October 29, 2009

Lots of Updates...

Update on Max:
Max had his echo yesterday. 30 minutes after given the sedation he still wasn't asleep. They gave him another half dose and waiting another 10 minutes... still not asleep. Very grougy and his head was flopping around, but he was still talking and trying to sit up. We finally just started the echo while myself and two other nurses held him down. 5 minutes later he finally fell asleep. He stayed that way until I woke him up to go get our haircut. Results are in, but I don't know them yet. I just emailed Dr. Ben to get them. Check back soon...

Max also had a chest xray yesterday because I was not comfortable with his breathing. Dr. Ben and Dr. Brad thought it could be a viral pneumonia It came back descent. They said there was a little bit of fluid, but Dr. Brad didn't see it. He said if there was any it wasn't enough to worry about. As far as the pneumonia there were a few traces that could be related to it. He is on an antibiotic from a sinus infection, so they think that's taken care of it. Dr. Ben said it can take weeks to get a clear xray after having pneumonia, so he could have had this back when he had his cold (about a month ago) and we just never cought it.

I have a newborn... his name is "Cycler" and he DRIVES ME CRAZY! All he does is cry throughout the night. We get up with him about 4 times a night for 20-30 minutes at a time. I am going to throw him down the stairs when all is said and done. OKAY OKAY... don't go calling child services on me. The "cycler" is Max's dialysis machine and it is worse than having a newborn. We are trying a couple of things to see if we can eliminate some alarming. So far so good... for the first time in about 6 weeks.... I got to sleep through the night!!! This makes me a much happier mommy today. Dr. Brad says this is just a hiccup, so hopefully he's right again.

I don't know if I bragged about this or not, but at our nephrology appointment 2 weeks ago Max went from 73.8 to 75.5 centimeters. Yesterday he went from 75.5 to 76.1 centimeters. Ladies and Gentlemen.... THIS IS FANTASTIC!!! Max is now in the 3-10 percentile for length. WOOHOO for him.

Some of you may be wondering if I ever got the nerve to call and schedule the transplant. I did, but it's still not scheduled. We have quite a few big events going on in May and June of 2010 and if time will allow we are trying to schedule around them so that Tim and I can attend. With that said, I was told that Dr. Sheldon most likely won't be back until late spring or early summer. I am a very selfish person when it comes to my son's care, so I want Dr. Sheldon to be there. I want the best of the best to be in that OR room on the day of my son's "life changing" surgery. I want the doctor who says it shouldn't be a problem to connect the ureter to his bladder to be the one to do it. My name is Beth Livingston and I am selfish. I want the best.

Update on Brooke and Baby Gabi:
Brooke had the amniocentesis on Monday night. They removed a large amount of fluid and sent it for testing. The good news is that the ultrasound on Tuesday showed that Brookes's fluid level was still within the normal range. The bad news was that the tests showed that Gabi has fetal hydrops. This is a severe condition that is usually fatal to the infant. With that said, Brooke had another ultrasound this morning and it showed that all of the arteries in Gabi's belly are all looking good. The tech also said that the fluid in her belly decreased a little bit. Some of the genetic testing they did on the amniotic fluid came back and all looks good with that. Brooke's fluid levels increased a little, but are still normal. She is having a fetal echocardiogram today at 2pm, so please pray for them. Please pray that it comes back normal. Please pray that all of this is just Gabi keeping everyone on their toes.

Update on PawPaw Larry:
Not too much has changed. He should be starting his chemo and raditation treatments next week. Keep him in your prayers as he begins his 6 week treatment plan.


Update on Dr. Ben's little boy's name:
Zachary Aaron * 5 pounds 13 ounces * 19 inches long
Both mom and baby are doing well :o)

Misc Info:
Little Miss Kate (the 5 year old little girl I've been posting about who has a brain tumor) was interviewed by Dr. Phil yesterday. Stay tuned for the episode to air :o) Very exciting for the family to get awareness out there about childhood cancer. check her out at www.prayforkate.com

9 days until my little (yet taller) brother gets married :o)
29 days until my older (and much taller) brother gets married :o)

Yes we are VERY busy around here :o)

Have a great weekend everyone.

1 comment:

Jodi said...

Wow, you have been busy! Lots of good, and at least not bad, news though, so that's great!

Oh, and about you being selfish about Max's care - you go Momma! I am totally selfish when it comes to FireGirl about stupid stuff, so I can only imagine in your position.... heck yeah!

BTW - you're such a good mommy!