Monday, March 30, 2009

ZAPP HALL WELCOMES WITT!


Melanie and Austan gave Witt a drive around the antique show this weekend to see some of the dealers. Mindy and Teresa, dealers at Zapp Hall who have followed the blog, take a break from selling and take a picture with the Luphers. Witt had a great time seeing everyone.
-Jim (Witt's grandfather)

Wednesday, March 25, 2009

UPDATE AFTER DOCTOR APPOINTMENT

Witt's visit to the pulmonary doctor (hypertension specialist) today went well! The doctor said that Witt's lungs sound much better. He thinks the drop in oxygen is just because he is slightly anemic and because he is sick, nothing major. He told Austan and Melanie to leave the oxygen turned up for a couple of days while he heals. Thank you for praying!

WEDNESDAY UPDATE

Sweet Witt threw up a couple of times during the night. Witt seems to be doing better this morning and we pray that is over. The pediatrician (who we love!), saw him yesterday. Witt was alert and interacting and the doctor thought he looked great other than the fever. He gave him an antibiotic to fight any infection, which could be what didn't agree with his stomach last night.
Mel is trying to feed him some now. He still has a low grade fever and his oxygen had to be turned up slightly. We are praying all of this is just a "normal" childhood sickness and will pass soon.
He also has an appointment with the pulmonary specialist today at 2pm.
Again, thank you for the way you pour prayer over Witt and our family. We can't ever say thank you enough for the blessing of that.
-Annalee

Tuesday, March 24, 2009

Elle Lupher 6lbs 7oz

Witt would like to introduce his newest cousin! She made her arrival last night at 7:34 on Witt's 5 month birthday. Her parents found out early on she as a heart condition called TOF. She is currently spending time in Witt's old stomping grounds. Elle will have several test done to decide the best way to fix her heart one of which could be surgery. Would you please pray for Lee and Lisha to have wisdom and peace as they walk through this time. Pray Lisha would have strength and healing for her body after having a baby. Of course lift up sweet Elle that she would be safe and they would fix her heart with no complications. I know the situation all to well and it can be exhausting. They don't know how long she will be in the hospital but like with Witt we are all grateful for a place like Texas Children's and the wonderful care they provide for our kiddos.

you can read more updates about witt's cousin at
http://leeandlisha.blogspot.com/

WHAT A WAY TO BEGIN 5 MONTHS!

Wow....Witt decided to start his 5th month off with a bang but so did God! Right now its hard to know with Witt what might be a more everyday baby thing and what is particular to Witt. By the time we got him to ER his heart rate was in the 190's and even hit 200! Needless to say a few red lights were run by Austan to get him there. I have never seen the Texas Children's ER so packed. People were literally 2 deep in chairs and overflowing to the floor. It is amazing how you move right to the front of line when you have oxygen, a feeding tube, a heart alarm going off and a grandmother clearing the way!! The preliminary tests point to just a virus. The chest xray and EKG show the heart and lungs to be doing great. We were told it's not unusual for the heart rate to increase significantly with a fever. All things point to a very normal virus. This even could help build his immune system. The doctor said that bringing Witt in was absolutely the right thing to do because of his history and now we have some typical baby history...glory!! I always feel God so near in these situations...I continually heard Him say He was in control. We are all back home now getting some much needed sleep except of course, Witt! I hear him in there just "talking"!
-Karen

Ready for the EKG wires!!

Worn out mother and child!!

Monday, March 23, 2009

ER and L&D...please pray!!!

Witt has continued to run a low grade fever all evening and his heart rate has been higher than it normally is. Mel and Austan have decided to take Witt on down to the ER after talking to a couple of nurses and a Cardiologist. The Cardiologist didn't seem to be too worried about his elevated heart rate...but, there's always a concern of urinary tract infection when Witt has fever because of the kidney reflux he has.
We are just praying that the doctors can rule out any infection and send that sweet boy home tonight! Mel and Austan continue to amaze me with their strength and faith through trial after trial. They are truly AWESOME.
**11:30pm text from Karen...
Right now they are thinking it's a normal childhood thing...not alarmed at heart rate. His fever was 101.8 with rectal thermometer. No sounds of fluid in lungs. Will do battery of tests.


AND, please keep Lisha, Lee and baby girl Lupher (Austan's brother and his wife) in your prayers, too! Lisha delivered Witt's newest cousin this evening...the sweet little girl decided to come a couple of weeks early.

5 MONTHS OLD!!!

Witt is 5 months old today! He actually is running a little fever...99.2. The doctor said to keep an eye on it. His oxygen saturation remains at 100 so that's great! Right now he is resting well on the couch. This week is crazy with the entire family getting ready for the antique show. In the midst of all the craziness and Witt running a little fever, I continue to hear God tell me that He is in control...to be still an know that He is God. I have learned this really well and yet I need God to continually speak it to me. I have never trusted in and rested in the truth that God is in control more than these last 5 months! I need God to continue teaching this old dog His truths!!!
-Karen

Tired 5 month old!!

Sunday, March 22, 2009

"FIRSTS"

Witt continues with lots of "firsts" today! It started with his first home visit from Rise'. This was by no means her first time to see Witt. Rise' headed here to the hospital right away when Witt was born! Witt made lots of first trips to stores as Melanie and Austan took him with them to Old Navy, Target and Ikea!!! We ended the day at a new Denny's. What was really funny was that not only was this Witt's first Denny's stop but we were the very first customers at this Denny's location! God has been so gracious to continue to allow Melanie and Austan (all of us!) to experience so many "firsts" with Witt! As I was thinking about all these "firsts", I am reminded of the greatest "first" ever: "We love because He first loved us". God's love truly is amazing.
Thank you for all your prayers. Witt's oxygen saturation is doing great. Also, Cheryl's eye is healing...it's still a little swollen but on the mend! I don't really have much to share about Lissie's brother-in-law but I do know he has not had anymore seizures. Thank you to each of you that have invested so much in Witt's and others lives through prayer...I am eternally grateful!!!
-Karen

Rise' and Witt


First Customers at Denny's!


