PRAY FOR WITT'S PAIN TO GO AWAY!

Witt is in quite a bit of pain. He is still moaning even though they were able to also take him off the CPAP. The surgeons are talking with the nurse trying to decide what else can be given to Witt for the pain. Please pray that God Himself eases Witt's pain and pray for Melanie and Austan!!! Nobody knows better than the Father what it feels like to watch your child suffer!!

HAPPY BIRTHDAY MELANIE!

I can't think of better birthday present for Mel this day than Witt coming off the ventilator. Around 6:30 the doctors took Witt off the ventilator and he is breathing on his own with a little help from a CPAP....Happy Birthday, Mel...all good gifts truly are from God!!!! Melanie, 24 years ago we celebrated your birth and today we celebrate your life! We are going to have the birthday party when Witt is out of the hospital but all day your family celebrates your birth, your life, who you are in Christ!!! We love you, Melanie!


Please pray for Witt right now. He is breathing fine but is pretty agitated even with morphine, tylenol and ativan. The concern is that it really affects his blood pressure. He is squirming and moaning. Melanie and Austan stayed all night with him and are now at the hotel getting some rest. It sure would be another great birthday present for them to come back in a couple of hours and Witt to have settled down! I am praying for comfort for Witt...for God to ease his pain and cause him to sleep. I still haven't quite grasped that in the last 3 weeks we moved from draining the fluid around his heart to maybe needing to cut a window in the sac to full open heart surgery! It's times like these that I understand why God just asks of us and gives us the grace to live one day at a time. Lord, I thank You for today, for the grace to live abundantly today and I especially thank You today for Melanie!

GOOD NIGHT!

Witt had a really good night! The doctors are still planning to wean him down on the vent...depending on how he tolerates that, they might take him off later today! Austan shared another thing that Dr. Morales said that I think is very encouraging...when explaining about Witt's anatomy, Dr. Morales said that there things that are abnormal but it's functioning normally and he would take that any day over a "normal" heart that's not working properly! Amen!

The next few days will surely be filled with ups and downs but I pray that Mel and Austan will their faces upward! I was walking today and heard a song that made me think so much of Witt and the way his life has touched so many...Mel, Austan and Witt, thank you again for sharing your journey with us! You have encouraged MANY of us to come back to the "HEART of worship!"

"And, it's all about YOU, Jesus!!!"
~Cheryl

SURGICAL REPORT!

Dr. Morales was able to do fairly minor repairs to Witt's mitral valve and it is now functioning normally! He said that the anatomy of the valves, both mitral and tricuspid, is abnormal but does not affect the function. In fact, he didn't do any work on the tricuspid valve. The pressures that had been high, 20, are now 7 and within the normal range!!! As far as the mitral valve, Dr. Morales was satisfied with the repairs but did say that it may or may not require more repairs in the future...the encouraging news is that Dr. Morales said that he could repair the mitral valve 5 more times before even having to replace it...this is WONDERFUL news because Witt needs to grow up a lot (teenager, at least) before the valve is replaced.

As I type this update, we just received a WONDERFUL text from Mel...she and Austan are back with Witt for the first time since surgery...Mel has been extremely nervous about seeing him but she reports that "he looks ok, not as bad as I thought." He is still at risk for a lot of complications but the doctors aren't any more worried about Witt than any other child who just had heart surgery. In fact, she made my day when she said that my oldest two kiddos, Connor and Kelsey, can come see him!!!

All in all, it has been a peaceful day filled with lots of joy! And, as I leave the hospital later this evening, I'll have an extra bounce in my step and praise in my heart!!!
"Let my lifesong sing to you!"
Humbly and gratefully,
Cheryl

UPDATE!!!

Mel and Austan have not talked to Dr. Morales yet but they just got word that Witt is closed up and is having another echo now. We don't have any real definite idea about recovery but have been told that he'll most likely go to CVICU then PICU then a room on 15. Poor little guy will be in a lot of pain.

The mood here has been incredibly upbeat...lots of laughter from all 23 of us in the waiting room with a 6 person limit per patient!!! In all honesty, God's presence is so very OBVIOUS! Your prayers have lifted us...may God bless YOU today!

