Friday, July 31, 2009

UP AT 2AM FOR A VERY GOOD REASON!





Look what Witt did at 2am...He took a 45 minute break off the CPAP!!!!


Witt is doing really well!! Everything is still headed in the right direction. Today he will get several 1-2 hour breaks off of CPAP. The doctors want to make sure Witt's lungs stay fully inflated without the extra pressure that CPAP provides. All Witt's lab work continues to be good and the "numbers" that we watch like respiration rate, heart rate, etc., are very good. The doctors continue to wean Witt off the sedation and diuretics. Dr. Morales(the cardiac surgeon) agreed with the plan for Witt...keep heading on the path to get Witt home. I know my God is Able and yet I am in awe of His work in Witt's life!!! Truly Witt's God can move mountains. He is Mighty to Save!!!
Earlier in the evening Witt enjoyed the television!
Witt at 2am!
video

Thursday, July 30, 2009

IF YOUR SLEEPY AND YOU KNOW IT RAISE YOUR HANDS!

It's tiring work to be in a hospital


Witt is doing well. He continues on the same course of weaning him down or off everything! I imagine this will take a number of days. The cardiologist would like Witt to remain in the PICU while this process takes place. That's Mel's preference too! It means the recliner room for a while but God has really blessed me in that room! It feels like you are living in an efficiency with a dozen or so friends and strangers! All in one room is your recliner, constant flow of fresh coffee, refrigerator, microwave, secretary/receptionist and maid service! There is an amazing bond that God uses to bind people together through hardships. I have been privileged to meet and pray for so many in the recliner room...most have come and left but amazingly the bond remains!

Please continue to pray for Witt...pray that the weaning process continues smoothly. Especially pray that his heart continues to work well and that the mitral valve leaks even less!!! Above all I pray that God somehow uses this walk we are in for His glory...anything less than that is a real tragedy!!

Wednesday, July 29, 2009

GLORY!!

The results are back from Witt's echo. The only negative at all is that the mitral valve is leaking like it was before surgery. BUT the tricuspid valve is doing great and the pressure in the right chamber is totally normal!! Also there is no stenosis with the mitral valve! It appears that Witt being so sick was just caused by fluid overload. That's not completely definitive but it seems more likely now that that's what happened. The next few weeks are still really crucial as Witt is weaned off or way down from everything that they were doing to get him back to this place of health. Witt is on a very high dose of diuretics, pain medicines still, breathing treatments, and the CPAP. The cardiologist said that they are going to wean him very slowly and begin other things like feeds very slowly. Nobody has mentioned a time frame...Witt will be in the PICU for some time still. Right now I don't care where he is..my feet aren't touching the ground anyway!!!

Mel finally was able to hold Witt!



video

Witt Reading A Book!


STILL WAITING

We are still patiently waiting for the results of echo done this morning. While we wait, Mel is sleeping and Witt is doing well! These are the times we can be thankful for!!!

Be blessed!
Cheryl

BEAUTIFUL WORDS, BEAUTIFUL GOD, BEAUTIFUL WITT!

Fantastic, Incredible, Great...these words most definitely describe our God but these words were also used to describe Witt by the doctors early this morning!!! Witt is still on the CPAP but hopefully the slow weaning process will begin on that. His blood gases also look really good. He will get yet another chest x-ray to be sure the lungs are inflating fully. Today will also be another echocardiogram. The last one done a couple of days ago was not able to be read. This should show us, the doctors how Witt's heart valves are doing. God has shown us how Mighty He is to Save...please, Lord, continue Your saving work in Witt...ALL to Your glory. Cause Your name to be remembered here!!!

Tuesday, July 28, 2009

BOATSTING IN CHRIST!

The cardiology team just came by. I believe they are amazed at Witt's progress off the ventilator. One doctor said he "looks" better off the vent than he did on. Lord Jesus continue to amaze the doctors and please show us ways to exalt name of Christ that all the glory is given to You!!!

DOING GREAT!

