Thursday, December 31, 2009
Wednesday, December 30, 2009
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!
Tuesday, December 29, 2009
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!
Monday, December 28, 2009
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!
Sunday, December 27, 2009
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!!!
Saturday, December 26, 2009
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!
Friday, December 25, 2009
Thursday, December 24, 2009
Wednesday, December 23, 2009
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!!!!
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!!!!
Tuesday, December 22, 2009
Monday, December 21, 2009
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!
Sunday, December 20, 2009
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, December 19, 2009
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!!!
Friday, December 18, 2009
Thursday, December 17, 2009
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.
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!
Wednesday, December 16, 2009
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...
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!!!
Tuesday, December 15, 2009
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!
Sunday, December 13, 2009
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!
Saturday, December 12, 2009
We'll keep you posted...thank you for praying, sweet friends!
Friday, December 11, 2009
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!
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!
Wednesday, December 9, 2009
Sunday, December 6, 2009
Thursday, December 3, 2009
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!