Saturday, November 7, 2009

Paige's appointments until Surgery!!!!

These are the last of Paige's NAM appointments until Surgery! We only have 7 more NAM adjustments! Can't wait for this to be over and done with the NAM!

November 13: NAM adjustment and Eye Appointment

November 18th: NAM adjustment

November 25th: NAM adjustment

December 2nd: NAM adjustment, ENT follow up with hearing test

December 9th: NAM adjustment

December 17: NAM adjustment and Pre-Op appointment for lip/nose/gum surgery

December 30: LAST NAM adjustment

January 8th: SURGERY!!!!!

Friday, November 6, 2009

ENT Surgery Update

This has been yet another long week. I'll give you the short version

Wednesday, the entire family headed to Pittsburgh for a NAM appointment and to stay the night in a hotel for Paige's ENT surgery on Thursday. The NAM appt went as planned and I even was able to ask Dr. Vechionne if she thought Paige would be ready for surgery in January and she said "more than likely." That's about the most she can say "legally." I was pleased with that.

We then headed to the hotel and went and got dinner. Then Paige got to meet her new friend Liliana. Lily is one month older than Paige and also goes to the same cleft team. They even have the same plastic surgeon. We hung out with Lily's mom, Erica and had some really good conversations about the NAM and other fun stuff. It was really nice to get to know Erica and Lily. It was very sweet to see the girls together and really nice to know someone who understands completely what we are going through. Lily's parents knew about her cleft during pregnancy so we come from a different beginning but have defiantly the same outcomes so far. Lily is scheduled for sugery one week after Paige. Lily gets her nose shunt next week also. We look forward to getting to know them better and seeing the girls grow up to be great pen pals. :) Here are a few pictures of the girls together!

Yesterday, we had to be at the hospital at 6:30am on Thursday. We arrived a few minutes early and everything moved quickly. Paige was not allowed to eat after 2 am so she started to get fussy but was really great all morning. We talk to Dr. Alper and the anestialogist. We also met a nurse who had a cleft lip and palate. He told us his story and how his surgeries went. Paige went into surgery at 8:00am. She was there until 9:45 when we were called back to see her. She didn't even look like herself. She didn't open her eyes and her face was really white. She was screaming! She stopped for a minute when I picked her up but continued to scream then after. I got her to eat 1 ounce of sugar water and then waited for Dr. Alper to give us the results. She was still very upset and they gave her a really strong medication to relieve the pain. She calmed then after but I was unable to put her down. I held her from 9:45 until 4:30 with only putting her down a few minutes to go to the bathroom and to change her diaper. She wanted to be held and by all means, I was holding her!

Dr. Alper came to talk to us and told us that everything went as planned. (Although they told us it would only be a 45 min surgery but ended up being 1 hour and 45 mins). He said that her scope indicated a very mild case of reflux with a little swelling around her larynx. He said it wasn't bad at all. Her laryngo malacia is mild also and really is not a concern as long as the reflux is managed, which it is. We are good with her Zantac and thickening her bottles. He said that her ears were pretty bad. He said both sides were completely full of fluid and it was thick. They put a incision in her ear and inserted the tubes. He said that they sucked out as much as they could but her ears would still drain over the course of the week. She has drops to use for a week and can not get her ears wet at anytime. He did say that with the amount of fluid in her ear, it was a good indication of conductive hearing loss and NOT permament hearing loss. THANK GOD! She will have her hearing retest December 2nd.

At this point, Dr. Alper told us he wanted to keep her overnight for observation. I was NOT happy about this. We had the kids at the hotel with Aunt Jess and we had NO plans of staying another night. I didn't even have my wallet with me or clothes, brush, toothbrush, nothing! At this point, we had no choice but to let Hal pick up the kids and head for home. So at about noon, Hal picked up the kids and left. This was not fun as I hate it when he can't stay. However, Paige and I were fine and hung out in the recovery room until after 4pm. They then moved us to a room on the 6th floor. We did NOT have a private room and this pretty much sucked. Expecially when you share it with parents who really didn't seem to understand much of anything. They kept turning the temperature down to the point where Paige's hand was purple. I was getting annoyed. I will spare you the details but it definitly wasn't a good night and I got little sleep. Paige also was woke up many times because of the situation. So right now, she is sleeping soundly in her bed.

They released us this morning and Hal came to get us. Talk about putting mileage on our vehicles! Paige is doing well now and is in good spirit! She was "talking" to me earlier and is doing really good. I can tell a difference in her hearing already so I really pray that it does the job!

So there's a quick update of what happened over the course of 3 days. I am so happy to be home and allowing Paige a break before her January surgery. I will be requesting a private room for that!

Thanks to everyone who checked up on Paige and her progress! As always, we appreciate the people who take the time to keep up with Paige. Love you all!