Sunday, May 31, 2009

Best Day So Far

Well, it's been inching the right direction each day and today was the best so far.

We were released from the PICU on Thursday and came home to find my Mom (Bubbie) and Amelia's nurse, waiting outside for us. We loaded her out of the car, brought her upstairs and propped her up on pillows on her playmat in front of the TV for the rest of the day. Cranky and kvetchy, she just stayed there and watched episode after episode of all her favorites. Amelia was fed there and given her breathing treatments there -- all propped up like the Queen of Sheba!

Amelia has a new G-tube button called a Bard button and I'm still getting the hang of it. It's similar, but different enough from her old one to cause me stress -- the extensions and tubing are rubbery and it's not fun giving her medication thru them because I never feel like they're attached properly.

Nestor got a call Thursday late afternoon that his Manager had closed a deal for him and he was flying out to Miami on friday morning at 7am. Ummm...ok. So my Mom switched her plans and stayed here with me for the weekend into the beginning of the week. Thanks Mom! Always here whenever and wherever needed. We are very blessed!!!!
I think Nestor will be home tomorrow, so that's good -- cause I know Dad is missing Mom (awww!).

The first night home was pretty bad even tho I had given her 2 doses of Tylenol with Codeine throughout the night. The next night was a little better, last night better and well...I'm keeping my fingers crossed for tonight. We've been giving her Tylenol around the clock -- and no more codeine since the first night.

Today Jackie, my sis, El, my bro-in-law, Ezra,(4) their son and Maya,(almost 2) their daughter, visited us in the city. It was great. They came up on friday to go to an Anniversary party for old family friends of El's and stayed for the weekend up in his old neighborhood. So today they drove down and spent a few hours with us. Amelia was really happy to see her cousins. We had lunch and went to the park. It was Amelia's first time out since the surgery. It was a gorgeous day and she really enjoyed herself. I hadn't seen Amelia sit up so tall in her stroller in a week. It was great! They all left and of course, Amelia took a nice long nap. After, she got her breathing treatment and Bubbie and I took her back to the park before giving Amelia her first bath since the surgery (which she really seemed to enjoy)and dinner.

We're keeping her home tomorrow with the intention of sending her to school on Tuesday. Hopefully...

Wednesday, May 27, 2009

Pain, pain go away!!!!

Well, surgeries were a success. All three docs reported that things went well. Amelia is in so much pain. We spent hours in Recovery and then were put up here in the PICU overnight. They were concerned about her respiratory system. She had some pretty heavy stuff coming out in the ER and I've been suctioning her more than I have in years -- of course, she keeps crying so that's not a huge mystery as to why!

The Opthamologist did a great job and was really happy about how it went. But it's very sad to see your child cry blood tears. Amelia has a big, swollen blood clot, in the inside corner of her right eye, both eyes are reddish and slightly crossed (this is normal and within a few weeks/months they should straighten out).

The ENT told us that he had thought the adenoids were blocking 90% of her nasal passage, but when he got in it was worse. He said it was growing into the back of her mouth. It was completely blocking her nasal drainage and on top of that, her tubes were either no longer in/not working, so there was tons of fluid and puss built up in her ears. Poor little thing!

Amelia now has a little button in her belly called a Bard Button, as opposed to the Mic-Key button. It's smaller and more flush to her skin, but it doesn't have a balloon to inflate to keep it in her stomach -- it's more of a hard plastic mushroom on the inside to keep it secure. The downside is, if something happens to it, we need to run to the ER to have it replaced (I can replace the Mic-Key myself) because the Bard has to be inserted through the esophagus (YUCK!). So that's a little worrisome. However, the chances of it coming out is less than the Mic-Key because it's a more secure device -- no chances of a balloon bursting. Oh well, just a month or two before they switch it back out for the Mic-Key.

So that's us. Thank God this day is over. Each day will help her heal and get back to being her happy self. Right now she's in a crib, in a room, shared by two other kids, watching Tigger and Pooh on our computer at her bedside. She's crying and fussing and giving me a heart attack every couple of minutes as she throws her arm with the IV around or tries to kick around, while they're finally giving her some Pedialyte in the new g-tube. Glad to see she's getting back to normal.

And a BIG thank You to Chai Lifeline for bringing us a delicious, hearty and appreciated dinner tonight at the PICU. We are so lucky that they are just a phone call away in times of need.


We're here. We met with the 3 docs doing Amelia's surgeries. I carried her into the ER. Sang "5 Little Speckled Frogs" as they put the mask over her little nose and mouth. She smiled up at me and then faded into sleep.

They have 3 hours allotted. Eyes are first, then ears and adenoids and lastly, close the existing g-tube site and create a new one. Each doc will find us here in the waiting room after they have completed their procedure.

Calgon take me away!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Monday, May 25, 2009

Farewell Memorial Day Weekend

I always look forward to Memorial Day weekend. As a kid, it meant that school was almost over and summer was about to begin. Camp, swimming, staying up late...all the good stuff. As I became an adult, I looked forward to it because it meant a 3 day weekend -- and when you're working an office job -- that's awesome!!!! Then, when Nestor and I got married, we decided on Memorial Day weekend, so we could throw a huge, boogie down wedding for all our friends and family -- many of whom were out of towners.

