing of the brain tumor removal also did the surgery today. While he was doing surgery today he looked at the incision from the previous surgery in Hayden's mouth and saw that it still is not healing like it should because of the feeding tube rubbing on the back of throat and also he said Hayden needed more nourishment for healing and he has had to be on steroids for swelling of tongue which is not helping the situation. So we will be having another surgery for a feeding tube on Wed. This one will be put in tummy. So needless to say we are very concerned about now having a trach and g tube for feeding. Hayden has been a superman thru all of this so far but every time the door opens to his room he tenses up big time. I am sending some more prayer requests:

1)Tongue will heal with no problems.
2)Mom and Dad, Hayden will get some rest.
3)Surgery for feeding tube will go well with no problems
4)Direction for future surgery of total removal and stablelization for Drs and Mom and Dad.

Some of you have had problems posting and I hope this will go through so you will know what is going on with us here in Little Rock. I'm sorry for the problem with the site. Hope this will fix problem. Thanks for all the prayers and cards and financial support. Please continue with your comments we love reading them because they make us feel like you're here with us giving special hugs. So thanks again......

Still praising Him,
Mimi

Technical difficulties with my last post. It's late; will try again later.

Hey everyone, it's Christy. It's Saturday afternoon and I am back at the hospital watching my precious baby take a nap. I went to the hotel last night with Mason for some much needed rest and some special time with Mason. This is the first night since Hayden has been in the hospital

Sleepless in Little Rock

Hello All,
Well I finally got to get back to the blog and update you all. I'm sure you all have heard of Sleepless in Seattle well this is called sleepless in Little Rock. Daddy has taken a break with Mason and gone to the hotel to eat and sleep- a nap anyways. Mom and Hayden are a sleep and I figured I would keep watch and let Mom get some much needed rest while I update the blog.

Hayden's tongue continues to be a problem and he grows very frustrated when trying to talk to tell us about what he wants etc. He had PT this am and he did absolutely wonderful. Playing basketball, walking, painting, hockey etc. So we are excited about that, now is we can just get this swelling to go down and be able to see if swallowing is ok so he can get trach out and eat real food. He ask for ice cream earlier and it just broke my heart ( an Moms) to watch Mom have to tell him no. Morale is getting a little low as we are approaching a 1 month stint with this tour of duty with this surgery knowing that we have to return one more time and not sure of what the future holds. I feel God has given me a peace about the outcome.At times when I try to relay to Mom who is really struggleing watching her baby struggle so, I allow satan to get me down to and so I am weak relaying God's faithfulness and His already abundant healing thus far and His promise to complete what He has started.

So here are prayer concerns:
1) Hayden's tongue-no more swelling
2)Rest and peace for Mom and Dad, Hayden and family
3) Give us calmness to try and figure out what Hayden is trying to tell us because of swelling in tongue and clear vision so we will know w/o frustrating him even more because we cannot understand speech.
4)All blood work comes back clear with no problems, no more set backs. (I hate to ask you to pray for this but it has become a problem) Hayden will urinate(peepee) on a regular basis. He seems to be holding this and not wanting to go and there is not infection there so we need water works to happen.
5) Hayden's energy level to come up a little, he seems really tired.
6) Upcoming surgery. Wisdom for parents and Drs.

To our family and friends, thank you again for the many prayers being lifted up on Hayden's behalf. I would however like to add one more prayer request. My Mom (Betty Cart has been in hospital with pneumonia and is now at home) pray for continued healing of her lungs and energy to return.

We love you all,


Still Praising Him for His Faithfulness,
Mime

Endless days.

