Friday, October 30, 2009

So much to say

Firstly, let me say that Nestor has come home!!!! He had a terrific time down in Kentucky and Louisiana. I know he's happy to be home...but I also know he had a pretty rip roaring good time down there. Good eats, good sleep and treated like a king. Hey -- we have that here, just not the sleeping part...that is, until last night!!!!

No, no, get your mind out of the gutter. What I am talking about is my second topic here: Amelia has been soooooo sick since she got off her antibiotics after her hospitalization. She has been up nights unable to get comfortable. I've been suctioning her with the suctioning unit we've barely looked at for a year and a half. I've also been putting her on oxygen the last several nights because her oxygen saturation has been horrifying whenever she falls asleep (the lowest you want your saturation to drop is about 92, she's been dropping to 84/85) . So there's been no rest for the weary. Lots of breathing treatments too. Amelia seems to do great during the day while she's up and active (as most of us are when we're sick) but we just couldn't figure out what this new thing is -- she is sooooo unhappy.

In swoops Carrie (insert "Hero" music here) , a great friend who has a son with lots of similar issues to Amelia. Carrie called me the other day, I told her what was going on, she insisted that we take Amelia in to see her son's Pulmonologist, Dr. Marcus -- all the way out in Brooklyn, mind you. She claimed that he is "THE BEST"(by the way, she always claims this...and she's always right!). So yesterday was the big appointment.

Our lives have become a routine of shlepping Amelia from specialist to specialist. The times that you actually leave someones office and think "Wow, that was time well spent" are few and very far between...yesterday far surpassed any experience we've ever had thus far! This office and these professionals were incredible. Nestor and I were speechless! The Nurse Practitioner, Kathy came in and asked us all the important questions. Then Dr. Marcus came in, Kathy gave him the lo-down, he examined Amelia and then said "Let me give you the answers of what is going on here." Nestor and I just looked at each other, then at him and said, "Oh God, yes please!" Basically, he broke it all down to her GERD issues, reflux. All reflux related. The fundoplication Amelia had as an infant has most likely become loose over time and growth (it's where they take the top of the stomach and sew it around the base of the esophagus so when the stomach becomes full it cinches around the esophagus -- not allowing anything to go up it -- hence, alleviating reflux issues). Sooooo...the pneumonia was brought on by micro-aspiration of acids from her stomach, her airway is reacting to the acids -- there is possibly scar tissue forming in her airway from the acids going over all the time, therefore making it smaller and harder to breathe with the reflux and secretions in her throat and she has a chronic sinus infection from the acids going up into her sinuses when she refluxes. Everything is red, swollen and full of secretions! My poor baby. Sooooo....he changed up all of Amelia's meds, put her on an antibiotic for a 3 or 6 week course (not sure yet, have to have a CT scan next week to see how deep the infection is in her sinus cavity), Prevacid and Astelin. We're getting two devices: a Cough Assist (helps her cough) and a Vest (vibrates the chest and loosens mucous plugs). Both will help Amelia get her secretions up and out. We weren't happy to learn about all the things plaguing our little girl and that we're now going to have to deal with but at least it's nice to know what's happening so you can deal with everything appropriately. It makes me realize how unbelievably mismanaged Amelia has been.

I gave her 2 doses of the antibiotic, 1 dose of Prevacid and Astelin yesterday...I have a new child.
Amelia not only slept through the night, but she sounded amazing!!!!! So clear! Unbelievable.

So she was able to go to school today, dressed in her Halloween outfit -- not costume. Nestor is not a big believer in dressing children up unless they're in on it too. I get it, so we compromised and got her a cute outfit that is in the spirit of Halloween! So cute!

Third, and lastly, we have postponed our move to LA for a few months or so.

I have been in close contact with lots of wonderful people out in Los Angeles and the warnings are the same:
  • California is broke.
  • Services are being cut left and right.
  • The amount of therapy Amelia receives in New York will not be duplicated.
  • They don't use Speech Therapists out there, they have Occupational Therapists with "feeding specialty". That's 4 hours weekly of Amelia's mandate - GONE!
  • The big one: RESPITE IS GONE! Kaput! Not happening! We have 20 hours weekly of respite here.
I am afraid that if we give up services to move out there now, even when the State bounces back (and it will) and those programs are restored, we will not see those therapies and respite again. Once something is given up -- it is very difficult to get it back. I would rather wait a little longer and go out there on the upswing of services and therapies being reinstated. It would have been nice for the three of us to go out there as a family (Nestor has to go out there for Pilot Season in Jan/Feb) but it is for the best to wait a little longer until things are more stable.

"Tanks for weading my blog!"

Tuesday, October 27, 2009

Robotic therapy holds promise for cerebral palsy

This was shared with me by another Mom. It's very hopeful to see what's out there for our kids.

Robotic therapy holds promise for cerebral palsy

Monday, October 12, 2009

Better Now

Here she is! Back and better than ever!!! The girl is incredible.

We weathered the storm, yet again. Our wonderful in-home respite worker/friend, Jozette, was able to meet me at the hospital last Monday and help Amelia and I home from the hospital. My Mom arrived that evening from Baltimore and actually just left this morning. Between My Mom, Jozette and Amelia's former-full-time nurses, Lia and Keisha - Amelia is back to her old self. She's tearing up the joint and voicing her opinions on which cartoons are worth her time to watch. The other lovely thing she's been doing is sleeping in until about 7:45-8am. LOVE THIS!!!! I'm a little bummed she's going back to school tomorrow because I know I'm gonna have to start waking her up (and myself) at 7am. Oh was nice while it lasted!

