This was a BUSY day.  It started with Meaghan needing an emergency dressing change.  She has very sensitive skin and the replacement that was put on Friday gave her a terrible rash.  And, it was falling off.  I bragged too hard about the way she handled the change on Friday.  Today was positively awful.  There was screaming and kicking and crying, it took forever.  The nurse who did the dressing was very sweet, she even gave Meaghan a small gift to try to make things better.  Unfortunately, Meaghan has only two speeds and she was stuck in ATTITUDE.  Meaghan has been through SO much, I understand that she is just fed up, I really do.  Then we had an appointment at Hopkins.  Meaghan is maintaining her weight to spite all the upset and loss of appetite.  That is terrific news!  We are going to gradually work her back up to her regular overnight tube feedings to see if we can't get her to gain some weight again.  There's more good news, the PICC line came out today, so no more IV antibiotic.  That means, hopefully Meaghan's GI system gets a break and I get a better nights sleep!  The flip side of that though is that Meaghan had to go through the removal of the brand new dressing.  Even though we dropped the IV, the 3 oral antibiotics stay the same.  We are going to have another CT scan in a few weeks and the doc said that we will have another bronc.  The timing depends on what they see in the scan.  We may get the benefit of scheduling our next "sleep over".  This will be what we can expect for the next 10-11 months.  She looks great but the infection that has made her sick is very serious.  We have to wait a few more weeks to regulate Meaghan's schedule before she can do all her regular activities or go back to school.  For the first time in all the past weeks I feel a little bit of hope.  With a lot of love and patience Meaghan will be well again.

These are Meaghan's rewards for all the "stuff" she endured today.  Baby Meaghan has been around a long time, the rest is new.  It was a hard day!