FIRST MENTION OF GOING HOME!

Everyday Witt looks better and better...glory! Not only does he look better in specific ways but also just overall he looks like he feels great. Almost everyone who walks in says how good he looks! The nurse yesterday told Melanie what a good job she has been doing with him. Today the feed will be brought up to full volume. I don't believe there are any other real changes ordered. Witt is in the part of the process of tweaking his medicines. There was even talk today of sending him home...first time it has been mentioned! Mel did ask that before he leaves they at least start the process of switching him over to the age appropriate formula. Please pray that that all goes well over the next few days. We believe that trying to make that switch a few weeks ago is what eventually put Witt in the hospital. This will be a different formula than was tried the first time. The other one even in a very small amount gave him diarrhea which threw everything out of balance and started him on the road to being very dehydrated. Right now the doctors all agree he is doing quite well...ready to face the New Year!

From these pictures of Witt's hair it looked like the New Year's party already began but from the serious look on his face I don't think he was in the celebrating mood!

Today's plan for Witt is to make a small change in his enalapril and up his food volume a little bit more. Witt is still probably a little on the "dry" side which keeps his blood pressure a little low too. The enalapril needs to be adjusted for this. Once his food volume is where it needs to be they will work to change him over to the now age appropriate formula. Honestly, by the way Witt is acting, he seems to feel really good!

Today OT is starting back up. The cardiologists said it was perfectly fine to continue working with Witt on eating the baby foods. He is sleeping much better at night now. At home he sleeps through just fine but in the hospital its a much different routine especially when he was in the PICU. They are doing cluster care so that someone won't be coming in at all times and respiratory has orders to only do therapy when he is awake. Dr. Macicek and Dr. Jeffries stopped by to see how Witt was doing. Dr. Knudson, Witt's current cardiology fellow in the hospital is wonderful but its also a great comfort to know that Witt's regular cardiologists are following his treatment too!

OFF STEP DOWN STATUS

Witt has had a great day! He is off step down status although he remains in the same room for now. What this means is a lot less wires because they are only monitoring oxygen saturation and heart rate. It's as if he is just on his pulse/ox monitor at home. He did just fine on his increased feeds. He is pretty junky sounding in his nose and throat(not the lungs!) but he is coughing pretty good too. Coughing and suctioning is happening a lot in this room. The PT, Stephanie, came by yesterday for a session. Every 4 hours or so respiratory comes for his breathing treatment. Part of this is CPT or Chest Physical Therapy which Witt actually enjoys especially on the back.

Once again I find myself needing to thank each of you for your support and prayers and once again the words just don't seem like enough! Please know that I am more than grateful and humbled by the prayers for Witt and all his family. I can tell you with no uncertainty that your prayers make all the difference in this world...thank you!

ON THE 15TH FLOOR!

Witt is now on the 15th floor in a step down room! Yesterday late afternoon it was decided to go ahead and move Witt. His chest x-ray looked good and the bed space was needed in the PICU. He is in a step down room so that he can still be monitored closely. The cardiologists think he is doing good. The plan now is to make slow changes one at a time. Witt is still off his enalapril and still getting extra diuretic. The doctor wants to start up his enalapril. That will be the only change in his medications today. Dr. Knudson is the fellow cardiologist that will be taking the lead on Witt starting tomorrow. He was an integral part of Witt's care this fall so we are excited to have him again. The nurses can't believe how much Witt has grown in the 3 months since he was here. No time frame has been mentioned for going home but we have learned to take it one day at a time!!!

Hanging out waiting for the move!

HANGING IN PICU ONE MORE DAY

The cardiology team just rounded on Witt. They think he might be a tiny bit dry. Last night another dose of diuretic was held along with the enalapril because his blood pressure was low. Being a little too dry can cause this. Today they will continue to tweak his medicines so the decision was made to keep Witt in the PICU another day/night. The cardiologist didn't want to send him to the floor with uncertainty in his meds. Witt is off oxygen now! His saturation is hanging in the mid to low 90's but so far so good!!! These pictures were taken yesterday when he still had the nasal cannula for oxygen.



This morning I opened my Bible to Psalm 27 :13:

"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."

