We are HOME! Carmen was discharged this afternoon. She sounds like she is in horrible distress but her heart rate is back to normal and oxygen levels are fine. She took an afternoon nap and was at 99% oxygen and 100 heart rate, which is fabulous! We are to keep her away from other children until she is cleared by Dr. Pedreira so I will take her back to the doctor on Monday or Tuesday.

Thanks to Michelle for dinner and to Claudia and Eric for the yummy cake! I can see why that is your favorite German dessert!

I can’t remember if I mentioned that my father-in-law is here to help with Lauren and whatever we need. He is always ready and willing to jump in the car and drive 6 ½ hours from New York to help us. He is a huge help and Lauren LOVES having her Grandpa here to play tea party and tent and Prince and Princess. Thanks Doug!

I will be typing up a summary of our Florida trip to the NTSAD conference (Tay Sachs conference) and to Disney World, so stay tuned!

Carmen is doing much better today and might go home Saturday or Sunday. The doctors are weaning her off the oxygen and she is doing well. She has slept most of today which is good. Yesterday she was so restless she could not relax but today she is much calmer.

Last night Carmen had a 25 minute seizure. We (a nurse, doctor and me) watched her carefully. She did not seem uncomfortable and was not in distress, so we waited it out. We could have given her Valium to stop the seizure but we did not want to further compromise her respiratory status. Carmen has an appointment Friday with a white matter specialist neurologist so we hope to get her on a seizure meds cocktail to control these long seizures. Right now she is just taking Keppra for seizures.

Carmen will be seeing an ENT shortly after discharge. Looks like we will be able to get her in quickly (being in the hospital always speeds up appointments!). Her stridor (loud, high-pitched breathing noises) is getting worse. From what I have seen, Carmen seems to have more of a problem with this than other Tay Sachs children.

I am also hoping we can push forward with getting The Vest approved by our insurance. The Vest is basically a more effective way of doing manual chest physical therapy to loosen up junk in the lungs. Once the mucus is loosened up, it can be suctioned out. The Vest is a modest $16,000 (ouch!).

Pastor Joey came to visit Carmen this morning. We had a wonderful visit. I think I looked frightful in my pajamas and with my wild hair mess! Oh well, humility is good for the soul, right?!

Thank you to Kobe for dinner! We really enjoyed that taco meat! And, thanks to Indira for taking Lauren for a playdate today. Thank you to Karen for taking Lauren yesterday. She said you fixed her hair!

I want to also thank Dee, my friend who also adopted a little girl from Guatemala. Wednesday after Carmen was admitted, I rushed home to get some clothes for the hospital. Lauren was falling apart tired and in no mood to let me get anything done. A package had come from Dee so I opened it and Lauren had a blast playing with all the girl stuff from Dee! I was able to pack everything up and could hear Lauren happily organizing all of her new treasures and playing make-up! Thank you for the jacket for Carmen. We have had some wet, windy days lately and this fits her perfectly.

Thank you for all of your prayers for Carmen! They are working.

Yesterday I took Carmen to her pediatrician because her normally heavy, noisy breathing seemed more labored than usual. Dr. Pedreira took one look at Carmen and called 911. Carmen was taken to the hospital by ambulance and Lauren and I followed. Carmen has RSV and will be in the hospital in the pediatric ICU for at least a few days. She is getting high-flow nasal canula at 10 liters to open up her lungs. Yesterday she was working hard to breathe. Today she is still having periods of rapid breathing but seems more comfortable now.

I feel horrible because this really snuck up on us. I had no idea Carmen was so sick. I waltzed into Dr. Pedreira’s office all ready to tell him that I wanted Carmen to see an ENT for her increasing stridor (loud breathing). We met children with Tay Sachs this past weekend and none had Carmen’s noisy breathing. I guess her “normal”, noisy breathing had turned distressed but I didn’t catch it. The doctors think Carmen was exposed to RSV this past weekend while in Florida. I am hoping none of the other children at the Tay Sachs conference get sick too.

Thank you to Sarah for coming to the ER to take Lauren for the day! She had a blast! And thank you to Shar and LaToya for visiting us and for lunch. Thanks to Karen for dinner last night and today. And finally, thanks to Monica for coming to visit today! You are so much fun to talk to!

I had a whole lot to say about the Tay Sachs conference but will have to wait until I get home.

Please keep Carmen in your prayers. It really hit me yesterday that I am not ready to let her go.