But today, Mom of Amelia, I'm sad it's over, because it means that her surgery is the day after tomorrow. I know she'll be fine. I know the procedures she's having done are "routine". I know she's a trooper and that she'll be so much better off in the long run to have all this done at one time -- and just to get it all taken care of so she can progress. But tonight, as I put my sweet little girl to bed, she looked up at me with those big, brown, trusting eyes and gave me the look. The look that only a little trusting child can give a parent. The look that says "I know you'll never let anything bad happen to me."

I lost it.

I'm going to walk into NYU on Wednesday morning at 6:15am and hand over my baby girl to 3 different surgeons so they can perform strabismus eye surgery (working on 3 muscles), replace her ear tubes (3rd set), remove her adnoise (her nasal passage is 90% blocked) and completely redo her g-tube site (sew up the existing site and punch another hole in her stomach). Yes, these are top surgeons. Yes, this is all routine stuff. Yes, children have amazing resilience.

But I feel awful ....and angry -- so f#@^&*g angry that she has to go through this. Amelia's come such a long way. I know her site can't stay the way it is -- the track (think of the shaft of an earring hole) has stretched and all this raw gooey skin is sitting just under her Mic-key button. It won't allow the button to sit flat and we have to put cut pads around the site to keep the milk and stomach acids from pouring out of it.

On top of all the obvious pain and recovery, the other big thing is that we have worked so hard to build up Amelia's stomach muscles to help her core to strengthen and now, they're going to cut through a whole new set of stomach muscles. She's been sitting up so well -- finally. Yesterday I was playing with her and she sat up for a solid 45 minutes -- completely unassisted and effortless.

I know it will all be fine. I'll vent to you guys and get over my anger (for the moment)...I'm having a "why her" kind of night. The important thing is to keep my eye on the "big picture" and jet through this so we can see our beautiful girl with straight eyes (hopefully), ear infection free who no longer snores so loud and can breathe better, dare I say -- through her nose and gets her g-tube feeds hassle free -- with the incredible added bonus for Mommy of NO MORE CAUTERIZING!!!! Too good to be true.

Keep us in your thoughts and dreams. I'll keep you posted.

Friday, May 8, 2009

Poor Little G-tube Site

Our future little blogger!
This was actually taken at the Ronald McDonald House last fall -- I just love it tho!

Sooooo......we had to cancel Amelia's ear tube and strabismus surgery which was supposed to take place yesterday because our ENT felt uncomfortable at the the surgery clinic where they were going to do the procedures. It seems that last year they shut down their pediatric facility there and are no longer equipped for a pediatric emergency there. We are totally okay with this...but it's still gotta get done, so we're waiting to see what happens.

In the meantime, we took Amelia to the surgeon's office, Dr. Ginsburg out of NYU on Tuesday because we've been having such a headache with her g-tube site. I've been cauterizing it every other night and using steroid cream on it (shrinks the skin on the site) all for naught.

Dr. Ginsburg looked at her sore little belly and said:

"Yeah, you've done everything you could do. It's not your fault and we don't know why this happens, but we're gonna have to close up her existing site and make a new one".


Horrified looks on our faces -- as if we just got kicked in the gut.

ME: "Isn't there ANYTHING else we can do?"

DR. G: "Nope"

ME: "But I was just bringing her in so you could fix it. Here. Not surgery!"

DR. G: "Sorry. You can go home and discuss it and get back to me."

ME: "Could we do the tubes and strabismus at the same time?"

And that my friends is our new little headache. And we are actually trying to see if there is anyway on God's green earth that we can do all the stuff at the same time. I'd hate to have to put her under twice in such a short span of time. Problem is her other 2 docs don't work out of NYU so we're trying to figure that out.

On a happy note, earlier that same day we attended a lovely luncheon that is given annually by UCP, NYC. The "Women Who Cares" luncheon is held every year at Cipriani's on 42nd Street. What an event. So many wonderful people there who have done so much for the community as well as so many who have personally touched our lives and helped us through some of our darkest hours in learning how to cope with Amelia's needs. Nestor was honored to present their new website which is a resource for parents and families dealing with the day to day needs and services of their special needs child. I always sit at the event and just cry with each person honored and video shown of our kids. Always the most striking is when they show the "then" and "now" pictures -- which shows the stark contrast between how our kids used to be treated -- filthy institutions with NO stimulation, food, clothing, or any human rights to speak of and today, with wonderful programs and people who take our children and their rights very seriously.

And we are winding down our week in Baltimore at my parent's house. It's my little cousin's Bat Mitzvah tomorrow, so we came down here yesterday to attend the weekend of events. How fun! I'm very excited that I will be wearing the very awesome Nicole Miller dress from Nestor's and my rehearsal dinner from when we got married. Never thought I'd fit into that again! Fits like a glove. YAY! So I'm preparing for a little dancing, drinking and merriment.

On a last note, I was very sad to attend the funeral for my cousin Alan's Father-in-law, Leonard Ponfield today. He had been very sick. It broke my heart to see Alan, his wife, Jodi and their two children, Jamie and Brian and all their Aunts/Sisters/Mothers/Fathers/Uncles/Cousins so bereaved. I just hope they felt all the love that everyone at the funeral was sending them to help them through this devastating time.