Wednesday, March 31, 2010

ALL SMILES!

Melanie said that Witt has been all smiles! Yesterday he was smiling at everybody that came into the room! Today Stephanie and Marie(his night nurses from the PICU) came to visit which I am sure brought more smiles! Witt's journey towards home continues. His medicines have all been changed from IV to gtube and the PICC line had been removed!! Melanie and Austan are still working out the insurance details and making the necessary arrangements to bring Witt home. There has been no official mention of a going home date but it just feels closer!!! Melanie also told me that PT said that Witt was doing really well for how much time he's been lying in a bed!!!
I think Witt likes his therapist!

The smiles just keeping on happening!!!




Tuesday, March 30, 2010

MELANIE'S BOYS!

Witt continues on the slow path of going home. He did spike another fever yesterday but it didn't seem to bother him much. Once again there are probably no words
necessary with this picture...so I will leave you with the title
that Melanie gave the picture..........

THE BOYS!


I am glad that Witt is taking his pacifier
again. I love the smile behind it too!
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Saturday, March 27, 2010

GREAT PICTURES!!!

Witt's doing well and hanging out at the hospital. He spiked another fever yesterday morning but is feeling good! Since I am out of town at Zapp Hall and there is not a lot to report on the medical front I will just let these pictures do all the talking!!!!




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Friday, March 26, 2010

HE'S BACK!!!

It's been since before Christmas that I have seen this kind of interaction and smile on Witt's face except for recently at his mom and dad!
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I have missed this part of Witt...it's good to have it back! God gave me a wonderful gift on the day I was leaving to be gone for 9 days. It's out to my family's Zapp Hall Antique Show and our version of the Round Top Cafe for me! The main thing for Witt that will be taking place is continuing to get over the adenovirus and weaning methadone and ativan. Each of these medicines will be weaned down on alternating days. Melanie also got a call back from Medicaid! She answered a lot of questions and got the process started on Rider 28. Somebody from the hospital mentioned that they could even intervene and speed up the process once it was started. Seriously, what a great day...what a great, good God!!!!

Wednesday, March 24, 2010

SLOW BUT STEADY

Witt continues at a very slow pace but it is a pace going in the right direction! A couple of days ago Witt was diagnosed with adenovirus. In Witt(like most kids) it has caused a little respiratory infection with a fever but nothing serious. The doctors right now want to make only one change at a time and they also want those changes to be small. For the next 12 days the plan is to gradually ween Witt off the methadone and ativan. That is the only change for now. Normally this would be about a 5 day process but the doctors just don't want to move too fast! In the meantime Melanie and Austan are becoming very proficient with Witt's trach. Nothing about it seems to rattle them!
Sometimes Witt would just rather not smile!
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Please continue praying for favor as all the necessary steps are being taken to get Witt into the medical programs that are available. I also want us to always remember that God is to be our focus. For me that is easier to remember in the "hard" times than the times of seemingly no great need. The truth is He is all we need and that need is not lessened because our circumstances are easier or a little more routine!




WITT IS 17 MONTHS OLD!!!!

I am amazed by our God!!! He continues to reveal His faithfulness over and over again!!! The fact that Witt turned 17 months old is one of our greatest examples of God's faithful hand! And many of you emailed me with wonderful suggestions to help the insurance and financial situation. We were told about things from contacting the drug manufacturing companies themselves because most have programs to help with medications to some more government programs we had not heard about. Contained in the information were words of encouragement! I was sharing some of the emails with Melanie and we were talking about how on earth to get Witt on Medicaid. We kept hearing about a thing called "Rider 28" and Melanie has made calls on it and put Witt's name on waiting lists but we were stumped and frustrated. We were literally finishing the last words of this conversation when a lady from the hospital walked in the room. She was there to start setting Witt up with home health care and the equipment he would need at home. Mel told her that they had a home health care company but there was a problem. Witt's insurance was capped out. When Melanie explained the entire situation, this wonderful woman...this gift from God... not only told us what needed to take place but said she could set the entire thing up. She will make the necessary arrangements for when Witt is released. He will be taken straight from the hospital by ambulance to spend one night in a nursing home(with Mel and Austan). I don't know how it all works but because of this "Rider 28" and spending the night in a specific nursing home, Witt will qualify for medicaid and it doesn't matter if they have any money in the bank. She is also working on who and what needs to be done in the interim. As she was leaving, I told her she was a gift from God...an answer to prayer. She turned and said that was so good to hear because she knew that God had wanted her to take this job at Texas Children. I told her to please be encouraged by knowing that she was a blessing to us today. I don't even have her name but I will post it as soon as I get it! There are still financial issues to tackle but WOW!!! I am in awe...I am humbled...I am praising God!!!! He is more than able to accomplish all the concerns Witt!!!!