Witt's Grand Slam Meal in a Bag!

Saturday, March 21, 2009

"No matter how long the winter, SPRING is sure to follow." -Proverb

Yesterday morning was a big outing for Witt. He has been approved by the doctors to get out of the house, so Mel, Witt, Karen, Adelaide and I planned a special trip to the store together. It took some time and coordination to make it happen, but it was well worth the effort!
While we were out lots of antibacterial soap was used and we all love the reminder tag on Witt's stroller that says, "Please wash your hands before touching mine." Thank you Nurse Abbe for sharing it with us.
Who knew the day would come that going to Walmart would be such a fun adventure instead of a chore? It was delightful to pick out spring clothes, Easter basket items, toys, and even toiletries and necessities all together! What a wonderful way to spend the first day of spring.


As you pray for Witt today we ask a special prayer for Witt's lungs/oxygen saturation. In the hospital it stayed at 100, but its been dipping some since coming home. He has been much more active and in different positions so hopefully that is the only cause for the change.
Thank you,
Annalee

Thursday, March 19, 2009

Today has been a great day...a normal day! Witt had lots of visitors today. It's so wonderful for people to come over. Tomorrow we are going toy shopping with Witt's cousin (my oldest grandbaby!!), Adelaide. This will be Witt's first trip to Wal-Mart! I think its got to feel good to Melanie to feel like life is getting a little "normal". Witt's next couple of weeks will hopefully be kind of quiet. He does have weekly PT and OT but no doctors appointments for a little bit. Witt might even make an appearance at the Zapp Hall Antique Show (http://www.zapphall.com/) at his great grandparents house in Warrenton!! Please continue to pray for healing of his lungs and his swallowing. Hopefully the feeding tube will not have to be in for more than a handful of months if he gets more coordinating in his swallowing. Witt's oxygen remains at 1/4 but that honestly could be turned down even more. Also the doctors really want Witt to gain weight and grow! He is getting milk fortified with powdered formula.
-Karen

Here are some pictures of Witt's guests today!

Molly, Malachi, Melanie and Witt


Annalee, Adelaide and Berkeley


Pamela and Lynn


Carrie, Melanie and Amanda

Wednesday, March 18, 2009

PT, OT AND HOUSE UPDATE!

Today's Physical Therapy and Occupational Therapy (for swallowing) was great! It was great because his 2 therapists are wonderful...today Witt was a little tired and exerting his strong will. The PT said he was behind but because of the things he does do she believes he will catch up over the next several months. It actually was a blessing to get out with Witt. He has been cleared to get out! The good thing with the feeding tube (not that you would ever choose it!) is that he can eat on the go in his car seat. The pump is totally portable as is his oxygen.
ALSO...the work has now begun on Melanie and Austan's house! It is being torn down to the frame and foundation. They will be able to make some fun changes and to add on! It will take maybe 2-3 months then it will be like they are moving into a brand new home!! God is Good!!!!!
-Karen


Flirting with his PT!!!!


Eating on the go!!!


Tuesday, March 17, 2009

PLEASE MOM, JUST 10 MORE MINUTES...

Witt's first day home has been good. The adjustment from hospital with equipment and feeding has gone well for parents and Witt. His favorite thing to do in the morning is to tell mom that he needs just 10 minutes more of nap time.
But, the schedule won't slow down because Witt has some PT and OT tomorrow and on Thursday Witt gets to meet a new friend, Malachi Milillo, the son of Mel's good friend Molly.
So Mom make sure I get my 10 more minutes!
-Jim

Monday, March 16, 2009

PLEASE...IMEDIATE PRAYER FOR LISSIE'S BROTHER-IN-LAW

This is Witt's blog and will always be but every now and then we post a prayer request. I have first hand knowledge of the power and effect of prayer. Lissie's brother-in-law Michael Donham is in need of prayer. Lissie is a friend of our family that I think of more as a member of my family. Lissie has always poured out her life for my family, consequently all our families have become close. Michael is married to Lissie's sister Dinah and they have 4 boys ranging from junior high to preschool. Today Michael started having seizures and has been in and out of unconscious. Michael's seizures are not stress or chemical (low potassium, etc.) related. They have done a CT scan and it did show density of a vessel which may not mean anything. He is having the lumbar puncture (spinal tap) now to check for infection in the brain. He will also have an angiogram tonight to check for blockage. Tomorrow will be an MRI and EEG. He had a 3rd seizure around 7pm. but the doctors stopped it with medication. Now he is on morphine for the pain caused from the seizures. Sweet Michael has requested his book on Philippians because he wants to go to his Bible study tomorrow. He doesn't realize that won't be possible. Please pray for this family...for Michael, Dinah, Lissie and all the Miller family. Cheryl and my mom are headed to Dallas early tomorrow to be with them. I will post an update as soon as I know anything.
-Karen

FINAL PICTURES FROM THE HOSPITAL

We are headed home with the pump...praise God. Thought I would post 2 final pictures of
Melanie, Austan and Witt...enough said!!!
One final "rock"!!

Face to face with daddy!!!




PREPARING TO GO HOME!

Today is full of activity to prepare to go home! Right now we need prayer for favor with the insurance company. They are refusing to pay for a pump since Witt is not on a continuous feed. The problem is because of his size, he has a very tiny tube in and just letting gravity feed him will most likely take too long so will need a bigger tube. The bigger tube could cause some damage. The insurance company said that they would need a couple of weeks to review the request....seriously?!!!! Austan is on the phone with them right now! I know God is in control even as Austan walks out the steps! The nurse will also teach Austan and Melanie how to put the nasal tube in if it were to come out. The longer wait today will probably be for the pump (if approved) to be delivered to the hospital by the medical supply company. We sit here waiting...trusting in God's perfect timing for Witt to go home...His perfect timing down to the second that we leave the hospital! I am praying for God to make the most of it while we are still here!
-Karen

Sunday, March 15, 2009

GOING HOME TOMORROW!

