Friday, September 5, 2008

Friday, September 5, 2008 in the Evening

Hello everyone. TGIF. Although it was a short week, it has been a long week. We hope everyone is doing well and is gearing up for a nice weekend. Jackson has a soccer game in the morning and it appears that the weather here is going to be nice. Congrats to Steve and Melissa, some friends of ours, on the birth of their son, we cannot wait to meet him. We hope all is well in Birmingham.
Zander had a good day. I met with the pediatric orthopedic surgeon about his vertebra. Zander has a hemi...not not that type of hemi, but a hemi-vertebra. Essentially his little body formed in the womb a partial vertebra was formed at the T-3/4 (thoracic 3 or thoracic 4 vertebra) which is basically right between his shoulder blades. Due to the partial formation of the vertebra the ribs that should go with the T2 and T3 vertebra on the left side are instead part of this partial vertebra. As a result, as Zander grows, if not surgically corrected, his spine would tilt to the left. Thus, surgery will be needed at some point to fuse the vertebra in this region together. Fortunately, the vertebra in this area are relatively rigid and will not affect his mobility to a significant degree. He also has an extra first rib at the top of his spine which is likely the result of the hemi-vertebra malformation. Only time will tell what, if anything needs to be done to this rib; however, surgery will likely be needed to remove the rib.
At this point, the orthopedic doctor, Dr. Moses is ordering an MRI to more closely examine Zander's spine. We will keep everyone posted on this issue.
Zander's jaundice is being controlled by medication and his GI doctor said he thinks the jaundice will resolve itself in the coming days.
As far as his left nostril is concerned, Dr. St. Charles wants us to schedule a visit with him 3 to 4 weeks after bringing him home. He said that by that time the structures in his nostril will have grown apart more and he will be in a better position to see what needs to be done to correct the problem.
As the pictures show, Zander likes his mobile and I helped Dallas, his nurse, bathe him earlier today. He is looking better and he has not had any reflux into his mouth or nose that had any food in it. For now, it appears that the reflux is non-existent.
We remain positive about Zander's progress, but sometimes it seems that with each good day we only learn of another problem that Zander has to overcome with surgery. God is still in control and we know that he will take care of it all, but I am truly amazed at what our son has endured. Just think, he has never seen the light of day (literally) and yet he has endured so much. It is frustrating, worrisome and miraculous all wrapped together.
We are truly thankful for the care he is receiving. Everyone has been great. We just want him home and the length of his journey in ICU is starting to take its toll on me for sure, but I know Christie feels the same way. With each new day brings new grace and this has become the promise that we live by.
Thanks to everyone for prayers, comments, phone calls, food and reassurance about Zander. We can never repay the support, but we will sure try to if we can.
I will write again tomorrow if not sooner. Zander, be sure to give your Mommy some good love as she is on her way to see you. Rest easy son...stay strong...keep moving along.....
Sweet dreams Houston and Jackson, we love you.
P.S. The picture of the cow was taken outside Jackson's school today and has to do with a fundraiser.