Beside this verse I had written: Mel 6/27/08(after the ultrasound and 4 months before Witt was born). I remember reading and praying this. Asking God to fill me with strength all the while hanging tightly to the truth that I would see the goodness of the Lord. Some people, even fellow believers may find this hard to believe but when I look at Witt all I see is the goodness of the Lord! Certainly, I have experienced excruciating pain and there has been suffering. Undeniably, Witt has suffered...Melanie has suffered...Austan has suffered but at least equally undeniable is the presence of the goodness of the Lord even if the "land of the living" is the hospital!!!

JUST A LITTLE OXYGEN NEEDED

Witt is doing well off the ventilator. He has only needed about 1/2 liter of oxygen through just a regular nasal cannula...no CPAP. The doctors have no reason to believe that he won't eventually be back off oxygen completely. His labs look good tool! He didn't sleep much last night which seems to happen in a hospital. Last stay he got his days and nights all mixed up. In the middle of the night the TV seems to entertain Witt which is helpful at 4am!

The doctors debated on whether or not to send Witt to the 15th floor today or tomorrow. They decided to wait till tomorrow. The last thing the doctors want is Witt to go up to the regular cardiology floor to soon and have to come back to PICU. Tomorrow morning the process will be started for the move up!

HAPPY!

Tears of joy and thanksgiving are flowing here! Mel titled these pictures "happier". I think it would be hard to pick the "happier " winner out of the family!

OFF THE VENTILATOR!!!!!

MERRY CHRISTMAS!

Merry Christmas!!

The plan is to take Witt off the vent this afternoon. This is one of the best Christmas presents...GLORY! I join with all of you in celebrating the birth of this world's Savior...the birth of Witt's savior...the birth of Christ! This is not at all the way I would have planned Witt's second Christmas but I would have never planned the Savior of the world to come as a baby born in a manger...born to suffer. Yet this was God's perfect plan all along for His Son. It made perfect sense to God then and makes perfect sense to us today! Right now, God's perfect plan for Witt makes sense to Him even if it confuses us. Right now we only see in part, a glimpse of God's perfect plan for Witt. Today, My God has given me the gift I that I have needed the most. He has filled me with hope, faith and trust in His plan so that even though I sit this Christmas morning in a hospital by Witt, I am inexplicably bursting with joy(and honestly giggling a little as I type in red and green)!!!! Merry and blessed Christmas to each of you. May you be filled with joy no matter where God's plan has you today...a joy that is ours because of God's perfect plan for His Son.

PRESSURE SUPPORT TRIALS TODAY!

Witt's lungs and fluid level are getting better and better! The cardiologist actually withheld a couple of doses of diuretic because they didn't want him to get too dried out and swing the pendulum back the other way. Today they will do the pressure support trials with the ventilator and if he does well he will most likely be taken of the ventilator tomorrow! He is still on antibiotics for the bacterial infection in his lungs. The area where the central line was is being treated and looks better. Witt coming off the vent would be a wonderful Christmas present but the most important thing is that it happens in God's perfect timing...please Lord, let that be tomorrow!!!!

PRAY FOR GOD TO BE WITT'S SHIELD!

Witt now has a pic line in his arm and the central line has been removed. The area that was becoming infected can now be more easily treated. It's hard because its inside the diaper area. Respiratory has turned a couple of things down on the ventilator as Witt continues to get dried out and is breathing better.
We found out today that Witt's little roommate has RSV! This is very contagious and could be absolutely devastating to Witt if he caught it! Mel has talked to the doctors to see if either Witt or the baby could be moved. We were told that there aren't beds available to make a change. The threat of RSV is one of the main reasons that when Witt is home and healthy he is not allowed to see people especially his little cousins! AND now his roommate has it! Melanie has done what she could to remedy the situation and clearly it is in God's hands. Tonight I am calling on God, Our Shield to literally be a shield around Witt protecting him from all illnesses here! Also, I am praying for his little roommate who was born with some lung issues and now has RSV. God, The I Am is Able!!!!

LOTS OF INFORMATION!