The last couple of days have been filled with...

First, some trach cleaning time!
Then some holding time!




And finally some smiles!!!!
(I have never had this much
fun being weighed!)

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Monday, March 22, 2010

MOVED TO 7TH FLOOR!













Witt waited patiently to be moved to his new room on the 7th floor! Finally around 7pm today Witt was moved! Not that Witt cares because his same bed goes with him but Melanie now has a bed and her very own bathroom with a shower! He did spike a fever earlier today too but we are sort of getting used to that!!!
Today Melanie and Austan found out that Witt's insurance has capped out. They really need prayer for favor as they try once again for medicaid as well as continuing to put Witt on whatever program waiting list they can. There is something else I would like to share with all of you...Austan was actually laid off effective this past January. Honestly, this has been such a blessing because Austan has been able to be with Witt and Melanie every step of the way! I don't know how he managed before to work and be at the hospital. Austan's boss felt so bad about having to do this. He put it off as long as he could. Austan was one of the last in his group let go. They are still being denied medicaid even with no income because the amount they have left over in their account from the Wee Dream Fundraiser. We are trusting God for their financial needs. God is Trustworthy...He holds Witt's life in His hands...He has a financial plan too! Please pray that God will not only direct their steps but that He will have gone before them and prepared the way!!!
Some of you reading the blog may have some great ideas and suggestions that you would like to share with Melanie and Austan. Please feel free to email me with these at kmccord525@yahoo.com and I will pass them on!!!!

Sunday, March 21, 2010

Witt's fluid level is better today.
His face is not nearly as puffy!

He is such a big boy now!
Hopefully Witt will be moved up to the 7th floor tomorrow. Witt has been in ICU(mostly the PICU but also the CVICU) ever since January 11th. I don't know how God does it but it never seems as long as it is! We are anxious for Witt to move to a regular room. On the 7th floor, it is 2 0r 3 patients per nurse and kids are on monitors for the most part. The best thing is that you have your own bathroom and a bed!!! I, of course will miss some of my friends that work in the PICU and the real coffee served in the recliner room. Mostly, I will miss the incredible and unique opportunities that God gives to minister to people and to be ministered to in the waiting room. But, moving on up from PICU to the 7th floor is always a good thing where Witt is concerned!
Witt even set up in his chair for a while today!
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Please pray for Kamden. She is 6 weeks old and fighting for her life. She came in with RSV. Yesterday she crashed and is now on ECMO. She is on this because of her lungs. I have had the wonderful opportunity to get to know her young parents(Granville and Katy). Granville told me he has been away from God and church for a while but that he would like to get back on the right track. He gave Witt a card that said he was praying for Witt within the first few minutes of meeting him a week or so ago. Katy and Granville both will just pull up a chair and visit but most of the time they are at Kamden's bed side.

SLOW BUT GOOD PROGRESS!

