Thursday, September 11, 2008

Thursday, September 11, 2008 in the Evening

Now you see me, now you don't...but guess what you will be seeing more of me soon when I go home. Today my Mommy and Daddy tentatively found out that they will be staying with me at the hospital next Friday and possibly Saturday night. If they behave, they will likely let me go home next weekend. Thanks goodness! Everyone has been telling me about this home thing, but I am not quite sure it exists. Likewise, me and the boys here in Pod 4 have overheard that there are these pools of water in homes that they put us in to get us clean, but we are not quite sure they exist either. If true, hopefully I will continue to get my sponge baths by pretty women.
In all seriousness, I am looking at coming home next week. I have an MRI on Friday morning (tomorrow) and they are also running a cranial ultrasound on me as well to see how my brain is doing. The big factor for me coming home is still my ability to eat my food. At this point Dr. Kelley has not increased my food, but hopefully he will do so tomorrow or Saturday. I asked him if he had a take out menu, but he did not think that I was quite ready for Krystals or Taco Bell.
My Grandma Judi came to see me today from Knoxville and she and I hung out for a while. She held me and talked to me, I think, but I am not for sure because I was asleep most of the time. My team of nurses, doctors and case workers are in the process of getting my supplies, machines and other things ordered.
Mommy and Daddy came to see me this afternoon and mommy changed my trach and held me while Daddy talked to me.
I know a lot of people have been looking in on me and I am thankful that they do. I am also thankful that they have given my parents encouragements while I have been here. Feel free to continue to write to me or leave a comment as Daddy told me that he is saving all of them for me so I can read them when I get home to pass the time.
It is late for me and I should be getting to bed. Ms. Amy, my nurse is feeding me soon, so I am going to go pitch a fit to see if she will feed me sooner. I plan to rest for most of the night and I keep moving along. Please say a prayer for my parents as they are excited about getting me home. I can see why they feel that I have been here long enough, but I have been in good hands and God keeps watching over me.
I will write again soon, but for now, I will keep moving along. Tell my big brothers I love them and I cannot wait to get home to see them. I heard they had a good day at school.
Love to everyone.
Dictated by Zander and transcribed by Clancy

Wednesday, September 10, 2008

Wednesday, September 10, 2008 in the Evening

Hello all. I hope everyone survived hump day. I am brain dead. Jackson is reading to Christie and Houston is hanging out with me playing "The Christmas Canon" performed by the Trans-Siberian Orchestra. It is such a soothing song. (Go to YouTube) We have been listening to it over and over for about 20 minutes.
Zander is doing well today. Grandpa Charlie aka Paw Paw visited with the Zman for about an hour today. I am sure he and Zander talked about cars, engineering and cinnamon rolls. I am also sure that Zander enjoyed his visit with Paw Paw.
Zander is still eating 45 ml every three hours during the day and receiving 25 ml every hour on a continuous basis in for 8:00 p.m. to 8:00 a.m. For now all is quiet and nurse Amy says that he is resting well. Tests are scheduled for Friday.
Nothing much else really to report at this point. Looks like a lady in South Carolina has really put her foot in her mouth concerning a comment she made about Vice-President Candidate Palin, so I am off to see what spin the political pundits say about this issue.
Thanks to everyone for their love, support and comments. They really do uplift us during the day. I will write again tomorrow...if not sooner.
Boys rest easy and sweet dreams. Zander, 1 Peter 5 verse 10 reminded me today that you will be restored after you have suffered a little while and Christ Jesus will restore, support and strengthen you and place you on a firm foundation. With this in mind, keep moving along as you remain in God's hands.
We love you Houston, Jackson and Zander