I have quite a bit of information to share today! First, the area around Witt's central line is very infected. The redness is "growing" to his backside and down his thigh. There is even yeast growing right around the entry site. The central line is going to be pulled and a pic line will be put in somewhere else. Secondly, Witt does have a bacterial infection in his lungs. This is somewhat common to kids on a vent. His antibiotics have been changed to treat that. BUT in some very important ways Witt is improving! He is still on the ventilator but because he is doing better in that area they are going to turn the vent down some more. There are some ways that the ventilator measures Witt's output and how he is breathing. He is improving in there.

The wound care people are here now to really clean the area around the central line and decide how to best treat it. The paper work has been turned in for the pic line. As soon as that is scheduled or done they will remove the central line.

I am grateful that if this was going to happen with the central line it happened now. Starting tomorrow and especially on Christmas day there will be pretty skeleton crews. Even here in the hospital things sort of come to a halt. Isn't it amazing that in a world and a country that for the most part denies Christ that people,businesses and even hospitals celebrate on His birth. They may not all celebrate His birth but somehow it still feels like the world is at least recognizing the birth of Christ. Truth does still triumph! If God can accomplish that then He can lead us in celebrating here in the hospital. The doctor just came in and said that they hope to have Witt off the ventilator by the end of the week which is Christmas day...let the celebration begin!!!!!!! AND Witt is 14 months today!!!!

Witt is about the same today. He is still running a low grade fever. The tests that have come back so far have been negative. We don't have the results of the tests to determine if the infection has to do with the central line. That should be in today or tomorrow. The doctors have decided for today to not really change any settings on the ventilator. Yesterday, he didn't tolerate the change that was done probably because of not feeling well with the infection and fever. As Christmas draws near, my hurt for Witt, Melanie and Austan grows. Some of you may not realize but Witt will have spent both his Christmases here. I know that my God...their God...is in control and I praise Him for that! My trust in Him hasn't wavered but there is still hurt. If I hurt I can't imagine what must be in Melanie's and Austan's heart. Would everyone please join me today so that as one body with one loud voice we are asking the God of Witt, Melanie and Austan, our God who loves them more than I can imagine to replace the hurt with joy...not a giddy, surface joy but with the joy that runs so deep and is unshakable! It's a joy that remains through the hurt and tears. It is simply the joy of the Lord that is our strength!

UPS AND DOWNS

In the midst of writing this post Mel called from Witt's room. I just left the post as is to give you all a little glimpse into the ups and downs that Melanie and Austan go through!

Things are pretty uneventful here for Witt which is good! You can tell that the extra fluid is coming off his little body. The lung x-ray showed that the right side is about the same but the left is definitely better. Witt is really not happy on the ventilator. They are giving him sedation pretty frequently to keep him from getting upset. Honestly, this is a hard time but just when I need it God sends me encouragement! Today, it comes from the mom of a patient that I wrote about way back this summer when Witt was here in the PICU. Chase is a 19 year old boy who has been waiting for a lung transplant. His whole life he has dealt with lung issues. His mom (Carol)is such an good example of persevering and doing it with steadfast joy. Yesterday I saw her in the PICU waiting room and she told me that Chase had the transplant the night before. Today he is off the ventilator!! She is placing the glory right with God. This summer I shared a few steps of hert "valley" and now I am getting to share in her "mountaintop" and the view is wonderful!!! As for Witt, there is no talk at all about going home. Not even the doctors could give that a guess but each day now he is moving slowly towards that. The big hurdle is to get off the ventilator.
UPDATE!! I am resting in the recliner and Mel just called with the news that Witt now has a fever...101. They will do some cultures. It could be the central line. One of the risks with a central line is infection. This is the way it is for Witt, Mel and Austan. So many ups and downs to handle. Mel's and Austan's emotions have got to be raw. Please pray that God completely takes over and "hides them in the secret place of His presence". Pray that through God's wisdom the doctors determine the cause of Witt's fever. And still in the midst of all this please join me in praising our God who is Mighty, Mighty to Save because as I learned this summer...NEVERTHELESS I will praise Him!

SLOWLY MAKING PROGRESS!

