Thursday, August 21, 2008

Thursday, August 21, 2008 in the Evening

Hello all! I hope everyone had a good Thursday. The boys and Christie had a good day in school and are are their way home as I type. Zander's Thursday was good, but we received news of a setback. He had the barium test earlier today and it confirmed that food is in fact going into the esophagus, but it is also going into his lungs.
According to Dr. Kennedy (neonatologist), the food is taking the path of least resistance and the esophagus is not squeezing the food down properly. Parts of his esophagus squeeze and parts do not. Essentially, his esophagus is not pushing the food down as ours does. Dr. Kennedy said that in all likelihood this will correct itself with time, but for now the bottle feeding has been stopped due to the risk of Zander aspirating.
Dr. Kennedy also had a long conversation with Dr. Kelley (the surgeon) after the test today. It appears that Zander will undergo the fundoplication (Google it) surgery in about 2 weeks. This is the surgery that I talked about earlier where they will wrap the upper part of his stomach around the esophagus to reduce the extreme reflux.
At this point in time, they are feeding Zman through the Gtube and letting him rest. They are increasing his caloric intake with the liquids and keeping his 45 ml feedings the same with the hope of making him stronger and bigger before surgery. Essentially they are fattening him up before surgery.
Although this surgery was a distinct possibility following his prior surgery, it is hard to say that this is exactly good news. We hate that he will have to have all the tubes put back in (the chest tube and likely the tube in the nose), but we realize that this is the best course of action.
Zander remains happy and carefree. He is starting to focus in with his eyes so it has been great to spend time with him. It will be hard to see him revert to a semi-conscious state after seeing him bright eyed and bushy tailed, but God is in control.
The nurses, doctors and the entire medical staff have been great. Even Jim, the parking lot attendant asks me everyday how "the baby" is doing. We know that God has big plans for the Zman and pray that he will continue to watch over us all.
I will write again tomorrow night or Saturday morning. Until then, I wish everyone a happy and safe Friday. The smell of high school football is in the air. Thanks as always for the comments, prayers and encouraging words.
Rest easy Houston, Jackson and Zman....keep moving along. Mommy and I love all of you.

Wednesday, August 20, 2008

Wednesday, August 20, 2008 in the Evening

Good Evening all. We have been running around the soccer field tonight as Jackson has started soccer practice. Houston has been teaching him a few things about soccer and big brother is definitely a big help. I am not that familiar with sports that do not let you touch the ball with your hands.
As you can see above, we went to see Zander before practice. He vomited quite a large amount of his food while we were there and it was not a pleasant site to see. His whole bed had to be cleaned and Zander was not exactly the model patient during the cleaning. He also had a hard time breathing for a brief period of time during this.
At this point in time, Zander is doing well. The speech pathologist visited while we were there. They are going to run a test tomorrow to see how Zander swallows and once he swallows were the food goes. This test will be able to tell how he orally processes the food and how the esophagus pushes the food to the stomach. They will give him barium of different consistencies and then take pictures as the barium is swallowed, and then travels through the esophagus.
Hopefully this will be helpful to the process. We pray that he does well with the test so that the doctors can plan the proper course of action.
I will write again tomorrow night. Thanks, as always for the comments. Each day brings new grace and we received God's unmerited favor again today. Ethan is doing better, but he still needs prayer. We pray for his well being and his family's guidance. Until tomorrow,
Sweet dreams boys. Sleep well and eat well Zander.

Tuesday, August 19, 2008

August 19, 2008 in the Evening

Hello all. I hope every had a good Tuesday. Well, I never thought I would be proud to say that one of my boys is "on the bottle", but the great news is that Zander is partially feeding from the bottle! He has fed twice from the bottle at this point (not counting tonight's feedings) and he is taking about 15 ml or 1/3 of each feeding from the bottle. YEAH! The nurses say that it will take time for his mouth and jaws to get use to sucking, but the hospital staff is well pleased overall with his efforts thus far.
Zander is still on 45 ml every three hours. Whatever he cannot get from the bottle, they are placing in through the G-tube. The thickness of the milk is about that of a smoothie (they are thickening it) so I am sure it takes an extra effort on Zander's part to get the 15 ml.
The chest tube has been removed so he only has 2 tubes at this point, the G-tube and the central line for liquids.
He is going to the bathroom well and his weight is about the same (9 lbs 4 ounces). He is breathing well and his oxygen saturation fluctuates when his trach becomes clogged, but for the most part his levels are perfect when he is sleeping. The trach becomes clogged after feeding due to the reflux.
No word yet from Dr. Kelley on the plan of action. We assume that he will talk with us this week. At this point in time, I am sure he is wanting Zander to eat as much as possible orally. We should know more later in the week.
Everyone is tired, but well here. School is in full swing. Jackson and Houston are having a great time. Christie (and all teachers in general) are over worked and under paid, but she and I were elated to hear the news about the bottle. We just arrived home from the hospital and the pictures above show the Zman in action. Jackson has scraped his leg (minor) and it appears that I might have to amputate if he does not get any relief.
Our prayers are still with Ethan. We also pray for a friend that is dealing with an ailing grandmother in the hospital at East Ridge Hospital here in Chattanooga. We pray for her comfort and the comfort of her family during this difficult time.
Thanks all around for the prayers and continued prayers and comments.
I will write again tomorrow. Jackson has soccer practice so it may be later in the evening. Sweet dreams boys. Drink well Zander....we love all three of you dearly. Life is good and God is great!

Monday, August 18, 2008

Monday, August 18, 2008 in the Evening

As my former high school baseball coach always said, "somedays you win, somedays you lose and somedays it rains." Well today, Zander won! The connection site of the esophagus has no leaks whatsoever. I never thought that the words, no leakage at all would make me cry (not at least until I am in my elder years), but those were the best two words I heard all day. God, as always showed up today and the prayers and concerns of all were heard.
As you can see above, he no longer has the tube through his nostril and it appears that Dr. Kelley will be removing the chest tube at some point this evening. The only two tubes that he will have left, assuming all goes well, will be the G-tube (for feeding) and the central line (for continued TPN/IV liquids).
Tonight, Dr. Kelley and the neonatologist will also discuss Zander's feeding. Hopefully he will be able to begin oral feedings on a limited basis in the coming days. We will know more tomorrow.
At this point, Zander still has excessive reflux, so the plan of attack and any timelines are still up in the air. He rested well today and he still eats well, but, we will wait to see what Dr. Kelley suggests tonight.
Thank you, Thank you, Thank you. Your prayers and posts have hit a home run for the Zman. Bert, got your card again today. Give me a call at the office or on my cell, and I will be more than glad to meet you at the hospital for a visit with Zander. Your prayers have been to say the least, beautiful.
Christie and I want to express our sincerest gratitude and thanks to everyone. Zman still has a way to go, but whatever everyone is doing, please keep doing it. Praise God for our son and his fighting spirit. We love you all.
Sweet dreams boys...Rest easy Zman. Two tubes to go!