Tuesday, June 30, 2009

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.

HE'S AWAKE!

Witt is still holding his own on the CPAP. The only knock out medicine he is on is methadone and that is being given in smaller and smaller doses every 12 hours. Now when Witt is awake he is playing with hanging toys, smiling and trying to "talk" at Melanie. All this even though he is flat on his back with the CPAP contraption taped on his face. Melanie still hasn't been able to hold Witt but at least now he is interacting with her! Witt remains on the CPAP because it really "pushes" the oxygen with a stronger blow than what the simple nasal cannula does. This helps the lungs to inflate and Witt to take really deep breaths. Melanie is going to ask the doctors if at some point before the surgery Witt can go on the nasal cannula and she could hold him. For right now the surgery is scheduled for tomorrow but as we know that could change!!! God's perfect timing in all things!

Wide Awake Witt!

Monday, June 29, 2009

SURGERY NOT BEFORE WEDNESDAY

Witt has had a great day! They are giving him less and less of the knock out drugs. He's not going into such a deep sleep but it's daytime. Witt seems to like to "act up" at night! He is alert, smiling and playing with his toys that hang even with this contraption up from his nose and two hoses that go back over his face. Witt's surgery is not before Wednesday. There is a possibility that it won't be till Thursday. All in God's perfect timing! I am grateful for this time off the ventilator too. We still don't know who will be preforming the surgery but we have heard Dr. Morales mentioned. Dr. Macicek said he was pretty sure that the surgeon will take a look at Witt's valve and if that needs surgery then the whole thing could turn into 10 hours.
May I simply proclaim the name of Christ! There is such indescribable peace in His presence...when He is your Trust!!!

STRENGTH, PEACE AND MONITORS!

Psalm 29:11:

The LORD gives strength to his people;
the LORD blesses his people with peace.

The resident assigned to Witt asked me this morning how Mel was doing. She said that both Melanie and Austan appeared to be doing very well. I wished I would have had this verse at the front of my mind! Melanie and Austan are living manifestations of this verse. You want to know how Melanie and Austan are doing...this verse is your answer! It doesn't mean that there are not times of mental and physical exhaustion but The Lord is Faithful to fulfill His word. The Lord is Faithful to give Melanie and Austan strength and peace. The Lord is Faithful give Melanie and Austan Himself!

It was another long night but for different reasons than the night before. Last night Witt's heart monitor went off over 40 times. His heart rate would momentarily dip too low...called a "brady". This was due once again to the medications (methadone for one). The doctors are trying very hard to figure out just the right doses for Witt to keep him from having withdrawals and yet continue the weaning process. This was not as serious as it sounds but it is the one alarm that garners an immediate response! The heart rate never stayed down. Usually in the very small amount of time that it took his nurse or any other close by nurse to hustle in, Witt's heart rate was already back up. It was tiring for all except Witt who was just sleeping too well!! It's looking more and more like the surgery to remove the sac around the heart will be Tuesday. The doctors haven't rounded yet so no real new information on it!

Sunday, June 28, 2009

HIGHER CARBON DIOXIDE

Witt is doing pretty well. His carbon dioxide did go up but its probably because he was given too much sedation. The sedation was supposed to be alternated and given every 3 hours but early evening he was given the sedation 1 hour apart. When he is sedated too much, Witt doesn't inhale or exhale deeply so the carbon dioxide builds up. The nurse is going to skip the midnight sedation. Hopefully Witt will be a little more alert and breath deeper. Tomorrow we should find out at least if the surgery is going to be Tuesday or Wednesday and who exactly will be the surgeon. I will definitely post as soon as we know the details of Witt's surgery!

LONG NIGHT

Witt is doing well this morning. Last night, however, around 11pm he had an "episode". The doctor said it was pretty textbook withdrawal but it was a little scary for us. It was apparent that Witt just wasn't feeling good. One of the ways you can tell if Witt isn't feeling well is that his birthmark on his forehead fades and almost disappears. I call it his mood mark! Suffice it to say the birthmark disappeared last night! He threw up, was very pale and had a little different eye movement. The PICU doctor was at his beside for most of this. She said that he wasn't having seizures and that it was very consistent with withdrawal symptoms. Witt had been on morphine for way over a week and so he was put on methadone. The doctors decided a couple of days ago that he was way too medicated so he was taken off all drugs cold turkey. Witt's feeds were also started up yesterday. All this contributed to Witt's episode. He is actually back on lower doses of methadone and another drug and is slowly being weaned from those. One of the side effects of withdrawals is a lot of spit...for Witt its a lot of spit with bubbles! Several times an hour he needs his mouth suctioned out. In the midst of all this are lots of various respiratory treatments which are helping with the right lung which has been deflated some! Once again, I will proclaim the faithfulness of our God! He is Faithful to sustain us, He is Faithful to strengthen us, He is Faithful to be our Peace!!! Once again His hand is also very apparent in all the medical staff here at Texas Children's! Kurt, Witt's night respiratory therapist has worked hard so that Witt can remain off the ventilator. Witt's nurse for the last 3 nights has seen us through some tough and at times scary situations with such calmness and strength. Without a doubt God Himself is our Stay and sometimes He works right through the staff!

Saturday, June 27, 2009

RIGHT LUNG

Witt's latest x-ray showed that the left lung looked a little better but the upper lobe of the right lung is a little worse again. I think it's collapsed a little. The respiratory therapists are doubling up on some treatment and and doing some more often. They are hoping that this will open up that upper lobe! Witt's numbers however remain good. He has definitely been improving in tiny little steps but it wouldn't take much for him to need to be back on the ventilator. I know it doesn't necessarily apply the same but I keep thinking about when God breathed life into the dry bones. I know God wants to breathe spiritual life into dry bones but I am asking God to open the eyes of nonbelievers by breathing physical breath right into Witt's lungs!!!

STEADY

Witt's carbon dioxide numbers remain about the same but last night Dr. Macicek said those numbers are good enough to keep him off the ventilator. Witt is on a pretty strong "blow" from the CPAP to help inflate the right lung. That would need to be slowly turned down before the CPAP would come off and Witt's normal nasal cannula with oxygen would be used. That process could take a couple of days. For now Mel still can't hold Witt because of the CPAP contraption but there is a huge difference in Witt being on this as compared to the breathing tube. Mel calls him her little pig...the cannula and tubes for the CPAP push his little nose way up!