Witt is ready to go home and all of us are ready for him to come home too! Tomorrow the nurses will train Melanie on putting the feeding tube back in if it should come out. They will also replace the current tube with one that lasts 30 days. Tomorrow the nutritionist will also come and show Melanie how to mix the powder with breast milk to fortify it. This has been an incredible two weeks of ups, downs and unknowns! I am grateful that it was discovered that Witt was aspirating. Feeding with a tube is not any one's first choice but in the long run Witt will be much healthier. He has also been seen by physical therapists and occupational therapists which will continue as an outpatient. God has revealed His faithfulness over and over again through Witt's stay in the hospital. He has shown Himself as our Strength...the very Air We Breathe!!!!
Happy to be going home tomorrow!

Saturday, March 14, 2009

A MONDAY HOMECOMING!

Witt is going home Monday! Melanie and Austan decided to bring Witt home with the nasal feeding tube and not have the surgery right now. Witt's doctor said he is doing great and very ready to go home. The more permanent feeding tube can be put in at anytime. Mel and Austan both feel very good about this decision. Witt will most likely have the swallow test done again in a couple of months. Our prayer is that Witt will be swallowing without aspirating then! He will have a feeding tube until he is not aspirating. This was a very hard decsion for Melanie and Austan. All they have ever wanted is what is best for Witt...discerning what that waCheck Spellings in this situation was tough. Thank you for all the prayers!!

Friday, March 13, 2009

GOOD NEWS!

I just got to stand in on rounds for Witt...it so Grey's Anatomy...at least to me! I keep thinking which ones are dating and what really goes on in all the storage rooms? On to what matters in this life...Witt's carbon dioxide number is 59!!! The doctor was just hoping it would be in the 60's even high 60's...GLORY!!!! The x-ray is unchanged but (as I learned in our rounds!) that is good and somewhat expected. An eager resident quickly informed me that its quite normal for the xrays to take some time to catch up to what is actually taking place. In other words, clinically (blood tests, listening to lungs etc) he is doing so much better but it may take a few days for the xrays (inside of the lungs) to actually reflect that. Mel and Austan still need to see the surgeon today and make a decision about the more permanent feeding tube. Amazing God. He is worthy of all our praise regardless of any circumstance or test result...nothing changes His worthiness!!

Bath time!

Stylin'!!!




Thursday, March 12, 2009

TESTS AND A DECISION!

Witt is continuing to improve! His oxygen is now turned all the way down to 1/4 and his saturation is 99-100!!! What this indicates is that his lungs are getting better. Tomorrow holds several things. The first is a blood test to measure the carbon dioxide levels. This number should be in the 40's and Witt's so far has been in the 70's. The doctor is just hoping it will be in the 60's...even high 60's. God sure could grab some attention, attention that He already is worthy of regardless, by having that number come back significantly lower! That's my prayer...a low number and high praise! The praise will be here no matter the test results! The second is a lung x-ray. It has been several days since Witt has had the tube and not aspirating. Hopefully this too will show significant change. If these do show change it would be a pretty good indicator that the aspirating was contributing significantly if not the only cause to the remaining lung disease. The final major thing that will take place tomorrow is that Melanie and Austan will meet with the surgeon who would put the feeding tube in should they choose to do this. The procedure itself is relatively simple but once again it would involve Witt being completely sedated and intubated. Witt would go from the surgery to the PICU and remain intubated for 24 hours then they would try to get him off. This is a scary decision for Melanie and Austan to make. Please pray that God reveal His decision to them however He deems!! Melanie is concerned about the timing since Witt's lungs are still an issue. Witt could go home with the feeding tube in his nose and come back in a few weeks but the attending doctor strongly recommends he get it now. The doctors would like a decision as soon as possible. I would like God's decision in His perfect timing!!!

GO FOR THE RING!

Witt grabbed the ring! It may have been more accidental than not but its the way they catch on. And no, this grandmother did not stage it although I have been known to stage a few pics!


GREAT IS OUR GOD!

How great is our God?!!! He is greater than we can imagine, more faithful than we understand, and more loving than we can pour back out! Yesterday, I asked you all to join me in asking God to give Melanie and Austan wisdom to make a decision about the cardiac cath test. Austan and Melanie neither one wanted this test done and stayed persistent in their questioning. Melanie just didn't feel right about this procedure. Even though the doctors tell you its minimal risk, it still would have involved sedating and intubating Witt. Unless the test is necessary, Mel and Austan didn't want this risk taken and they could not come to a peace about it. So we prayed! And our Great God, who accomplishes more than we could ever ask, took the decision out of their hands. When the doctor (Dr. Justino) came to talk about the procedure, he said he wasn't convinced completely that this needed to be done. Dr. Justino is the doctor that the pulmonary people highly recommended to do this. When Melanie and Austan told him that Witt was discovered to have silent aspiration and now is on a feeding tube, Dr Justino said that was it. That information pushed him over the edge of not doing the procedure. I think one of the very cool things here is that Mel and Austan walked in this as we all should at times. They didn't not have a peace on a decision here so they kept walking. Sometimes we just have to keep walking towards an end result, gathering information to make an informed decision all the while asking God to give us wisdom, to intercede. I know that Melanie and Austan don't even know the example that they continue to set, nevertheless (or maybe because of that!) God uses them to show us how to walk through incredibly tough situations! Late last night, Melanie was answering questions from the night nurse all about Witt...did she know before he was born, etc. Later, Mel said she hoped she didn't scare "moms to be" with Witt's story. I told her I believed it was just the opposite. Witt's story offers hope! Yes, he is an example of something out of the ordinary that can happen but greater than that, Witt is an example of God's goodness, faithfulness, strength, joy! Mel and Austan are very real examples with real emotions for expectant parents to see. Yes, your child could be born very different than you would have wanted but the child you have can still fill your life with love and joy from God!

