STILL A LITTLE FLUID POSITIVE

Witt is resting well now after a pretty long night last night. We were a little worried about Witt's oxygen saturation. The attending came by this afternoon and answered all our questions. Witt is fluid positive but they are not wanting to give him any more diuretic by IV and so far its not affecting his lungs. Everyone who goes through surgery ends up with extra fluid. They have to keep a close eye on Witt to make sure it doesn't knock him for a loop! His lung x-ray looks pretty good. Witt's osat drops when his stomach is bothering him but does go back up to 99-100 when he is asleep. Right now they are taking things slowly but in general are happy where he is after surgery. The more Witt can recover on his own without intervention the better. Witt was given full feeds the day after surgery but that was stopped and he was put back on IV fluids first. This morning he was given small steady amounts of pedialyte. Tomorrow he will be given small amounts of formula that is lower in calories than his usual and work up to 30 calorie per ounce. As you can tell it's small steps for Witt but so far it has been forward steps! There has been no mention of when Witt might get to go home. His stomach and feeds need to be taken care of. I am asking God to continue His amazing work in Witt for all to see!! I am also asking God to get Witt home before the antique show! If you are familiar with Mel's family, you know we run an antique show and a cafe' on my parent's property in the country twice a year. That's coming up in less than 2 weeks and lasts for 9 days. It will be hard enough without Melanie and Witt out there but very hard if Witt is still in the hospital! Having said that though...my God is so giving in His loving grace that I have no doubt it will all be fine regardless!!!! AND the family and friends that God has given my family that continue to rally around us to help with the antique show is amazing and humbling. It too is one of the most incredible ways that I am touched by God.

Today Melanie and I took Witt, Bert and an IV pole for a walk. Witt loves his stroller and it sure feels good to get up and walk!

BEFORE THE WALK!

AFTER THE WALK!

STILL WAITING

The doctors haven't come by on rounds yet...we'll update just as soon as they do!

Praying for wisdom and speedy recovery!
Cheryl

NOT SO GOOD TODAY!

Witt seems to not be feeling as good today. His oxygen saturation is staying low...sometimes even 89-90. He looks like he is breathing a little harder. Also his hemoglobin is a little low and they had to put another IV in because his other one quit working. In general, Melanie thinks something is going on but unfortunately its the weekend. Although these doctors are still very good these are not his normal cardiologist and they don't like to make changes. We don't want Witt to go backwards and sitting here waiting for Monday morning doesn't seem quite right! Melanie is trying to find out who the cardiology fellow is on call tonight. Please pray that the doctors can determine what is going on. Witt was doing very well before surgery and we know it takes a lot out of him. Please pray for endurance for Melanie and Austan...this has to wear them out too!!

"...THAT MY SOUL MAY SING PRAISE..."

"You have loosed my sackcloth and girded me with gladness, that my soul may sing praise to You and not be silent. O Lord my God, I will give thanks to You forever!"

I look at Witt's life and sing praise to my Lord. I remember the day that Witt was born and the tears of utter anguish not only for Witt but for Melanie and Austan. My God has indeed loosed my sackcloth and girded me with gladness. That's the big picture but I can also say that each day no matter the circumstances God has not allowed despair to reign. I don't know what even tomorrow holds for Witt but I know that God holds Witt! God is Mighty to Save and in that truth I rejoice. God is my Hope....as incredible as Texas Children's is and the doctors, they are not my hope. Whatever circumstances I will walk through in my life I know(because I have experienced it through Witt) that God will gird me with gladness as long as He remains my Hope and nothing else in this world. O Lord my God, I will give thanks to You forever!!

Witt is doing really well considering this is his second post-op day. I have asked you to pray for many specific things and this may take the cake. Witt needs to pass gas so he can eat! Sorry, but that is the greatest need. The x-ray this morning showed that Witt has a lot of gas in his intestine. He will not be able to eat until they know for sure his intestines have started working well after surgery. There is no concern. This is normal especially after abdominal surgery. BUT Witt is hungry and his hands just don't seem to do the trick!!

ON THE MOVE!!