Witt has remained off the ventilator and on the CPAP. He is doing great. His "numbers" remain good and his blood gas (CO2) has been better and better. Witt's CO2 is actually better now than when he was on the ventilator! Dr. Morales stopped by and even gave the thumbs up and said to keep moving forward. I had to chuckle to myself. Isn't that just what Cheryl had posted...that no matter what our circumstances are God's plan moves forward! These next days are very crucial but rejoice with us in what God has accomplished today!!!

FORWARD MARCH

Witt is off the vent and on the CPAP!!! Praise God...He is good ALWAYS!

Please join us now as we pray that Witt's osat (oxygen saturation) stays up and respiratory rate stays down...basically, we really, really need for Witt to take nice, long, deep breaths.

These next days, maybe weeks, will be critical as we wait to see if Witt's heart is able to function properly and control the fluid build up. The doctors don't know what caused the fluid that sent Witt back to PICU this last time. There are several possibilities and we are fervently praying that it was simply a setback from the surgery. Remember, Witt was moved to a regular, low care level room only 3 short days after open heart surgery. There is a very real chance that he just needed more "help" in the days after.

When Witt was moved back to PICU, Karen shared with me something has really made a huge impact on me. She said that God does not take 2 steps forward and 1 step back...His Perfect Plan is always moving forward!!! God knows no setbacks!!!

"So much confidence is packed into the assertion of God's forward march."
-Witt's Great-Great Aunt Nita (No one lives up to that title more than our precious Nita, Grandmama's sister. She is so kind and tender and loving and we simply ADORE her!!!)

Praying and Praising!!!
Cheryl

BREATHE DEEPLY, SWEET BOY!

Karen was with Witt overnight so that Mel could get some much needed rest in the recliners. She reports that he had a good night! Our hope for today is that the vent will be removed today!!! Please join with us and petition that it would be so. The vent number that Mel had been concerned about being up is back down again!

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. -John 14:27

In Christ Alone,
Cheryl

HOPEFULLY EXTUBATE TODAY!

Witt had a good night. He slept well or at least I slept through everything! The number that was a little high yesterday is lower. Witt has done real well on all the trials. Hopefully the doctor's will extubate today but that decision will be made during cardiac rounds!

Monday, July 27, 2009

2 TUBES GONE...ONE TUBE TO GO!

The decision was made to not try to take Witt off the ventilator today...probably tomorrow. Witt's lungs are not expanding like they would like them to. Probably due to too much fluid. They will really push to pull all the fluid off today and believe it can be done tomorrow. The good news is that the 2 chest tubes are now gone!!! A member of the cardiology team just removed them!!!

THE GOODNESS OF THE LORD

Things are going along the same this morning. As far as we know the plan is to take Witt off the vent today! He did well on all the pressure trial tests. Mel is a little concerned because one of the "numbers" that the ventilator measures is different than it has been. This is where my very limited medical knowledge fails me. I think she said it has to do with the volume of air Witt is breathing but that could be wrong!!! Melanie stayed with Witt all night and just went to the recliners.
Sometimes people wonder how we can be doing this. First, we all do it because of Witt. When our eyes remain on Witt as the earthly prize and Christ Himself as the eternal prize it's possible to keep going. I constantly pray that Christ Himself is Mel and Austan's strength and that He is the very air that Witt breathes. Psalm 28:13-14 pretty well sums it up for me:

"I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; yes, wait for the Lord."

God constantly encourages me with His goodness. I see it so many ways:
~in the way He carries Melanie and Austan...sometimes simply bringing the next breath!
~in Witt's precious smile even with the vent tube in his mouth and tape all over his face!
~in the comments, prayers and actions of all of you!
~in the way He is at work in the "recliner" room!