Thomas Gilmore update: Thomas is the baby who was born with the heart condition called Tetralogy of Fallot. His surgery lasted all day yesterday but was very successful. Please continue to pray for his healing and strength for his parents (Brian and Erin). For more detail please visit Thomas' website: http://www.carepages.com/carepages/ThomasCrawfordGilmore. I am positive your prayers and encouragement will help them greatly...I know...I have experienced it first hand!

Wednesday, March 11, 2009

ANSWERED PRAYER!

We had answered prayer this evening in the form of a very CLEAR ANSWER from the Cardiologist...he believes that it is premature to do the cardiac catheterization!!! Karen will update later with more specifics but as I understand it, he feels like they need to wait a couple of months to see if the aspiration was causing the pulmonary hypertension. While the risks of the cath procedure are minimal, he said that right now the benefits just simply don't outweigh the risks. This decision was confirmed by Dr. Ruiz, the "head honcho who specializes in pulmonary hypertension!" (I had to quote Karen here because her description of him cracks me up!!!)

We are so relieved that Mel and Austan didn't have to make this very tough decision themselves! We are SO thankful that we are loved by a Creator that is infinitely involved in ALL the details of our lives!!! All Praise and Glory be to God!!!

And now, it's my fervent prayer that Mel, Austan and Witt will get some much needed rest tonight!!!
Godspeed, sweet Luphers!
~Cheryl

LOVING,FAITHFUL GOD!

Yesterday afternoon was a hard time for Melanie and Austan. The attending came in and talked to Melanie more about the cardiac cath test. The doctor who would preform the actual test will come by sometime today to answer all their questions. Since Witt is improving, the attending was also going to go back to pulmonary to make sure the test was necessary right now. As I believe I have posted before, this very invasive test is the only way to get exact measurements of the pressures in the lungs and heart. It would however mean Witt would be totally knocked out and intubated so it has risks! The doctor also talked to Melanie about putting a permanent feeding tube in Witt. It's permanent by structure not duration. Right now Witt's feeding tube is through his nose. They only like to leave a tube there for no more than 30 days then surgically insert it through his side to his stomach. This really hit Melanie hard. We know Witt has been aspirating so fluid has been going to his lungs instead of his stomach. Since he has been on the feeding tube, his oxygen has been cut in half and could be turned down more. How long Witt will need a feeding tube depends on how long Witt takes to learn to swallow correctly. A ballpark guess is 6 months to a year but that is just a guess and of course does not include God! What I saw God do was nothing more than miraculous with Melanie. Melanie was once again crushed. She said she feels like she keeps getting up and run over again and again. The fact is its pretty true...I couldn't tell her she was wrong. Her anger yesterday is certainly understandable but I got to witness a transformation. I watched as God ministered to her through a 3 week old baby (Thomas Gilmore: http://www.carepages.com/carepages/ThomasCrawfordGilmore) who is having heart surgery today. Thomas' aunt is a friend of ours. I don't even know if Melanie fully realizes what happened. I watched as Melanie moved from being overwhelmed by her circumstances and looked outside her situation. Melanie reached out to this family who she has never met. At 10:00 last night Melanie left Witt's room to try to find the mother. Melanie doesn't like to leave Witt's side very much but God lifted her out of her circumstances to sit once again with Christ in the heavenlies! What an amazing, faithful God we have. He is Love!! Over the next couple of days Melanie and Austan will need to make hard choices for their son...choices that most of us will never have to make. Pray that God reveals the correct path for them to follow...the path that for Melanie, Austan and Witt the fullness of God dwells!!

2 NEW VIDEOS

Witt Pumping Iron...okay its plastic rings!
video



Witt Talking To Melanie!
video

Tuesday, March 10, 2009

WITNESS THE LIGHT

This is John 1:6-9, with a name change.
There came a child who was sent from God; his name is Witt.
He came as a witness to testify to the world, so that by him all people might believe.
He himself was not the light; he came only as a witness to the light.
The true light that gives light to every man has already come into the world.

God's love comes in many unexpected ways. He gives us hope and purpose to share our lives to a waiting world. Thank you Melanie and Austan for sharing your son with our world.

PRAYER AND PICS

Still not really anything new from doctors here! Witt's feeds have now been adjusted to more closely fit the schedule he was on at home. The doctors have very carefully calculated the number of feeds, calories and liquid. The breast milk is being fortified a ton so that Witt is getting much more calories but not more breast milk. Since he is on a diuretic to pull fluid off, they don't want to increase the amount of fluid he already gets. Here is what we do know from the latest blood work done yesterday: the numbers that needed to change have definitely changed in the right direction. The doctor mentioned that Witt has now been stable for several days. One of the indicators of how hard the heart is having to work is a hormone that can be measured in the blood. That level is still a little high at 129 but it was in the 700's when he came in! The prayer needed today is for wisdom...wisdom to make the right decision about the cardiac cath test. This would require Witt to be knocked out completely (and intubated). Melanie and Austan both are against this right now but need to be sure they have all the information before they actually decide. Actually, God will have the final say but He expects Mel and Austan to collect all the information so He can clearly lead them. Please pray for them in making this decision and that an overwhelming peace will affirm it!

My View!

Witt's View!!!

Monday, March 9, 2009

MELSKI AND MARIO KART!

Melanie and I do have some fun here at the hospital passing the time. Here she is drinking from Witt's "bottle"!!

