Finally got an answer re: rash

                                         Pics from 11/22 - this is what is all over her body.


Well, thank goodness!!! We have an answer to the rash.  It's actually called Red Man Syndrome and is caused by a drug eruption thanks to the Vancomycin (a very strong antibiotic) that was impregnated into the bone graph that they used in the spinal fusion.  The reason it got worse before finally starting to clear up tonight was because as the bone graph fused to the spine, the Vancomycin got more into her blood stream.  We started the Benadryl again and it seems to be working this time! There are no other treatment options.  It just has to run it's course and that could be weeks.  It has started to clear up on her stomach/chest where it first started so she will most likely be discharged tomorrow (Wed).  We will get to be home for Thanksgiving! I'm anxious to be home and excited to put up my Christmas tree this weekend (even if there won't be any presents under it this year). 

Thank you for all the Facebook support! It has helped keep me going! And I want to especially thank my dear friend Amanda! She calls everyday to check on us, has visited us 4 times, sat with Dakotah Sunday so I could go home and get clean clothes, and brought me dinner twice! I am so grateful for her friendship!!!!

XO

Where is this rash coming from????

Well, Dakotah is on day 3 of a really bad rash and today it has gotten a little worse.  It's all over her torso (front and back) and groin area moving down her thighs a little.  It looks like a really bad sunburn is the best way to describe it.  Day 1 the doctors/nurses thought maybe she was having an allergic reaction to the morphine.  Changed to Dilodid.  Rash stayed...got a little worse.  Then they thought maybe it was the antibiotic...changed that. Rash stayed....got a little worse. Changed her pain meds again.  Rash stayed...got a little worse.  I know she's not allergic to laundry products because I've never had that problem and it's not all over her body.  It is also warm to the touch and the doctor said that is indicative to an infection.  Ortho dr. says the incision looks great and I agree with him so we don't think it's that.  They did a throat culture (to test for strep), chest xray, and drew blood today.  So far, first strep test was negative (but waiting on cultured one still), chest xray good - no pneumonia.  Nothing apparent popped up in her labs. 

It's really strange - I've never seen her have this kind of rash.  Please pray that we get an answer soon so that it can be treated and start clearing up.  I won't let them send her home from hospital until it's going away or we have an answer and are treating it.  Benadryl wasn't even touching it.  They did say her throat was really red this a.m. so they started her on Z-Pack (Zithromax).  She is resting very comfortably and the rash doesn't seem to be bothering her (thank God).  I'm hoping by tomorrow we see some improvement. 

Since I'm not a big college football fan, Netflix has become my best friend today!!!!

Surgery was a success!!!

I am happy to be posting that Dakotah's surgery was very successful and so far she is recovering very well.  she is still in quite a bit of pain and has to be on regular pain medication but that is to be expected.  She got moved today from the Special Care Unit to the regular ortho floor.  The room is much smaller, but cozier and her bed is closer to the t.v. so that is great for her.  She also got her new wheelchair today and spent an hour in it. 

We will be here (Arnold Palmer Hospital in Orlando) until at least Sunday, 11/21.  The dr. hasn't started talking about release yet.  She does still have the drain and obviously that will have to be out.  She got her cath out today and is on her feeding pump for nutrition/hydration (no more IV)!!! This evening she even smiled at me and made some sounds (this is her talking)!!! I was sooo excited to see that smile!

I am convinced that all those thoughts and prayers from around the country are what have caused her to do so well.  I came into this surgery not knowing what to really expect.  Of course I thought about the bad things, but didn't necessarily expect them.  However, I do have to say that she's done MUCH better than what I expectations I did have.  She's a little fighter that girl!!!

Thank you for your prayers & support! Please keep them coming.  Also, our financial need for Dollar 4 Dakotah still exists so please pass along our blog and the information for that if you can!

XO

Only 11 days before surgery

Well, there are only 11 days until Dakotah's surgery.  Every day adds a little more anxiety for me.  I have started setting stuff out that I need to pack since we will be at Arnold Palmer Hospital in Orlando for a minimum of 5 days.  I am taking her angel bear that I bought when she was 2 months old and had brain surgery.  I've also packed comfy pjs for me.  I'm definitely going to remember to take my own pillow and comforter.  I will take Dakotah's pink/purple quilt that her grandma made for her to add some color and a touch of specialness to her bed.  Its those little things that will help make the stay a little more bearable.  I also have a dear friend, Amanda, who is putting together a food basket for me of snacks so I don't have to leave Dakotah's room very often. 

Thank you all for your continued support and prayers.  It does mean a lot and I am so overwhelmingly touched by the bonds that I have formed with people that have never even met us (my Twitter friends) XO

Thanksgiving is this month - Here are some thoughts on my thankfulness

I am thankful that the little girl who doctors said would not live past 1 is now about to turn 13 years old in February. I am so thankful for the smile that I get from my daughter that is her way of saying, "I love you". She has a rare syndrome and cannot talk. I may never hear those words or hear her call me mommy, but I am thankful that she has a special way of communicating to me that she loves me and knows I'm her mommy. I am thankful that she has a pediatrician that listens to me, includes me when making decisions about her medical care, and trusts me to research things that she needs. I am thankful that she can cry to let me know she's in pain and laugh to let me know when she's happy. I am thankful that I have had the strength to raise her alone. I am thankful that she has my eyes. I am thankful that she has been relatively healthy so far. I am thankful that I can give her endless kisses and she can't tell me to stop :-)


Ellen, as strange as some people may view this, I am thankful that I was chosen, no, I was BLESSED to be her mom. She has taught me not to take a single thing for granted. She has taught her older brother to be appreciative of his ability to walk, run, talk, drive a car, have a girlfriend - all the things that she won't be able to do. I AM THANKFUL FOR MY DAUGHTER, DAKOTAH, and I am thankful to her for making me a better person!!!!!