Oh how Christy and I and most definitely Hayden long to be out of this place. It just seems never ending and frustrating with all the tongue swelling, needle sticks, suctioning, communication barrier with Hayden, upcoming surgery, and the daily routine that goes on with a patient. There is a little humor, last night Hayden tried so hard not to get a urinary cath that he pointed to some shampoo and wanted me to put it in the jug to make it looked like he did it, unfortunately it didn't work. I'm tired of being here but that is my selfishness coming out, then I look across the room and see a little boy having to go through all the physical pain and that humbles me to no end. I'm so proud of Hayden, he has endured all this pain like a champ, and I know God has a special plan in his life and this journey that we are on. What also humbles me is all the support that we have ,I couldn't imagine going through this alone without God and his people, this I'm forever thankful. All I can say is that God is good all the time.

May God Bless You All,
David

Update 10/14/08

Hello everyone! I wanted to give an update with the info. that I have thus far. Hayden has had a rough day. He is not producing fluid so they put in another IV. They are also giving him Lasik to produce some fluids. Hayden is definitely having another surgery as early as next week to try to remove the rest of the tumor. He will also have the stabilization surgery at the same time. The dr.'s from Arkansas and Boston have made these decisions feeling it's in Hayden's best interest. They do not feel the proton beam is useful at this point. Our family is being tested yet again. Please pray for Hayden. Also pray that our family can continue to handle the obstacles that we face daily.

Thank you for all the the continued support and prayers!!

Sincerely,
Aunt B

Update-Monday

Hi Folks,

Just wanted to update you on progress.....Hayden is really doing well over all. Last night Mimi stayed at hospital because Hayden had a big piece of tissue from tongue that was gaging him and we had to call ENT Dr. to come and remove this hunk of tisssue which he did. Hayden is having some major problems with medication withdrawals so I would like to give you some more prayer requests:

1)Pray that the Drs. can get meds regulated so Hayden can rest and not have the highs and lows and major meltdowns from withdrawals.
2)Hayden's tongue is still a problem.. Please pray that the swelling will subside and we will soon be able to get a swallow study done and all will be well and then we can get this trach out..
3)Christy and Dave spoke with Dr. Al-Mefty and he is going to talk with the Boston Dr. and see if they would be able to use the proton beam to get the rest of the tumor out. Which would mean another trip to Boston soon but it would also mean no more surgerys. Dr. Al-Mefty did not think that they needed to do stablelization sugery because he did not compromise any of the bone with the last surgery. But if he has to go back in and remove the rest of tumor he would have to stablelize the neck. So pray that the Drs will have clear vision on next step and we have a peace about the outcome whether it be surgery or proton beam.
4) Pray for rest for all....we are getting very tired of some of these things we are watching our little man go through.

But Praise God we are seeing Hayden in other ways like walking to progress in a positive way. God's always faithful to give us blessings when we feel low and He shows us His goodness when we trust Him with everything that is precious to us. And being the control freak I am God is teaching me that He and only He is in control.

Must close for now our little man is moving around again. Thanks again for all your prayers and word of encouragement and financial support. We love you all for taking time to pray and go on this roller coaster ride of a journey with us supporting us with your love. Thanks again.

Still Praising Him,
Mimi

Oh My Goodness

I just had to be the first to break the news!!! Hallelujah!!!! Hayden walked!!! He was outside with MiMi and he pointed at his feet. Mom and the nurses finally figured out he wanted to walk. I'm so proud of my Superman!!! He got right out of that chair with support of his Mimi and a nurse. I also got to speak with him on the phone and tell him I love him. Well Mimi was overwhelmed with Hayden so I didn't get much medical update. I'm sure someone will post that later!!

Thanks for the continued support and keep the prayers coming!!!!

Oh Happy Day,
Aunt B

Improving day by day.

Today is day 10 post surgery and Hayden is improving day by day. We are going to be moved out of the picu to a regular room. Today they changed his trach this is a standard procedure 5 days post the first trach, they do this to keep from forming a pocket around the first trach. We are hoping to hear from Dr. Al-Mefty today to get an idea when he wants to do the next procedure, we are praying all he has to do is fuse his neck. Hayden is getting back to his self we pray that all the adjustments he has to make will not frustrate him. We are going outside today for a little while and Mason will get to see Hayden for the first time since surgery. We are blessed by all the prayers and we are forever thankful.