Witt is being moved to the 15th! Not sure if it will be a regular room or step down. His blood gas(CO2) came back good, his breathing is good so he is moving up! The doctor also ordered his food to start again. WOW and THANK YOU, LORD!!!

A GOOD NIGHT...A MIGHTY GOD

Witt had a good night in the PICU. He has a decent amount of pain so morphine is being administered regularly. The great news is that Witt's oxygen is already back down to 1/2 liter and he is satting at 100! He has been given lasix by IV to help his fluid balance. One of the cardiologists in the PICU just said that Witt should be ready to go back to 15 and HIS own room today! Glory...Glory...Glory!

I am amazed at the joy and the laughter that Melanie and Austan continue to have. Witt even got in on the act right before he was taken back for surgery!

VENTILATOR

Witt is off the ventilator and in recovery!!!! Melanie and Austan are with him now. He will spend at least one night in PICU then back to the 15th floor. The doctor and anesthesiologist said Witt did real well. Thank You, Lord...glory!!!!

SEWING WITT UP!

The surgery part is over and Witt is being sewn up! They haven't taken him off the ventilator yet...hopefully when the surgeon is through closing. All went well!!!

SURGERY WILL START IN ABOUT AN HOUR

Mel and Austan just came out from being with Witt. The actual surgery will probably start in about an hour and I think probably last about an hour...maybe a little longer. Melanie and Austan are doing well!

SURGERY AT 12:00!

We love this little man!

Please pray right now for Witt...they have tried 3 times for an IV. The one that was in blew earlier this morning and he needs IV fluids!!
Witt is still on the schedule for surgery today at noon. They will probably take him around 11:00. Melanie and Austan will get to stay with him for a little bit before surgery. The best guess is that surgery will last 1-2 hours. Our immediate concern besides the surgery itself is the ventilator. Witt will be back on the vent and we don't know how long. Please pray that he doesn't have to be on it very long!!! Please pray that Witt's heart and lungs come through surgery just fine!
Please, Lord, be near to Witt. Let Your angels surround him in the operating room. I will extol You, my God, O King, and I will bless Your name forever and ever. Every day I will bless You, and I will praise Your name forever and ever. Great is the Lord, and highly to be praised, and His greatness is unsearchable. One generation shall praise Your works to another, and shall declare Your mighty acts!
After I posted this, I glanced at the blog. What caught my attention were the 2 pictures I could see at the same time...the one I posted today and the one on the left when Witt was just days old. I am brought to my knees praising Him as I am reminded that truly God is the Sustainer of Witt's life. Be still my soul and know that He is God, Witt's God!~Karen

FUNDO SURGERY TOMORROW!

Witt's fundoplication surgery is scheduled for tomorrow. We don't have an exact time yet. Honestly, even though none of us want Witt to have another surgery, if he needs it then we are glad it is sooner than later. I am trusting that this is God's perfect timing. The sooner the surgery the sooner Witt is back on the path of going home! After surgery Witt will go to an ICU room. Right now we don't know if that will be the PICU on 3rd or the CVICU on 17. Either way it's back to recliners but it's also back to crossing paths with more families...a chance to allow Christ to touch lives! Witt will dictate how long he has to remain on the ventilator. The doctors will try to remove the vent as soon as possible. I am not sure if they will try immediately after surgery or wait a little later to even attempt it. Witt's lungs are looking very good(for Witt!). Melanie asked if it wasn't too soon after pneumonia to have surgery. The attending said Witt's lungs are in good shape for him and are pretty dry. SO...with God leading...Witt is scheduled for surgery tomorrow. We have learned that nothing around here is etched in stone though. I just see Christ right now holding Witt in His arms and walking. Christ has the most beautiful smile on His face and is simply asking us to walk with them!

