TRACHEOTOMY FRIDAY

Witt is doing much better. His kidneys are functioning very well. Today we are celebrating urine output!!! I think he is considered no longer in kidney failure. All the important things they keep track of are going in the right direction! With all that going right, Witt has been scheduled to have a tracheotomy on Friday the 12th. The trach is necessary because Witt has to remain on the ventilator. The only way for that to take place is to have a trach and the vent tube goes where the trach is. This is something that we had all hoped Witt would never have to have but in this too we rest in trusting God.

This video is a little dark but that's because it was

taken at 2am when Witt was wide awake!!

(Just realized this video hadn't previously downloaded!)

YES, LORD...THANK YOU!!!

Witt is NOT on dialysis and he is making urine!!! AND all his blood gas numbers are headed in the right direction!!! The renal doctors held off on starting dialysis. They first wanted Witt put on a IV drip of lasix(diuretic) and see how his kidneys responded. So far so good...so far so GOD!!!

UPDATE

Dr. Macicek came to talk to Melanie and Austan. He said he has never had to answer "I don't know" so many times concerning a patient. Right now they are waiting for Renal to come by and give their opinion on dialysis. Witt's kidneys are failing and with dialysis they might start working in the near future but we don't know. They might not. Witt is on very little diuretics in order to help the kidneys but for his heart and lungs this is dangerous. Even on the vent Witt's lungs and heart may not be able to handle all the extra fluid that is building up. If Witt goes on dialysis but his kidneys don't bounce back Dr. Macicek said you wouldn't want to leave him on dialysis for long. That would prolong Witt's suffering. Dr. Macicek said that this situation just is not good. BUT God is Good and He is the Stability of Our Times. He is our Strong Tower and He is Witt's Creator...His grace is sufficient!

At around 5 this morning when I switched with Mel so she could get some sleep in the recliner room my heart was breaking for her. She and Austan have walked this walk and loved their son in such a God glorifying way!! All I could say to God was: "Please, Lord, please!!" Suddenly I had this picture...Christ was standing over Mel in the recliner. He bent down and held her hand in His and whispered in her ear: "Well done my faithful servant." And she slept. Thank You, Lord!

STILL QUESTIONS

I have waited to update hoping that I would have some more information to pass along. We still don't know much. Witt is not making much urine but there is a little. The doctors haven't rounded yet. Witt is holding fluid...his face is puffy. I don't know what all this means. It may mean his kidneys are shutting down but I am not sure. I am not sure what it means in the bigger picture either. Witt is also having to be sedated more. Usually if he is awake he is pretty happy and playing. A couple of days ago he was being given his breathing treatment. The apparatus that pumps the air was laying next to him on the bed so the bed was shaking. We looked at Witt and he was laughing! Poor little guy...getting his breathing treatment was fun! Over the last 24 hours it seems like when Witt is awake he's agitated and needs sedated. I honestly don't know what to pray. I can't even in my human mind decide what I think is best. So I rest in His arms just begging that His perfect will for Witt be revealed!

KIDNEYS

Please pray for Witt's kidneys!!! He hasn't been urinating much at all and the doctors just did a bladder scan at 1am. They are worried that his kidneys aren't functioning properly...he's not producing much urine and his creatinine count is increasing. They're inserting a foley now to get accurate measure of the amount of urine he is producing.

And, as always, please pray for Mel and Austan...I can't fathom the emotional roller coaster they're on.

We'll update as we have new info...
God is Good!
Cheryl

DOCTORS AND SCRAPBOOKING!

Another quiet day in the hospital! Dr. Macicek and Dr. Morales stopped by to check on Witt. Both doctors agreed that Witt should have the tracheotomy done. Dr. Macicek said that having the tube out of Witt's nose or mouth is even beneficial for Witt's development. Dr. Morales said that the earliest he would allow it to be done(because of Witt's recent open heart surgery) would be the the end of next week. Right now there have been no final decisions made and certainly nothing scheduled. Melanie is now scrapbooking to help pass the time! She's finished several pages and the look great!

