Monday, December 15, 2008

The Boulevard -- All About Amelia article

Quick update: had a terrible night last night. Fever at 103 all night. Almost went to the ER because of wheezing and high respirations at 4:30am, but she settled down and went back to sleep somewhat comfortably. Of course she woke up every 10 minutes with a cough or sneeze -- but we made it through the night and was able to take her to her pediatrician (civilized) this AM.

We were sent to NYU for a chest x-ray. It showed that her left lung is doing better, but her right lung is still looking not-so-good, so they changed her antibiotic and put her on Prednisone (steroid). Hopefully this will kick it! She seems playful but very pooped out. Cancelled all her therapy except for her teacher today. Figured she could use a little stimulation that wouldn't excert any major energy on her part.

This fall, The Boulevard (a society magazine based out of Long Island), came to our house upstate and did an article on Nestor and his work, play, past and present, life with Amelia and I. We just got the hard copy in the mail today. It really is such a well written, folksy article and I was able to find the online link.

Friday, December 12, 2008

Home & Exhausted

Well, Amelia pulled thru last night like a trooper and we were released at noon today. Our perky nurse Jessica pushed things right along and we were out of there. She'll be on 2 heavy duty antibiotics for 10 days -- one for bacterial pneumonia and one for aspiration pneumonia, as we're not sure which one she has and lots of breathing treatments.

No one likes to be in the hospital, but for a Mom of a medically fragile special needs kid, as far as supplies go -- it's kind of like Disneyworld. Stay with me here. When we're home, I spend tons of time each day keeping syringes, extensions, venting tubes and bedding clean with vineager and water/soap, etc. At the hospital, I'm constantly amazed at at the blase' attitude nurses and doctors have about equipment and supplies. Everything gets thrown out -- even if it's just opened and not even used. And nurses are usually all too happy to share the wealth. I felt like a kid in a candy store as we were leaving and Jessica asked "is there anything else I can get you?" I said "We-e-e-e-l-l-l-l..." I know I sound like a kook -- but I brought home tons of syringes, new bulb syringes, vials of sterilized water (great for giving flushes -- for the GT -- while travelling), etc.

When we got home I put Amelia on the playmat and I am telling you, if she had a jet pack -- she would have rocketed to the moon. She was on fire. Into everything and crawling all over the place. We were so relieved to see her playing. Her teacher, Carol came by to do a therapy session -- not expecting much, and couldn't believe how attentive and motivated Amelia was to play. She stopped at 45 minutes becasue Amelia was clearly losing steam. But man oh man, if you had seen her two days ago, you wouldn't have believed that she would have been able to sit and play with toys today.

Anyway, we're all unpacked and settled. I haven't really slept in about 5 days, so I'm enjoying a vodaka beverage that my husband concocted for me. Sleep tight all!

Thursday, December 11, 2008

I take it back

...she was on oxygen all night. First by mask, then by blow-by. Oh well. She's off it now. If we have a good night tonite we get to go home tomorrow. Keep your fingers and toes crossed!

Wednesday, December 10, 2008


I am writing from Schneider's Hospital in Long Island. We came out here for the week to do Therapies 4 Kids for just the week and Amelia got pneumonia. It started Sunday night right after we settled in for the night at the Ronald McDonald House. We had our first HBOT dive scheduled for Monday morning at 7am and then on to T4K's for 4 hrs and then back to HBOT for dive #2. We made it in for 2 hrs of PT and our afternoon dive. That night Amelia seemed fine and Tuesday we did our early morning dive and 4 hrs of PT. She did great, but her ears were really red, so we didn't do our afternoon dive. That night her fever spiked and this morning her fever was gone and she seemed good so we took her in for a couple hours of light therapy. Well, she could barely keep her head up. Her respirations went way up and we took her home to give her a breathing treatment. After the treatment Amelia's breathing was still so bad and she was burning up, so at our NYC Peds. advice, we took her to Schneider's Children's Hospital, where we spent 6 hrs in a room in the ER, where they took her for a chest x-ray and discovered that she has pneumonia in both lungs. They were started an antibiotic IV and admitted us to a room upstairs. So here I sit. I have a very pooped little girl, who is very angry about the splint on her arm keeping her from moving too much -- so as to save the IV -- which took 4 sticks (pricks) to get. What an awful thing to watch as three people -- drs. and nurses stand around trying to get a little needle into a tiny vein. The cries and howls are pretty unnerving.

The really good news is that Amelia is so strong now that we didn't need to give her oxygen or suction her -- which tells us how strong she's gotten. So that's the upside of this experience. Sucks that we're here, but good to see how different this visit is than the last one -- which was just about 2 years ago exactly.