Dr. Macicek said that Witt's surgery most likely would be Tuesday or Wednesday and not Monday. This has nothing to do with Witt but scheduling...praying for God's schedule and not ours!!!

Connor update: Connor, the 17 year old that I had asked for prayer for is doing so much better. He is now off the ventilator that he had been on for somewhere around 28 days! Hopefully, today he can eat. He has lost a lot of weight. His parents remain strong and faithful...ministering to whoever they can in the waiting room!

Friday, June 26, 2009

SLOWLY IMPROVING!

Witt continues to improve slowly! His carbon dioxide level continues to drop. All pain medication has been withheld since yesterday. Witt hasn't gotten his voice back from having the breathing tube in which makes him a mime when he cries! Respiratory continues to come every 2 hours for treatments and he is still on the CPAP. Witt is not out of the woods yet but he is much closer than this morning...GLORY!!

STILL GOING IN THE RIGHT DIRECTION!

Witt's blood test and x-ray both look a little better! Still holding off on the ventilator. I don't know how much progress he needs to make to remain off but so far so good. As Rise' texted me: "I'm sensing some serious mercy!"...AMEN

TESTING BLOOD AGAIN

Nurse just drew blood again. Respiratory has been in "clapping" on his chest and doing a breathing treatment. They are trying to get the right lung to open up. Witt is still not on ventilator. The last blood gas at 10:00 came back tiny bit better. Melanie is about as tired as I have seen her. I can't imagine what her emotions must be!

Psalm 27:13-14 "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."

Father, be our Strength as we wait on You. Show us Your goodness in whatever way You desire. Do not let any of us fall into despair! We earnestly seek You and Your strength!

CARBON DIOXIDE AND RIGHT LUNG

Witt's carbon dioxide level is still really high and his right lung is collapsed. They have tried one last thing and will check blood in 20 minutes. Most likely Witt will have to go back on the ventilator. Please God, let us feel Your presence here!

CPAP

The respiratory therapist put Witt on a CPAP with a nasal canal. This pushes the air more to help inflate the lungs. They also changed Witt's position. This all seems to be helping some. For now he is remaining off the ventilator!

ON THE FENCE!

Right now Witt is pretty close to needing to be intubated again. His overall numbers(respiratory rate, Osat, heart rate) look decent but his carbon dioxide is going higher. If I understand correctly that's because Witt isn't exhaling well enough. The shape of the lungs are another factor. An x-ray has been ordered. Part of the vicious cycle you can get in on a ventilator is that being on a vent can actually cause pneumonia! Witt's lungs actually looked a little worse yesterday while still on the vent and that could have happened. Obviously, Witt will need to be intubated for surgery so everyone is doing everything possible to keep him off the vent for now and give him a break for a couple of days! Dr. Macicek and his other more regular doctors should be in the PICU very soon. Austan and Melanie are wanting their input also! Once again Witt's knock out drugs are being held because he needs to be more awake...moving and coughing however the balance here is you don't want him to be too agitated. It seems like with Witt there are always "howevers." Right now I am praying "however, Christ"!!! Whatever the situation, Christ is overall!!!

Thursday, June 25, 2009

TUBE IS OUT!


Hallelujah! The tube is out! So far so good. They will watch him very closely over the next several hours.

STILL NOT YET!

Please pray...pray for God's perfect details for Witt to unfold!! Now the doctors are not sure that the tube can be removed today. Witt's lung xray looks a little worse today and he has a lot of secretion both of which make them weary of extubating. They just removed his chest tube and want to give him an hour to rest before trying another pressure support trial. If he does well with the trial I believe they will try to remove the tube this afternoon but we wont know for sure till closer to time. It feels like the opportunity was missed by not extubating yesterday. That said, I have to trust and stay in God's peace. I know that God has a plan for Witt and that God is sovereign. The best example of what I am thinking is from my own life. I have made choices that I guarantee were out of God's will. There are "details" in my life that I know God would have wanted to be different but He allowed my free will and wove those choices into His plan for me...otherwise I would have always remained out of His plans. My heart aches that I didn't live out every detail in His perfect will yet I praise Him that He would never allow me to remain there! What I am asking for Witt is that all the choices being made for him are the very detailed choices that God desires...that God trumps any free will of others right now concerning Witt!!! I am asking God to take over in every tiny way!!! And I am asking for God to fill us with a peace that He is in control!!
It has been stated now that Witt will have the surgery to remove the sac on Monday. He doesn't have a time slot yet but they believe it will be then. Once again I beg God to take over all decisions!

Wednesday, June 24, 2009

TRY TOMORROW LATE MORNING!

The decision has been made to extubate tomorrow morning. Once again after rounds so most likely late morning. Witt's feeds will be started again until 4am. I am praying that God is protecting His perfect timing for this...that He won't let anyone or anything interfere with it!

STILL DEBATING!

Dr. Macicek just came in to talk about the plan for getting Witt off the vent. They are a little worried that Witt is sleeping too much and that maybe it is because he is a little tired from having to breath more. However, it could also be the meds he is on. Dr. Macicek originally suggested to wean down the medicine more and try in the morning. He and Melanie agreed to bathe Witt right now, hold off on his next meds and see if he wakes up a little. Dr. Macicek's thinking is also that if you take Witt off too late this evening, the "day" doctors like him who know Witt and his respiratory rate would not be around to decide if Witt needed to be reintubated. They will make a final decision for today in about an hour. This would be a great time to tell you how much I like and am impressed with Dr. Macicek. He is undoubtedly placed in Witt's life by The Great Physician! Obviously, Dr. Macicek has the knowledge but what he also possesses is not always present in every doctor. He has a wonderful combination of confidence and compassion. His demeanor is strong yet caring. AND he listens to Melanie! He listens to what her thoughts are concerning Witt. Please pray for Dr. Macicek and his family. I am grateful that this is the profession that he chose and that he also wanted to specialize in cardiology!

Here is Dr. Macicek at work on Witt. He not only blesses Witt's life but all of ours!

STILL WAITING!