The lady(Marsha) that I have visited with over the last few days in the recliner room came and found me yesterday. Remember she was the one that was very angry at God especially for her daughter's suffering and said that God was nowhere around this hospital. I watched as God worked in her life. Yesterday, she came to say goodbye because her daughter was being moved to a regular room...just days after a lung transplant! She had tears in her eyes as she told me of plans to take her daughter on a cruise and so many other things that were never possible. I said do you see that God is here...she said that she did but with a smile said that He seemed like he was way to busy. I said never too busy for her. We both admitted that we still didn't fully (if at all at times!) understand the suffering but it didn't seem to matter as much. This is nothing short of the goodness of the Lord. This is what many times keeps me from despair. This is nothing short of the glory of the Lord!!!

If we need any reminders of why we do this...here it is!!! Do your hear that laughter? That is the goodness of the Lord!!! This video is from a couple of weeks ago...think it warrants being posted again!

video

Sunday, July 26, 2009

4 TRIALS TODAY

Witt is still on the ventilator. 4 trials are scheduled throughout today. This is more trials than he's ever had but they want to make sure he is ready. So far he has done very well. Hopefully the vent will be removed tomorrow! Vent, tape and all, he is the cutest thing. You can tell he is smiling because of his cheeks and eyes. And of course, the vent does not interfere one bit with him looking at the nurse and furrowing his eyebrows! I would imagine that the days closely following the vent being removed are very important. Please pray that Witt's heart is functioning well and that he can stay off the vent. Please pray that as Witt goes through this that we all seek the face of God then there will be no doubt Who is our Strength and most importantly for the world to see Who deserves the glory!!! This hospital is so full of God and His glory but if we forget to seek Him, not only will we miss it but most definitely so will the doctors, nurses, patients and families. Please Lord Jesus, touch Witt now in such a way that no human can deny the presence and glory of God!!!
"O Lord, I love the habitation of Your house and the place where Your glory dwells."








Saturday, July 25, 2009

ONE LIFE, ONE GIFT

I was able to spend the morning with Melanie and Witt back in his room. It has been awhile since I have been able to do that and as you can imagine it was quality time. Mel and I were able to talk and I "let" her decorate my face and head with white surgical tape. Witt was able to sleep and get a little rest before the nurses came in with orders to change food syringes, update meds and suction his lungs through the ventilator. Karen spent the night in the room with Witt as Mel used the chairs in the waiting area to get some much needed rest. Yesterday was a fun day/evening with visitors from friends to family. Witt was especially honored to have his Great Grandmama's two sisters come to the hospital for a visit as well. Today they hope to replace the ventilator with the CPAP and give him a little more freedom to move around and to make him more comfortable. He is currently on the lowest level of ventilator assistance.

All our lives are gifts from God that we have only one day at a time. You see that more in a hospital than we do in our busy lives. Because we forget that, we sometimes forget to just live. We forget to share. We forget to love and we forget to forgive. Those are all good reminders for me today and everyday that God gives me. It is in these days that I am most alive to the love and knowledge of God at work in His loving way. Thank you for always sharing your love and prayers for Witt, Mel and Austan. We are all blessed knowing that God is using so many warriors of prayer to strengthen and comfort our family. Have a great day.

Friday, July 24, 2009

NO RESULTS YET

Not many things have taken place today. Witt did have his echocardiogram but we don't have any results. The technician had a hard time getting a good look because of the chest tubes and incision. Maybe we will have the results tomorrow. The ventilator was turned down this morning and has stayed on low settings all day. Hopefully tomorrow it will be turned down even more then the next step would be to take Witt completely off. Usually not many changes take place over the weekend but the doctors want Witt taken off the vent if he is ready and not to wait till Monday. All in God's timing!