We will update just as soon as Dr. Morales comes in with his report!

UPDATE ON VALVE

Mel and Austan just got word from the OR...the surgeon, Dr. Morales, did some repair work on the valve but we don't know the extent yet. Now, they are warming Witt up, backing him off the bypass machine and watching for bleeding. Then, it will take another hour or so to sew him up. (Mel is very relieved that Dr. Morales takes his time "closing up" and uses more sutures than the other surgeons!)

We will update asap!!!

SURGERY UPDATE!

The heart sac has been successfully removed! Apparently, the sac was "very constricting." We are praying that is good news...hopefully, the removal of the constriction will allow Witt's heart to function normally.

The surgeon, Dr. Morales, wants to get a "direct look" at the valve so Witt is on the heart bypass machine and they are going in now to closely examine the valve. Please pray that the doctor won't need to do any repair work on the valve! We should know within the hour.

On my knees!
Cheryl

TAKEN TO HOLDING AREA

Witt is waiting in the surgical holding area with Mel and Austan...he's one step closer to surgery! (Would you believe that after all the waiting, they came to take Witt EARLY?!?) As we wait for him to be taken into the OR, we praise God our Father that, as Christians, we are in a "heavenly holding area!"

Please pray that Mel and Austan actually "feel" God's presence today as they wait anxiously throughout this surgery. I can't even begin to imagine what they are feeling right now...I plead for peace, an unimaginable peace, to completely overwhelm them today. May the Great Physician literally guide the surgeon's hands and eyes. And, it is my fervent prayer that Kingdom Purposes be carried out in the OR today...I pray that the Holy Spirit is so evident in that room that the hearts of the surgical team are forever changed!!! It's a great day to do some showing off, God!!!

For now, we wait...we will keep updating and we beg of you to keep PRAYING! Stand in the gap for Witt, Mel, Austan and our entire family as we trust in the Lord and His PERFECT WILL for our Witt.

In Christ,

Cheryl

STILL ON FOR TOMORROW MORNING!

The latest we were told is that Witt is first which means he will be taken 6:30 -7:00. That's if everything goes as planned! Please pray for Witt, Melanie and Austan. I can't imagine what this is like as a parent. I will post updates as I can. Right now I know the surgeon is going open Witt's chest by going in through the sternum, will remove the sac around the heart and look at the mitral valve with a scope down Witt's throat. The surgeon will decide right then whether or not to do any sort of procedure on the mitral valve. If he does, Witt will be put on the heart bypass machine, his heart stopped and the valve worked on. This would also make Witt's recovery time longer and more difficult. Please, Lord, surprise the doctors by how good the valve looks! Let it be evident that Witt has been touched by his Creator, by the hand of the Living God...all glory and honor is Yours!!

FIRST FOR TOMORROW!

Witt is scheduled first for surgery tomorrow morning! An emergency or an organ becoming available could still bump him but this is the closes he has come! Dr. Macicek came by and answered all of Melanie's questions. He also warned Mel that Witt could get pretty "sick" from this surgery. If Dr. Morales chooses to look directly at the valve in the heart and repair it, Witt will go on the heart bypass machine. That will be hard on Witt's lungs. Dr. Macicek said they will want Witt off ventilator as soon as possible but that could be days. Witt could go from the CVICU to the PICU then to the floor. Please pray that God will heal the valve...that just looking with the scope is good enough! Pray for the surgeons...that they get rest tonight and come in tomorrow with fresh minds! I will update with any changes or with more information as I get it!

SURGERY SCHEDULED TOMORROW!

Witt is on the schedule for tomorrow! We don't have the time yet and it still is subject to change if an organ becomes available for a transplant. Melanie jokingly said she would believe it when they wheeled Witt off. The nurse practitioner from the surgery team said don't even believe it then. She said believe it when they call to say Dr. Morales has started. There have been cases where the child was on the table ready to start and the call came in that an organ was available. The surgery was postponed. As much as it seems like that happens all the time, it doesn't but its still a possible scenario. For now surgery is scheduled and the presurgery testing has begun!!!

MORNING TIME WITH WITT!