The PICU doctor wants to wait to extubate until Witt is a little more awake. They are backing down a little on the drugs he is getting. I am fervently praying that God take over and this is done in His perfect timing!!! The doctor wants to give Witt the best chance possible. They are very much assuming it will happen today maybe an hour or 2 or later...His perfect timing, please!

REMOVING THE VENT SOON!

As soon as rounds are over the doctors are going to take Witt off the ventilator. Breathe, Witt, Breathe...deep breaths...lots of oxygen!!!

VENT TEST RESULTS

Witt has done well on his ventilator tests...one at 10pm and 4am. The first one went really well. During the second one Witt's oxygen saturation level dropped a handful of times but usually went right back up after a suction. They each lasted 2 hours. The doctors will make a decision this morning about removing Witt from the vent. If they remove the tube but his respiratory rate remains too high or he's having to work too hard then they will reintubate. I am asking that God Himself causes Witt to take slow deep breaths. I keep seeing this picture of Christ literally breathing His breath into Witt!!!
Doctors are still saying surgery will be next week to remove the sac around Witt's heart. I am sure that too will be discussed at rounds which I get to listen in on. I really do feel at times like I have been dropped into the middle of a "Grey's Anatomy" episode!!!

Tuesday, June 23, 2009

THE VENTILATOR

Today is a big day for Witt with the ventilator. They are doing three trial tests to see how Witt does with the ventilator turned off and Witt breathing on his own. He is still completely hooked up to the vent, it is just not helping him take breaths. The problem is Witt is a faster breather at his best. The blessing is this month's rotation has Dr. Macicek in the PICU. Since he is Witt's regular cardiologist he really understands Witt and his respiratory rate. The first test this morning went pretty good but this afternoon his respiratory rate went into the 90's. Even so Dr. Macicek told them to push Witt. He said to do the third test and if the lungs look better tomorrow like they did today they may still try to take the vent out. Dr. Macicek said Witt may just need to be given the chance to breathe on his own. The nurse said that sometimes the tube still in can make it harder to breath on your own. Melanie and Austan want what's best for Witt. Please pray that it is indeed best for Witt to come off the vent. The time is getting close to where if he doesn't come off he will be left on till after next week's surgery. Please pray for Mel. She's tired and wants so badly for Witt to be taken off the vent. Pray that God pours out His wisdom, strength and peace. Pray that we look for and see the hand of God because I know without a doubt He is carrying us!!

EIGHT


Can you guess who is EIGHT months old today???
WITT HARRIS LUPHER!


Dear Little Buddy,
We are celebrating YOU today (and every day).
Here are eight of my all-time FAVORITE things about you...

1) the way you MELT MY HEART, no matter where you are,
no matter what you are doing.
2) the way you have that same EFFECT on every other person who meets you.
3) your expressive EYES.
4) your reddish HAIR.
5) your sweet SMILES.
6) that you made austan a DAD and Mel a MOM.
7) that you made me an AUNT.
8) you're MIRACLE story!

I love you SO dearly Witt.
You are the SWEETEST eight-month-old I know!
Love,
Annalee

Monday, June 22, 2009

MRI AND OTHER UPDATES!

I hope if any medical personnel read this blog they cut me some slack! There is so much information to take in and try to explain. If there is something that doesn't quite make sense, hang in there. I will probably figure it out at some point! Dr. Macicek said that the surgery will not be this week. Witt will remain in the hospital till surgery which should be next week. They are working now to get Witt off the ventilator. Hopefully, that will happen tomorrow! Dr. Macicek also had MRI results...some answers, some questions. He said that the sac around the heart is thick in some areas which could be due to infection or the anatomy. The thought right now is to remove the entire sac. This could be why the heart is not relaxing (the stiffness). That won't be answered till the sac is removed and see what the effect is. Amazing that you don't necessarily need that sac! They are doing more blood tests too...something about the amino acids. Evidently it will then be up to the surgeons to look at all the test results and decided how and what to do. They will decide about taking a look at the valve to see if it needs repaired or replaced. The surgeon will also decide the best way to accomplish all this. Honestly, I think it means going in through the rib cage but I am not completely sure yet!! The need to actually open the heart will be determined on the spot during surgery...once again, this is my understanding right now!!! For now Witt remains in the PICU. We are not sure if he will stay here till surgery or go to another floor. So many unknowns still and information for the doctors to decipher. One doctor said that we sure were being patient and I said we want God's perfect timing. Please pray for discernment for the doctors like they have never experienced! Please pray also that all of this happens is His perfect timing. Pray that Witt can be taken off the breathing tube and be held by Melanie! Please continue to pray for Melanie and Austan to be strengthened with each step! And finally...pray that the glory of the Lord is evident to all through these steps!!!

WITT'S "FRIENDS"

These are Witt's "friends" and bed companions. They just escorted Witt to his MRI. The anesthesiologists recommended that Melanie stay on 3rd because there is no place to wait except the hallway. Witt will be sedated completely and it will take 1 1/2 to 2 hours. We'll take this opportunity to relax in the recliners. Hopefully this MRI will give the cardiologists some information about the sac around the heart. They need to confirm that all that is needed is a window in the heart sac and not the whole sac removed. We still don't know exactly when the surgery will be scheduled...most likely the end of the week. For now we wait. We wait for God's perfect timing!

Sunday, June 21, 2009

HAPPY FATHER'S DAY, AUSTAN!!!




Annalee wrote these words about Autstan when Witt was first born:

AUSTAN-That smile nobody can wipe off your face. The "proud dad" stance that exudes from you. The "proud husband" words that are a constant. Your eyes that are red and puffy from your raw emotions you openly share for your precious son and all of us. The way you can describe in detail each medical aspect of Witt's care and condition.