Witt continues to slowly improve. The main overriding goal is to wean him off the vent. His levels that are taken in blood tests are staying in the normal range. The blood sugar is tested very frequently to be sure it is staying up as they make some changes in his feeds. The doctors were trying to get his feeds back to the home regimen but have had to change slowly because Witt's stomach/abdomen is pretty bloated. The concern about this is that when there is bloating in the abdomen area this can exert pressure on the lungs from the outside constricting them from expanding. In order for Witt to continue to be weaned off the ventilator his lungs need to be expanding well. They may need to change Witt from formula to something like pedialyte that is easier on the stomach and gut. Overall he is improving. He is sedated as needed which means he is awake quite a bit. They give him sedation when he gets agitated and "fights" the breathing tube. Witt's eyes have always been very expressive and especially now since all he can do is look at you! Here are a couple of pictures and a video from a week ago at ER. As soon as he gets off that ventilator newer pictures and video will be posted!

One of my prayers through all of Witt's hospital stays is that I don't get so focused on what we are going through that I miss an opportunity to allow Christ to minister to others here as well. There is a lot of heartache right now in several families with children in the PICU. One family is making the decision whether or not to remove there 15 year old daughter off life support. Another family's son has maybe 32 hours to get an organ transplant or he is expected to die. I know it would seem like this would be a place where God is absent but it is the opposite. I know that wherever there is heartache, despair, hopelessness there is Christ...holding on to those who know Him and reaching out to completely embrace those who don't. His presence in here is undeniable! As you continue to pray for Witt to heal would you pray not only for strength for Mel and Austan but also for the other families as well. Pray that they draw closer to the Living God or perhaps meet Him for the first time!

SATURDAY UPDATE

Thank you for all the prayers!

(picture taken a week ago

in the ER)

Witt continues to make slow steady progress! His "numbers" that have been concerning continue to improve. The main focus right now is to pull the extra fluid off his little puffed up body and from his lungs. The cardiologists in rounds today decided to add a third diuretic to his daily regimen which is now being given by IV. They are very closely monitoring everything especially his kidney function through this process. The goal is to dry his lungs out to the point that he can come off the ventilator. The vent is on as low of settings as Witt's lungs will allow for now. The hope is to over some period of time wean him off of it. Witt also had an echo yesterday and it showed that his heart has not changed for the worse through all this...thank You, Lord! We have no idea how long this stay will be. What will guide the timing is how Witt responds to the steps being taken. Thank you for your prayers and words of encouragement. They have helped to calm my spirit and keep my focus squarely on God!!!

A RECAP OF THE LAST 24 HOURS!