THE SCRAPPY ONE IN HER CUBBYHOLE!!!

STILL SMILING!

NOT EVEN A TUBE AND TAPE COULD KEEP A SMILE AWAY!

It was a pretty slow Monday for Witt around here. Melanie and Austan haven't really talked with the cardiologists since last week. One of the factors in whether Witt could leave the hospital is trying to keep the balance of his diuretics and fluids. His levels seem to change daily and it is a real balancing act to not get him too dry yet keep him as dry as possible for his lungs. To help pass the time Melanie is making signs for Witt's room and working on his scrap book. Anyone who knows Mel knows its going to be a fantastic looking scrap book!

Annalee made Witt this sign....

Melanie added these two to the decor!

GOOD WEEKEND

Witt has had a good weekend. No changes at all to speak of. I assume that this coming week will begin discussions on what the plan might be for Witt. We really don't know because there are still questions to be answered. Please continue to pray for God's wisdom...not only for Melanie and Austan but for the doctors who will help guide them! Here are some photos and videos from last week.

Witt still likes his bed to be shaken!

This was the day before Witt went back on the vent.

This man has entertained me for several days in the waiting room!

He has no trouble sleeping but a little trouble staying in the chair.

The sounds that he makes had all of us close to

rolling out of our chairs too!

THANK YOU TO MRS. ANDERSON'S CLASS!

It has been a pretty uneventful day. Most of the settings on the ventilator are pretty low. What Witt needs is the pressure support from the vent that helps his lungs to expand which in turn helps him to also exhale. No decisions need to be made right this second. In fact, if Witt were to have a tracheotomy it could not be done for several weeks because of just having had open heart surgery. Today he was more alert and enjoying some Olympics. He seems to have taken a liking to Women's Curling!

NOW....to Mrs. Anderson and her Precious Students,

Your comments today are so encouraging...more than you will ever now! Thank you for taking the time to not only pray for Witt, Austan and Melanie but also for commenting on Witt's blog. God has changed me so much through Witt's life. Hearing that God is using Witt in your lives is up lifting! God has recently made sure that I realize that nothing about Witt's life is a tragedy. A life that is used by God is the greatest success story. Witt's life is a huge success. I encourage each of you to choose Christ...choose Christ and His way of success!!

WITT IS ON THE VENTILATOR AGAIN

Yesterday Witt was put back on the ventilator. Melanie and Austan requested that it be in the nose and not the mouth so that Witt could still take his pacifier. Dr. Morales said that he doesn't believe it was Witt's heart causing this immediate need to be on the vent although overall the main contributing factor is undoubtedly the heart. This may have been caused by a virus but we don't know. Unfortunately, it doesn't really matter because Witt is back on the vent and is fluid positive. Today there is no decision to make but Melanie and Austan at some point will probably have to decide if they want Witt to have a tracheotomy. Right now there are questions that would need to be answered before any decision could be made. One of the main reasons to have a trach would be so that Witt could go home if he doesn't ever come off the ventilator. However, unless his medicines(diuretics, etc.) and fluids can be managed at home he would remain in the hospital anyway. There are most likely some hard hard decisions ahead. Last night Mel said she doesn't want to have to make these type of decisions. I am praying that if there are decisions to be made that God would make the right choice so clear that it almost feels like there is no choice at all! I am wholeheartedly praying for God's perfect will to not only be carried out but to be made totally evident to Mel, Austan and the doctors. And I still know that our God is Able...able to heal Witt. I also know that He is Faithful...I have seen that over and over again. I know that He will accomplish all that concerns Witt, Austan and Melanie and faithfully carry them through all of this!

Isaiah 25:1

O Lord, You are my God;

I will exalt You, I will give

thanks to Your name;

For You have worked wonders,

Plans formed long ago, with

Perfect faithfulness.

GOING ON VENTILATOR

Witt is going to have to be intubated. Melanie has asked that for now the tube at least be put through the nose and not the mouth. This way Witt can still take his pacifier and put his fingers in his mouth. This will require an anesthesiologist so they are waiting on that. Jim just came from Witt's room and said the doctors and anesthesiologist are there now. Please pray Witt, Mel and Austan!