Witt has had a comfortable day. He's been awake a little more. He is requiring lots of suctioning of both his nose and mouth. May I just say my definition of "success" has been forever altered! Success now depends on how much mucus is suctioned out of Witt's nose and mouth. One great way to measure that success is the noise it makes going down the suction tube...yuk!!! Witt continues the somewhat slow progress towards moving to the 7th floor and eventually going home. He is still needing extra doses of diuretic to get his fluid levels down. Before he can go home he will need to be on a consistent dosage of diuretics. That will all be worked on over the next few of weeks as well as the training for Mel and Austan. I want to say again how amazing our God is. It is humanly impossible to achieve the peace and joy that consistently surrounds Witt. There are tears but God quickly wipes them away with His peace. Mel and Austan are not just making it through this. No, God is blessing them with abundant life...different life but still abundant!!

Witt is opening his eyes more and more!
He's trying the pacifier again...
back to wearing clothes...
AND being held by Melanie!!!!!
(I see her smile and say: "Praise You, Lord!)

We are once again going to allow anonymous comments. Please respect the purpose of this blog which has always been to give God the glory...He alone is Worthy!

Friday, March 19, 2010

A LITTLE PUFFY

Witt remains pretty heavily sedated however every 4 hours the sedation is lessened. He is pretty fluid positive. You can see that his face is a little puffy...

The good news is that Witt's vent setting are very low on the respirator. This may not apply to Witt but sometimes the only thing kids need to help them breathe is just the trach itself. The trach can help by giving a clear and open airway. We will see...God already sees we just don't yet!!! Dr. Albright(ENT) told Melanie and Austan that Witt's trach surgery was done just in time. He was developing nodes and things around the vent tube. If it would have been much longer before the surgery, the surgery would have been harder and taken a lot more time. Thank You, Lord that Your timing is always perfect!! The plan is to not move Witt to 7th floor PCU before Monday unless they really need the bed. This is the cardiologists request. So it's bedtime in the recliner. There is a whole roomful of people that I haven't met but for now it's some rest for me...in God's perfect timing I will meet my new recliner roommates!


Thursday, March 18, 2010

MISTER GOLDEN HAIR


Look at these golden locks!!!!!
Late last night Witt's heart rate was staying elevated some. It reached 170 at one point. We are not completely sure what was causing that. In rounds the doctors said it could be one of the medicines Witt was on. That and factor in that he spiked a little fever last night and has not dirtied his diaper!! Today his heart rate has stayed down in a good range but we do still need him to poop!!! Witt's next step will be within the next few days(probably not before the weekend) to move to the PCU. Then Melanie and Austan will also begin their training on how to completely take care of the trach. They went to my house for a short bit tonight to pack up Witt's nursery in preparation of finally moving back into their home that was destroyed about a month before Witt was born! The house was basically finished this past December and they were set to move in the weekend that Witt had to come back into the hospital. Please pray for Mel and Austan as they prepare their home for Witt and take care of so many details to accomplish that. Also pray that for Witt that he not only continues to heal but that the doctors can also get his medicines to a good home regimen!

Not a lot of action in this video but that's good for now!!!
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Wednesday, March 17, 2010

KEEPING WITT SEDATED

Witt is doing well tonight! He has been on a good amount of a paralytic medicine and sedatives so that he will not move. The area around the trach has to be given a few days to heel before he can be allowed to move. This afternoon the doctors lowered the dose of the paralytic medicine. They wanted to check some movement but Witt remains very sedated. He looks great! I am praying that Mel and Austan can at least get some sleep at night since Witt is not awake for his usual 10pm to 2am playtime!!! Hopefully, Witt will be moved up to the 7th floor within the week. That's the PCU(pediatric care unit) and those rooms have beds...glory!!!!

I am sadden and yet praising God that Reggie Holloway joined our Savior in glory tonight. Reggie had 19 years on earth and now an eternity face to face with Christ! I had the privilege and honor of walking with Reggie's family for a very short day and a half and yet our hearts are joined forever in Christ. I shared with them yesterday about the family I met right here last summer that as their baby was breathing her last breaths they were asking God for healing and yet they ended the prayer time with minutes and minutes of proclaiming over and over "nevertheless, nevertheless, nevertheless we will praise You!" Reggie's family are "nevertheless" people. Reggie is in the very presence of God and His full glory and his family...well, they walked out of here praising the Lord!!!!! NEVERTHELESS, NEVERTHELESS, NEVERTHELESS, I WILL PRAISE HIM!!!