I want to try to recap what all has happened over the last 24 hours with Witt. Early yesterday Witt was doing really well. His potassium was down to 3.3 which was great. At that point they stopped the extra fluid he was getting and were just giving him his maintenance amount which is 730ml for the day. The previous days he was getting around 1400ml and no diuretics at all(at home he gets 4 doses a day). I was even thinking that he would probably go home in a handful of days. In the early hours of yesterday morning Mel and I were getting a little concerned that he was now beginning to be overloaded on fluids. Witt wasn't requiring oxygen at that time but his saturation was dropping overall a few points indicating that his lungs might be getting wet. Unfortunately, added into the mix was that he had a stomach ache that can affect his oxygen. Every step of this hospital visit Mel has told the doctors how sensitive to fluid he is and although he was dangerously dehydrated they needed to carefully hydrate him. Mel kept saying in the ER that she just remembered the last time this happened after his heart surgery that Witt ended up being rushed to the PICU and put on a ventilator because he swung too far on the fluids. I am not sure the doctors could have done anything different. Now we know that maybe his fluids need to be backed off when he is definitely headed in the right direction and not wait till his levels are exactly where they want them. His body obviously keeps absorbing the fluids and swings to far. Yesterday before noon Witt had to go on a little oxygen. Since his last labs had been so good the doctors assumed it was because of the way he was from his stomach issues. The decision was made to transfer Witt to a regular room on 15(the cardiac floor). The whole process of getting moved took a couple of hours or so. In that process Witt started requiring more oxygen...up to 3/4 liter. In just a few hours he had gone from no oxygen to 3/4 liter. I was actually away from the hospital with the other 2 most cutest grandbabies in the world(very biased opinion of course!). Mel called when Witt got into his room on 15 and said she just didn't like they way he looked. He was on oxygen and his breathing was becoming labored. The attending cardiologist on the floor came to look at Witt and wanted to keep a close eye on him. When I got to his room around 3pm he looked really bad. I have never seen him so pale. Even his hands were grayish white! His breathing was very labored. Doctors were there and the attending cardiologist came back in. He couldn't believe how much worse Witt had gotten in the hour since he had seen him. Witt was now on over 1 liter oxygen and having to work very hard to breathe. He was immediately given a diuretic through his gtube and several teams were called to try to get an IV in so he could get the diuretics by IV. Finally, the Kangaroo transport team were able to get an IV in his stomach using an ultra sound machine. During this time it was decided to send Witt back to PICU. Austan and Mel stayed back with Witt in PICU but they were getting very worried. Mel texted me she was getting really nervous that nothing had been done for him since he was brought down. He was getting worse. Finally she texted at 7:30 that she thought he had to be put on a vent because he was hardly breathing. Not that he was breathing hard and labored but now he just was barely breathing. His little body was probably wearing out. I hurried back to look at him and he was taking very few breaths. The doctors moved fast then and put him on the ventilator. He was then sedated and a central line was put in. All his labs came back really crazy. At one point his blood sugar dropped dangerously low to an 8 then a 4! Today its back at 119. His potassium had also become too low along with his heart rate. Today he is sedated and remains on the ventilator. All his "numbers" are getting back in the normal range. However, his little body is definitely overloaded with fluids. His lungs now have fluid in them. Melanie just asked the nurse to check with the cardiologist about the amount of diuretic Witt is getting. Right now he is getting just his normal home regimen through the gtube. In the past when Witt was on fluid overload he was given extra diuretic and through the IV which makes it even more potent. We have absolutely no idea how long this hospital stay will be. Since Christmas is a week away I am sure Witt will spend this Christmas here too. As I was walking in the hospital I heard some employees talking about their Christmas plans. I just started crying...I hurt for Witt, Mel and Austan. BUT my Faithful God would not let me stay in those thoughts. He reminded me that a little over year ago we thought Witt wouldn't be with us anywhere to celebrate even one Christmas and especially not two! I, my entire family, Mel and Austan have so much to be grateful for! Sure, there are legitimate things that we don't have but God clearly wants us to live in the light of the blessings and not in the darkness of what might be missing. I am standing in The Light rejoicing in the blessing we have in Witt!!!

Friday, 11am

Witt is being kept pretty sedated for now as the doctors work to get things back in balance. His "numbers" seem to be getting back to within normal ranges. It is evident that he is holding fluid now...he looks puffy. The respiratory therapist explained that lungs are just like sponges and they soak up extra fluid. So, it is vitally important that they are able to pull off the excess fluid...Witt just can't handle it. Please pray for speedy restoration of the perfect fluid balance!!!

~Cheryl

Thursday, 11:00pm

They are running a battery of tests on Witt right now to determine why all of his "numbers" are "off." Everything is "out of whack" and just not making medical sense. He is on the ventilator and has a central line inserted.

It has been a whirlwind since this afternoon when he was moved to the cardiology floor and quickly went downhill...it doesn't seem that the move was the cause but the culmination of too much fluid build-up. As we have said before, it requires a very delicate balance of fluids with Witt...he had been dehydrated we know so they had him on double the normal amount of fluids and no diuretics at all. By the time he was brought back down to PICU his blood sugar and heart rate were way low...in fact, his blood sugar was dangerously low...it was 23, dropped to 8 and then dropped to 4. It is now up to 129, thank God. But, everything is still way off...even his potassium is low now.

Again, we are so proud of Mel and Austan and the strength they are showing through this. They are by Witt's bedside now and are sending updates as they can. We will keep you posted...until then, please just pray that God reveals Himself and the answers to this amazing team of medical professionals that are working with our sweet Witt.

~Cheryl

PLEASE, PLEASE PRAY FOR WITT!

Witt took a horrible turn for the worse! He is hardly able to breathe so they are putting him on the ventilator as I type. Not exactly sure what all is going on. We think he ended up with too much fluid. His lungs are crackling again. The last several hours he's been on 1-2 liters of oxygen. Please Lord, please heal Witt! Please just bypass medicine and touch him!!