WITT'S A LITTLE WORSE!

Yesterday Witt had a good day. He was smiling and alert. Last night however he spiked a fever of 102. He has been tested again for all the common viruses. This afternoon as I was leaving the hospital Melanie let me know that she thought Witt was getting worse. She said he looked puffy which means he is holding fluid. The 4:00pm blood gas showed that his CO2 was 100! I headed right back to the hospital. Witt has now been put on Bipap from Cpap. They will do another blood gas soon. The fear is that Witt will have to go back on the ventilator. I know I usually have specific requests but I find myself at a loss of words...kneeling at the throne of grace just saying: "Please, Lord,Your perfect will. Please, Lord, let Your mercy and grace flow!"

HAPPY 16 MONTH BIRTHDAY!!!!

Witt is 16 months old today!!!

He is a big boy!

Today's birthday wish(actually prayer!) is that Witt's lungs will improve. The chest x-ray looked a little worse today and his CO2 is staying in the 70's. It had been in the 50's...the lower the better! What is a little baffling to us is that he seems to be breathing easier. It's not labored like it has been at times. He definitely has lots of congestion that has to be suctioned quite often!!

I remember when I used to celebrate not just each week but everyday of Witt's life as a precious gift from God. I confess that I have somewhat lost that mindset. Please, Lord, keep me so positioned at Your throne that I celebrate every day that You give not just Witt but me and that each day gives You more glory!

ON THE MOVE!!!

Witt is on the move! We are thrilled for the move. Not that we didn't appreciate the doctors and nurses in the CVICU but its like moving back home to the PICU. Please don't miss God's mercy and grace in this! I always thought of the transforming of our minds more with sinning but God has transformed our minds...our thoughts...so that moving to PICU is exciting and encouraging!!! The mercy, the grace of God that He would give us this mindset so that we wouldn't despair! When I opened the doors to the PICU waiting room of course pulling my rolling cart behind me, Maria(the receptionist) and one of my favorite workers yelled: "Miss Karen!" We just laughed and hugged!!! God is Good...all the time! Now, onto Witt! Dr. Knudson reminded Melanie today that 4 days ago Witt was on a ventilator. Today he is on CPAP and they have been able to lower the setting so Witt is headed in the right direction. We don't know how "far" God will carry Witt in that direction but today we celebrate all the moves in the right direction!!!

THIS IS NOT WITT BUT IT STILL MADE ME LAUGH!!! THIS IS WHAT I SAW AFTER I HEARD SOME NOISE AT THE WINDOWS ON THE

17TH FLOOR WAITING ROOM!

LITTLE BETTER!

Witt is still off the ventilator and on CPAP. His blood gas numbers(CO2, etc.) have been up and down. The last blood gas results were all a little better. His feeds have been slowly increased and he should be at the normal amount tomorrow. For now Witt really needs your prayers that he will continue to move in the right direction...that he will expand his lungs as he breathes and they will get better! At some point, also, I believe Witt needs to come off CPAP to just regular oxygen through a nasal cannula.

This weekend I had the opportunity for the first time to talk to ladies in Abilene who have been faithfully praying for Witt. What I wanted them to know and everyone who is praying for Witt and my family to know is that your prayers are felt! Please know that even if we never meet this side of heaven, we feel the effects of your prayers and only our God could do that miracle!

I am amazed how Witt just plays no matter the contraption on his face!

BREATHE DEEPLY, SWEET BOY!

We have a very specific prayer request today...we need Witt to really BREATHE! We need nice, loooooong, DEEP breaths. Since he came off the vent yesterday he hasn't been staying very warm (although, Witt's Great-Grandmama, my mom, tells me that his precious little hands are warm now!) and this morning his upper right lobe was a little collapsed. We need our sweet boy to really BREATHE and expand those lungs and send that oxygen to his extremities so he can stay off the vent!