Thursday, September 4, 2008

Thursday, September 4, 2008 in the Evening

TGIF early to everyone. Although it has been a short week, it has been a long week here in Chattanooga with the Zman. Houston and Jackson are getting ready for bed, but both of them had a good day at school today.
Zander had a long, but good day. Today he underwent a CT Scan (head and nasal), an echocardiagram, a renal ultrasound and was also seen by the GI specialist for his jaundice issues (which are related to the liver).
I will start at the top of his little body and work down. Here is what we know at this point after the tests today:
Head/Brain- the CT scan revealed that Zander's ventricularmegaly (enlarged ventricles) is still on the high end of normal, but it appears to have stabilized. His brain mass and size is normal. I hope normal is more than what I have, but this will continue to be followed on an outpatient basis. No surgery required. They are going to run an ultrasound on his head so they can compare it to the pre-delivery ultrasounds.
Left nostril and nasal cavity- this is going to require surgery. He essentially has a malformed nasal/sinus cavity. A consult from Dr. St. Charles is forthcoming and we will know more soon. We do not know if surgery will be now or down the road.
Heart- initially, there was a concern that Zander had small holes called VSDs in his heart. These appear to have resolved and his cardiologist, Dr. Hays says it appears that he has a blood vessel on his heart that he will continue to monitor to make sure it closes up (as it should). Zander also has a valve issue in one of his ventricles, but Dr. Hays said that both of these problems can be treated non-surgically if they do not resolve. He will see Zander again in a few weeks.
Vertebra/Spine- Zander has a malformed vertebra in the thoracic (upper/middle) part of his back. Dr. Moses and orthopedic has been called in for a consult and we do not know anything at this point. It may be that he has the same type of defect that I have in one of my vertebra, however, I did not know it until last year. Hopefully that is the case and surgery will not be required.
Kidneys- Zander does have mildly dilated (enlarged) kidneys or openings from the tubes that connect the kidenys to the bladder. At this point, they are asking for a consult from a nephrologist to see what needs to be done.
Jaundice-Dr. DeVoid came for a consult today and is placing him on another medication for the jaundice. Activol (sp?) is being given to him 3 times per day and Dr. Devoid will continue to follow him.
As far as the esophagus and the stomach are concerned, everything appears to be going well following Tuesday's surgery. Zander's feeding schedule was changed by Dr. Kelley today. During the day (8, 11, 2, 5 & 8) Zander will be getting 30 ml of feedings through his G-tube. At night, he will be getting 15 ml continuously every hour to help keep the stomach extended and increase its size. We have not talked with Dr. Kelley about where we go from him, but I am sure we will do so soon. According to the nurses, Zanders secretions from his mouth have only been saliva and do not appear to have any hint of reflux. We will know more once we speak with Dr. Kelley.
Zander is also no reclining in his new vibrating seat. As you can see form the above picture, all he needs is a recliner and a big screen to be able to watch football.
We are all well, tired and ready for him to come home. We thank each of you for your prayers, comments and encouraging words. I will write again tomorrow....hopefully. Keep Ethan and his family in your prayers as well as my friend I mentioned last night.
Today was a good day for the Zman. We hope all is well with everyone. God has been good today and tomorrow will bring new grace.
Rest easy boys. We love each of you dearly. Keep moving along Zander.

Wednesday, September 3, 2008

Wednesday, September 3, 2008

Good evening all. It has been a pretty good day here in Chatta-Vegas. The boys are bathing before going to bed and Zander had a good day.
Late last night, Zander was taking off the ventilator and returned to the moist air mask covering his trach. Earlier this morning, Dr. Kelley also allowed Zander to resume eating through his G-tube. He is getting 15 ml every 3 hours and each feeding is taking about 30 minutes. The hope is that each feeding will slowly expand the stomach and that the length of each feeding will keep the stomach expanded until his next feeding. This is good news. Thus far, there has been little reflux, but only time will tell.
Christie, Jackson and I visited Zander this afternoon. He is now in a crib (Ethan's old bed) and is resting rather comfortably. The above pictures show Zander in his new crib (no pun intended).
It has been a good day for Zander, but a long day for all of us. Tomorrow, Zander will undergo a CT-Scan to see how his ventricularmegaly is doing (spaces between the ventricles in his brain) and also to see how his nasal passage is doing. As you will recall, the ventricularmegaly was and continues to be a significant issue with Zander and now that everything is connected, they feel it necessary to see how he is doing. The left nostril is also narrow and they are trying to kill two birds with one test as opposed to running two separate tests. In the next few days he will also have a renal ultrasound to check on his dilated kidney (left).
I will keep everyone posted on Zman's progress, but today, as mentioned above, was a good day. I will write again tomorrow...if not sooner. Thanks to all for the prayers, comments and encouraging words. Please pray for a good friend of mine as it appears that cancer is present in his lymph nodes. Old man, you have alot of fight left and God is still in the business of miracles and healing. I will see you soon.
Rest easy boys and keep moving along. Good night Ethan, Eli, Amber and Chad. We hope all is well in Calhoun, GA. You are in our prayers.
Keep moving along Zman. We love all of you.

Tuesday, September 2, 2008

Tuesday, September 2, 2008 at about 6:30 p.m.