Please pray for all of us that God will fill us with faith and trust to look past Witt's circumstances and hold fast to Him!

Thursday, 3pm

Witt's "numbers" all continue to trend in the correct direction so he has been moved out of PICU and onto the cardiology floor. But, poor little guy is not feeling well at all today...he is back on some oxygen and is very pale...it appears that his stomach is really bothering him. Please pray that the doctors will be able to diagnose what is bothering him and quickly make the proper adjustments!
~Cheryl

10:00pm Wednesday...GREAT NEWS!

All of Witt's "numbers" are trending positively...meaning those that need to go up are doing so and those need to go down are going down!!! PRAISE GOD! The doctors have decided to maintain status quo for the night at least. He will still be getting the sugar water mixture through his feeding tube and no diuretics or heart meds. As Karen explained, "that may all change in the morning but that's what's happening now!"

Our dear friend, Rise', sent lyrics from a song that her church choir will be singing for their Christmas program...she said it makes her think of Witt and his family every time they practice it...

Sometimes faith will bring you

to trust a promise that's illogical.

Sometimes faith will lead you

to cling to hopes that seem impossible.

So often faith looks foolish,

a leap into the dark,

but that's not how it is

for the believing heart.

Doubt will always whisper

there's no one there to catch you

when you fall.

Fear will come to rob you

of any chance to see a miracle.

So trust the One who loves you

Whose Word won't let you down.

'Cause resting in His Grace is

where your strength is found.

'Cause when all your dreams have fallen through

and your plans come crashing in on you,

don't lose hope no matter how it seems.

'Cause faith will hold you closer...

Faith will keep you safer...

Faith will take your farther than a dream.

In Him,

Cheryl

2:00pm Wednesday

Witt had a rough night and didn't sleep much at all. Unfortunately, today has been even worse...he was getting everything by iv and no feeds at all...he hasn't been given anything that contains potassium and have also added a bicarbonate...all of this is an attempt to bring his potassium level down without overloading him with fluids. It's such a delicate balance with Witt because he desperately needs fluids but he can't handle too much at once.

Sometime around 11am, the iv in Witt's foot "blew out." Several different people have tried to find a vein and they have even used an ultrasound machine to try to find one to no avail. There was talk of giving him mixture of sugar water through his feeding tube but that has caused diarrhea in the past. When they were trying to stick Witt (for over an hour!!!) Karen said that she has never heard him cry like he did...please, Lord, please hold Witt!

Just before 2:00pm a team of doctors came in. Witt had gone over 3 hours with no fluids! The lead doctor said to start him immediately on just sterile water in his feeding tube...in the meantime, the sugar water mixture also came so he is getting both through his tube now.
**Please pray that Witt is able to absorb these fluids so he won't require the "impossible" IV!

Another finger prick has just been done to check some levels...I'll post again just as soon as I hear any results!
PRAY, FRIENDS, PRAY!!!
~Cheryl

PICU

Witt's potassium level went down a good bit but not enough for him to go to the cardiology floor. He is being taken to PICU now.

Please pray for Mel and Austan. As Karen just texted me, "We have got to hang on tight to God right now!"

~Cheryl

8:00pm...STILL IN ER

Witt's potassium level was high when they first drew blood in the ER. It was still high in the second draw but down a little. They are waiting in the ER for 2 more hours and will draw blood yet again (poor, little Witt)...if his potassium level has gone down a lot, he will be able to go the cardiology floor, if not, he will be admitted to PICU. Karen says "We've got 2 hours of knee-scraping, praying time!!!" AMEN!

WITT HAS BEEN ADMITTED TO TCH

Please pray for our sweet, little Witt...he has been admitted to Texas Childrens again. Dr. Macicek had Mel bring him in this morning for an echo and his heart looked really good. But, thank God for Dr. Macicek and his determination to discover exactly what is bothering the little guy...they did a full blood work up which showed that Witt's creatinine level had doubled since he was in on Saturday. As I write they are waiting for a room on the cardiology floor...but, they have taken Witt down to the ER to draw more blood and if his levels have worsened even slightly, he will be put in PICU. The cardiologist came down to see Witt and explained that his high creatinine count could be from dehydration but it also could be something very serious with his kidneys...they just don't know yet. And with his current "numbers" there is always a possibility that he could go into heart failure so they want him in a room and on iv fluids ASAP.