I wished I was a better writer to put into words the father that Austan is! When Melanie and Austan first got engaged I'll be honest the first thought that came to mind was how great it was going to be to have a "mr. fix it" in the family. I don't believe there is anything around the house that Austan can't fix! Maybe more importantly there is nothing that Austan won't dive in and attempt. He doesn't stop and debate, he just does. It's this same wonderful trait that I have seen since Witt was born. When Witt was born, he was immediately taken to Texas Children's. Austan came back from seeing Witt and was beaming. Austan has never stopped beaming. You see, Austan just jumped right in being a father. God has called Austan to father Witt. God has called Austan to a fatherhood that most men will never experience. Witt responds to Austan in a way he doesn't to anyone else. Sometimes I don't know how Austan does it all. In the midst of going to work are hospital stays, doctor visits and the rebuilding of their house destroyed in the hurricane last fall. But Austan jumps in and keeps going...he just does! Austan has such a strength that is undeniably God. I have seen this incredible strength pour out from Austan in the ER, in the hospital when the doctors said Witt was dying. I also see this strength on a daily basis as Austin is a daddy to Witt. It might be a quieter strength but it is still amazing to watch.

Austan, you are the absolutely perfect father for Witt and husband for Mel. You have jumped in and never looked back. You continue to lead your family clinging to Christ on this journey that must be unbelievably hard at times. I have watched as you have "carried" both Melanie and Witt. I celebrate this Father's Day with you and thank God for blessing not just Melanie and Witt with you but our entire family...Happy Father's Day, Austan...I love you!



video

Saturday, June 20, 2009

IT WAS A BUSY DAY!

Witt had quite a few things done yesterday. Another special echo was taken on his heart to look at the stiffness and the valve. Then Witt was taken to another floor, totally sedated and the PICC line was put in. He got his blood transfusion. Around midnight a pediatric surgeon came by and put the button part in on Witt's gtube!! At 1:00am he was pretty awake and appeared to feel better! The ventilator is still slowly being turned down. Witt will however most likely not be taken off the vent before Monday because on Monday he will have an MRI of the heart done and would need to be sedated for this. Dr. Macicek and the other cardiologists are scheduling surgery for Witt within the next week. This surgery will be to put a "window" in the sac around the heart to keep the fluid from collecting there and at the same time the surgeon will look at the valve. If the valve needs repaired it will be done right there and become open heart surgery. Please pray for Melanie, Austan and Witt!! Pray that the valve is actually behaving the way the cardiac catheter test indicates and no surgery is necessary. Continue to ask God to give the doctors wisdom to sort all this out. AND may the name of Christ be exalted above all as we as a family seek to honor and glorify Him!

Friday, June 19, 2009

GOD NEVER CHANGES!

I sit here with my hands on the keys but don't know quite where to start. Yes actually I do...God is good, God is Faithful, God is Mighty! He never changes which means no matter what we are walking through God's attributes...Who He is cannot and does not change!! The cardiologists talked with Melanie a little bit ago. It's not that we really heard anything majorly different from yesterday it just seemed to hit hard. But God who is Faithful regardless is lifting us up! I will try to sum up what was said. First, any issues that the lungs might have is caused from the heart...the lungs themselves are in good shape. The catheter test showed that the valve is opening okay but still an issue with closing. With as many answers they got yesterday, they are left with more questions because of the answers. Some things just don't add up. Part of Witt's heart is acting stiff. It could be in part from having fluid around it exerting pressure. We do know that very little fluid affects Witt's heart. It could be the heart muscle itself and with that comes a wide range of possible scenarios from okay to not good at all. Once again its all the unknowns. Mel and Austan are walking without knowing much. They are very clearly walking in a way that I think God wants us all to walk. They have to walk in total dependence on God...knowing that He does know all things. He knows all things concerning Witt's heart even if the doctors don't and God is not revealing it yet. The cardiologists don't have too much in their plan because of all the unknowns but they are taking some steps. Within about 30 minutes a PICC line is planned to go in for a blood transfusion. This should help Witt feel better. They are trying to wean him off the vent...it is a slow but steady process. The are scheduling to put a "window" in the sac around the heart so if fluid continues to come back it would collect in the bigger sac around the lungs. Most likely at the time of this procedure the surgeon will also take an actual look at the mitro valve. Sometimes in order to get a definitive answer on the valve the doctor just has to look at it. He would decide right there and do surgery on it if needed. That will probably take place next week. We don't have any idea when and once again its the week end and things in the hospital come to a screeching halt unless its an emergency. Please continue to pray for God to pour out wisdom on the cardiologists. There is no doubt that God is in control. There is no doubt that God is our Strength!!

GOD'S PLAN

Witt is doing really well today. The process of getting him off the vent is underway! Hopefully that will take place sometime today. The cardiologists are still trying to piece together all the information that was obtained in the cardiac cath procedure. I know that God has all the answers! My prayer is that as the doctors search for answers in the test results that they too come to realize that ultimately God is the Answer. He possesses all the answers and He is Truth. I pray that they move from just seeking answers in the results to seeking out God Himself! We are anxious to hear from Dr. Macicek and the cardiology team to see if they have a plan. Great timing...Dr. Macicek just stopped in. He said they will do another echo this morning looking closely at the valve and stiffness and come up with a plan for Witt! Please, Lord...whether they personally know you or not, reveal Your plan for Witt to them!!

Thursday, June 18, 2009

AMEN AND THANK YOU GOD!

I am having a hard time writing this...finding the words to accurately tell you what the doctor said. Basically we were given good news, no news, not great news and the doctors are stumped. First for the great news!! The leaky valve is not that bad and is not affecting the heart. There is no surgery necessary.!!! There is no pulmonary hypertension and Witt's lungs look good. The pressures in the heart chambers are high and right now they have no answers for that. The lower heart chamber is stiff which could be because he is still sick or there are other reasons that are not great. The doctor did say that if you had to choose between dealing with this stiffness in the heart or the valve causing issues, the stiffness is the much better choice! They don't have answers for the stiffness in the heart or why the pressures are elevated but that's the walk of faith that is Witt's life. The rest of us just fool ourselves into thinking we have all the answers! Just two months ago Mel and Austan were told that the leaky valve might need surgery and that babies who have to have this surgery don't live to adulthood. Today the truth that was revealed is that the valve isn't leaking that badly and its not affecting his heart! Join me in praising God! Praising the God of all truth! There are many unknowns still but our God does know all...our God is Mighty to Save...our God is Mighty to Save Witt! Even though there are still unknowns to us what happened today was nothing short of a miracle...GLORY!!!

WITT IS FINISHED!

Witt is finished! Now we are waiting to here the results. I will post just as soon as I can!!

