Archive - February, 2009

Home Sweet Home

February 6, 2009 in Lana's Journal with 17 Comments

I just wanted to quick update and say that we are home! Carmen still has pneumonia and will have a few more rough days. I convinced the doctor that we can do everything at home and didn’t need to stay in the hospital! Carmen cried a few times from being poked and prodded. She hasn’t cried in months and months. We can take care of her at home far more comfortably.

Carmen is taking both Azithromycin and Ciprofloxacin for the pneumonia. Hopefully her lungs will clear up quickly.

While in the hospital, I asked the doctor to order a Cough Assist machine for Carmen and hopefully we will get one soon. It would be very helpful to get some of the gunk out of Carmen’s lungs and throat and into her mouth so we can suction it out. Thanks to Julie for all of the information!

Speaking of suctioning, we try to suction the thick saliva out of Carmen but that is no small task as she clamps her teeth and refuses to open her mouth! If we do get the suction catheter in her mouth, she bites the tube and won’t let go! We’ve tried going down her nose instead but nothing ever comes out of there. Anyone else have this problem with suctioning?

Dave is sick, blah! He is going to the doctor today. NY Grandpa is here to help and I am SO thankful for him!

Big thanks to MiYoung for the snacks, books and magazines and dinner last night! Did that chocolate bread have rum in it? Very yummy! Thanks to Karen for Moby Dick’s chicken in the hospital and for taking Lauren yesterday. And to Monica the Magnificent- we are so grateful to have you in our lives. Thank you for watching Lauren for 12 hours on Wednesday!

Thank you for all your prayers! Please keep praying as Carmen isn’t back to normal quite yet. Dave could certainly use some prayers too. He looks like a truck ran over him!

Another Hospital Visit for Carmen

February 4, 2009 in Dave's Musings with 32 Comments

Carmen was admitted to the hospital earlier today. They haven’t figured out what she has but suspect it could be pneumonia and/or RSV. When I walked into her hospital room at about 8:45 PM tonight, she looked awful even though she’d already been there for half the day. Every monitor in her room was beeping all over the place. Her breathes per minute were well over 100. Her heart rate was well over 170. Her temperature was above 104 despite having tylenol or ibuprofen just 30 minutes prior. Her face was beat red. Did I mention that she looked awful???

Lana is at the hospital and will spend the night there with Carmen. Lana will provide a more detailed update tomorrow.

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Monica the Magnificent and Karen…we cannot thank you enough for all your help today! Like Carmen, you make our hearts sing!!

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THURSDAY, BRIEF UPDATE: Carmen’s fever has subsided mostly and it looks like she’ll come home today. She has pneumonia but tested negative for everything else so they are chalking it up as idiopathic (unknown cause).

Thank you all so much for your prayer support!

When You Aren’t Looking

February 3, 2009 in Lana's Journal with 7 Comments

This is what happens when you are busy with your sick 2 year old and your healthy 5 year old is bored. Maybe she will be an engineer? She says she wants to be a night nurse, which makes me so proud. Although I wonder if that thought is influenced by the fact that Carmen’s night nurse keeps sodas in our fridge!!!

To clarify my previous post, we are thinking about one of us taking Lauren to the annual family Tay Sachs conference. Lauren had such a blast last year and has been talking about going to Boston ever since. I think it is so good for her to spend time with other children who understand what it is like to have a sibling with Tay Sachs or a related disease. Last year we learned so much about how to care for Carmen. And we met so many wonderful people. It really was a highlight of our year. We can’t take Carmen because of the never-ending C-diff, but perhaps some of us could go. Hopefully something will work out!

Goodnight and I’ll post an update on Carmen tomorrow.

Cups

Sickness, Sickness, Go Away!!!

February 3, 2009 in Lana's Journal, Tay Sachs with 11 Comments

Carmen update: Carmen is not doing well at all. She caught whatever Lauren had. It took Lauren almost a week to get over her sickness so I am scared for Carmen. She has been fighting fevers for the past couple of days and we have been rotating Tylenol and Ibuprofen trying to keep them down. Anytime her temperature goes over 99 degrees, she cannot control her breathing so you can imagine what 103 does to her. She has tons of mucus that she cannot cough up so we are doing lots of nebulizer treatments and suctioning. Yesterday she did manage to cough up a huge wad of yellow mucus and I was so proud! (Funny what makes me proud these days!) I am waiting to hear back from her pediatrician about starting an antibiotic.

We took Carmen to Children’s yesterday for her Infectious Disease appointment for the C-diff. The doctor wants another C-diff test and a whole bunch of parasite type tests. If she still has C-diff (which I am 100% positive she does) then we will start a 6 week course of Vancomycin. She will start at a high dose 4 times per day and then taper down each week. I am so not happy about this as Vancomycin is so strong. Carmen ended up with a yeast infection down her leg during the last round of Vancomycin. But, we have tried just about everything and nothing is working. (The fecal transplant is only used as a last resort so we have to do the tapered Vanco before that will be an option.) The good news is the doctor said not to worry about exposing C-diff to anyone in the general population. She said that compared to 5 years ago, C-diff is so prevalent that most everyone is exposed to it and many people are colonized with it who show no symptoms. Of course, we will not take Carmen to the annual family Tay Sachs conference as the children are far more susceptible to something like C-diff.

Please pray that Carmen gets through this awful sickness quickly!

Edited to add another update: Carmen has finally fallen asleep. She only slept three hours last night so she must be exhausted. Her oxygen level is 100% and her heartrate is down in the 120s. Prayers are working so let’s keep praying!

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