MORE SURGERY TALK

Witt is feeling much better...a lot of chatter and smiles! The doctor (Dr. Wesson) that will do the fundo surgery came by to answer Melanie's questions. One question was whether or not this could be done laparoscopically. Dr. Wesson will talk with the cardiologists and the cardiac anesthesiologists. Laparoscopic surgery is less painful right after but there are a couple of big concerns. First, doing the surgery this way could take 1 to 2 more hours which would mean that much longer under anesthesia. Second, in order to do this surgery Witt's abdomen would have to be filled with carbon dioxide then his lungs would have to absorb it. Witt in the past has had issues with too much carbon dioxide in his lungs. Dr. Wesson will talk it over with everyone and make the best choice for Witt. He mentioned that surgery might be able to take place by the end of the week but nothing is scheduled. Witt's medical knight in shining scrubs came by too...Dr. Macicek! He had been out for a week. He visited with Mel and joined the other doctors for rounds with Witt. Dr. Macicek was the first cardiologist Witt had beginning back in December. To have him still on Witt's case is wonderful!

Maybe Dr. Macicek is drawn to Witt's snappy dressing!

Witt rested well last night but apparently his hair didn't!

MOVING ON

Witt is on the move out of step down!!!

Its definitely a holiday around here. Witt is continuing to get better! His oxygen saturation is great which means the lungs are healing. He is no longer on any monitors except his normal pulse/ox. No surgery is scheduled yet. Hopefully we will find more out tomorrow since the holiday weekend will be over. I continue to pray for God's timing for surgery.

"Trust in the Lord and do good; dwell in the land and cultivate faithfulness."

I pray that during this time of waiting that we grow and grow in our faithfulness...that we do good and bring God all the glory!!!!

NOT A LOT TO TELL BUT WE ALWAYS HAVE VIDEO!!!

Not really any new news today which is actually good news! Witt continues to get better. They have been able to lower his oxygen back to 1/2 liter. All the doctors, especially pulmonary, want Witt to have the fundoplication surgery as soon as possible. The fundo would stop Witt from being able to throw up. In fact, nothing would be able to come back up from his stomach. Witt has pretty bad reflux and that could be coming up and going into his lungs also. This surgery would stop that. Please pray for God's timing on this surgery. Obviously, Melanie and Austan want Witt as healthy as possible before he is ventilated again for surgery. You can tell from these videos that Witt is feeling much much better!!

THIS IS THE DAY THAT THE LORD HAS MADE!

Let us rejoice and be glad in it!! What a difference a day(actually God within a day!) can make. The resident said they are thrilled with where Witt is today compared to even just yesterday! AND if that's not enough good news...Dr. Morales stopped by and said that although it's certainly not good that Witt has pneumonia, it is great the way Witt's heart handled it!! He said that if Witt's heart had been on the edge this would have pushed it right over. WOW...tears of joy!!! Someone from the pediatric surgery team is suppose to come by today to talk to Mel and Austan in more detail about the fundoplication surgery. All the different teams(pulmonary, cardiology, gastro) are all for this surgery. That has not been scheduled at all but I believe the doctors would like to get Witt's lungs better then have the surgery then send him home.

Melanie and I entertain ourselves watching dvd's...Witt is more of a Buzz Lightyear balloon guy!!

DOCTORS, DOCTORS, DOCTORS!

The doctors came by for rounds and the pulmonologist just left. A lot is up in the air but here is what we know...
~Witt does have aspiration pneumonia so he is on an antibiotic to treat it.

~Witt's lungs are wetter overall so he is going back to a heavier regimen of lasix by IV.

~Witt is still "grunting" and gagging with the lower calorie(less rich), slower, continuous feed so you can probably assume the stomach issue is not from the feed itself.

~Gastro has backed down on being so firm that Witt is digesting slowly(slow motility) so he is now on Erythromycin to speed digestion up.

~Witt's BMP number is high. This number reflects how hard the heart is having to work. It could be simply because he is sick. The cardio myopathy team(Dr. Jeffries, et al.) has been asked to follow Witt also.

~Most likely Witt will need the fundoplication surgery to keep him from aspirating on what is in his stomach regardless of the cause.

Right now Witt has 2 major issues apart from the always present heart condition. Witt has been throwing up and Witt has pneumonia from aspirating on his throw up. The doctors are very dilligently trying to come up with an immediate plan and long term solution to both! The attending told Melanie that Witt would most likely be here for a couple of weeks in case she was making plans. Mel's most humorous response: "I haven't made plans since I birthed him!"
But, Melanie is walking in the hard plans that God has planned for her and Witt right now and doing it with the grace of God and humor!!!