Please pray for a total and speedy recovery...I am begging God to have him home by Christmas!

We will keep you posted...as always, your prayers are appreciated more than you'll ever know!
~Cheryl

BACK HOME

Witt is back home from the ER but...

Melanie took Witt's temperature when she got home it was actually a little high(100.2). I think that technically this isn't considered a fever or at least not a fever that is high enough to treat. However, for Witt any change is cause for concern. For now he is home and staying put. Witt had more blood work done in the ER and it showed that he is actually in some ways doing better than the day before. His carbon dioxide level is up some and the indicators for how hard the heart is having to work are better. Because of this the cardiologist felt comfortable in sending Witt home. He did have to come home on 1/2 liter of oxygen but they expect that will not be needed in a day or two especially now that he can get back on his diuretics. Melanie and Austan have both been suffering from a head cold and our prayer is that Witt isn't coming down with this also. Its hard to know what his heart and lungs can handle. Please pray that Witt is on the mend and not getting a cold! Please pray also that both Melanie and Austan can get some peaceful rest. In some ways it seems like Witt has been home for a long time but it has actually only been about 2 1/2 months...not nearly long enough for Melanie and Austan to catch their breath from his previous 4 month stay. Right now they are all resting after yet again another trip to the ER. Thank You, Lord, that once again Witt was able to come home!

BACK TO ER :(

Mel and Austan decided this afternoon that they needed to take Witt back to the ER...he is moaning a lot, obviously very uncomfortable, and Mel and Austan just don't feel totally confident in deciding whether or not to give him his Lasix. (Lasix is a diuretic and is an integral part of Witt's drug regimen for his heart...but, when he's dehydrated, Lasix is withheld) It took a long time to draw blood because sweet little Witt is a "hard stick" to say the least...he was so upset by the whole ordeal that they actually had to put him back on oxygen. (My heart breaks for Mel and Austan having to stand by and watch this...thank God that Witt is in capable hands at TCH) As I write, they are awaiting the results of the blood work and also to see someone from cardiology.
We'll keep you posted...thank you for praying, sweet friends!
Cheryl

PLEASE PRAY FOR WISDOM!

Witt is still not feeling well. Dr. Macicek said that with his "numbers" he wouldn't probably feel great. The incredibly hard part for Mel and Austan is to know what to do next. They have been told to hold off on some of the diuretic unless his oxygen saturation indicates he needs it. However, because Witt still doesn't feel good(moans a little the entire time he's awake), he also is not really breathing even normally for Witt so his saturation bounces all over. When he settles down his saturation stays up fairly well but not quite as steady as it usually is. I can't imagine having to make these decisions but what I do know is that God can give them all the wisdom and discernment they need. That's my prayer! I am asking God to pour out His wisdom on Melanie and Austan and that His great peace will be prevalent too. I am asking for His wisdom not just so Melanie and Austan can make the right decisions but that by their wisdom and faith that He is glorified! The decisions that Mel and Austan are asked to make about their son would be impossible EXCEPT God! He most assuredly will continue to pave the road before them...sometimes one stone, one decision at a time!

Not quite the "Mr. Bright Eyes" that

he usually is!

Headed Home!

The doctors in the ER, after careful evaluation, decided to send Witt home tonight. They believe that he's already getting better and that it's not a cardiac issue but is the result of being a little sick a couple of days ago. Mel was able to talk to Dr. Macicek after they were released and he cautioned her to watch Witt VERY carefully this weekend.

Praying for Witt to get better and for peace and discernment for Mel and Austan! What an incredible road these young parents have been called to walk! Thank you once again for covering them in prayer...INCREDIBLE!

May God bless each of you mightily!
Cheryl

ER visit...please pray!