SOME IMPORTANT DAYS AHEAD

Today the plan for Witt is to get him prepared to come off the ventilator. Not only do they want the vent settings to be as low as possible but they also want Witt's feeds in a good place and the medicines right. They want the "whole package" to be in a good place. There is a really good chance that Witt could come off the vent this weekend. Once Witt is off the vent the days, maybe a couple of weeks following that are critical. Dr. Morales came to Witt's room last night to tell Mel and Austan of a possible scenario that could play out with Witt. It could be that Witt will not be able to handle being off the vent...that Witt's valves are leaking too much and will fill the lungs with fluid again. If that happens Witt would require another heart surgery. Dr. Morales was incredibly compassionate as he delivered this news. He also said that one possibility would be that Witt will come off the vent, do well and can go home with them managing the leaky valves. He said he would be remiss if he didn't let Mel and Austan know that the doctors have discussed the need for more heart surgery as a real possibility. An echocardiogram is scheduled for today to look at the heart valves. We know that when Witt was really overloaded with fluid the valves (including the one that Dr. Morales repaired) were leaking quite a bit causing back up into the lungs. My prayer is that now that all the fluid levels are back down so that the valves are back to where they were immediately after surgery...that is a possibility. Please, please pray that Witt can come off the ventilator soon and that his heart is functioning good! I know that God has a plan and that with Him it is possible for everything to be working fine. I kneel before our amazing God with a hurting heart...asking God to do whatever it takes to heal Witt's heart. God says to ask Him. I believe He wants us to ask Him so with a spirit of thanksgiving...remembering all that He has done for Witt...I do present my petitions to Him and allow Him to give me His peace that will guard my mind and my heart. Right now our minds and hearts need to be guarded as we wait on God's plan for Witt to be revealed! Please pray for Melanie and Austan...this walk is unimaginable but God continues to strengthen and carry them.

Thursday, July 23, 2009

9 MONTHS OF LOVING YOU

WITT,

It's hard to believe it was NINE months ago that we first got to meet you!
We have been overwhelmed with LOVE for you every day since.

ZERO months
ONE month
TWO monthsTHREE monthsFOUR months
FIVE months
SIX monthsSEVEN months
EIGHT months
and now NINE months!
We LOVE watching you GROW little man.

xoxoxoxoxoxo,
Annalee (and all your fans!)

Wednesday, July 22, 2009

A GREAT GOD!

Dr. Macicek stopped by today. He told Melanie that they are hoping that when the fluid is gone that the heart valve will be working better. Tomorrow will be another echocardiogram to look at the valves. Witt is looking and feeling much better! Sometimes when you see him daily it's hard to remember what he should look like. He is all pink and warm not pale, pasty and cold!!! He is still on the vent but actually pretty alert.
Only our Great God could bring blessings out of this hospital stay. One of those blessings for me is getting to visit more and more with Austan's family...the Witt's (where Witt's great name comes from!) and the Luphers. I think since we all live in or near the same city I just take for granted that we would get to know each other. I am grateful for all their efforts to come to the hospital to support Austan and Melanie and for the chance to know them better!
Another blessing is the opportunity to share my God, my faith with others as God leads! Today I met a woman named Marsha whose 16 year old daughter has cystic fibrosis and just had a lung transplant. I am not sure if she is a fellow believer in Christ but I do know she thinks God is no where near her, her daughter and this hospital. I was trying to take a nap when she just started talking. It was an opportunity that I wasn't looking for but no doubt presented by God! At one point I told her that I don't know, that I don't have near all the answers for her or for Melanie or for me! I said that I wished I could just say a truth from the Bible and things would be all better but it doesn't really work that way...only God Himself can truly comfort with His truth! She said it was at least refreshing to hear someone say that don't have the answers. I told her that I don't understand God's actions a lot of times around here but that that's when I have to trust in His heart and the truths I do know about Him. We talked a little longer then she was done. Please pray for Marsha and her daughter, Megan. I have been praying that God would in a real tangible way show Himself to her. What I witnessed was a Faithful God, the Relentless Hunter who doesn't give up on us even when we give up on Him. He continues to bless me!!!

SIGNIFICANT IMPROVEMENTS!

Those are the words of the attending cardiologist..."significant improvements!" Witt is also urinating well. They will keep a close eye on his creatinine level which is still a little elevated. The renal doctor said they expect that to go down over the next couple of days. Today's plan is to keep pulling fluid off of Witt and get his heart back to optimum along with an eye on getting him off the vent when possible. The cardiologist assured Mel that it shouldn't be difficult to take Witt off the vent when the time is right because all the vent is doing for Witt is helping him expand his lungs. If the fluid continues to come off like it has in the last 24 hours Witt should continue to improve. The plan is tomorrow to do another echo on the heart once more fluid is removed and see what is happening with the valves then. All I can say is "thank you" to each and everyone of you. I pray blessings and peace for each of you today. Our God is Mighty to Save...glory!!!!
~Karen

STILL A BALANCING ACT!