Austan has us set up with a small flat screen TV and wii!! Mario Kart is our favorite. The nurses are cracking up that we are playing it. I ,of course, being the competitive one that I am, make them wait while we finish the race to talk to us!! Nah, Witt does come first....I come in first place however! And look...Witt is right there for us to watch. Mario Kart...weeeeee!!!!

On a more serious note...Here is the latest sign added to Witt's bed. Annalee made it for Witt and I agree with Evan who said that it sums it up nicely!


Its been a long day for Witt with the therapy and all the medical staff in and out! He's a sleepy boy!

THERAPY TODAY!

Witt is doing well today. His blood was drawn a couple of times today but we don't have the results back yet. The attending wants to leave Witt's oxygen where it is even though it could be lowered. He doesn't want him to use any calories trying to keep the oxygen up! Also, they are going to try to feed him a little more every 3 hours and skip the middle of the night feeding that he had pretty much dropped at home. Last night he woke up when they started this feeding and was awake off and on until morning. Witt got his first physical therapy and I heard a lot of: "That's really good"!!! Occupational therapists are coming today also to begin the swallowing therapy. Discussions are on going doctor to doctor and doctor to us about wanting to do the cardiac catheter test. At this point Melanie and Austan do not want it done. It will still be some days before that decision has to be made. John Young from our church (First Baptist) came by today. What a blessing to have him here. He read from Psalms 42 and 43. John reminded me that times and circumstances can be hard and unexplainable. John said that throughout those 2 Psalms the writer calls God by some amazing names (Savior, Rock, etc.) and yet throughout he also admits that his soul is downcast and wants to know where God is. Very honest emotions but ends up with his focus back to Who God is...his Savior! Both end with asking: "Why are you downcast, O my soul? Put your hope in God, for I will yet praise Him, my Savior and my God." I pray that for all of us, not just Melanie and Austan, but all of us are able to remember Who God is and keep Him as our focus no matter what circumstances we are walking in. Once again thank you,each of you for your comments and prayers. You are God's hands and feet that sustain and carry us!

PRAYERS FOR BABY D!

We are beyond grateful for all the sweet prayers y'all offer daily for Witt. There is a faithful reader, Mandi, who encourages us often with her comments and prayers. Today we ask you to pray for her family and her foster son "D," who they hope to adopt. Feel free to visit their blog (click here) and let them know you are praying for their family. To read more about their story to becoming foster parents you can click here. Thank you all!

Sunday, March 8, 2009

WORSHIPPING WITT

I believe Witt is going to be a real hand raiser worshipper!

video

WITT'S BED

So far Witt's bed is the only thing with decorative flair in the room!
In case you need to know...The I "heart" sign says: I "heart" wienies...
Bella and ZsaZsa, of course!
Witt in his bed! I love my Bold Blackberry. I can
now video and post it!
video

PRAISE AND PICTURES

It's Sunday and the praise music is going! Not much happening on the "doctor front" so we thought we would post pictures.

Starving!!

Lord, please send milk!


Sucking pacifier but not air...his oxygen is turned
down to 1/2 liter and his osat is 100!!!!

Saturday, March 7, 2009

PT AND OT

Still not anything new from the doctors but we didn't really expect to hear much over the weekend. Witt did however perform well for the physical therapist. He was evaluated by PT today. Melanie asked for them to come and evaluate Witt since he is here in the hospital. The therapist said he has good control of his arms and legs. Its also great that he can totally control his head in most movements even though he still "bobs" his head when you hold him in sitting position. The therapist was pleased also in what he did when she rolled him over. It's the cutest thing...right now he is trying to "talk" to Mel. It's one of the greatest sounds in the world! Witt's oxygen had been turned up to 1 liter but today it's turned down to 3/4 liter. Please pray we can keep it here and over the next several days turn it down more! Witt will now receive physical therapy 3 times a week and occupation therapy(for swallowing) twice a week. At least while Witt is in the hospital, they all come to him! Carol Scott will understand this...I am thinking that as long as we are here we need some decorative flair. I have already checked out the other rooms for items and will have to venture outside the hospital! First, I think we need a good lamp! This lighting is way to "sterile"!!! Some kind of table would be great but I probably can't get that by the charge nurse. We have no clue how long Witt will be here but we will make the best of it!!

Friday, March 6, 2009

UPDATE, FRIDAY, MARCH 6th

We don't really have anything new to update but we definitely want to keep in touch with YOU!
Please join us in praying that the feeding tube will make a difference in Witt's condition. We are so hopeful that this is the reason for, or, at least, a HUGE part of, the hypertension and wet lungs. While we are all saddened by the prospect of Witt being on a feeding tube for an extended time, this seems to be a relatively "easy fix." (I want to remind you here to continue to lift Mel and Austan up...this "easy fix" means that they may never give Witt another bottle.)
I was finally able to go down to the hospital and just "hang out" with Mel and Witt today. It was so fun to just laugh with Mel! She's the same "Melski" through all of this...a perfect combination of feisty and tender...and, a "mama bear" that is going to bat for her son at every turn!!! Witt is just a darling and looks fantastic...there is NO doubt that he simply ADORES his mommy!!!
As I've said many times before, I not only love my Luphers, I'm inspired by them!!!
~"Fantastic Aunt" Cheryl
(because I'm not old enough to be a "Great Aunt!")