Reggie's mom, Gwen wanted Witt to have Reggie's balloon and cross!




This will forever be one of my most prized pictures. Reggie had already gone to glory
but look at their
countenance...nothing less than God!! This is Reggie's
aunt on the left and his mom on the right...I am
surrounded by the love of God!!!!



Tuesday, March 16, 2010

GOD IS HERE!

The surgery is over...Witt is back in the room...
And now he rests!




Wow...what a God...what a God glorifying day!!!! The presence of God has at times been overwhelming. He is always More Than Able!!! As I write this post my heart is very saddened for the family just across the hall from Witt. I met them this morning and had the blessing of praying with them. Their 19 year old son, Reggie, has crashed twice this evening. He has a very rare immune system disorder. In the very short time that I have gotten to know them I have cried with them, prayed with them, held them and most importantly praised our God with them. I see God in this family!

Family and friends all gathered here today to show support for Witt, Melanie and Austan. And if they couldn't be here they were praying and texting me to keep a close eye on our situation. John Young from our church stopped by...he always shows up in God's perfect timing. He even took the opportunity to encourage and pray with another dad(Paige's dad). And Mona brought strawberries along with fudge to dip them in...somethings are more than essential! I see God in family members and friends!

All of you who follow Witt's blog and pray for us were felt here. You rallied around us by your prayers and comments. Your words were so soothing and encouraging. I see God in our blogger family!

Melanie and Austan....my sweet Mel and tender hearted Austan....they continue to glorify God in the way they walk through this. This is a hard hard walk...one that they didn't choose but God chose for them. They bring God glory and don't even realize it most of the time. Life is not sucked out of them and their joy is not stolen. I see God in Melanie and Austan!

AND Witt...just look at that face of Witt's...need I say anymore than I simply see the essence of our God all over those tape-free cheeks.

Thank You, Lord...thank You for being Lord of all the events of today. You are Mighty...Mighty to Save!!!!


GOD'S BLOG TO HIS GLORY!

I am sorry for having to make this post. To Heather Bell and whomever is posting anonymous comments that we have had to delete...Witt's blog has never been and will never be a forum for discussions on what someone thinks about our beliefs and will most certainly never be a place for anybody to judge how Melanie and Austan have walked by faith in the midst of the darkest of circumstances. We trust in God Almighty and Jesus Christ our Saviour not only for Witt and his physical condition but also for any and all financial support...the World and all it contains is His! I will not respond again to any of these comments but I will most assuredly delete them. If anyone has anything that they feel the need to say you can contact me at kmccord525@yahoo.com. This blog is God's blog...this blog is Witt's blog...please respect that!

And the good news!!!! Witt is out of surgery and doing well! He is not back in his room yet but should be within a few minutes...thank You, Lord!!!

IN SURGERY!

Witt is now in surgery! Mel and Austan are in the waiting room visiting with us. Right now I want to praise God for His peace and for His joy that cannot be stolen...even by someone that leaves anonymous comments that do not bring Him glory!! For that reason...because above all we desire the name of Christ to be exalted...we have(hopefully temporarily) blocked anonymous comments from the blog.

SURGERY STARTING SOON!

The anesthesiologist is at Witt's room. Witt will soon be taken for the surgery. Please Lord let the peace of Christ reign!!! Use all this for Your glory!!!

NO SURGERY YET!

Surgery still has not taken place. Now we are not even sure it will happen today. We are asking that God be in total control of every detail, every decision!!!! His perfect timing...His glory!!!

Monday, March 15, 2010

FAITH AND TRUST

Tomorrow between 10:00am and 12:00 Witt is scheduled for trach surgery. This is a surgery that we had hoped and still hope would not have to happen. Most of us cannot even imagine being on the path that Melanie and Austan have been called to walk on with Witt. Today in the waiting room I visited with a mom and dad that do know. Their daughter is age 12 and has the equally rare trisomy 10 condition. The father smiled as he talked of the incredible joy that Paige has brought into their lives and tears filled his eyes as he talked of the pain of giving up the "normal" hopes and expectations they had as parents for their daughter. Not long ago I was home and let the girls(Mel's miniature dachshunds) out in the backyard. The 2 Christmas trees that Austan had bought caught my attention.