As I've been typing this post, I've been thinking about all the different songs, both Christian and secular, that speak of "Breathing." I will most likely "hear" Rebecca St. James' "Breathe" in my head all day today...one of my favorites!

"This is the air I breathe

Your Holy Presence living in me"

But, it's the classic hymn, "Breathe on Me, Breath of God" that I will be PRAYING for Witt today!!!

Breathe on me, Breath of God,

fill me with life anew

that I may love what thou dost love,

and do what thou wouldst do.

Breathe on me, Breath of God,

until my heart is pure,

until with thee I will one will,

to do and to endure.

Breathe on me, Breath of God,

til I am wholly thine,

til all this earthly part of me

glows with thy fire divine.

Breathe on me, Breath of God,

so shall I never die,

but live with thee the perfect life

of thine eternity.

In Him,

Cheryl

OFF THE VENT!!!

Witt was successfully extubated earlier today!!!

Praise the Lord...no more vent!

PLEASE, LORD, OFF THE VENT!!!

Witt is supposed to be extubated today. Probably sometime after 11am. Please pray that Witt can come off the ventilator and stay off! The echo yesterday indicated that the surgery didn't help much. There is little to no change with the valve and heart. For now what is important is that Witt can breathe without being on the vent. We were hoping surgery on the valve would help with his lungs which in turn would help assure that he would not need the ventilator. As has always been Melanie and Austan's walk with Witt, we look to our God for real assurance and for the final say! Please, Lord, please...You Yourself breathe for Witt...big deep breaths...confound the doctors...show Yourself Mighty, Mighty to Save!

MAYBE TOMORROW!

We don't have any results yet from the echo cardiogram but it has been decided to not extubate today...maybe tomorrow. The only thing I am certain of is that nothing is certain! I am asking for and trusting in God's perfect timing to take Witt off the ventilator!!

ECHO AND HOPEFULLY EXTUBATE!

The plan today is to extubate Witt! He will have an echo on the heart first and if that looks good then he will be taken off the ventilator and put on CPAP. It is such a blessing to have Dr. Knudson on the CVICU floor. He too, like Dr. Macicek, is in the cardiac fellow program. Dr. Knudson has seen Witt many times now and is very familiar with him. Witt's lungs actually look a little wetter today but Dr. Knudson knows that Witt's has secretions increase the more active he is because of being on the vent. There usually seems to be a best time of opportunity to take Witt off the vent and then the fact that he has been on the vent for some time begins to work against him. Once again Witt's feeds are being held in hopes of extubating. Today feels huge!!! The main reason that this open heart surgery was done was in hopes that it would improve Witt's lungs to the point that he would not have to be on a ventilator which would mean also needing a trach. I know that God's word says that we don't have because we don't ask AND we ask for the wrong reasons. I am asking God to heal Witt's lungs...to allow Witt to come off and stay off the ventilator!! One of my greatest hearts desires is always for God to be glorified. I desire: "that they may see and recognize, and consider and gain insight as well, that the hand of the Lord has done this..!" BUT, I wouldn't be completely honest if I didn't tell you that today I am at the throne of grace as a mom and grandmom simply asking God for the echo to show that the mitral valve is working better and to allow Witt to breathe without a ventilator!

Here is some much requested video!! The sedation slows

Witt down some but not the vent!

PIC LINE PROCEDURE TODAY

Witt is still slowly going in the right direction! Feeds have been started but were stopped last night so he could have work done on his existing PIC line or a new one put in. This procedure does require Witt to have a cardiac anesthesiologist. He is getting less and less sedation throughout the day so he is awake a lot more....awake and playing with his toys! Witt is now on ventilator support trials every 3-4 hours and seems to being doing good. So far we don't know when they might try to extubate. The main goal for today is a familiar one...pull more fluid off of Witt!!! His diuretic dose will be increased and/or another one may be added. There has been no mention of when Witt might be moved out of the CVICU. Hopefully he will be headed at least down to the PICU soon!!

CHEST TUBES OUT!