GOING GOOD!

Just got the first update from the nurse. Everything is going good. Witt is doing just fine. More information as I get it!

WITT'S IN THE CATH LAB

They just took Witt up for the procedure. It will probably be close to 4 hours before we hear any results. The nurse will call with hourly updates on how Witt is doing. Lord...that's all just Lord!!!

NOT IN YET!

Witt hasn't been taken for the procedure yet. When they do take him from the PICU, he will be taken straight to the Cath Lab...no holding area. The timing for Witt's depends completely on the procedure before him. I will let everyone know when Witt's starts!!

NEEDED WATER

The problem with the ventilator was that it was out of water! It has a plastic jug that should always have water in it and it was empty. I am guessing it was human error but there are many life saving things in place to cover even human error. I am not explaining this so people can be upset with or blame a person...it's just the opposite. I am thanking God for the human beings who are willing to day in and day out work and make choices in a place where lives hang in the balance. The doctors, nurses, respiratory, therapists are all willing to to work where a small human error can have a big impact but they don't run from that. They show up and carry that kind of a responsibility with the full knowledge that anything short of a perfect performance can have a huge impact on a life! Like Evan just told me...his decisions, a mistake may cost someone some money but not their life. Pray for the medical profession. Praise God for these people who know the risks and yet do these jobs!!!!
Witt has not been taken back yet but right now I am asking God to take over the operating room. I am asking the Holy Spirit to make it Holy ground!!!
I don't have a new picture of Witt to post. Mel doesn't want pictures of Witt on the ventilator posted. I completely understand that so here is one of my all time favorites of him. Just thought
it would be nice to see a picture of his beautiful smile!

HE'S FINE!!!!

It was a ventilator issue. They fixed it and Witt is doing good!!!!

PRAY

PRAY!!! Witt having major issues with vent. He destated to 13!!! Bagged him. Code team standing by. Once they bag him and pump by hand everything comes up but he can't stay on vent!

Wednesday, June 17, 2009

WORTHY, WORTHY IS THE LAMB

Tomorrow is the cardiac catheter procedure. Witt is second in line. It will probably start somewhere between 10-11am and will most likely last 3-4 hours. A line will be inserted in the groin area and pushed up to the heart. The cardiologist will measure very precisely pressure levels involving the heart, lungs and the leaky valve. When it is finished the cardiologist will come out and give Mel and Austan the results. Tomorrow is huge. Not only is Witt going to be put under again but by the end of the procedure we will have a good idea of what shape his heart and lungs are in. This is truth that we knew we would need to know but somehow the end of July seemed a long time away. Now tomorrow that truth will be revealed. My greatest desire is for God to be glorified...I pray that God will accomplish that by shocking the doctors with what great shape Witt's heart and lungs are in. I would love God to leave the doctors dumbfounded with no explanation except Himself!! That's what I am asking of the One Who is Able...He is Mighty to Save! The thing to remember is that these test results, good or bad, have no bearing on God's worthiness, or Who He is! He is King of Kings, Lord of Lords, there is no other God besides Him. Worthy, Worthy is the Lamb! He is worthy of all our adoration and He has the final say in all things!

STOPPED FEEDS

Witt's feed had to be stopped. He just got too agitated when it was going on even with the morphine and other drug he is on. 5 minutes after the feed stopped he fell right asleep. This is what was happening at home and why Melanie took him to the surgeons office last Friday. First things first now. They will do the procedure tomorrow then worry aboutt the feed issue later. His nurse, Katherine, is wonderful. She is very on top of things and documented exactly what happened. God at work here is so evident! Stephanie and Kellie (Witt's therapists) came to the PICU to see him! Just to know that they care means so much!! That's what God continues to do. In ways we don't expect He strengthens us and encourages us!!

GOOD MORNING!

Today is sort of a holding day waiting for the procedure tomorrow. The best possible guess for timing is late morning. Since Witt remains on the ventilator he is also kept still with sedation. When it wears off he tries really hard with his tongue to get that tube out! His hands are loosely tied so he won't grab it. The doctors actually just ordered a continuous drip sedation. Witt will also be fed today. Melanie was wondering last night because he hasn't eaten since the very early hours of Monday morning! Melanie is resting now. Please pray for both Mel and Austan that they not only get physical rest today but also emotional rest. Tomorrow's test will reveal a lot about Witt's heart and lungs. I am asking God to heal Witt. I started to say that I will be praying that nonstop but I heard God tell me to leave it with Him! So one last time I kneel at the altar of God and leave my request there with Him and His peace which surpasses all understanding will guard my mind and my heart!

Tuesday, June 16, 2009

TRUSTING GOD!

Witt will remain on the ventilator. His lungs just aren't quite ready. He probably could come off tomorrow afternoon but by then there would be no need. I said before that I was trusting God to do what is best for Witt's lungs. It's not a decision I necessarily like but I find peace in it! Witt is second in line for the procedure on Thursday. The doctor said it could last anywhere from 2-4 hours. In the meantime please pray for Witt. Pray that he remain calm on the ventilator and can be minimally sedated. Pray that Witt feels Christs arms around him in a real tangible way! Pray also for Melanie...that she realize that in the absence of her being able to hold Witt that Christ Himself is holding him!

I have another prayer request for a very nice family we have met in the "recliners." Their boy's name is Connor Konz. He is 17 years old. A couple of weeks ago he got pneumonia and had to go on a ventilator. He is still on the ventilator. He is however making small steps in the right direction but this family is also walking in faith in a world of unknowns trusting that God knows all! The immediate prayer request from the family is to figure out why Connor's urine has a little blood in it. The doctors are doing tests. Connor is completely sedated. I can somewhat imagine what that must feel like for the family but Witt has only been on the vent for a couple of days. Undoubtedly, God is here. I pray that other families in the "recliners" will come to depend upon God just as this family does!

Please, also pray for Zoey...I don't even have any other details than the name but our God has it all. A young man just came into the recliner room crying. I simply asked for the name and that we would be praying. There are so many hurting families here...so many lives for God to take over!!!

CARDIAC CATHETER THURSDAY!