May God Bless You All,
David

Hospital visit Thurs.

Hi Folks,
Poppa and Mimi are here at hospital with Hayden and Mom and Dad are resting with Mason we hope. Mason is getting a little tired of being in the motel day in and day out. Apparently Mason threw a fit when he went back with Momma and daddy and did not want to go to nap time so Daddy had to take him to the park. We'll see how that rent later.....I 'm not expecting them back before 9:00 PM tonight.

Now for update on Hayden....he has continued to hold his own w/o vent, but still getting low oxygen. His tongue seems to be a big issue right now because it is still swollen and his teeth keep cutting into it which is causing a problem with swelling. They (nurses)have tried to protect tongue from teeth by using gauge to wrap tongue. They also massage the tongue to help swelling to go down so it will not protrude from his mouth. So keep praying on that issue please. Hayden is still in a zone when you talk to him because of the meds but all in all he is progressing well. The PT came in this AM to get him moving and he kicked the ball with his legs and moved hands over his head. He is still not able to get up out of bed yet. Momma was pitching the ball and she accidently hit his nose and she said he actually had a small grin. So I was excited to hear about that although I'm jealous because I have not seen any emotions from him yet but it will come and I can't wait. God is faithful!!!!!

Poppa will be leaving sometime in the next couple of days and I'm still not sure whether I'm staying or going with him. Wherever I am Mason will be with me. Please pray for travel mercies on that issue. Poppa really needs to get back to work, even though we do not know when Dr. Al-Mefty will do the next surgery.We do however know it will be in the coming weeks .So please pray for Hayden's strength and quick recovery of this one and complete removal of rest of tumor and there will be not set backs with the next and hopefully the last. I will sign off for now. Thanks again for all the prayers.

Still Praising Him,
Mimi

Update-Wednesday

Hi Folks,



I am here with my main man at the hospital while we send Mom and Dad home with Mason for a little nap and some play time with little brother bear. When Poppa and Mimi left the hotel right before we left Mason threw his pacifier way off somewhere and when it hits it rolls forever. So needless to say we did not find it before we left the hotel. We have several backups but we are trying to get him away from having one anyways. So Mimi told him it was gone because he threw it away himself, so we will see how long that lasts.

Anyways back to my main man....Hayden looks good today. He is off the vent !!!!! Praise God for His blessings. Hayden is however on a little oxygen today to help him with his levels. His tongue swelling has improved greatly, the swelling has subsided enough that it at least is not outside of his mouth. However he still has some swelling and his tongue is sloughing off some dead skin cells and drs. say this is normal, given the trauma the tongue was under during surgery. We are very thankful for some improvements instead of set backs. Here are some prayer requests:

1)tongue will continue to shrink from swelling, and he will be able to swallow correctly.

2) Hayden will tolerate the transition from sedatives to none.(he is now on methodone to help with withdrawals from morphine)

3)He will gain enough strength to be able to walk. They will be getting him up sometime on Sat. or Sunday. His little leg muscles are very tight from laying in this bed and where the tumor was putting pressure on brain stem he was loosing the ability on his right side. Physical therapy has been coming in to work on loosening up those muscles and we are working on that to as we have before surgery.

4)Give Poppa and Mimi direction and peace on leaving here and getting back to GA for a little while so Poppa can work. (Mimi will have Mason where ever she is)


I cannot say enough thank you's for all the cards, comments on this blog, financial support and prayers being lifted on our familys behalf. You all are so loved and you make us feel hugged and loved by your words of encouragement even when you are not able to be here with us watching this journey unfold. Thank you for again for all your prayers .We truly are feeling a peace that can only come from one source and that is what has gotten us through this far and He will be faithful to complete it for His glory. It is our prayer that we be diligent to let people see that this has been a journey that only God could bring us through or anyone else and we want others to see His faithfulness to us.

