Friday, June 29, 2007

Did not expect to post so soon, but got a call today. Wes surgery is scheduled for August 3rd. Neurosurgeon is awaiting response from ENT before this is the confirmed date. We should know for sure next week and we can begin to make plans. Another month, definitely not as soon as we had hoped to put this behind Wes and our family.
This does give us a month of summer break to enjoy and take time with all three of the boys.
Thought I would post and update on Wes surgery plans. His sleep study did show obstruction, but Chicago ENT feels that some of this obstruction will be alleviated with this surgery. Plastic surgeon will try to do some minor work to open his nostril during his encephalocele surgery. Both of these issues are contributing to his obstruction. He will also have a bronchoscopy before surgery.
Still waiting for a date. Feeling major frustration as each day passes without any idea of a date.
Wes is doing great! He has learned to climb up on the couch and chairs, but has not got a handle on the getting down part. He is so cute sitting up on the couch with this little smile letting me know he is a big boy. We are working on a few signs, more, drink, all done, and open. He is a bit stubborn and only likes to use the signs when he wants, but is so cute when he does. He has also learned to say uh-oh, which he uses constantly. Loves to say uh-oh and then drop(throw) something down to be picked up.
I would say that an update with a surgery date will follow soon, but for weeks now I have been saying tomorrow only for tomorrow to come and pass with many phone calls. Unfortunately the phone calls are asking for a date not giving a date. I will post a date as soon as I know one...

Thursday, June 07, 2007

Leaving Chicago, babe!!
We have returned from Chicago! Wes' sleep study was not a pleasant experience. He did so well, even smiling, getting all hooked up with the leads on his head, chest, back, legs, and toe, but when he put the nose cannula and the ace bandages around his head and chin he started to really get nervous and anxious. (It did not help that the ENT did a scope down his nose earlier that same day.)
He did fall asleep fairly quickly. I even crawled out of the bed and thought I was going to get some rest. About 15 mins into the study, he woke up screaming and was not interested in going back to sleep or calming down. He did eventually go back to sleep, but the rest of the night was full of screaming and inconsolable wake-ups. I ended up staying in the bed with him and when he did sleep he was resting on my chest.

Finally somewhere between 3:30am and 4:00am he woke up and was not going back to sleep. His little body was literally shaking. I signed to end the study a little early.
Not sure if they were able to get any info from that study. I will truly be amazed!!! This was definitely not a typical night for him.
We also saw the two of the docs who will be in his encephalocele surgery with nsg, Dr. Bowman. The ENT is Dr. Schroder. He is very young, but seemed pretty knowledgable about ca children and encephalocele. The ps is Dr. Vicari. I absolutely loved him. He was wonderful, sitting down and discussing everything so thoroughly with us. He saw a picture of Wes at birth and commented that his encephalocele was apparent then. Although I did discuss the fact that we do not intend on continue Wes' cleft repairs in Chicago, he was willing to give his opinion for future repairs and how he would proceed, which was very informative. He feels there is a possibility that he may be able to do something with Wes collapsed nostril during his Encephalocele repair. Both doctors agree that his collapsed nostril the major contributing factor to his airway obstruction in addition to his encephalocele. Ultimately there is alot involved in Wes' case, which seemed to leave both docs in favor of a temporary trach, but ENT will make a final recommendation after reviewing his sleep study results. The results are suppose to be rushed and complete by the end of this week. It may be the first part of next week before we hear anything.
I am very anxious to get these results and the ENT recommendation. A trach has been a very difficult recommendation to completely accept, b/c his breathing has improved so much. The ps even mentioned that we may question the possibility of proceeding without the trach, but ended in saying he felt the safest route would be the trach.
Wow, when will my little guy get a break. As if he does not have enough issues that will affect his speech. It breaks my heart to think of my very sweet, active baby going through yet another set back, all in our effort to go forward. How can he continue to come out of all this with his precious little demeanor? We will continue to surrond him in love as he continues to amaze me daily with his beautiful smile that he shares with everyone.
No worries for him right now, except for finding the Nilla wafer that has fell on his shirt!!