It was really great that my mother was able to make it up here and stay for so long to help Amelia and I out. We are very grateful for the extra hand -- and thanks to my father for the loan-out this week...we sent her home just in time for your cataract surgery on Wed (!!!)

Yesterday Amelia, my mom and I went to my neice, Karena and her fiance, Jonathan's, new house in Jersey City for supper. My sister-in-law, Evelyn and her husband, Carlo were there and we met Jonathan's family for the first time. It was a really nice afternoon -- wonderful food, terrific company and I have to say, Amelia was sooooo good! She's always good, but she was really responsive, happy to be around everyone and just had an overall good time. No cartoons were put on -- which is sort of a huge thing. Normally, when we sit down to eat, I'll put on her mini DVD player -- otherwise I have to do "The Mommy Show", where I don't get to eat much, everyone at the table has to tolerate my innane songs and Amelia just gets bored anyway. But yesterday, she sat in her stroller at the table, listened, laughed and enjoyed being with her family!

Nestor will be coming home tomorrow for a couple weeks before heading back to Louisiana for another week. It will be great to have him home -- I'm definitely looking forward to a little time at home together.

NOTE: Thank you to everyone who offered up their help last week. I appreciate it more than you know. It's nice to know we have so many loving friends and family who will offer to go to such lengths and effort to support us. Your phone calls, blog comments and emails count too! We are truly blessed!

Sunday, October 4, 2009


As a child, my brother had this rubber caveman mask that was the most terrifying thing I had ever encountered. I wouldn't go into the basement because I knew it was down there. One time, one of his friends called my name from the back of the basement, I carefully and slowly went back and he jumped out wearing the goddamned thing! I freaked!!!! I was crying inconsolably for the longest time (in reality, it was probably only a few minutes -- but in memory, I never really got over it).

As a teenager, I was in a traumatic automobile accident with my cousin's girlfriend and best girlfriend from school while visiting my cousin in Florida. We were cut out of the car with "the jaws of life." I fractured my transverse process, had a hematoma in my kidney and had never known pain like that before. I didn't know if/when the pain would go away or if I would even live to see tomorrow.

As a twenty-something, relationships began and ended. The raw ache it would leave behind each time got deeper and deeper. The notion of opening myself up to the next person seemed an insurmountable feat. Why would I even do that again? It will just end badly. I'll have that hole in my chest again that makes me feel like I need to stop breathing and that life will never be happy again.

At thirty five I had Amelia. Fear has a whole new meaning. Becoming a parent does this to you -- whether your child is healthy or not. Everything you ever thought about becoming a parent no longer applies and everything your parents ever did that you thought was crazy-overprotective or just plain crazy, makes sense.

Friday night/Saturday morning, at 3AM, I knew real fear. I heard my little girl fighting to breathe. My regular course of action, as we've been down this road many, many times with her small, reactive airway, is to give her motrin or tylenol and a nebulizer treatment. Normally, the treatment calms her breathing as the her fever is reduced by the meds and afterwards she goes right back to sleep. Not that night.

The treatment wasn't working. Amelia started to do something I've never seen her do before. She would tense her whole body, make a guttural cry out and cough, A LOT. Over and over she did this. I turned on all the lights so I could really see her coloring and her lips were darker than normal and she was shivering horribly. Without hesitation, I dialed 911. It seemed like too many minutes between me dialing 911 and a voice coming onto the phone. I stayed on the phone with them and was assured there was a team of emergency workers on the way.

I was so sure, as I stood there next to Amelia's crib, that I was losing her. She looked so bad. No longer making guttural sounds, her eyes were rolling up into her head and she was just struggling to breathe. I was racking my brain trying to remember child CPR. I kept repeating "stay with me Amelia, stay with mommy, little girl." The police arrived first, as the 6th Precinct is downstairs, then EMS and the Fire Dept. They took the nebulizer mask and attached it to the oxygen tank and we carried her out to the ambulance. Once inside, I told them I wanted to go to NYU because that's where all her Drs. are. When we reached 14th street the paramedic told me we were going to the hospital closest on 16th st., Beth Israel.

When we arrived at Beth Israel, they put us into the trauma room and started working right away. Heavy breathing treatments, IV and oxygen. Amelia's fever was 104. After a few hours of this, we were transferred up to the PICU. A full regimen of the same continued. There was no sleep -- which was fine for Amelia because she was all wired up on albuterol. Her fever was up and down yesterday, we had two more scary episodes. And so the day continued.

Coffee, cartoons, a private room and an egg and cheese sandwich were our luxuries yesterday. Then, our upstate friends -- Amelia's adopted Titi (Aunt) Terry called and was on her way into the city to lend her support for the afternoon. I had several offers from family to come up from Baltimore (thank you and I love you!!!) but it all seemed too much. This was perfect! Terry's son drove her in for several hours and I was able to run crosstown to shower, pack a bag and get the car, while Terry stayed in the room with Amelia. When I got back, we ordered in some dinner and sat around and "gibber jabbered" for awhile. I think the bit of normalcy was good for Amelia because she perked up seemed much better. She sat up in bed the whole time watching cartoons and playing with her couple favorite toys I brought back for her.

Last night was pretty good, considering Amelia had to have multiple breathing treatments, vitals checked, fights with cannula's and overall hospital stuff done all night long. No scary episodes and we both slept quite a bit. She sleeps even now. Ahhh...there's nothing more restorative than sleep. Amelia's breathing on room air now, hasn't needed O2 since we woke up this morning and they gave her her first feeding late this morning. I think they're moving us out to the Pediatric floor today and if all goes well, we should be home tomorrow.