Still praising Him,
Mimi

Hospital

Hey Everyone,

This is Poppa sending his first ever blog out. It's Tuesday afternoon and Mimi and Poppa are staying with Hayden while Mom and Dad take the afternoon to rest.
Hayden is currently on a low volume of respirator air and they plan to switch him to full self support this evening. This is a second shot at trying to wean him away from the vent. He is still on a small dose of sedative type medicine which makes him a little sleepy. Thus, he forgets to take deep breaths. It is a trial and error type of effort so it will take a little time. I don't think he has much pain. For that I am very grateful!!
I've had a thought that has rattled around in my head since last Tuesday. Hayden asked Mom if the surgery was going to hurt. That's a tough question to answer!
It made me think about life and so often I ask God...Is it gonna hurt? Sometimes, life hurts...a lot! PAIN MANAGEMENT CAN ONLY BE FOUND IN ONE PLACE! God is our only sorce to carry our hurt. I can safely say that lately I've hurt a lot!! And I can most assuredly tell you that the Great Physician has eased my pain...all of our pain as a family has been so powerfully managed. If anyone ever tells you that doubts and fear won't come, they are only fooling themselves. But as surely as they come, He provides the help!
Thank you for praying for us. You provide a cover for us to keep the wicked one at bay. Keep it up. Your prayers on our behalf are being heard by our Lord and He responds to the prayers of the people!! We love you all so much!

Poppa (Terry)

What Blessings

Praise the Lord, surgery went well yesterday. Hayden rested for the most part great last night. I finally fell asleep and was up around 1:30 and then at 4:00 I awoke to Hayden trying to get out of the bed. He had pulled his right hand out of his restraint(which is wonderful because that was the weak hand) and was leaning over to the left side of the bed. He is ready to blow this joint! Can you blame him?? I have stayed up since then to make sure he did not do it again. He is doing well with they trach, it feels funny to him so he has pointedto it alot and tried to grab it. The docs thonk this ids temporary please continue to pray for healing. They said that we would not really be able to hear is voice for a while until he learned to manipulate the trach. Well, I heard his voice yesterday it was weak but I heard it just a couple of hours after surgery. This morning He held out his hand and said Momma. How proud my heart was! I told him how proud we are of him and that he can do this.
This again has been some very tough times; but what a friend we have in Jesus that I can cast my cares upon him and he will carry me through!

Christy

Another surgery so soon!

Good Morning,

Hayden has had a good night they increased his pain med because he was restless yesterday and moving alot. So..no wonder he has been pretty peacful. We will just be waiting for surgery today. Pray for us because I still am very scared of surgery and as a mom it's that helpless feeling. They have had him so sedated at times and then want to pull him out of it so they can do neuro exams only to put him back in deeper sedation again. It just feels like an endless cycle. One that scares and frustrates me. I am ready for him to be able to not be sedated and able to communicate more. Pray that Hayden will not be frustrated when he wakes up with a trach in and not be able to talk much. It will take time before he figures out how to manipulate this new thing. Pray that this is only temporary and we can take it out soon!!!

Thanks again for the prayers and comments. We have been blessed that while we have been here some clergyman from different churches have adopted us and come by to pray with us and offer words of encouragement. We have missed all of you being able to come and visit and wrap your arms around us.


Love and faith in Jesus,
Christy

Updated by B and Jeremy 10/4/08

Dear Family and Friends,

We just got off the phone with Dad and thought we would try and post the newest information.

Hayden is doing well. He is responsive to family but is being stubborn responding to the dr's. He will be having surgery tomorrow at some point to install a trach and remove ventilator...we are unsure of the time at this point. The ventilator is causing swelling so the trach will relieve pressure and hopefully reduce swelling in the mouth and throat area.

He will be weaned off sedation to check responsiveness and general progress. Plus our little superman is ready to talk...although it will take some time.

Christy and Dave,

I hope we got this all correct. I hope this helps. You two need some rest and I know you are stressed. We love you and wish we could be there. Kiss our boys for us!!! STAY STRONG!!! Love ya!!!