No word yet on surgery. I imagine we won't hear anything till late today. Witt is scheduled for an echo tomorrow morning(if there is not surgery) to be sure that not too much fluid is collecting around the heart going into the weekend. I continue to ask God to fill me with trust...to fill me with contentment! Here's are some pictures and video from Witt's day.

Witt sleeps!


Waking up!

Witt "brushes his teeth"!

Nap time! Even Mel's new ipone gets a rest!

WE "HEART" WITT!

Maggie, our good friend from the cardiac clinic, brought Witt this heart pillow! She just got back from vacation, caught up with the blog and came to visit Witt today. She also brought me a medallion that on one side says: "This is the day the lord has made. Let us rejoice and be glad in it." The other side says: "One day at a time." True words of wisdom!! We will rejoice tomorrow even though surgery will NOT take place. Witt is on the "maybe" list for Friday. Rejoice with us in each and everyday...surgery or no surgery!!!

WAITING FOR ROUNDS

There is no word yet on surgery. So we continue to wait! It certainly is a blessing to be waiting in a room. Pretty much 24/7 Witt has praise music playing (Praise Baby CDs) or now he even sometimes watches the Praise Baby DVDs. I'm not sure Witt benefits as much as I do from the constant praise. Truly God does inhabit His praises! It's basically impossible to remain impatient or downcast with the music and the words of praise filling Witt's room. The doctors are still increasing (along with being fortified) Witt's feeds. He is not gaining back the weight like they would like him to. This is probably due to the fact that his heart is having to work a little harder so his body is burning more calories. Right now Witt is on a continuous feed instead of the way it was at home where every 3 hours he would be fed for 30 minutes. Obviously this is a much slower push of milk. The amount has been increased to a total intake of 120ml per 3 hours. He had been on 90ml...all of it is fortified to increase the calorie per ounce. The amount will probably be increased even a little more. Please continue to pray for God's perfect timing for surgery and for Witt to gain weight and be strengthened during this time!

Witt watching the Praise Baby DVD's

"I WAIT FOR THE LORD, MY SOUL DOES WAIT..."

Witt's surgery might be Thursday but it might not. Dr. Morales is right now doing a lung transplant which tosses the schedule out for now. We have learned to not be the least bit surprised by this! Right now we are enjoying being in a room which we will remain in until surgery. Until surgery, we wait. We strive not to wait as the world does but as Christians who know and trust in the Lord...who trust in who He is and His perfect timing!

Witt is either within arms length or resting in the bed with Mel!

SURGERY PLANNED FOR THURSDAY

"In a man's mind he makes his plans but God directs his steps"

Witt is now in a room on the 15th floor! His surgery is scheduled for Thursday. I continue to ask God to direct our steps and have the final say in exactly when Witt's surgery does take place. For now the plan is Thursday! For now we are in a room with a couch/bed and our very own bathroom! Witt continues to get stronger and gain the weight back he had lost and Melanie gets to enjoy holding him.

NO NEW SURGERY DATE YET

Still no word on the new time for Witt's surgery. Melanie did ask if we can get moved to the 15th floor. Not sure really if that will happen. The cardiologist is hesitant to move Witt if surgery is scheduled for Tuesday or Wednesday. Melanie pointed out very nicely that being scheduled doesn't mean it will actually take place and she would really like to be in a room at the first chance while we wait! I continue to pray for God's perfect timing and trust that each time Witt is bumped it is nothing short of His hand. For now we are enjoying the move to the other side of the room. Now we have the windows to look out of!

NO SURGERY MONDAY!

The whole presurgery process had started then just a few minutes ago Melanie was told that surgery wouldn't be Monday. Late last night emergencies came in that once again bumped Witt. They aren't sure when it will be scheduled next so they are looking into at least moving Witt to the 15th floor. I continue to pray for God's timing and now I need the peace and patience to wait on it!!!!

Austan, Witt and laughter truly is the best medicine! Witt has always chuckled at his daddy more than at anybody else.

SECOND ON THE LIST FOR MONDAY

Just got word that Witt is second on the list for surgery on Monday. They will try to start between 11am and 1pm. Witt's start time depends on the surgery before his.