Thursday, March 5, 2009

SWALLOW TEST RESULTS

Once again I am not sure where to begin so let's praise God and rest in Him! Witt's day started early with the swallow test. It's an amazing little test to watch! What we did find out is that Witt does have aspiration. This is where our total dependence on God has got to remain! This could be really great news yet with it is some news that Melanie never wanted. The great thing is this could be a major contributor to all Witt's lung issues...the wetness and the hypertension both! Also, this is not an anatomy problem just sometimes everything doesn't work right together so milk goes into the windpipe (to the lungs) instead of down the esophagus. He could even get reoccurring pneumonia from this. But, this that could be a fabulous answer from God has a huge downside for Melanie. Witt now has a feeding tube and there's a great chance it will be permanent for a while and she will never feed him a bottle again. Please, please lift Melanie up in prayer. She is an outstanding mother and this is breaking her heart...a heart that is so tender and beat up right now! I don't know exactly how Mel feels but the pain she feels for Witt must be excruciating. We won't know how much effect the aspiration has had on the lungs for a few days. Once again...all the recent set backs could be due to this or at least at minimum it is a contributor. Pray that we cling to Christ while all this is worked out!
On the way to the test this morning I received an email from Jessica. I wrote about her a couple of days ago. Her sister passed away and I got to pray with her. She emailed and thanked me for praying with her right after her sister died. She said they were just the words she needed at that time. She said she and her mom are doing the best they can but she asked if we would pray for her mom, Adele. Jessica said it would mean a lot. Please lift them up too! God is so incredible. I had nothing special from me to offer her but Christ had everything. You guys who know me know that I take absolutely no credit for this...it was all God. It was God that kept my head enough above the circumstances to even see the girl and it was most certainly God that intervened in her life! This same God will comfort Melanie and Austan. He will lead us in truth to reveal what is going on in Witt. He might even reach down and directly heal Witt's lungs. Even though God may choose not to reach down and heal...make no mistake He is here...he is carrying us every step of the way. Mel said that she didn't know if she could do this anymore. I said that she probably couldn't, nobody could but Christ can! I sit right now with Melanie on one side of me in bed sleeping and Witt on my other side sleeping too. Maybe circumstances aren't the best but nevertheless this is a huge blessing to me...both Mel and Witt. Thank you, God...all glory and honor to You!!!
Here is a picture of the signs that Melanie has so far hung on Witt's bed. I love the name card, I love the scripture but I really love the middle sign. All I can say is: "Only Melski"!!!!!!!


Wednesday, March 4, 2009

SLEEPY WITT...WIDE AWAKE PUPPET!

Witt is sleepy now but that IV "puppet" just won't give it up!

DR. RUIZ

I wished I could do a big conference call to each and everyone of you who read Witt's blog and pray for him! We loved this doctor...Dr Ruiz. Okay, maybe too strong of a word for Melanie but she has never loved doctors! Loved his approach, his manner, his knowledge! He left with all of us knowing truth but feeling good. Not because we don't really know what's going on. Witt is right now in a position where yes, if he gets worse that could be bad but the doctor is hoping to get Witt better. He definitely believes that the lungs and heart are both playing a part but that taking care of the heart will help the lungs. He is really glad to have the swallow study tomorrow. Right now Witt's lungs are in a bit of a precarious position...if he were to get sick, it could be very serious for Witt because right now he is using close to all his lung capacity and has nothing in reserve to use if he catches something. This is why the doctor last night said he would have to be intubated. That is a possibility but only if Witt suddenly gets worse and a lot of other options are exhausted. This specialist would like Witt put back on the Analapril for the leaky valve. Witt's oxygen need did get much better when he was on this medicine. If it helps but has a negative effect on his eating they will deal with that. Honestly, we don't know anymore than we did last night. However the doctor last night left it up to us to discern what was actual fact and what might be. Dr. Ruiz made it all very clear! Last night the doctor implied that if Melanie were a little older and if this wasn't their first child it would be easier. Seriously, if you are fifty and your child dies its easier or (in Melanie's words) if you have 8, you have one to spare! Honestly, I can't imagine being a doctor in this situation but I really appreciate the ones that seem to also have a grasp on the fact that their words are huge! Witt is in a position where a little good step is huge and so is a little bad step. Please pray that all these noninvasive tests and steps will bring about an improvement so Witt doesn't have to go through the more invasive testing. Actually, I am wholeheartedly asking God to heal Witt! Once again, I faithfully trust in who God is and leave the healing decisions to Him....but, WOW, the glory God could receive and the attention He could get from the doctors could be incredible! We as a family will always praise the Healer all the while petitioning Him for and thanking Him for His miracles!-Karen

PRAY FOR CHERYL!

Would everyone please pray for Cheryl (my little sister, Witt's GREAT Aunt). Ever since the first of February she has had a fever blister on her eye. She had this years ago. It has been so very slow to heal. The danger has always been that the infection would go deep and that could cause permanent vision loss. Her eye had been slowly improving until a couple of days ago. Cheryl just went to the eye specialist this morning and was told that the infection has gone deep and now is a 9 out of 10 in severity. Cheryl and all our family members have gathered around to support Melanie and Austan. Join me please in asking Christ to not only be at work in this hospital room but to be a real support for Cheryl and heal her eye. I praise God that He is omnipresent! I praise God that He is right here with us and right there with Cheryl!

GODLY WISDOM AND PEACE

Once again words fail me...words to try to relay to everyone what the pulmonary team said yesterday and words to describe how God Himself is Our Very Present Help! When all the dust settles, what is left is that the doctors right this second don't know what is causing the pulmonary hypertension. The range of possibilities is staggering. It could be a relatively easy fix with medication or it could be something that ends up incredibly complicated with just a short term fix. The pulmanologist made it sound like at any second he might need to be intubated or at minimum a "mask" put on him to help him breathe. Pulmonary believes very strongly that the leaky heart valve is adding his lung issues but cardiology still disagrees. Pulmonary wants a very invasive cardiac catheter procedure done and at this point cardiology is not willing to do it. Right now the only thing the doctors agree on is that Witt needs a swallow study done. This will tell us if Witt is aspirating when he swallows which could also add fluid to the lungs. There are so many variables, so many unknowns. It also makes it incredibly difficult to focus only on the truth that we know right this second and not get into the "what ifs". So where we must focus is on the One and Only Truth. Praise God that with Him there are no variables, He is the Stability of Our Times. Please pray that God would intervene in a mighty way and heal Witt's lungs...that the doctors are given the wisdom to discern what is causing the lung problems. Please pray that by God's grace Melanie and Austan will not only be sustained but be at total peace and that joy still fills Witt's room. Pray that the hospital staff will see a difference in Melanie and Austan and want to know where that difference comes from! There is no doubt that apart from Christ this burden would be too great but Christ is very present here...He is our very present help in times of trouble!