Hello everyone! What another draining day. Zander underwent surgery earlier today and by the grace of God everything went well. Dr. Kelley said he was able to wrap the esophagus with the upper portion of the stomach. In fact, Dr. Kelley said he used more of the stomach than he thought he would, but he felt like the surgery was a success and he thinks this procedure will eradicate Zander's reflux altogether.
Zander endured the procedure well. He was a bit groggy after the surgery and he is heavily medicated with pain meds at this point, but he is doing well. As you can see from the pictures above, Zander has endured a lot, but he remains, as well all do in God's hands. The surgery today gave him yet another scar to brag about in the future. He essentially has about a 3 inch incision from his belly-button to his sternum.
At this point, Zander will receive nothing but fluids through his central line (CVL) for the next few days. Once regular feeding through the G-tube resumes, he will likely be on continuous feedings in order to stretch the lower part of the stomach.
Chrisite, Houston, Jackson and I just returned from seeing Zander. He is resting at this point and he, as mentioned above, is heavily medicated. On an even better note, Ethan checked out today and we we able to be there as Chad and Amber were leaving. Thanks to all for the prayers for Ethan and his family and please, please, please keep them in your prayers as they are waiting to speak with a specialist in Cincinnati.
Thanks are also in order for each of you that pray, comment and wish our family well. I CANNOT ADEQUATELY EXPRESS IN WORDS THE GAMUT OF EMOTIONS WE GO THROUGH ON A DAILY BASIS, BUT I CAN TELL YOU THAT WE CANNOT DO IT ALONE AND WE ARE THANKFUL FOR EACH AND EVERY ONE OF YOU. We try to count it all joy each day, but some days are easier than others. Today is one of those days.
I will write again tomorrow...unless I receive more news this evening. May God bless and keep each of you this evening and through the night. Tomorrow will bring new grace, but today's was a blessing in and of itself.
Keep moving along easy boys. We love you.

Tuesday, September 2, 2008 at 11:45 a.m.

Good morning all. We are at the hospital. They just took Zander to surgery and he was resting peacefully. Thanks to everyone for the prayers. I will keep everyone posted and as soon as we know more, I will post again. Aunt Heidi, I see you took my bait hook, line and sinker. I guess someone from Ohio will be sending some OSU clothes in the near future.

Monday, September 1, 2008

Monday, September 1, 2008 (Labor Day) in the Evening

Hello Everyone. I am now rested and feel rejuvenated after a wonderful weekend. Grandpa Bill came in this weekend and he has since made it back to Florida. Houston and Jackson had a nice weekend with their Dad. The boys and I just returned from doing a little fishing on a nearby pond. We had a great time with some friends of ours Alex, Andy and Todd.
We also went to a cookout this afternoon at Tom and Machelle Hall's. As always, the food was great as was the company. Thanks guys for inviting us.
Zander is doing well. He has been eating and resting all weekend. His weight is down to about 9 pounds 2 ounces, but it appears that all systems are a go for tomorrow's surgery. Dr. Kelley said he would be coming to get him around 12:00 p.m. We are hoping and praying that this surgery significantly reduces the reflux. We are also hopeful that this will be the last surgery that he has to have at least for the foreseeable future.
I am posting several pictures. Please note that the SEC is the dominant conference in the country and none of my family has sent any OSU stuff, so sorry guys there are no pictures of the Zman in the Red and Silver. In any event, Zander told me that he thought that the Crimson Tide might be his favorite team as he like Coach Saban.
We have had a nice relaxing weekend. We are glad that Grandpa Bill was able to come in and see Zander. Tomorrow is a big day, and I do not know about Christie, but I am already nervous about the surgery. However, I know God is in control.
Ethan is going home tomorrow; however, we will keep everyone posted about his progress and recovery. Please keep him and his family in your prayers. Also please pray for the Faires family and the Strength family. Both of these families are friends of ours and they have lost a loved one over the weekend.
I will write again tomorrow from the hospital. Until then, go Vols, sleep tight and may God bless each of you.
Sleep well boys. Rest easy Zman.....move along. We love each of you.