Today was a wonderful day even though we are on Day 21 in the hospital. Mona and Deela both brought meals down to help us celebrate the 4th! Nothing says "Happy 4th" like stromboli, brownies, baked potatoes and black cake!!! Here are some more pictures from the 4th!

HAPPY 4TH OF JULY!!!!

"It was for freedom that Christ set us free..." Galatians 5:1.
Thank you, Lord, that we live in a nation where we are free to worship You! Everyday may we take advantage of that freedom. Today I ask that You bless the men and women and their families who fought for this country...who showed the greatest love by laying down their lives for their brothers.

The surgeon, Dr. Morales, came by yesterday and talked to Melanie and Austan about the surgery set for Monday. The chances are very great that the surgery will indeed take place on Monday. Witt continues to get better and is probably in optimal health for the surgery. Dr. Morales explained how and what he would do. He will have to go in through the ribs to remove the sac and he will take a good look at the valve with a scope down the throat once Witt is sedated. Dr. Morales will decide for sure then if any repair is needed on the valve. I admire Mel for so many reasons one of which is her maturity and boldness at such a young age. After Dr. Morales finished, Mel did say for him to not take this wrong but who would be sewing Witt's chest up. She said that she knows that surgeons are usually more concerned about the inside than the outside and she wanted someone good to sew him up...O, the Melski!!!! He was not offended at all and said he actually did all his own closing up and used many more stitches than most. Melanie is bold...bold for her son...bold for Christ!

NEVERTHELESS!

Raise your hand if you are happy to have a nasal cannula and no CPAP!!!!

As you can see from the picture, Witt rests much better with the nasal cannula! Right now this is just a long (3hour) trial but Josh, the respiratory therapist, said that at rounds this morning it might be decided to leave Witt on the cannula and no more CPAP. The worry about being off the CPAP is that the right lung might get pockets of collapse. The CPAP blows stronger which helps to inflate the lungs. Witt's surgery is still "scheduled" for Monday. Hopefully that is the day! Monday will mark 21 days in the PICU for Witt and recliners for us! Witt has had 7 or 8 roommates...I've lost count! Austan and Melanie continue to handle all this in such a way that honors their God!

The little baby that was on life support was taken off yesterday and passed away late evening. I can't even imagine what the family is going through right now but I know they have chosen to go through it clinging to Christ. I had the privilege of praying with some of the family members who were standing in the gap for the baby and parents just shortly before she died. As much as I thought I could encourage and minister to them, I walked away strengthened by their faith! They asked, begged God to heal the baby, to make her strong but the last several minutes of prayer was filled with them just saying, sometimes gloriously shouting: "Nevertheless, I will praise You! Nevertheless, I will praise You!" That was repeated over and over. That's the way the prayer ended. That's the way they left it with God...nevertheless, I will praise You...nevertheless, Your will be done and You are worthy of our praises!!!! Whatever is going on in my life, in Witt's life, I want God to fill me with that kind of faith that I will cry out to Him: "NEVERTHELESS"....glory!!!!

HOPEFULLY OFF THE CPAP SOON!

Witt gets to be off the CPAP 3 times in 24 hours for an hour each time. He actually did very well. Now that Witt is feeling better and alert, he is starting to really fight with the CPAP and cry. Earlier today Witt had an echo to check for fluid around the heart. It showed that there was very little collecting. Witt's oxygen saturation is staying really high which is good. Basically it doesn't come down from 100 so they continue to wean him off the CPAP to just the nasal cannula. He is one happy camper with the cannula and Melanie holding him...so is Mel!

HANGING IN THERE!