CARDIAC FELLOWS!

First let me say it is not Witt's heart that has him in the hospital. The echo confirmed that there has been no change there!
We have appreciated the doctors and staff here at Texas Children's and for us the cardiac fellows are a real stand out!!! Over and over this group of doctors show incredible compassion along with the necessary wisdom. The cardiac fellow today seems really on top of things for Witt. He believes Witt does have aspiration pneumonia from aspirating on his vomit. Witt is now on an antibiotic for it and being moved to a step down room on 15 which is actually the step up in care. It is obvious that Witt does not feel good! Gastro has already stopped by and talked to Melanie and Austan about a range of steps from something to speed up digestion to fundoplication surgery to stop Witt from throwing up again. The fellow also called pulmonary to consult. That will take place tomorrow. We feel like something is really being done now! Even though there still are no real answers yet as to why Witt was throwing up in the first place, his medical condition right now is being taken care of. Thank You, Lord, for the team of cardiac fellows!

THE OTHER SIDE OF THE FINE LINE...CHRIST!

"Our soul waits for the Lord; He is our Help and our Shield, for our heart rejoices in Him, because we trust in His holy name. Let Your lovingkindness, O Lord, be upon us, according as we have hoped in You"


We wait on God all the while we are still waiting on results! Right now they are trying to draw blood. Witt is a hard stick! They have to periodically stop to let him breathe...let me breathe! In wanting to always be honest and open I want to say that I am walking a fine emotional line. What blows me away is that because it is a fine line...God is always right here. Yes, I might feel like I am close to breaking BUT BECAUSE IT IS A FINE LINE, GOD, WHO IS ON THE OTHER SIDE OF THE LINE IS ACTUALLY VERY VERY CLOSE AND HE IS FAITHFUL TO HOLD ME!!!! The finer the line feels, the more I feel God nearer!!!


The resident just came by. Witt's lungs look a little worse from a couple of weeks ago. What the echo will confirm or rule out is if the heart (valve) is causing the lungs to be wetter. If it's not, Witt will probably need to go on antibiotic to treat them.


On one side of the fine line is despair but my Hope is on the other! I choose Christ...I choose Hope!

"I will bless the Lord at all times; His praise shall continually be in my mouth. My soul will make its boast in the Lord; the humble will hear it and rejoice. O magnify the Lord, with me, and let us exalt His name together!" Lord, let it be in me!!!~Karen

This is probably my favorite Witt outfit...notice the bandaids!!!

Witt is a chick magnet or at least a nurse magnet!

PLEASE, LORD!

Witt is going now for his echo on the heart. Please Lord, mercy and strength! Mel is exhausted. Witt did pretty good through the night but early this morning he started the "grunting" thing he sometimes does along with grabbing at his feeding tube. His oxygen saturation dropped even while on 1 liter oxygen. He's resting well now and his osat is back up but his breathing is still fast even for him. I am praying from the deepest part of me...begging God to intervene here! We desperately need His wisdom, His guidance, His strength, His comfort!!!

ALL SETTLED BACK IN

Witt was admitted this afternoon and is all settled back in at TCH. He is on the cardiac floor but not in a "step down" room...so, he is in a relatively low level of care room. Mel continues to blow us away with her incredible mothering skills! She really goes to bat for her son and stands her ground...we've seen this in her personality since she was a little tyke and it's absolutely AWESOME (in the purest sense of the word) to see how God has used it for Witt...He has been weaving this tale for years and years, prepping us for what was to come...thankfully, Mel and Austan have willingly allowed Jesus to work through them as they take each step on this incredible journey of LOVE.

Here's where Witt is now...his respiratory rate is fast, even for Witt...he has held down Pedialyte so far tonight with meds...his lungs may be a little wetter but not significantly...his first bloodwork from this afternoon came back really good, including his blood gasses...the sweet little man just doesn't feel well. SO, we really need to rule out some big things before the docs can look further...

Tomorrow, Witt will have an echocardiogram to take another look at his mitral valve.