This breaks my heart...their Christmas trees that never got used.
Any of us feeling sorry for ourselves?
Not me...I just remember the hopes
and dreams of Mel's and Austan's for their son
that God took and carved into His own
and lay all my expectations down!

I pray that God fill each of us with the kind of trust and faith
that I have been privileged to see in Melanie and Austan.
I pray that we are all filled with the fullness of their Christ!

SURGERY STILL SET FOR TUESDAY

It's been a restful weekend for Witt. He is still scheduled Tuesday for his trach surgery. I am stilling asking God to heal Witt's lungs. I am still desiring God's perfect will! There is not a lot to report on the medical front. So we wait and pray...pray and wait. Thank you...to all of you who continue to pray and wait with us! And thank you for your patience with me in updating the blog! It's getting close to antique show time at our place in the country so I have been there the last couple of days. While I was gone Witt sat up in his "tomato seat"!




SUPERMAN WITT SLEEPS!!!



Wednesday, March 10, 2010

STILL WAITING FOR SURGERY

Witt will not have surgery this week. Or at least that's the plan today! Dr. Albright(ENT) is scheduled to do the tracheotomy next Tuesday. This may mean that the vent tube will be moved from the nose to the mouth. Witt has not had a fever since a couple of nights ago. Infectious disease was called in to make sure they were not missing anything. They don't really have any answers either. Cardiac patients sometimes just spike fevers! God is certainly growing patience and trust...patience while we wait and trust in His perfect timing!!

Melanie took the opportunity to hold Witt



And Witt took the opportunity to play!!!
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Tuesday, March 9, 2010

NOT TODAY

Witt's surgery is cancelled for today. There was no mention yet of when it's been rescheduled for. No doubt it will happen in the fullness of His time!

NO SURGERY YET BUT STILL WAITING!

Still no word on whether or not surgery will take place this afternoon! God's perfect timing is what we are expecting so we wait! Also last night Witt spiked a fever of 103. He does that periodically and each time blood tests and cultures are done. If no infection shows up he is usually cleared for surgery as is the case this time. I will post as soon as we know one way or the other for sure. Melanie and I ran into Chase and Carol, his mom in the walkway just a few minutes ago. Chase is the young man I have asked for prayer for who had his second lung transplant. Carol has become a good friend and encourager to both me and Mel. I always love how God sends people to minister to me. Carol and Chase were just those people today!!!

I WAS ABLE TO SNAP THIS PICTURE RIGHT
BEFORE HE SAID NO MORE!

THIS WOULD BE THE "NO MORE" PICTURE!!


Monday, March 8, 2010

SURGERY MOVED TO TOMORROW!

While I was putting this post together with all the pictures Melanie texted me that Witt's surgery has been moved to tomorrow! Please, please pray for Melanie and Austan as they pray and seek God's wisdom and comfort! Melanie is very unnerved about the surgery being tomorrow. She admits that she never ever wanted Witt to have to have a tracheotomy but she is very unsettled particularly about the surgery being tomorrow. I am praying for discernment like they have never had before and a peace about however God leads them. I am also asking God to heal Witt's lungs. I am boldly approaching His throne and asking that He heal Witt's lungs so that no trach is even needed...I will ask this until Witt is healed or until God reveals that His perfect will for Witt is something else!! AND I am at His throne praising Him...He is worthy of our praise and adoration no matter our circumstances...not in spite of our circumstances but because I know that ultimately He is in control of all of our circumstances. I praise Him because He is Faithful and I thank Him because He freely fills Mel and Austan with His faith to continue in this walk with Witt!

THESE ARE THE BEAUTIFUL PAGES MEL HAS FINISHED
SO FAR IN WITT'S SCRAPBOOK!!