Witt seems to be a tiny bit better. There are still somethings out of balance. Now his sugar is going down and they aren't quite sure what is causing that. They are giving him glucose for it. Also, Witt still needs to urinate more. He does have some output but they would like him to do more. His body temperature is much better. He seems pretty comfortable on the ventilator and hopefully he won't be on it for long. They have just drawn more blood for the blood gas test. I continue to pray that God reveal His plan for Witt. I find rest knowing that God does have a plan and is ultimately in control!!!

Tuesday, July 21, 2009

NUMBERS GOING IN RIGHT DIRECTION!

Austan sent this text from Witt's room:

CO2 is at 59(it had been in upper 70's). PH is at 7.3 and Witt's bicarbonate is at 29. Normal range is CO2 in 40's..PH is 7.3 and bicarbonate is 24. We are headed in the right direction.

~Karen
AMEN...Glory!!!!

NEVERTHELESS

Nevertheless...I will praise Him. Please, Lord fill us with praise. Father, You are worthy regardless of our circumstances. Tonight we all stand in the gap for Witt, Melanie and Austan and praise You! Lift their downcast souls and remind them that You truly are a loving God...that You love Witt more than we could imagine. Father, on the authority of Jesus Christ I ask you to direct the doctors...to heal Witt...to touch Melanie and Austan...all glory and honor is Yours!

PUTTING WITT ON VENTILATOR

The decision has been made to put Witt back on the ventilator. His CO2 level is too high and needs to come down and the ventilator will help his body heal faster. Please pray for all of Witt's fluid and blood levels to balance out to normal levels. Also, Melanie and Austan need to be lifted up because this is very difficult for them to see Witt back on the ventilator.

A VICIOUS CIRCLE

Witt seems to be in a vicious circle with fluid balance, diuretics, urinating, breathing, heart. So many things all hinge on each other! Everything just is out of balance. We don't know anything on the heart valve. The doctors said the carbon dioxide level is affecting Witt's heart. The overload of fluid is affecting his lungs and since they had been worried about the diuretic pulling too much sodium he was taken off that. BUT Witt wasn't urinating real well probably due to the surgery (going on the bypass machine really can affect kidneys) and he has been given great amounts of Motrin even by IV. Witt has now been catheterized to get some of the fluid out of his body. Renal was called in and is not worried but they will watch Witt closely! Witt is also getting some blood! Please Lord, intervene and touch Witt...touch him directly...remove Witt out of this vicious circle!!!

SETTLED INTO PICU

We are all settled back into the PICU. Cheryl and I are in the recliners and Mel and Austan are with Witt. I haven't gone back to see him. Witt is on CPAP but not liking it much! Austan said that the doctors believe Witt has too much fluid right now and is on fluid overload. His fluid has been cut way back. He has been given a sodium "pill"...maybe a bicarbonate... to help the low sodium. Melanie and Austan are doing amazingly well...concrete examples of answers to your prayers!!

Melanie just texted...did an echo on Witt's heart and valve might be leaking again. Not for sure.

BACK TO PICU!

Please pray on Witt's behalf...and Mel and Austan! Witt is being moved back to PICU. His carbon dioxide is in the upper 70's. The move will happen fast. Pray for healing, strength...pray for each of us to fall on God!!!

MOST LIKELY MOVING

The cardiologists are most likely moving Witt. Right now the debate is whether to move him to the step down room (which is higher level care) on this floor or down the the PICU. I believe the determining factor will be the carbon dioxide in his blood. If that is too high which means his lungs are getting a worse Witt will go to the PICU. Please pray once again that Witt is in God's perfect medical plan. God has been reminding me that even if circumstances don't appear this way that God doesn't take 2 steps forward and 1 step back...He always moves us forward in His plan. We have to trust in God's heart...Who He is!! Please, Lord, Your perfect plan!