Witt's cardiac cath procedure has been scheduled for sometime Thursday! The doctors are going to try to take him off the ventilator tonight. The cardiologist said his lungs are little stiff right now so they might not be able to. If that's the case Witt will just stay on the ventilator till sometime after the cardiac procedure. No matter what, Thursday's procedure will require Witt to be under a general anesthetic and intubated. Before he leaves the hospital the pediatric surgeon will also place the "button" on his feeding tube. Wow...what a week but WOW what a God! God has no calender or needs no daytimer. Everything has been on God's schedule already. Please pray that whatever is best for Witt's lungs takes place tonight. I believe it would be best for him to come off the vent but his lungs may just need the help and rest still. Looks like we will be in the recliners at night for a while. I will tell you ,though, I have met, prayed with and prayed for many people in that recliner waiting room. As I said...WOW what a God! I have always wanted to go on a mission trip. I just didn't know it would involve camping in recliners!!

WEANING OFF THE VENT

Witt is still on the ventilator. Any second we should hear from the cardiologist about when the cardiac cath test will be. In the meantime respiratory will begin to wean Witt from the ventilator. If the procedure is tomorrow he will remain on the vent but with the settings low. If the procedure is scheduled later in the week they will try to extubate him. When his sedation wears off he opens those beautiful eyes and looks at you! This morning he even tried to smile with all the tape on his face. For now he is still being sedated so he is not in pain and doesn't fight the tubes. Please pray that his lungs respond well to turning the ventilator down!!

Monday, June 15, 2009

STILL ON VENTILATOR

Lord Jesus...just absolutely invade us with Your strength! Witt is still on the ventilator and is sedated. He looks as beautiful as ever but there is also a pain that runs deeper than any pain I have experienced. To see him on the ventilator hurts deeply. It doesn't affect my faith and trust in God. My faith is not relative to the level of pain here on earth. I find that my dependence on my Savior grows as the pain goes deeper. Witt will remain on the ventilator at least until the doctors come to a decision (and Austan and Mel agree with them) about the timing of the cardiac cath test. This test which was not going to take place until late July or August will most likely take place this week. If it's scheduled within the next couple of days Witt will probably remain on the ventilator. If it's later in the week they may try to take him off it. Tomorrow a decision should be made. I'm not even sure what to ask God for...what decisions should be made so I kneel at the throne of grace where the God of all Truth sits. I ask God to pour out wisdom on the doctors. I carry Witt there with me and leave him in the very lap of God asking God to not let one thing be done out of His perfect timing to His glory!
~Karen

A PLACE TO BELIEVE!

The surgeon met with Austan and Melanie and let them know that they removed 62 cc's of fluid from around his heart. His CO2 level was elevated so he was having a hard time with his normal breathing prior to the procedure. Witt will spend the night in the PICU while he is on the ventalator and hopefully come off it either tonight or tomorrow. In additon, Witt will have a temporary drain to keep additional fluid from building up over the next couple of days or so. Breathing will be much easier for him as the fluid was restricting his ability to breath normally.

Texas Children's Hospital continues to amaze me with the level of care, but more importantly it is interesting to see God at work all around us. We see men and women doing specific things that contribute to life. It is patients walking through the process of healing and others struggling to take another step. In the end...God is here, all around.

And in that place many believed in Jesus. John 10:42

NOW WITT IS BACK!

Witt was taken back about 15 minutes ago. Melanie and Austan are with us in the waiting room. I am not sure exactly how long it will take. Please lift Melanie and Austan up...I can't imagine what it's like to be in their shoes!!!

JOIN ME IN THIS PRAYER!

Here is what God impressed upon me...what I am asking of Him! I am asking that the Holy Spirit usher Witt into the procedure, that the lives of unbelievers are changed from the outside in and that the lives of believers are changed from the inside out! I am pleading with God for Witt's procedure to not just serve earthly purposes but for Kingdom, eternal purposes too! May the name of Christ be lifted high, exalted and magnified through one tiny (although Mel calls him fat!) little almost 8 month old boy...Glory!!!
~Karen

GOD'S PERFECT TIMING

We are asking for and trusting in God's perfect timing! Witt's procedure actually has been pushed back a couple of hours. They had to find Witt's blood type in case he would need blood so the child that was waiting was put ahead. Melanie and Austan are with Witt in the holding area and will remain with him until he is taken back for the procedure. I have total trust in this being God's perfect timing...waiting means more praying too!!! I am praying for Witt but also that as Witt is wheeled into the surgery area that the undeniable presence of God is felt by everyone involved!! I am asking God to change the lives of people today that come in contact with Him through Witt!!!!

TAKING WITT NOW!

They are transporting Witt right now! The procedure will start in about an hour. I will post with any information as soon as I can! Thank you for the prayers, thank you for standing in the gap for Witt!!!

GOD'S HAND

It's a little of a whirlwind here! BUT without a doubt God's whirlwind and not chaos! Dr. Ing was not suppose to be here today but he came in this morning just for Witt. He has done the previous 2 taps. On Witt it's a little tricky because of the size and position of his heart and where the fluid usually accumulates. The tap has to be done on a side entry. Dr. Ing came in during the echo and wanted to do the procedure immediately but in his words: "a kid just got on the table ahead of us." Dr. Ing now has to leave but has total confidence in his associate that he trained and fully briefed about Witt. Once again I am asking God to not only be in control of the procedure but to breath air into Witt's lungs so that he can come right off the ventilator. Witt is next in line for the procedure...he had to bump another child. Pray for that family too! In the meantime Witt has been moved to another room on the cardiac floor. This room is called a step down room but is a step up in level of care...basically the same as PCU (Not PICU). Melanie isn't unpacking because there is always the chance that Witt would need to go to the PICU which would mean back to the recliners. I can't explain the peace I feel but God! It's a peace that is present without any guarantees from doctors or the outcome (they believe it will be totally successful) but the most important guarantee that God is holding Witt's life in His hands!

Just got word that Witt will be taken in about 45 minutes now!!!

MOVING FAST!

The attending on the floor is moving fast. She called Dr. Ing who will do the heart tap because she doesn't think he realized who bad Witt is doing. Witt is going stat for another echo and chest xray. They hear crackling and he is in respiratory distress. He will also be moved to a higher level care room on this floor. I really appreciate the attention and concern of the attending!