This afternoon one of the cardiology docs said that when a heart patient is vomiting he always suspects the mitral valve until it's proven that it's not.

So, that's precisely what we're praying...

that the echo will PROVE that the mitral valve has NOT gotten any worse.

While I simply can't even begin to imagine what Mel and Austan are feeling, I know that I do speak for them when I say how truly THANKFUL we are for the people that bring Texas Childrens Hospital to life...these incredible folks dedicate their lives to this place to a degree that I just can't fathom...may God BLESS them and their families in a mighty and abundant way!

As Witt, Mel and Austan prepare to stand toe to toe with these giants once again, I pray that they have the strength of thousands to hurl those rocks!
Humbly,
Cheryl

BACK TO TCH

Poor little Witt has been throwing up all morning. Mel is very concerned about his medications...there is no way to determine how much, if any, he is actually keeping down and getting benefit from. She has talked to the doctors a couple of times today and they have decided that Witt needs to go back to ER and, most likely, admitted...they need to keep a close eye on him until they can determine what is causing him to vomit so much, especially since he is most likely throwing up most, if not all, of his medications.

It probably goes without saying that we beg you, friends, to pray for ANSWERS! I just pray that God would make it perfectly clear to the doctors what HIS plan is for Witt and what needs to be done to give our little man some relief!!!

Please pray also for renewed strength for Mel, both physically and mentally. Karen tells me that she is doing remarkably well..."amazing" was the word that Karen used to describe her, in fact! But she has to be exhausted and frustrated and scared and on and on. And pray for Austan as he was finally settling back into a "normal" routine with his family at home! Christ shines brightly through the Luphers but we need to stand with them, praying for them and loving them through these difficult times.

We will most definitely keep updating!
On my knees,
Cheryl

THROWING UP ALL MORNING!

Please pray...pray for Witt-his stomach, for Melanie-endurance, encouragement, guidance! Witt continues to throw up this morning with feeds, with medication. Basically he just doesn't feel good. Melanie is trying everything she can think of. Right now she is waiting for a call back from the doctor who was going to talk to Dr. Jeffries. Please, Lord, give us Your wisdom and in the midst of waiting for Your answers give us strength, patience and the one True Hope!!

HOME!

It's a little after 2am and Witt is home! He was ever so slightly dehydrated but that was all. His electrolytes were good along with his creatinine level. Witt's respiratory rate seemed a little faster to the cardiologist but since it's Witt and they know Witt, she decided it was okay. They skipped his last diuretic and will start it all up tomorrow morning...actually this morning now! One thing that Melanie found out is that the potassium total for the day can be spread out over 24 hours so she may try that. It will be given more times but a lesser amount each time through out the day. Also the potassium in the hospital is just a clear liquid and what Witt takes at home is pink flavored liquid. Melanie is going to see if she can get just the clear plain liquid. The doctor said that the potassium itself doesn't actually upset the stomach but the taste is horrific. What could be happening is that Witt's reflux is bringing it back up along with the awful taste and that is causing him to throw it up. I am grateful that even though it was a long night it wasn't an all night stay. The entertainment from Melanie and Austan is almost worth the trip!!!

KEEPING ME STRONG

After talking with the resident on call, Melanie and Austan have decided to take Witt in to the hospital to have his electrolytes checked through cardiac emergency. Since is stomach has not reacted well and the incidents of vomiting have increased, he may have lost some nutrients that his body needs. Please pray for the family as they head down to the hospital and that Witt's current stomach issues are diagnosed. We will update the blog as we know more information.

STILL THROWING UP!

Please pray for Witt! He is still throwing up and actually its more. It had been about once a day and now its 2 or more times! He always feels better after he throws up.Not to be too graphic but this isn't spitting up this is a high volume out the nose throwing up! Melanie has tried changing up the medications and feeds a little to see is that helps. The immediate concern is dehydration and throwing his electrolytes all off because along with the vomiting Witt is still getting 2 diuretics. Melanie called the cardiologists. She is waiting for them to return her call. Other than that.....the days are filled with adjusting and enjoying being home!!!!