Also, we need prayers again for Witt to wet his diaper. He needs to get rid of the fluid without a diuretic which pulls too much sodium off!!!

WE NEED AN UPWARD TURN!

Witt is not feeling well at all. His sodium is down even more. They are also watching closely his urine output. That needs to go up as well. Witt's creatinine level has started an upward trend which can reflect kidney function but it is most likely because of dehydration and Motrin (that's been stopped). Witt threw up around 3am and didn't fall asleep till 6. He cried a lot and finally fell asleep with Mel holding him in bed. His oxygen is turned up to 3/4 for now too. Witt is pretty pale so the doctor had blood drawn to also check for anemia. I'll be honest here...I am fighting being down. I am fighting to even make it to the Throne of Grace. I know that Christ Himself is fighting for me. I know that Christ Himself will carry me there. Witt needs an upward turn in his condition and I too just need an upward turn to Him! Please pray for Witt and all of us. Christ who is Our Hope has not and will not disappoint us! I pray that I will continue to dwell in the shelter of the Most High, so that I will abide in the shadow of the Almighty. I will say to the Lord, "My Refuge and my Fortress, My God, in whom I trust!"

Monday, July 20, 2009

IV FLUIDS

Witt has thrown up a couple of times today and his sodium level is still too low even though the diuretic was stopped. Now he will be given some fluids by IV. The doctor will watch his fluid levels closely especially the amount of fluid draining from the chest tubes. What Witt needs is the sodium level to come up and the fluid from his chest to go down! He is still pretty lethargic which is expected with the low sodium.

He just doesn't feel that good!!!

STOPPING DIURETIC

Just got word that Witt's sodium and chloride numbers are still low. This could definitely make him lethargic. This along with withdrawals from the methadone could make Witt really not feel good! For now the diuretic is being stopped as well as the weaning process. The doctors will monitor Witt's fluid levels very closely!

WITT AND MELANIE

Thank you for all your faithful prayers for Witt. This morning he doesn't seem to feel well. He threw up quite a bit early this morning. His breathing rate might be a little elevated. The worry is always that he might aspirate on the vomit and end up with pneumonia from that. Also Witt's electrolytes are still not right. His sodium continues to be low so the doctors asked for urine to be tested. This gives a little more detail than the blood test.
Last night when I got down here Melanie said she was worried about Witt. Please also pray for Melanie...she is worried and worn out. She is going on 6 weeks with him this time. A while back Melanie figured out that Witt has been in the hospital at least 15 weeks. Yesterday Jim and I listened to a sermon by Gregg. He used the antique car ride at Astroworld as an example. He said it was his favorite ride when he was little. He didn't realize that down the middle of the lane was a steel bar that would never let him get off track. He asked what keeps us on track especially during times of suffering. I can tell you this...it is God that keeps Melanie and Austan on track...that hasn't changed. Right now Melanie just needs a little gas in the engine! Would you please pray that the Holy Spirit strengthen her and encourage her. That Melanie is filled beyond measure to continue on the track that she is on for Witt!

Sunday, July 19, 2009

ROUGH DAY!

Today was a little bit of a rough day for Witt. He's been pretty cranky all day. The stroller seems to be the one place he likes! Witt is being weaned of the methadone so that may be some of the issue. He also has the 2 chest tubes still in which are incredibly painful! Not a lot of medical changes have taken place over the weekend...as I said before the hospital comes to a screeching halt on Saturday and Sunday! Please pray for some relief for Witt. Pray that the chest tubes can
be removed very soon!

If Witt could just get the whole hand in his mouth he would be happier!