ALL SETTLED IN!

Witt is all settled in on the 15th floor. The doctors will decide at rounds in the morning when the heart tap will be done to remove the fluid. I will post as soon as we find out! Witt was his usual cute self even in the ER!


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The IV is back...this time in his foot!

Sunday, June 14, 2009

ADMITTED

Witt is being admitted to floor 15...the cardiac floor. The fluid around Witt's heart has increased significantly in the last 48 hours. The doctor that has done the previous 2 heart taps was called and he is the admitting doctor. I believe Witt will need the fluid removed tomorrow so his feeds will be held starting at 2am. The doctors can't answer why the fluid is back as of yet especially since last Monday it was totally gone. Once again I pray for God's perfect timing for this procedure. Witt will be under anesthesia and intubated. There is always the concern of how his lungs will handle all of it. I have absolutely no doubt God is in control. He is just as much in control as He was on Monday when there was no fluid. So it is to Christ I turn because I also know that Witt is securely in His arms!
~Karen

BACK TO ER

Mel and Austan have decided to take Witt back to ER...he is still spitting up when he feeds and his breathing is labored. Also, they knew that he would have to go in tomorrow for tests so this way they're hoping the tests might begin first thing in the morning. They still don't know what is causing his feeding issues so the gastro team will likely be called in to see him. In addition, he'll be under the cardiologists' care to watch the fluid around his heart.

Please pray for answers! I am praying that God will not only reveal the answers to Witt's problems but that He will reveal Himself in a mighty way! I continue to marvel at Mel and Austan as they persevere through this journey with Witt...they are not sad...they are joyful and hopeful and simply amazing!

~Cheryl

Saturday, June 13, 2009

SMILING THROUGH IT ALL!

Witt is about the same which for Witt means not only is his oxygen still at 1 and 1/2 but he is still smiling! His breathing is still labored but doesn't seem to be worse. I can just tell you that I marvel at Melanie and Austan and their show of God's strength. Through all this, even last night, there is still joy and laughter! And Witt...well Witt continues to smile the cutest smile!

Witt donning the "I'm a Great Patient" sticker in ER last night...placed by his mom!


I love this! Witt smiles at Mel a lot when she is holding him. Sometimes she doesn't even realize it but he is just looking up a her smiling.

PSALM 13:5-6

"But I have trusted in Your lovingkindness; my heart shall rejoice in Your salvation. I will sing to the Lord, because He has dealt bountifully with me."

Witt is requiring quite a bit more oxygen than his normal baseline. Right now his oxygen is at 1 and 1/2 liter. His baseline just 24 hours ago was 1/2. BUT...I will sing to the Lord, because He has dealt bountifully with me, with Witt, with Melanie, with Austan, with all of us involved! How is Witt's situation an example of God dealing bountiful? WE HAVE WITT!!! We have been blessed so far with almost 8 months of his life. I believe the count is up to four on the number of times Melanie and Austan were told Witt was dying. I can't explain the joy that God brings us through Witt. God faithfully pours His strength and peace into Melanie and Austan. I can't imagine what their emotions must go through but the joy and laughter that still prevail are bountiful! For me, God continues to take blinders off...to reveal more of Himself to me. Things that I used to think brought meaning to life I realize are meaningless. Simply the nearness of God is my good...with this knowledge firmly in my heart whatever steps are next with Witt I know my God will see us through it. I know that my Bountiful God will not just get us through it but we will walk with joy, peace and even silly laughter...to His glory!!! For now we are keeping a close eye on Witt and his oxygen saturation level. The fluid is back and there is no explanation. If there is a change it will probably mean a trip back to ER and Witt being admitted. Whatever is next I proclaim for the world to know: "God has dealt bountifully with us!"

6 HOURS TO GO HOME

Mel and Austan met with the cardiologists on call tonight and they learned that Witt has a little fluid around the heart again. It's not enough to keep him overnight however and after some discussion with the doctors, Witt was released to go home. Melanie and Austan have enough experience now to notice changes in Witt's physical condition to determine if he needs to return this weekend. The doctors saw no need to keep Witt, but will see him Monday to assess any changes that may occur throughout the weekend. We will keep you updated if anything happens this weekend. Thank you for your continued prayers.

Friday, June 12, 2009

AT THE ER

Witt and company are at the emergency room right now because his osat has continued to drop throughout the day. They are going to do an x-ray to check for fluid again. The doctor thinks it may be heart related but is still uncertain of the cause of Witt feeling rough and his numbers changing. Please pray for answers and healing.

Rest assured that the Luphers continue to make the most of every situation. Witt sure has fun parents... check out "Dr." Austan examining Mel's ears while they wait!

ABOUT THE SAME!

Well, the good news is that the surgeon said what is bothering Witt is not the tube. This wasn't Dr. Wesson and frankly, he wasn't helpful at all. Why do some doctors walk in with an answer in mind and not even listen to the mom? His solution is tons of mylicon. He said all babies have tummy issues and poop issues. What he wouldn't listen to was Melanie saying that Witt started acting this way when the gtube was put in and it has gotten worse. Witt's oxygen is still turned up but his osat continues to stay lower. He did say Witt's lungs sound clear which is great! Right now Witt is back home but still acting about the same. Mel's going to up the mylicon and maybe slow the feed down. Please, pray that whatever is wrong with Witt that God will correct it...that he will begin to take slower deeper breaths!

TUMMY TROUBLE

Karen just called to say that Witt is very uncomfortable every time he feeds and, in fact, he threw up once last night. When he's being fed he pulls at his feeding tube and straightens out his little legs. He's obviously in pain. Mel has two calls into the surgeon's office and is waiting to hear when they can take him in...otherwise, they'll take him to the ER. His breathing is very shallow...most likely from the pain...but they've had to turn his oxygen back up.

Please pray that this will be an "easy fix" and for immediate relief for sweet, little Witt! We'll continue to update as things progress.

May your day be blessed! ~Cheryl



**update...this is Witt on his way to the doctor today! Smiling as he listens to "Mighty to Save"...we've all decided that this is "Witt's Anthem!!!" Such a sweet boy...happy, even when he's in pain!

