Friday, February 29, 2008

Well did you really expect Wes to be simple, plain, or typical?
Wes had his MRI and CT scan yesterday. Due to his breathing issues, he has to have general anesthesia rather than sedation. We were told he would be out in about 1 to 1 1/2 hours. After 2 1/2 hours of hearing a woman hack at the end of the waiting room, I began to get a bit concerned and took a walk down the hall just in time to see Wes going into the CT room. A few minutes later, we watched Wes’ nurse run down the hall with oxygen and then some type of breathing apparatus.
Later when we were called back, Wes seemed to be coming out of anesthesia fine. He did spit up during extubation and required suction and oxygen, but by then he was breathing fine on his own and waking up. He was released about 30 minutes later. Then about a 1 hour later, he had a 105 temp under his arm. Tylenol and back to the ER…a chest X-ray and he was admitted with pneumonia.
Today he does seem to be feeling somewhat better. Last night he just laid there, putting up no fight with the nurses and doctors. Today still lying around but fever down and did give us a little smile. He is just waking up for a TEMP check, after a 4 hour nap.
Positive news came from Dr Bowman, Wes’ bone graft is fitting in nicely to his skull base. In addition to monitoring his surgical repair/bone graft, he will need MRIs to monitor a Rathke’s cleft cyst near his pituitary gland. This also requires regular monitoring by an endocrinologist and ophthalmologist.
We also discussed his palate surgery. The surgeries that are most concerning are the future surgeries dealing with his midface. I honestly feel very torn with the decision of his palate surgery, considering his future surgeries dealing with his midface will need to be here were his anatomy his well known.
At this point regardless, we need to talk with doctors on how soon we can proceed with his palate after his recovery. He is a very popular little guy here! My heart is warmed by everyone’s support and involvement in Wes’ care and most importantly can find comfort that he is in wonderful hands here in the cold windy city.

Wednesday, February 27, 2008

We have arrived in Chicago! Lots of snow on the ground. I would love to post a picture of Wes in the snow, but he is just not into the snow. Today he is running a fever and not feeling well, hoping all goes well and he is able to have his scans tomorrow.
He has been able to watch Elmo on the the computer and loves it! This Florida family is staying warm inside!

Monday, February 18, 2008

Next week we head back to Chicago for follow up scans. These scans will be the final step for Dr. Bowman to clear Wes for his palate surgery. Hard to believe this surgery was scheduled in Oct 06, he was 8 months old. Finally the month he turns 2 years old, he can have his palate closed.
Past three weeks, Wes has been struggling to breathe again. Nights are again filled with alarms from pulse ox and apnea monitor. His breathing improved with the g-tube feeds. He was able to take some oral feeds in addition to g-tube feeds without any problems. Not the case now. Dr. Curry is concerned the oral feeds are causing the problems. Still having some issues, but one week without any oral feeds, his breathing has improved. For now Wes is being totally g-tube feed. Breaks my heart when he asks for fruit snacks, pop tarts, cheetos, basically anything.
Hate the thought of my baby enduring another surgery and recovery, but I know this step will give him so much with eating and speech. Wes’ g-tube will make his recovery less complicate. The extreme pain from this surgery often cause feeding difficulties. Wes will have his g-tube. Memories of fighting syringes of milk during the last weeks of his latham and recovery of his lip surgery, will not be the case with his g-tube. The challenge with this surgery will be what will come with his breathing difficulties after having this hole closed.
After his palate heals, he his going to have a huge Cheeto party with an Elmo cake to celebrate his second birthday. Forget the little ball pit, Wes needs a huge Cheeto pit!

video

This video is for a specific email and not intended for everyone.