Witt still managed a lot of bubbles today!
video

Saturday, July 18, 2009

ELECTROLYTES

This morning the doctors said that Witt's electrolytes are a little out of balance. He is being given a pretty good amount of diuretics to not only dry out his lungs but also stop the fluid in the chest cavity. Yesterday the attending said they were going to back down on the lasix but the surgeon later said they need to push to dry Witt out. I am asking God to dry Witt's lungs, stop the chest cavity from producing fluid (inflammation from surgery) and to reveal to the doctors His perfect medical plan for Witt! I think that sometimes we forget that God truly is the Great Physician...the Greatest Physician!!! God doesn't need medical school...medical schools get all of their knowledge from Him! And God already knows every test that will be run on Witt and its results! This is why I trust in God and His medical plan for Witt!


Yesterday, my mother (Melanie's grandmother and Witt's great grandmother) along with my sisters came to the hospital for a birthday lunch for mom. Mom turned 78 and has always had a special way with grandbabies and now great grandbabies!



video

Friday, July 17, 2009

EL SHADDAI!

Witt seems to be doing very very good! He is definitely improving. The cardiologist believes the chest tubes will come out tomorrow but that is still a little "iffy". Witt's oxygen had been turned up to 3/4 but now is back down to 1/2. The doctors want him to remain on continuous feed which definitely sets better with his stomach. After the tubes come out, the feeds will be worked on to get Witt back to his normal eating at home. I am amazed that at this time a week ago Witt was having open heart surgery. I am amazed at our God...El Shaddai...Almighty...He is Enough! Whatever we (Witt and all of us) have needed, God has been and will always be more than Enough to meet it. Thank you, Lord...all glory and honor is Yours!!!

video

Thursday, July 16, 2009

ON THE MEND

Witt seems to be doing better with the feeds. The doctors want him moved around a lot...siting up, taken for walks. His lungs are a little junky and the right upper lobe has pockets where it is collapsed. The doctors have stepped up respiratory treatments. This isn't surprising with the surgery Witt just went through. What is surprising is how fast of progress he has made! In many ways Witt is back to his old self...smiling, talking, trying to get both fists in his mouth. Hopefully he will get the 2 remaining chest tubes out before too long!!







Feeling Better!




















STROLLING!!!











video

UPSET STOMACH!

Please continue to pray for Witt's stomach. He has thrown up 4 times in the last 24 hours. The doctors do still think that Witt will feel much better when the 2 remaining chest tubes can be taken out. 2 of the times he threw out were right after the nurse had to pull on these tubes to make them drain. The doctors are pretty much trying their best to keep Witt's feeds about the same...30 ml's an hour on a continuous feed for now. For now Melanie and I spend most the days watching dvds and the cranes out our window. Texas Children's is building a new part for maternity. We are on the 15th floor so one of the cranes "arms" is level with our window. Melanie and I are used to it swinging real close but the reaction of some of the medical staff is the highlight of my day!


The cranes!!!
video


video


The best entertainment!
video

Wednesday, July 15, 2009

LAZY DAY!

Witt's had a good day. He did throw up again this evening but seems to feel better. I know the 2 chest tubes really hurt him...hopefully those can come out soon. He is completely off morphine and cut way down on methadone. Dr. Macicek came by today to check on Witt. He puts up with so many questions from me! These days are more filled with people just stopping by for visits than medical things...unbelievable since just last Friday Witt had open heart surgery!!!

Just some pictures from the day...Witt stays pretty still since movement is painful!




EXALT THE NAME OF CHRIST!

Yesterday as I wanted so badly and was praying for Witt to wet a diaper this is what the Holy Spirit impressed upon me to pray fervently: that God would cause His name to be remembered! I asked God to just make Witt wet his diaper, to continue to heal Witt but by doing that I wanted the name of Jesus Christ to be exalted above all things! Today I am asking God to keep me positioned properly before Him...to kneel at His altar and offer myself as a living sacrifice so that He can cause His name to be remembered in this place today!

Psalm 20:24 "You shall make an altar of earth for Me, and you shall sacrifice on it your burnt offerings and your peace offerings, your sheep and your oxen; in every place where I cause My name to be remembered, I will come to you and bless you."