Witt continues to do better and better! His lung x-ray looked very good yesterday...the best that the PICU attending has seen. Witt's oxygen saturation level is staying very high (almost always 100) even as he is being weaned off the CPAP. I don't know exactly what the numbers mean but he was at a number 10 setting on the CPAP...is now at a 7...will be turned down pretty soon today AND be given throughout the day trial periods (2 hours) off the CPAP. During this time Witt will be on just the nasal cannula like at home!!! The surgery is not before Monday. This seems to be our new phrasing now..."not before"! The cardiac schedule is always up for change because of emergencies and transplants...as it should be and we would want if Witt were in that position. The cardiologists have ordered an echo today to check for fluid around the heart. A while back the drain was taken out because of the risk of infection but now fluid may collect. Please pray there is no or very little fluid collecting...this could start the whole cycle of why Witt had to be admitted again in the first place. These days are our "hanging in there" days! Please ask God to not just get Melanie and Austan through theses days but for them to be joy filled days. I don't want to just get by as a Christian...I want the very life of Christ to live in us and through us! Today as I was praying I heard God say that we aren't just His hands and feet but we need to the very heart of Christ...a heart that is full of compassion and love for others. These 2 verses keep coming to my mind:

Psalm 4:6 "Many are saying, 'Who will show us any good?' Lift up the light of Your countenance upon us, O Lord!"

Philippians 2:3-4 "Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interests of others."
There are so many opportunities here to look out for the interests of others. God has put before me many people to personally love...to allow Christ to touch and many more to pray for. Here are a few situations that I am asking you to join me in prayer for:

Seth...Witt's latest roommate. He is the cutest 5 year old boy who has a syndrome that affects his midline (basically things down the middle of his body). He is in here recovering from surgery to correct his airways. Seth currently has a trach to help his breath. If the surgery is successful, Seth will not need the trach to breath. That is this 5 year olds desire...that he starts kindergarten with no trach!

A single mom...her 8 year old daughter has pneumonia for the second time in a few months and is very sick. Last night I ran into her outside the waiting room. When I asked how her daughter was she just started crying. The doctors were wanting her to decide about putting her daughter on permanent ventilator, having a tracheotomy or even do nothing! This women has been in PICU with her daughter for as long as we have. 2 nights ago she had to return to her night job 45 minutes away. She now works nights, sleeps a little and drives back to be with her daughter and face very hard decisions.

A 2 month old...she is on life support. The doctors recommended she be taken off a couple of days ago. The parents can't make that decision yet. The grandparents and many other family members have remained here day and night. I can only explain the immediate connection I have with the grandmothers is because of their love of Christ.

Teenage boy...I haven't really had the opportunity to visit with the mother yet. We passed each other in the hall. She did say that he is in and out of the hospital all the time as he awaits a lung transplant.

These are only a few of the patients in Witt's pod. The PICU has 3 pods. So, as you join us in our "hanging in there" days with Witt, would you please pray for these people. I will try to update the situations but sometimes I don't even know what happens. Our paths just cross for a brief time and I am given the privilege of praying. I am given the opportunity to not just look out for my own interests but the interests of others! Thank you...that's what you continue to do for my family as you pray for Witt!

It's been a while so here is a video of Witt...CPAP and all!

THE WAIT CONTINUES...

Karen just sent a message that Witt's surgery most likely will NOT happen tomorrow...in fact, it looks like it will be Monday at the earliest. Karen also said that "Mel is doing great...God's grace truly is sufficient!" Please join us in praying for an abundance of patience as Mel and Austan and all of our families wait for this surgery...all in God's perfect timing!!! Witt is being weaned from the CPAP but will most likely have to stay in PICU until surgery...Dr. Macicek wants him either in PICU or on 15 (which is the "cardio floor") but he would have to off of the CPAP for 15. SO, it looks like Mel will continue to sleep in recliners in the PICU waiting room for several more days...just another way that she continues to amaze me every single day! She has been sleeping in those recliners now for almost 3 weeks. I use the term "sleeping" very loosely as she spends most of the nights back in Witt's "room" in a chair next to his bed and "sleeps" in the recliners as she can. Karen has been with her every night...a true testament to the beauty of a loving family!!!
~Cheryl

SURGERY NOW SET FOR THRUSDAY!

Witt's surgery is now set for Thursday. What's different this time is that he is actually on the computer schedule for then and not just penciled in. Having said that and trusting God for His perfect timing Witt could get bumped again. That would happen if it got "crazy"...Dr. Macicek's words. I think that means that cardiac emergencies would bump Witt but for now he is number 2 on the schedule for Thursday. Mel got to hold Witt today! The nurse helped get all the wires and tube set so Melanie could.