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Tomorrow’s another day…

June 20, 2009

I admit that I set myself up for failure when we originally scheduled this admission.  I was really hoping that we would be discharged today so that we could be home in time for the weekend, which coincidentally happens to be our wedding anniversary and father’s day weekend.  Lucy’s body has other ideas, and right now we need to be here.   Lucy has an aspiration pneumonia that was detected by x-rays done last night, we are treating  her with IV antibiotics.  However, she is still running a fever in spite of the antibiotics and Tylenol.   Personally, I think that Lucy’s body has had enough and is responding to all of the stress with a fever on top of the pneumonia.  She is still very out of it and extremely floppy, when she has been awake she is extremely irritable, wouldn’t you be too! 


Lucy is still NPO, which means nothing by mouth, and now with the aspiration pneumonia they are having us hold off  on breastfeeding even longer.  Lucy has a history of aspiration, we discovered this when we introduced her to water and a Sippy cup several months ago.  Lucy’s suck and swallow are weak due in part to her hypotonia.  She is unable to draw water out of a regular child's non-spill Sippy cup, because of this we tried giving Lucy water through a Sippy cup without the non-spill valve in place.  This is when we noticed that she chokes, gags, choughs, gets red water eyes, and can even sneeze whenever she drinks water.  These are all signs of aspiration so we have been thickening her liquids to a nectar like consistency to prevent her from aspirating which can cause aspiration pneumonia.  Lucy’s speech therapist (ST) said that we could do a swallow study to evaluate the severity, or we could just remedy the problem for now and do a study at a later time when we don’t have as much going on, whenever that is.  In order to start breastfeeding again we need to speak with the ST here at CHOP and discuss the situation.  If I had to guess, I think a swallow study is in our near future. 


Lucy’s NPO status means that we still have not tried out her new hardware.  We have, however, gotten a little bit more familiar with it.  Both Drew and I have discovered that the ports on the tube need to be taped shut or else you will be sporting a very gooey stinky wet spot on your clothing whenever you hold her.  We will be getting a training on all the ins and outs of her new tube (no pun intended) sometime later today.  Lucky for us, her nurse for today happens to be the  g-tube instructor.

We did have to place another IV this morning, frankly the others  just wore out.  D-10 solution and antibiotics cause a lot of wear and tear on IVs.  The same IV team nurses from Wednesday placed her new line and were extra sensitive to Lucy’s situation. Often times a little extra compassion can make all the difference in the world when you are stressed to the max!   Let’s just keep our fingers crossed and hope that this is the last line she will need for this visit!


Great news, we were able to get the results back from the GH torture studies that we did on Wednesday, everything came back normal, yippee!  I hope this puts the whole GH issue to rest.  We have yet to speak with Dr. Langdon directly, but the endocrine fellow came in and gave us the results last night.   Now I feel even better about not doing the last study, it would not have been necessary.

We are waiting to see the speech therapist, waiting on orders to start the Pedialyte, waiting to see what Lucy’s body will do with this fever, and waiting to see her metabolic doctor and geneticist sometime this afternoon.  I’ll update you later…

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