Ready for 6 Weeks of Treatment!

So, we got back home on Wednesday and what a relief it was to sleep in our own beds! So Emily is doing tigecycline and imipenem by IV and oral clarithromycin to treat the m. abscessus. Last night was the first time she was on all three antibiotics and let's just say they have been rough on her stomach! Feel bad for the girl when she's like that! Started using the zofran before IVs this morning and that seemed to do the trick as she has felt quite better today.
So treating the m. abscessus is hard on a 10 year old. She is hooked up to IVs for 5 hours a day total and we are doing chest PT 4 times a day for 6 weeks. Not to mention all the regular meds and some extra vitamins here and there. Not much time in the day for fun when all of that is said and done. But, Em has a remarkable spirit and always seems to find the positive in things. If we all had her attitude and sense of faith and hope...well, let's just say the world would be a better place! Hopefully, this is the last time we will have to treat the m. abscessus!

PICC Line #6

So here, it is the last day of January 2011 (actually it is February 1st now). Here we are back at the Hill. The ol' m.abscessus has reared its head again, and Emily has officially had her 6th PICC line placed. She did well today....got a little upset with the IV to sedate to place the PICC, but over all, she showed, once again, what a tough and brave girl she is. (Mom won't lie though....my heart hurts every time I see her get upset with all of this!) So, there's a national shortage with the amikacin right now, so we are trying a new drug, tigecycline (along with imipenem and clarythramycin). Hoping this does the trick.....it's a six week battle to hopefully get rid of it for good. So many unknowns still with this bacterium.
I hope and pray this is the last PICC she has to do for a long time....three times in a year is a bit much, although I know many CFers endure much worse, so I guess we should just thank our lucky stars that we have only had 6 PICC lines. I guess in the big scheme of things, not so bad...that's an average of once a year since she was diagnosed six years ago. The hard thing about the m.abscessus is that it is a six week treatment, so it's double the time for most other bacteria we have treated.
Em's spirits are good. She loves to joke with and talk to the nurses and other staff. I love her spirit! Even when she knows her favorite things like playing soccer and horseback riding are on hold, she doesn't let it get her down! I love this girl!

Not Quite So Long Lost (getting better)

So, we have made it through the holidays and stayed fairly healthy, until recently. Emily had her check up on December 7 and we recently found out the dreaded mycobacteria abscessus is back! Why oh, why? We are waiting for sensitivity testing right now--to find out which drugs will be an option to treat this once again. It is a hard regimen with three antibiotics, usually a couple IV and one oral...and the last time we did this for six weeks. Em was actually hooked up to IVs for 4 1/2 hours a day! So, for now we wait--Em's actually feeling bad this weekend, been real congested and running a fever. Calling for snow on Monday, so looks like we might have a long weekend for her to rest up.

Long Lost Blogger

Well I haven't exactly been a very good blogger in the past months. We survived the last rounds of IVs in February and had a healthy and fun summer. Emily participated in a research study on hypertonic saline at the CF Center at UNC--it was a great opportunity to "give back", and we learned a lot in the process. Near the end of the study they did cultures and we discovered that the ugly pseudomonas had reared its ugly head once again! So, Emily started Tobi for the first time. Now, several weeks later, her cultures have come back clean! Yay! But, don't get too happy, too fast.....she had trouble hearing out of her right ear. Immediately we all thought it was from the antibiotics, but as things should turn out, thankfully, the reason was due to fluid....so today, Emily had a tube placed in her left ear. It was an easy task compared to some of the things she has endured, but so thankful we could restore her hearing. And now, we face winter --head on! Our goal, and our prayer is to stay healthy! No hospitals, no IVs! Let's see if we can do it!

IVs Round Two

Well, we finished the IVs for the pseudomonas, only to find out that Emily cultured mycobacteria abscessus too! It took several weeks to get the susceptibility testing completed and so we have started IVs again for this one--we are doing amikacin, cefotoxin, and clarithromycin...this is a six week treatment...then our plan is no more IVs for a looonnnggg time. Emily was sick to her stomach the first day or two, but then things have settled down. We leave the hospital today! Yay!
We took the first picc out two days before Thanksgiving so Em could be a kid for a few weeks before we had to do this again. And so glad we did as we were able to go to Virginia for Christmas and there was two feet of snow to play in. She had a blast, as did her brothers and cousins! It was a wonderful Christmas to be with family and have a white Christmas (not something we get very often in NC). We also enjoyed having Donnie home from college for a few weeks...Emily misses him terribly! Well, that's all for now, will post some pics soon, need to download from the camera...I'm a little behind with this!

Almost Three Years

Well, we were one month shy of being off of IV antibiotics for three whole years! Unfortunately, we went for a check up at Chapel Hill last Tuesday and found out by Friday that Emily had cultured pseudomonas. This was the first time she cultured this so it was a little overwhelming. Anyway, we came in and did a bronchoscopy yesterday and they put in a picc line. Emily has been the bravest girl ever, once again. When they changed the tape on her picc line today she didn't even cry--she said "that's the first time I didn't cry!" I was like "so true". Then she proceeded to tell me a memory she had from her first hospitalization when she was four--"mom, remember when the lady came in to change my tape and I locked myself in the bathroom." I had forgotten all about this, but it sure brought a good laugh for us this afternoon.
We hope to be home by Friday if all goes well. We will do IVs at home for three weeks. I will try to be a better blogger and update like I should--I totally missed some important milestones since my last post, like sending my oldest off to college. Will do a better update when things get settled.

Late Update on Great Strides

Well, I am a little late getting an update on the Great Strides walk in Monroe. This is the second year for this walk (they used to have it here about 10 years ago). We more than tripled our original goal of $9,000--I was amazed at what all of our teams accomplished. It was fun to have several new teams this year. Hope we grow again next year! The weather was perfect and everyone had a great time! I've included some pictures of the day!

Emily's Team 2009!

Emily and her second grade teacher, Ms. Marks,

and her first grade teacher, Mrs. Malley (with hubby)

Emily and "her sign"