Tuesday, March 3, 2009

PRAYER REQUEST FROM KAREN

Here's an email I received from Karen just as I published the last post...I thought you would enjoy reading HER words. And, please pray for this family as they try to walk through such a tragic loss.

Cheryl...I can't describe what happened when Jason entered the room...the very presence of Christ was felt and at the very time that darkness was overtaking us! Let me also tell you about what happened the second I hung up from you. I was using the phone in the family room. I hung up, turned around and 2 girls (20ish) were sitting there crying. I went up to them knelt down and said that I didn't want to intrude but that it looked like they must have gotten bad news. Jessica (we all need to be praying for her!) said that her 18 year old sister just passed away. Jessica was sitting with her friend Tiffany. Jessica's mom was still in the room with her sister's body. God allowed me the blessing of praying right there with them! Would you ask for people to pray for Jessica, her mom and Tiffany? They have suffered great loss and her friend is standing with them. Cheryl, God's presence here is so apparent. Tell everyone not to worry but praise our Great God for what He did tonight in our lives!!!

GOD IS FAITHFUL AND HE IS PRESENT!!!

I have just hung up with Karen and I so wish that every one of you could have heard the calming sound peace in her voice! I am in AWE of the works of our tender, loving Father! While nothing has changed with Witt from a clinical perspective, God sent His PEACE to Witt's room in the human form of two very dear people...Jason Swiggart, the pastor who married Mel and Austan, and Dr. Lange, Witt's pediatrician. These two men, who have such special places in all of our hearts, were truly used as instruments of God tonight! They may never fully realize how much their obedience meant to a family that was literally raw from emotion...their visit had an impact that only our faithful, loving God could direct! Karen described it as literally going from Darkness to LIGHT! She said that there had been a blanket of fear and sadness that was covering the whole room...oppressive...but when Jason walked in, followed almost immediately by Dr. Lange, God's presence was overwhelming and undeniable! She said that Jason honestly brought a LIGHT into the room as he entered.

Four of my favorite people in the world, Mel, Austan, Witt and Karen were cradled and loved on by our Heavenly Father...but He did it through two very special men!!! May the rest of us never miss the opportunities God presents in our lives to use us to bring His Light to His children in need!

Thank you, Father! Your Hand is tender and mighty...may You continue to cradle Mel, Austan and Witt. May we never miss Your lead. And, may we always praise You...Your GRACE IS SUFFICIENT!!!
Humbly and thankfully,
Cheryl

PLEASE, PLEASE PRAY!!!

The Pulmonary specialist came in this evening with preliminary findings. I'm a little fuzzy on the specifics as I wasn't there, but what I know for sure is that we need your prayers and God KNOWS the specifics!!! As I understand it, Witt definitely has Pulmonary Hypertension but the big question that remains is what is causing it. Please pray for Mel and Austan...this news has really rocked this precious, precious couple. Witt will be undergoing lots and lots of testing...please pray for wisdom for the doctors and nurses...and that they would deliver the results in a very compassionate way. The "could be's" that were presented to them this evening were vast and overwhelming. Actually, to say that Mel is overwhelmed right now would be a huge understatement...devastated comes closer to describing it. Austan has been a rock...an incredible support for Mel and advocate for Witt...but they need to be lifted up!!! Pray for strength and comfort for our little Witt...he is a fighter and he has surprised the professionals before! I'm praying that our mighty God would use this opportunity to really SHOW OFF!!!

We will continue to update as we have a better understanding of everything...but, thank you, thank you, thank you from my entire family for your incredible prayer support! You have blessed us immensely!
~Cheryl

Monday, March 2, 2009

WITT HAS A PRIVATE ROOM!

Witt now has a private room! It would not have been accomplished without our day nurse Grace (she is pregnant...pray for her baby girl!)the charge nurse and others who kept "pushing" for Witt to get his own room. If we ever wonder where God is in this...He is right here, working through these people!! Tomorrow will be full of lots of tests for Witt. Cardiology, right now, after more x-rays and another echo believes nothing has changed in Witt's valve since last Tuesday when they said it is a not an issue with his lungs. The pulmonary doctor doesn't necessarily agree so they will need to figure it all out! Thank you that with God we never have to wait for Him to figure something out. He may not reveal something to us because of His perfect timing but He's not trying to figure out what truth is...He is Truth!!
Witt's Hand Puppet...Better known as his IV and protector!





NEUROLOGY AND PULMONALOGY

The neurologist came by and said Witt's "blue" episode was a textbook example of what happens with some very normal babies starting around his age to 2 years. It is not life threatening (except for a grandmom's life!!). The pulmonary specialist just came by and said they will be running several tests and he is not convinced that the heart leak doesn't have something to do with his lung issues and need for oxygen. Along with talking to cardiology they will also begin to rule some things out. He believes Witt's oxygen can be turned down but cannot say if and when he could be totally off oxygen. We are at that point of the faith walk again...having to walk this thing by faith in Who our God is and trusting in Him. There are so many variables that could be contributing to the lung issue. We are grateful that pulmonary is now a part and yet all this could once again be mostly attributed to the heart but other factors could still be playing a part. Over the next several days Witt will go through more testing and evaluations. Please pray for an undeniable overwhelming peace to fill Melanie and Austan as they wait for answers.