This morning both of Witt's chest tubes were removed! This summer the drainage tubes had to be left in Witt for a lot longer so this is definitely a blessing! Feeds were actually not started yesterday but it is planned for today. Also, Witt was given a volume support trial on the ventilator and he did well! The nurse believes that they will do another support trial later today. Hopefully if Witt does well on this one too he can be taken off the ventilator soon! I can tell you that for now Witt is healing up nicely. I can also tell you that God's presence and His activity can very much be felt by anyone who enters Witt's room!!! Earlier today my friend Rise' and I were texting back and forth. I included Cheryl and Jim. I am going to put some of our texts below because I believe it will help to answer the question that many people can have in this situation..."Where is God in all this?"

I shared with Rise' what God had just reminded me of. Last spring God told me that 2 angels will always watch over Witt. He reminded me this morning as I sat with Witt that they still stand over him and that they would never leave Witt! Rise' responded by saying: "Wow, what a great thing to think about! Angels are right there by his bed!" I said that God gives me sort of a picture or image. Nothing detailed and it's not about the image but about the feelings that accompany it...like I am on Holy ground with the angels and Witt! Rise' said: "It makes me want to shout!" I said me too! Only God could do that while I am sitting in a CVICU room with Witt all hooked up to machines and I just want to shout for joy!!!! Rise' responded with simply and truthfully: "Amazing grace..." My sister, Cheryl's, response was: "I agree! There have been times at the hospital that the peace is SOO overwhelming and tangible that it has taken my breath away." Jim's answer may put it the best of all: "I have had similar feelings that God is present at times when I am with Witt. That would explain it. In all the life changing moments we have gone through, never has God's peace and comfort ever left. There is no more a greater testament to God then a sick boy who says no words but speaks and shouts God's name through his very life. In all of this there is no doubt a sense of strength and peace that gives us a hope that makes no sense to many. I so know that God is there with you all."

I still have questions and things that I don't understand but I have to choose to not dwell on those but dwell on the truths I know. If anyone wants to know "where on earth is a loving God in all this?" He is here...right here...and He is all loving! It is because of His unfailing love, grace and mercy that we can shout for joy and even just laugh! And yes, sometimes we might have to "shout" a little louder to be heard over the ventilator and various alarms in Witt's room but NEVERTHELESS He has empowered us to shout! What an Amazing Lord we have...to Him be the glory...forever!!!!

IMPROVING ON THIS VALENTINE'S DAY!

Happy Valentine's Day! Witt would normally give you

a Valentine smile but he's not quite

up to that for today!

Witt is improving and looks much better today! He is still on the ventilator but they might try a pressure support trial this afternoon. This needs to be done a couple of times before the doctors would consider extubating. Witt has dirtied a diaper(bowels moving!) so he can be fed now. The feeds will be started sometime today and be given very slowly at first. For now its slow changes and no real timetable for moving out of CVICU. Definitely "as God leads!"

This is Witt's command center in his room! What do you think it

looks like around God's throne?!!!!!! Nah, just

God...that's enough...El Shaddai!

SEDATED AND DOING WELL!

Witt is doing well! He is on good pain medicine! They want to keep him pain free and pretty still. He has a couple of drain tubes from his chest and he is on the ventilator. Over the next couple of days the goal is to get the extra fluid off of him from having surgery and lower the sedation enough so that he is doing some breathing of his own over the ventilator. The cardiologist's are very pleased with how he is doing. This was a very "big" surgery!! Please pray that very soon Witt will be able to come off the vent. Thank you to each of you that continues to walk with us and pray for Witt!!!

ITS OVER AND WITT IS DOING GOOD!

The surgery is over!!! Dr. Morales repaired the valve. It is working much better. We won't know how "successful" it was for a while. What I do know is that Witt made it through open heart surgery without any complications!! He came right off the heart bypass! He is on a ventilator and will remain for a few days but will hopefully come off soon. I believe God has Witt right where he needs to be. A great surgeon has done everything he can do and still is not sure what the outcome is. Now God, who has always been in control, can do what He desires and there will be no doubt it is God!!!!