Thursday, June 11, 2009

WITT'S STOMACH

I think we are boring Witt these days but for Melanie even a day at home is not boring! The days at home are still filled with administering several different medicines throughout the day, cleaning the entry wound of the feeding tube and loving on Witt. Dr. Wesson will try to put the button on the gtube on the 18th but for now Witt still has a long tube coming out. Please pray for Witt's stomach. It seems to be bothering him quite a bit especially since the surgery. Melanie has a call into the nurse. Hopefully we will hear back tomorrow. He seems to be a little uncomfortable at times. Please continue to pray for God's perfect timing on the cardiac cath test too...the perfect timing for Witt's little body...the perfect timing for God to be glorified!!

"Bah humbug...let's go out!"


For those interested...here is a picture of Witt's gtube with the stabilizer. The "target" is actually just adhesive tape to hold the stabilizer tight in place. Now when Witt pulls on the tube it doesn't move in and out at all. Look at that smile, though!!


Wednesday, June 10, 2009

SING TO THE LORD

"Sing to the Lord a new song; sing to the Lord, all the earth. Sing to the Lord, bless His name; proclaim good tidings of His salvation from day to day. Tell of His glory among the nations, His wonderful deeds among all the peoples."

God continues to bless...to bless Witt with healthy days and us with fun filled days!
The last couple of days have been busy and filled with laughter. First, Rise' came in town to visit him and went with us to his cardiology appointment.


As Cheryl posted, that appointment was great! Witt's valve had been leaking more and more with each visit so to hear that it was leaking less was nothing short of a miracle...and no more fluid! Witt will still need the cardiac cath test to measure all the exact pressures in the heart chambers. The doctors want to do that sometime in July or early August. These last few days have involved just some good hanging out time with Witt too!
Mel and Witt
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Rise' and Witt (Witt really did have fun!!)
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Today was therapy day! Between therapy Melanie continues to feed Witt at home


He did pretty good at therapy today...however he doesn't like chicken !
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I pray that God is even magnified in the "easy" days. He is certainly magnified in these faces!


Monday, June 8, 2009

PRAISE REPORT!!!

I just heard news from Karen that has my heart leaping with JOY!!!

Witt had an excellent report today from cardiology...the echo showed that there is no fluid around his heart AND (I just can't stop smiling about this part...) his heart valve is leaking LESS!!! Karen also said that there is a measurement that they take that has been 12-15 and today was 6-7...she said that she has no idea what it means other than it's VERY GOOD!!!

Thank you for your faithful, prayerful support of Witt, Mel, Austan and our entire family! You have shown such overwhelming love and concern...please join us in praising our Lord for this wonderful report!!!

I plan to shout it from the mountaintops!!!
~Cheryl

Saturday, June 6, 2009

THE LITTLE THINGS

Thank You, Lord for the little things that are huge! Today Melanie and Witt went for their first car ride alone!!! Up until now Melanie needed to sit in the back seat with Witt because of the danger of him pulling out the feeding tube from his nose. Jim and I are out of town so Mel ventured out with Witt. He still has the oxygen tube in his nose but that doesn't seem to bother him as much so he leaves it alone most the time. Also, the monitor alarm would sound if he grabbed the oxygen. Melanie called and left us a message. I wished I could put the message on the blog. The sound in her voice was wonderful. It had to feel huge to be able to get out on her own with Witt! Here's a picture she sent. The caption was: "What a trip to Sonic does to a guy". Thank you, Lord...may I never take anything for granted again!!!

Friday, June 5, 2009

NORMAL WEEK OF LEARNING!

Psalm 66:16 "Come and hear, all who fear God, and I will tell of what He has done for my soul."

This week has been a great week...sort of an abnormal normal week! It seems that I prepare myself more for weeks of doctors and hospital stays than normal days. What is amazing to me is how God uses Witt's more normal uneventful days to still teach me. I know how desperately need I God at the hospital just to breathe but I now know that I desperately need Him no matter what. My need for God is not based on Witt's condition but based on my condition!! My condition is that my flesh, my humanness, sets itself against God. This earth and all it contains has nothing for me. No matter what circumstances I am walking through, good or bad, God is Life, He is Breath, He is Strength!! It is so easy for me to run to Christ in tough times and now I realize that my need is just as great in so called easy times. God is Faithful...Faithful to teach. God is teaching me through Witt, that Witt doesn't need God more than I do...God just had to tear down my walls of self reliance!
Witt loves baths! Right now Melanie has to be careful not to get the tube or the stitched area wet but baths are still fun!
Before the Bath

"Anointed"?!!!

All Done!


Wednesday, June 3, 2009

WEDNESDAY IS THERAPY DAY!

Witt continues to do well! Some days are lazy days at home for Mel and some days she takes him on an errand or two. Today its back to therapy! The occupational therapist really worked with Witt on eating baby food with a spoon. He did better than ever! The physical therapist said he was doing better too on holding his head. Witt had physical therapy first so after "eating" some with the OT he feel fast asleep. Unlike this grandmama, Witt wouldn't wake up to take another bite! Stephanie and Kelli are wonderful gifted therapists...full of patience and encouragement. They are checking into getting a chair like they use at therapy for Witt to have at home. Thank you for your prayers...please know that even on our normal days with Witt they are still needed for peace and strength. Peace and strength for today and whatever Melanie and Austan face next in Witt's incredible journey!!

Mel and Witt enjoying a peaceful day yesterday!



Witt asleep in his therapy chair!


Monday, June 1, 2009

CARDIOLOGY CANCELLED

I always enjoy helping Melanie take Witt to his doctors appointments and there are many reasons I actually enjoy going to Texas Children's. Mainly, I am always in awe of God at work at the hospital! BUT this morning when we learned that Witt's appointment needed to be rescheduled, Melanie and I both were pretty excited. Witt is doing great and the appointment is now set for next Monday. I thank God for these days...for these days that He is every bit a part of but at home instead of the hospital! It's these days that I want to make sure that I am "dwelling in the shelter of the Most High" so that on those harder days I can be confident that I "will abide in the shadow of the Almighty". That "I will say to the Lord, My Refuge and my Fortress, my God, in whom I trust!" (Psalm 91:1-2)
Here are some video of Witt from this morning as Melanie and I just plopped back on the couch and relaxed!

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