To all who continue to keep Hayden and our family in your prayers, we truly appreciate it. The comments are uplifting and a daily reminder of how important Hayden is to so many. God bless you.

Sincerely,

Aunt B & Jeremy

Hayden's condition

Today there has been some changes in Hayden's condition. He has had some difficulties in his respiration rate and has a elevated heart rate, they are also checking for a spinal fluid leak. The Dr's.and staff are working on these problems and hopefully it will get under control. The chest x-ray doesn't show any pneumonia and we pray that it will not develop. He still has a very swollen tongue which still protrudes out of his mouth but it is not as bad as it has been. The swelling in his mouth is the major complication at this time. Hayden is still on the vent and under sedation due to his critical airway due to the swelling. We pray that God will guide the doctors and that these conditions will improve and that the recovery will go good. We are hanging on to all the prayers that are going up and that is keeping us strong.
God Bess you all,
David

Sleeping Peacfully

Good Morning, Hayden has had another good night. The swelling is still present in his tongue and lips but has decreased somewhat. The docs are not surprised by this; it may take a week before back to normal . Please continue to pray for Hayden's recovery. (swelling, able to remove vent.) Pray for Mason that he stays well and MiMi and Papa are able to keep up with him! :) Pray that David and I stay well and can rest as much as possible.

Talk to ya later,
Christy

Update Thurs.

Hello Folks,

Here's what I know as of this moment: Hayden had a pretty good night again last night (Praise God). Christy said that the Neurosurgeon resident was in early this AM and that he felt like Hayden was to sedated for him to assess and wanted them to lower the sedation so he could communicate with Hayden. So they lowered the sedation and Hayden is trying to communicate with him. Momma did not have a problem with communicating with him last night, he would answer her question...Are you hurting? etc. So resident wanted to let Mom and Dad know that Dr. Al-Mefty wanted to proceed with surgery on Friday if parents were in agreement but was leaving it up to parents. Mom wants to wait till swelling goes down enough to be a little more normal and wants to check swallowing before next surgery to make sure it was not compromised with this surgery before proceeding with next surgery. Dr. Al-Mefty will make final decision I would imagine, and when I get news I will pass it along. Please pray that they (parents) and Dr. make right decision and that the swelling will continue to go down in tongue and lips.

Several have asked for address here where we are staying for sending cards,etc. Here it is as follows:

Terry and Donita Chitwood or Christy and David Johnson'
c/o Markham House Suites
5120 West Markham- Suite 101
Little Rock, Arkansas 72205-3646

Again thank you for you comments with words of encouragment, cards and support for our family on this journey.

Much love,
Praising Him for His faithfulness,
Donita (aka Mimi)

Update-More prayer please

Hello friends and family,
Just wanted to update you all. Just talked to Christy and she said that Hayden had a restful night last night. They still have breathing tube in because his tongue still is swollen. So I would like to add some prayer requests: 1)The swelling in tongue to go down. When Dr. Al-Mefty came in just now he felt like it was an allergic reaction and told nurses to elevate Hayden's head up little more and put ice on lips.2)are able to get him off the breathing tube. 3)no problems with breathing once they take out tube. 4)Christy and Dave get some rest and Hayden will continue to heal without setbacks.

As I was writing Dr. Al-Mefty came in room to talk to Christy and Dave. He said that the surgery from MRI stand point last night showed that all but a small portion was all that was left. So as for this Fridays surgery he is going to wait and see how Hayden is doing before putting him through it again. Since this is not an emergency like it was yesterday. So not sure when it will be at this point.

Thank you all for all the prayers, words of encouragment and phone calls on our jouney through this valley. God has raised up His mighty prayer warriors for this journey and you have stepped up to the call and He has been faithful again in His mercy to answer as we asked and for that we are Still praising Him!!!!!! Please continue to keep up with the blog and keep the comments coming (don't forget to sign your name please so we know who is posting) We love you all,
and appreciate all you are doing for our family.

Donita (aka-Mimi)