Friday, August 8, 2008

Friday, August 8, 2008 in the Evening

TGIF everyone. I hope everyone has a big weekend in store. Looks like it will be beautiful weather in Chatta-Vegas this weekend. It has been a whirlwind week for us, but a very blessed week. God is always good, but this week, we have truly seen how great God is!
Christie and I spent the late afternoon and early evening with Zander. As you can see in the pictures above, he is resting well. Dr. Kelley came by when we were with Zander and he said that Zander is doing well. In fact, he has started the Zman back on 15 ml of breast milk every 3 hours and according to the nurse, he tolerated his first feed well about an hour ago.
Dr. Kelley said the next few weeks will be a wait and see period. He said that the feedings will likely cause significant reflux for Zander. What Dr. Kelley is looking at is how the esophagus, specifically, the surgical site (where he connected the esophagus) handles the reflux. He also wants to see how it heals. Chances are about 60% that Zander will have to undergo the fundoplication surgery that I mentioned on Tuesday or Wednesday of this week. This surgery involves wrapping the upper portion of the stomach around the esophagus to significantly reduce the reflux.
At this point we are praying that the esophagus heals with minimal scarring at the surgical site. We also pray that the acid reflux is minimal and that Zander will not need the fundoplication surgery. I know everyone is tired of me thanking you for the prayers and comments, but I cannot thank each of you enough.
We are tired....okay exhausted, but well. I will write again tomorrow and hope that each of you have a nice evening and a great Saturday. Sweet dreams to up Zander and rest easy. We love you.

Thursday, August 7, 2008

Thursday, August 7, 2008 in the Evening

Buenos Noches all. We are settling in for the evening. Christie and I have been on the go since early this morning. Houston and Jackson are enjoying their last days of summer.
Zander is still heavily sedated and enjoying the pain meds. Dr. Kelley came and checked on the Zman today and said he was doing fine. He wants Zander to be sedated and still for a couple of days to minimize his movements due to the surgery, which will also minimize his pain. Dr. Kelley said that he does not need to be eating at this point (through the G-tube) so Zander is presently on 100% IV feeds.
Dallas, his nurse during the day shift today, indicated that he has used the bathroom (both 1 and 2), but this was likely still left over from his feedings from yesterday. He is resting comfortably and his CPAP has already been turned down where he is doing more of the breathing on his own through the trach. Amazed is my word for the day. I am amazed at what Zander can tolerate and I hope that he continues to progress well. Hopefully tomorrow, he will be awake so we can talk to him and see his big, beautiful eyes and those big cheeks.
The comments and prayers may seem insignificant to you, but rest assured they mean the world to our family and Zander. We can never repay the generosity, concern and heartfelt acts of love to our family. Thank you.
I will write again tomorrow...if not sooner. Good night and God bless each of you. May you dreams be big and your sleep be sound. Sweet dreams son. We love you.

Wednesday, August 6, 2008

Wednesday, August 6, 2008 in the Evening

Hebrews 11:1 says that "faith is the assurance of things hoped for, with the conviction of things not seen." What we have hoped and prayed for with conviction and certainty came true today at about 6:15 p.m. God is great!
Zander came through surgery like a champ. More importantly, Dr. Kelley was able to connect the esophagus to the stomach, yet another miracle in our lives. Over the teeth and through the gums, watch out stomach here it comes. We are utterly amazed how sufficient the grace of God is in our lives and the life of our young son. For the next 10 days Dr. Kelley said we are going to sit on our hands and let Zander's esophagus heal. There is a moderate amount of tension on his esophagus from stretching it together and we pray that the tension quickly dissipates. The doctors and nurses will be monitoring the connection site and any possible infection. There is also a tube going through Zander's nose and through the esophagus that will keep the esophagus open and allow antibiotics to be applied to connection site.
We are exhausted, overjoyed and simply amazed at what God has done for us and Zander. In three short weeks, Zander has endured three surgeries and countless tubes have been placed in him, yet God continues to place him in th palm of his hand and show us that He and He alone is still in the business of miracles.
I truly am at a loss for words tonight....I can cannot express the valleys and peaks that Christie and I have experienced over the past 10 hours. The prayers and comments of all have worked, continue to work and prove that prayer works. I can truly attest that you do not know how sufficient the grace of God is until it is all you have.
with love to all..........sweet dreams Houston, Jackson and Zander...We love you and are truly amazed at the strength God has given each of you.

Wednesday, August 6, 2008 at about 4:30 p.m.

Zander is still in surgery. Surgery did not get started until about 3:00 p.m. Dr. Kelley said he should be finished around 5:30 or 6:00 p.m. Apparently the hold-up in getting him into surgery (which is surgery #3) was the availability of a surgery room. Christie and I are well. Family is here. Thanks for the prayers for us, our son and the situation. We really appreciate it. I will write again soon....when I know more. Clancy

Wednesday, August 6, 2008 about 1:30 p.m.

Hello all. We are at the hospital waiting for surgery to begin. We will be going down with Zander to the surgical floor and then waiting for surgery to conclude. Sorry i did not write last night, but it has been a long two days. The boys are fine (for now) and are with us.
Surgery will likely get started about 2:00 p.m., but the above pictures are of the Zman about 10 minutes ago. He is resting well and he is well rested for the surgery according to the the NICU nurses.
The surgery will take several hours (3 to 4 probably). I will keep everyone updated through the blog this afternoon as we will have time to update while we wait.
Please pray for Zander, the doctors and hospital staff. I will talk with you soon.
Stay strong Zander...God has you in the palm of his hand.
We love you.