Witt has had some diarrhea the past couple of days so Mel has been carefully watching him for dehydration. She has been in close contact with the cardiologists and they have been withholding the lasix but he seemed a little worse today. At his check up with Dr. Lange this afternoon, Mel and Austan asked that extra blood work be done to make sure that all of Witt's levels were remaining in the normal range...the test showed that his co2 and sodium were way off. After unsuccessfully trying to reach the cardiologist on call, Mel and Austan decided to take Witt down to the ER. The charge nurse in ER explained that his blood work results are indicative of dehydration...the trick with Witt will be to rehydrate him at a safe pace...in the past, pumping him full of iv fluids has triggered significant problems.

Once again, I'm in awe of Mel's motherly instincts with Witt! She knows him better than most of us know ourselves. But, even more impressive is her willingness to act on her instincts and act FAST! It's so very important that these issues are taken care of as early as possible before other complications arise.

Please pray that the doctors are able to accurately and swiftly diagnose Witt's trouble right now and that he is healed quickly! Mel and Austan are preparing to move back into their own home this weekend...I'm praying fervently that will still happen instead of another hospital stay. But, as always, HIS WILL BE DONE!

In Christ,
Cheryl

JUST HANGING OUT

Witt went to the cardiologist on Monday and it was a great visit. It was a very long day, we got there at 1 and did not leave till sometime after 5. They ran a few labs to check some of his levels and all of them look pretty good. His B.U.N. was a little high because of his diuretics but he needs the diuretics to help with his lung function. I also talked to the nutritionist about switching Witt over to toddler formula. Since he is over a year old he needs more then just regular formula. We are trying to switch him over slowly since his stomach seems to be very sensitive. Other then Mondays visit this week has been pretty calm. I take Witt on Friday to DR. Lange just to catch up with him and form some plan to get Witt's vaccines up to date. We have not seen DR. Lange since March because of Witt's long hospital stay this summer. Austan and I are hoping to be moving back to our house this weekend or the next. It will defiantly be a bittersweet moment when the time comes but we are only going about a mile down the road. What a blessing its been to be able to stay with my parents this last year. We are very grateful that we have two sets of parents who would open there home to us anytime we need it. As soon as we get settled back in our house I will post pics of Witt's new room.

-Melanie

SNOW!

Since Witt can't go to the snow God just brought the snow to Witt! It was amazingly beautiful and rarely seen here!

Witt also got to meet his newest cousin, Graham. It was a very quick picture then

right back to isolation for Witt!

Witt has an appointment tomorrow with Dr. Macicek. Once again the timing is perfect because Melanie has been concerned that Witt might be a little dehydrated. She has talked to the cardiologist on call a couple of times. First it was decided to hold the extra dose of Lasix. Then today Witt's osat has dropped a little. The cardiologist told Mel to go ahead and give him the dose today. Please pray for that amazing, God given discernment for Melanie and Austan as they will most likely be on a plan that will require them to decide when to give or hold a dose of diuretic. Also, during this Christmas season please remember all the families who will spend it in Texas Children's Hospital!

FINALLY AN UPDATE...SORRY!

I marvel at how well Witt is doing! He remains off oxygen and his saturation remains very good. In fact, the moniter alarm rarely goes off unless he's very active. Today, Witt is being evaluated by ECI(Early Childhood Intervention). Stephanie(PT) has been coming once a week to work with Witt and he is improving. He isn't sitting up on his own yet but he is definitely holding himself up more and more so that he just needs to be propped up some. I remember when he wasn't able to hold his head up...God has brought him so far! Tomorrow its off to Dr. Lange(pediatrician) for his first real check up there in a very long time. Witt will get several vaccinations. He hasn't been able to get any since he was 2 months old because of all the time spent in the hospital. They will find out more about the RSV shot and if more steps are needed to get it approved. Next Monday is Witt's appointment with Dr. Macicek. Hopefully that will be pretty uneventful!

A little side note: I am sorry the blog hasn't been updated as often as I normally do! I intend to keep updating regularly because I want all of you who have walked in the valley with us to celebrate the mountain tops with us also! I have not been able to upload video to the blog because of some glitch. I finally figured out a different way to do it. Those of you who know me will celebrate that miracle too!!! Also Witt's cousin was born yesterday...Graham James McCord to Evan and Annalee(for pics go to http://www.annaleeper.blogspot.com/). Mel is so excited for Witt to have a boy to join forces with!