Witt spent last night in his new room. Which also meant a bed for Melanie. The progress that Witt has made can be described by nothing less than God! God causing His name to be remembered...blessing Witt! Witt still needs prayer for his stomach to settle down. He just threw-up a lot. He is on a continuous slow feed and that seems to help. I kneel today at God's altar offering my "sacrifices" and asking God to settle Witt's stomach down...to do this seemingly small thing and yet bringing Himself great glory. Lord, cause Your name to be remembered at this hospital today!!!

Tuesday, July 14, 2009

YES!!

WITT PEED...THANK YOU, LORD!!!!

PLEASE, LORD...A WET DIAPER!!

Witt still hasn't wet his diaper! I am glad that our God is concerned about even this. I am not sure I've ever asked God to make somebody pee but He is just that kind of god...God of all gods...that cares about the details of our lives!!! AND He is Able to intervene!

NEEDED PRAYER!

Please pray that Witt will start urinating. I am not sure he has actually peed since the catheter was removed. He definitely hasn't in the last 12 hours. The nurse in the middle of the night put a catheter in just long enough to drain the bladder some but didn't leave it. The doctors were hoping Witt would start urinating on his own. This can happen after surgery but of course in the back of our minds is the fact that Witt's kidneys have some issues too. They are also lowering his morphine because that can keep be contributing. Please, Lord, touch Witt's bladder and cause it to work...in the process cause Your name to be glorified!!!! Witt is also being put back on the continuous feed. He was spitting up pretty badly the all at once feeds.

Mel has been able to hold Witt a little bit now that most the tubes are gone!

Also, in your prayer time would you please lift up Jasmine?!! She is the 3 year old daughter of the receptionist in the CVICU waiting room. Jasmine has a very rare case of MS. She lives at home on a ventilator/trach. They were told she would never sit up but she does now. They were told she would never talk but boy does she!!! This is great evidence that God and not doctors has the final say!! Thank You, Father that You make the final decision and those decisions are not based on statistics that humans keep track of!!

Monday, July 13, 2009

GLORY TO GOD!

Witt is doing great! Just being able to say that brings me to my knees thanking God and yet makes me want to stand and praise Him. Maybe I have a little better understanding of the song "I Can Only Imagine."
"Surrounded by Your Glory, what will my heart feel?Will I dance for you, Jesus? Or in awe of You, be still?Will I stand in Your presence, or to my knees will I fall?Will I sing 'Hallelujah!'? Will I be able to speak at all?I can only imagine! I can only imagine!"

I still can really only imagine face to face, unveiled seeing Christ but right now all at once I am dancing before Him and bowing down worshipping Him! Witt is almost tube/line free. The catheter has been removed the center drain tube, the artery line, and the pacing wire are all gone! He still has two drains and the PIC line but that's it. He is on oxygen but his Osat stays at 100. Witt's respiratory rate is staying in the normal range which in the past would be real low for Witt!! I just find myself sitting here smiling and fighting back the tears of joy!!! The next step will hopefully be moving to a room on 15. For now I am thanking God for the CVICU...the doctors, the nurses, all the staff!
Raise your hand if you feel better!


















Sunday, July 12, 2009

RESTING

Witt Rests!!

Witt is resting with the aid of some good medicines. He is running a very low grade fever but the doctors are not concerned. As you can see in the picture, Witt remains off the CPAP and is just on the nasal cannula. You can also see the top of the incision in the picture. All the stitches are on the inside and glue was used on the outside...amazing! Thank you for the prayers today and the birthday wishes for Melanie...all your support continues to amaze and encourage me. I am asking God to bless each of you as He is glorified in your lives!
~Karen

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!

Saturday, July 11, 2009

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

Friday, July 10, 2009

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

Thursday, July 9, 2009

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!
video

Witt "brushes his teeth"!
video

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

Wednesday, July 8, 2009

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




Tuesday, July 7, 2009

"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!






Monday, July 6, 2009

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!

Sunday, July 5, 2009

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.

video

Saturday, July 4, 2009

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!

Friday, July 3, 2009

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!