Monday, August 4, 2008

Monday, August 4, 2008 in the Evening

Good evening all. I hope everyone had a nice Monday, if that is possible. Christie was at inservice all day today and the boys spent most of the day with Grandma Pat (Christie's Mom). Sorry there are no pics tonight, but there appears to be a problem with the blog server. Zander is doing well today. He was sleeping when I went to see him but he lost his umbilical cord earlier in the day. I know everyone has been waiting on pins and needles to learn whether Zander has an innie or an outie and those betting on the innie are the winners. All joking aside he is still receiving the same amount of milk today that he was yesterday and he is only requiring a wee bit of pain medication and sedative. Zander's constant CPAP air has been turned off. He is breathing on his own through the trach and it appears that they may try to put a humidified trach mask on the little guy tomorrow. He is still receiving a short burst of air on each breath which helps expand his lungs, but he is breathing under his own power. Christie spoke with Dr. Kelley (the surgeon) and he has returned from vacation with the majority of his "honey do" list completed. He checked in on Zander and he is going to take him in for his 3rd surgery on Wednesday at noon. Dr. Kelley wants to see if he can get the esophagus connected. He indicated to Christie that the stomach has obviously expanded due to the increased feedings and no residuals from the feedings, the only question is if it has stretch enough. Obviously, the traction sutures have been pulling the proximal esophagus southward (how much we do not know) and the feedings have expanded the stomach and pushed the distal esophagus northward (how much we do not know). If Dr. Kelley can get the esophagus connected, Zander will have extremely uncomfortably reflux for an extended period of time. It will take 4 to 6 weeks of monitoring in the hospital along with probing into the esophagus to see how his little body tolerates the esophagus being connected. I am sure there will be other things that they look for, but Dr. Kelley has not given us all the particulars at this point. Due to the severe reflux that Zander is likely facing, there is a good chance that he will have to also under go a fungoplication (Google it) surgery as well. Essentially, this procedure involves wrapping the upper portion of the stomach around the esophagus to strengthen the valve of the esophagus as it enters into the stomach. It also significantly reduces the stomach's ability to cause reflux. If Dr. Kelley is unable to connect the esophagus at this point, he will attach both ends of the esophagus with traction sutures and begin pulling both ends at the same time. Up to this point in time only the proximal (throat) portion of the esophagus is being pulled by traction sutures. Our hope and prayers at this point are that Dr. Kelley will be able to attach the two ends of the esophagus. We also pray that Zander tolerates the procedure well and that his little body is not placed in too much pain. It is hard knowing what he is facing in light of his recent restful days and weaning from pain meds and sedatives, but we know that God has Zander (and all of us) in the palm of his hand. Thanks Karen and Joe for making time in your busy day to come see Zander. We know that Bert and Dr. Dooley and others have been by to see him, but have just missed us. We hope to be able to see them soon and we thank everyone at RBBC for everything they are doing for us and especially for the prayers. Thanks Joyce for keeping everyone in the loop, we will talk with you soon. We also thank countless others for the prayers, comments and phone calls concerning Zander, the boys as well as Christie and I. We cannot do it alone and thank God each day for all of you. We continue to need prayer, comments and encouragement. This is not an easy thing to endure and one saving grace is knowing that Zander will not remember any of this. As Christie's dad said yesterday, for all Zander knows this is the way you enter the world; however, the lawyer in me both agrees and disagrees with him. I agree that he will likely not remember what his body is being put through, but Christie and I, will never let him forget the love of others, most known and some unknown who have prayed, loved and shared their hearts for his benefit, our benefit and the glory of God. Sweet dreams son....we hope you rest well and keep moving along. We love you and will see you soon. Clancy

Sunday, August 3, 2008

Sunday, August 3, 2008 in the Evening

Is tomorrow Monday? We have been on cloud 9 this weekend after getting to hold Zander everyday since Friday. Today was Christie's turn and Zander's nurse, Dallas, allowed her to hold Zander away from the bed in the rocking chair. It took some work to get all the tubes and monitors lowered so Christie could sit with him away from the bed, but Dallas and all the NICU team go the extra mile for the Zman and us.
Christie was able to hold Zander for about an hour. He was feed in her arms (through the g-tube) and he rested quietly in his mother's arms. He did not rest as well in her arms as he did in mine (just kidding), but it was nice to see Christie smiling with our son close to her.
Zander's feedings have been increased to 40 ml every 3 hours. He is rarely taking pain medication at this point (once maybe twice every 24 hours) and he is no longer on the Adavan (sedative). We were told that Dr. Kelley will be in tomorrow. He will likely take a look at the traction suture issue. We are thinking he may want to perform surgery this week to see how things are progressing and/or reattach the sutures if, in fact they have let go.
We hope everyone is well rested and gearing up for another week of work. For those of you that are retired, I hope you keep the ball in the short grass and avoid the sand traps.
I will write again tomorrow evening, if not sooner. Thanks to everyone for the prayers and comments. Christie and I are uplifted with each comment and we greatly feel the power of prayer working for us and Zander. God bless each of you this week.
Good night boys.....We love each of you.