Top Social

Not really sure…

November 15, 2010


I won’t lie, things have been stressful.  We are worried about our little one.  We don’t know what it is that is exactly causing her issues, the NOT KNOWING is so hard!  On the outside, Lucy is beautiful, dare I say “perfect”. 


Her personality shines on most days, and so too does her pain.  We have been on sort of a wild goose chase trying to hunt down the cause for Lucy’s symptoms.  She continues to have all of the same symptoms she had when I last posted, but add to that list bloody, mucusy diarrhea and a ripe yeasty diaper rash.  We tested her for Flagyl resistant c-diff (a bacteria that is contracted in those who have been on antibiotics and in the hospital) and thought for sure this is what she has, her tests are saying otherwise.  We are, however, continuing her on Vancomycin, the antibiotic used to treat Flygal resistant c-diff, for a few more days to see if her symptoms don’t improve.  So far they have not.  Our pediatrician and Dr. R have both been following Lucy’s symptoms and are very concerned.  Lucy’s body is not responding with an elevated white cell count, and this has everyone worried that she is so immune compromised she has very little to fight with.  The biggest concern is that her bowels are slowing down as a result of her GI dysfunction.   I am almost too afraid to ask her doctors what that means.  Dr. R said that it is really up to Lucy’s body to tell us what it will do.  He is most afraid of her bowels translocating bacteria into her bloodstream and thus infecting her body.  We all agree that keeping her out of the hospital is safer than admitting her, at least for now.


Lucy has declined so much in the last month it is difficult to define what her baseline is.  She is on so many new medications, has a central line, and is 100% TPN dependent it is nearly impossible to say what if any of those things might be contributing to her symptoms.  The plan for tonight is to continue to do what we have been doing and report any changes in Lucy’s symptoms to Dr. R tomorrow. 


I know I say this a lot, mito is such a baffeling disease.  Your thoughts and prayers are very much needed.    

Post Comment
Debbie said...

all of you have been through so much...I am so sorry.

She is beautiful and I will be praying for things to turn around for her.

I despise this disease!

Emily said...

I feel your frustration.We are inpatient again.He has had 105 fevers and severe leg pain. Also his liver is not doing good.Your sweet Lucy is in our prayers. Come visit us if your here tomorrow.
Emily [Kaden's mom]
3702b 3f

megan said...

Thinking of you guys everyday! We should plan something after Thanksgiving. Emma wants to see her Lucy! Enjoy your turkey!

Jessica said...

I have been following your blog a long time..I think you left a comment on mine a LONG time ago too lol..I am sorry that Lucy is going through such a rough time(((hugs))).I know how you are feeling..Odd how similar things are going for our kiddos lately,my sweet boy is really progressing too..Brent got his central line Oct 29 and last week he had what we feared most,a blood infection caused by bowel bacteria that translocated(he also has CIPO).He just got out of the hospital Friday and he is still on IV Vancomycin.His white counts are not increasing either,even with the blood infection they didn't rise so that sent up huge red flags(though we have known for some time that something is wrong with his immune system).We are going to see a hematologist/oncologist Nov 30 to probably have a bone marrow biopsy and see if he can figure out exactly what the issue with the white blood cells is and hopefully start Neupogen or maybe something else because he keeps getting very sick.Have they talked to you about what they might do for Lucy's white counts?I hope so because I am so scared of it happening again!
Anyway I just wanted to tell you I am thinking of you,and I pray she starts feeling better soon!