WE HAVE THE NEED...GOD HAS THE ANSWER

Here's my prayer request: that Melanie and Austan would be walking in the exact steps that God has for Witt right here and now at this hospital. The situation is incredibly frustrating! Once again we are waiting for cardiology to say his heart is okay. They want to do more echo cardiograms and EKGs before they will call in pulmonary. Melanie has asked for his regular cardiologist to be paged. Just last Tuesday Witt was once again given a clean bill of health for his heart and taken off all heart medicine. At times (he did this in front of the cardiologist) Witt does breathe fast. He is trying to get more air. The cardiologist said this has nothing to do with his heart which is fine. He said Witt now needs to be seen by the lungs specialists and ENT doctors to see why he is still on oxygen (in fact the oxygen had to be turned up last week) and why sometimes he has to breathe harder to get the air he needs. It could be anything from the actual structure of his airways to his lungs. But here we sit not getting his lungs checked out yet. We trust God, we trust God's leading! I just want nothing or no one to get in the way of what God wants for Witt. If it's to get his heart checked again, that's fine...as long as its God's leading! Melanie is struggling to cope as any mom would. She desperately wants what's best for Witt and will fight for it! Austan is being our rock and yet needs God's strength and wisdom as he leads his family. I need prayer to not get buried in the circumstances and miss God. I just went down to the 3rd floor PICU waiting room (where the best coffee is!). My mind was totally taken over by frustration and I almost missed what God had for me. As I walked out of the waiting room I heard a man cuss behind me. I turned quickly and just looked at him with disgust and turned back around. Not my greatest moment! I heard God sweetly say my name. I turned back to the man, who immediately apologized for his comment and asked him if it was a long night. That's all I said and he shared his story with me. His stepson has had a heart transplant but now a couple of years later seems to be rejecting the heart. He has been married previously and his ex-wife is angry that he is there and not with his daughters. I simply asked him if he was a believer. He said yes, absolutely. I said then you have to do what God is telling you to do and unfortunately that will probably upset some human but that as a believer he answers to God. That was it, but it was such a God opportunity. I didn't tell him what was right or wrong...I didn't know...just that he should please God. Such a wonderful blessing to encourage someone that I almost missed because I was letting circumstances steal my focus. Each of us, me, Austan and Mel need God right now in very specific ways and that's what I ask you to pray for us...that God show Himself to us. I know the God who is able to meet all our needs will be faithful to answer!

PRIVATE ROOM, PLEASE!

Last night Witt had to stay in what's called a pod in PCU. There are 4 beds and really no place to sleep. It was a pretty tough night. Melanie and Austan are mainly concerned about Witt catching something from the other 3 kids. What the other kids have is contagious but not air born. Still not very comforting when Witt has had to be kept isolated even from family at times to ensure he doesn't catch anything else. We have been told he is at the top of the list to be moved to a private room on this floor. Right now we have one of our favorite nurses from his Christmas visit. Pulmonary is supposed to come by today. Witt's oxygen is set somewhere between 1/2 to 1 liter. We are a little weary but glad we have a hospital with a staff like this to come to. For me it's back to instant coffee and an Otis Spunkmeyer Muffin! Yesterday in Sunday School we talked about Christ being the Light in the middle of darkness. We tend to think that a certain situation is darkness but darkness can come from your perspective. What's amazing is seeing things from Christ's perspective can turn darkness to light without changing a thing. I am asking God that we see with Christ's eyes and that we see outside Witt's situation to a world right here that is desperate for Light. I am praying that in the midst of taking care of Witt, God will let His light shine through us!!

BREATHING

All of the test Witt were given have come back and other than the x-ray everything is good or unremarkable. The x-ray showed a slight difference from the x-ray taken this past Tuesday, so the doctors will treat Witt as if he has pneumonia. He will be admitted and go through some tests today with the pulmonary group at TCH that had been scheduled for this Thursday. The events of this evening continue to show us the power and love God has for Witt and his family. Each moment He teaches and grows us in ways we could not have imagined. Thank you for your prayers and the comments you leave. They are an encouragement and blessing to us all.

When Witt stopped breathing for a moment, we all struggled with the right responses. Thankfully, it's God's strength that carries us to another day and another visit to a hospital that feels like the welcoming arms of our Saviour as we try to walk on water. Our unwavering love for such a fighter like Witt allows God to be God in all our lives. Melanie's love for her son and the heartache she feels as nurses try to take his blood is the weakness and the strength we all feel for those we love...but don't have to experience on such a regular basis as does Melanie. You never get used to coming to the hospital, but God does great and wonderful healings here by helping us breath again.

Don't forget to breath in the love God has for you and to pass it on. Peace and hope is our prayer for you today.

Sunday, March 1, 2009

UPDATE

Witt will be admitted tonight to Texas Children's Hospital. The doctors call what happened a "blue episode". This happens to normal babies sometimes. The hard part for the doctors is to decide what caused something to happen to a baby that is not happening now. They have drawn blood and taken a urine sample. Right now Witt is getting another lung x-ray. He will be kept for observation also. The good thing is pulmonary will be called in while he is here. It's great that Witt will not have to wait till Thursday to be seen by a pulmonary specialist. Melanie and Austan definitely need your prayers....prayers for strength and peace. They have both done remarkably well. Witt could not have a better mother or father and Melanie could not have a better husband...no one could have a greater God!

URGENT PRAYER

Witt is on his way to Texas Children in an ambulance. He was sleeping woke up...had a little blood in his nose (maybe from oxygen). He started crying and then turned purple. He stopped breathing and his eyes rolled back. It probably only lasted 30 seconds to a minute and then he started taking some small breaths till back to normal. Paramedics want him checked out...as do Austan and Melanie. Mel is in the ambulance and Austan is close behind. I am headed down now! Oh....wisdom, please Father grant the doctors wisdom and Mel and Austan peace. Let them see the very face of Christ!