Tuesday, September 9, 2008

Tuesday, September 9, 2008, in the Evening

Good evening all. Today has been a good, but long day. Zander's procedure was scheduled to take place at 12:55, but surgery was backed up and he did not go to surgery until about 3:30 p.m.
The procedure to dilate his esophagus went well. Dr. Kelley told us that it was much more open than he anticipated. He did open it more. Zander will have to have this done every 2 weeks or so for the next few months. The reason he has to have it done so frequently is to ensure that the site where his esophagus is connected together does not become firm. Stated another way if Dr. Kelley does not do this the surgical connection site will become rigid and the scar will harden.
Dr. Kelley told us that he also put die into the stomach to check the reflux issue. Praise God, there is no more reflux. Dr. Kelley said he saw no sign of reflux whatsoever and the fundoplication was well connected and healing properly.
We also asked Dr. Kelley his thoughts on what needed to take place from his perspective before Zander could go home. Dr. Kelley said that Zander has endured everything he has been through better than any baby with these problems that he has seen. THERE IS NO DOUBT IN MY MIND THAT EVERYONE'S PRAYERS AND THE GRACE OF GOD HAS MADE THIS POSSIBLE. Dr. Kelley said that Zander's stomach needed to be able to handle 75 ml of food every 3 hours in order to be able to go home. At present he is on 45 ml every 3 hours during the day. He is already getting 75 ml every 3 hours in the evening, but he is receiving this on a continuous basis (25 ml every hour) verses all in one sitting. As a result, Dr. Kelley said that within "a week or two" assuming he continued to do well, Zander's stomach should be able to handle the 75 ml at a time. YEAH!!!!!!!
There are other issues to take into account before he can go home, but the largest is his ability to handle enough food in his stomach. He is going to have his MRI on his spine on Friday. They will have to sedate him otherwise, he will not stay still. Christie and I are training on the aspects of his care and we should be talking to Pearl, the social worker about ordering medical equipment, coordinating in home nursing services, and scheduling the numerous follow-up appointments for Zander.
Today has been a good day for all of us, but especially for Christie and I. We both wanted to talk with Dr. Kelley about getting him home and he is pretty much on track with what everyone else has indicated to us.
Houston and Jackson are sound asleep and Christie and I are not far behind them. God is always good, but today, I felt it more...
Sweet dreams boys. Sleep well Zman and keep eating. Keep moving along. We love all three of you dearly.

Tuesday, September 9, 2008 in the Morning

Good morning all. Just a quick update from last night's post. Zander is scheduled to be taken to surgery for the esophagus dilation today at about 12:55 p.m. Chances are he will be taken a little earlier than this. We are pretty sure that he will be put under anesthesia. The procedure does not take long but we pray that everything goes well. I will keep everyone posted. Thanks, as always for the prayers covering our family. Clancy

Monday, September 8, 2008

Monday, September 8, 2008 in the Evening

Good evening all. Short and sweet tonight as it has been a long day. Zander did not have the MRI today. They moved it to Friday as he will have to be sedated to keep him still. He is having a procedure performed tomorrow by Dr. Kelley to open (dilate) the esophagus. The nurses say it will be a quick procedure, but we are praying it goes well. Zander will have to have this done periodically to make sure the esophagus expands and grows with him.
Christie and I went to a CPR/Infant Care class tonight. It is a prerequisite and we also have to have additional training on CPR involving the trach. Christie and I saw the Zman earlier and he is doing well. He is now 10 lbs 1 ounce, and given the fact that his feeds have been increased to 45 ml during the day and 2o ml every hour throughout the night, it appears he will only be getting bigger.
Thanks to everyone for the prayers, comments and encouraging words. They truly mean a lot to us.
I will write again tomorrow night and we are continuing to pray that the procedure goes well tomorrow. I hope all is well with Ethan and his family.
Rest easy boys....sleep well Zman. Keep moving along.
We love you boys!

Sunday, September 7, 2008

Sunday Night September 7, 2008

Hello everyone. We hope everyone is rested up and ready for a new week. It has been a hectic, but restful weekend. Jackson's team won their soccer game and Houston and I took Jackson to a birthday party today. This allowed Jackson to burn off the excess energy that he had earlier today.
Zander is doing well. Christie and I have been training on his trach care and other aspects of his care. IT APPEARS THAT THERE IS A GOOD CHANCE THAT HE WILL BE COMING HOME IN THE NEXT 2 OR 3 WEEKS ASSUMING HIS CONTINUES TO MOVE FORWARD AS HE HAS BEEN. According to the medical staff, he will likely need private duty nursing around the clock for a period of time, but we should know more this week. We will likely be talking with Pearl, the case worker at Erlanger about ordering his medical equipment and other aspects of scheduling him to come home.
Zander's feeds have been increased. He is now receiving 20 ml every hour on a continuous basis from 8 p.m. until 8:00 a.m. He will continue to receive 30 mls at 8 11, 2 and 5 during the day.
We were advised today that Zander did not pass his 2nd hearing test. I do not know the ramifications of this, but we are praying that his hearing is fine. Hopefully his hearing is in some way related or delayed by his nostril/sinus problems. We are also praying that his MRI test (scheduled for Monday) will be of benefit in planning a course of action on his vertebra issue. Zander will also have an ultrasound on his head to compare the prior ventricularmegaly studies (before birth) to now.
As the pictures above show, Zander is alert and curious about his surroundings. According to his nurse Dallas, Zander slept all through the night and did not wake up until 9 this morning.
Thanks to everyone for the prayers for our family. They are still needed and if we can pray for you, please let us know. We hope Ethan, Eli, Chad and Amber are doing well. Since Georgia won yesterday, I am sure all is well in Calhoun, GA. We hope everyone gets off on the right foot tomorrow.
Sweet dreams boys.....we love well.
Zander, I know you hear us, but if you don't, know that you are loved by many, especially Mommy and Daddy. Keep moving along.