Yet another surgery....I feel so bad for my sweet girl

Yesterday was another post-op appt with Dakotah's ortho surgeon (he did her spine surgery).  Her rods still look WONDERFUL and he is very, very pleased with the progress of the healing of her incision. 

However, now she has to have surgery on her right foot.  As you can see in the pictures, she is not able to put the bottom of her foot flat on a surface like she can her left foot.  You can clearly see the deformity.  This hasn't always been this way.  In 2007, it had progressed enough to warrant tendon surgery at Shriner's Hospital (in Tampa).  They did a tendon splat.  You can see the scar in one of the pictures.  Well, now she is far past just tendon surgery.  The surgeon is going to do a triple arthodesis.  This involves fusing the 3 main joints in the hindfoot (subtalar joint, talo-navicular joint, and calcaneo-cuboid joint).  He will also do a posterior tendon tibialis lengthening.  It's a 2 hour surgery.  She'll be in the hospital (Arnold Palmer in Orlando) for 2-3 days. Let's hope and pray she doesn't pull any stunts like the last time *wink, wink*.  She will be in cast for 6-8 weeks - that should add even more fun to lifting her.  Sorry - I don't mean to sound bitter - I know there are children (and adults) that have to endure far more than Dakotah. 

I am hoping for 3/15 surgery date bc we will be on our Spring Break and I won't miss time from work (bar any complications).  If not, then it will be 3/22.  He's pretty full on the 15th but Dakotah has a way with some of the nurses who then have a way with the surgery scheduler so hopefully we'll get the 15th.  I will update once I have a date.

I want everyone to know that this surgery is necessary.  If it's not done, her foot will continue to rotate and it will affect her being able to spend time in her stander.  In fact, already she is not allowed to be in the stander (it's a piece of equipment that has a lot of health benefits for her - see list below).  I don't care what her foot looks like - no one even notices.  I don't care that she is unable to get her foot into cute shoes or that I have to get on contortionist positions to cut her toenails (smile) - none of those things matter to me.  It's her getting back in her stander.  Also, I have read quite a bit online about this type of deformity causing pain and since she can't tell me, she could very well be in pain from this.  There are times when she lifts her foot/leg up and down making uncomfortable sounds, so who knows.

Benefits of being in the stander: 
Improved bowel and bladder function, enhanced respiratory function, reduction of pressure ulcers, prevention of lower extremity contractures, lower extremity weight bearing improves and maintains bone density, Improvement of circulation, strengthening of cardiovascular system, and facilitates development of appropriate alignment of the spine, hips, knees and ankles.

                                                                               


Left foot ("normal")



Right foot (rear view)

Right foot-knee all the way over to be able to get it this flat on surface.

In the home stretch

   Dakotah is doing wonderfully!!!! She is tolerating so much more time in her chair.  Her most recent post-op appt was a good one.  Her pre-op curve measured 73 degrees.  Her post-op measured 29 degrees.  AMAZING!!! The other great thing - and even more important than the numbers - is that her trunk is now centered over her pelvis.  The doctor said this is the main goal of the surgery and it helps her hips.  She is also not drooling like she used to (since she's sitting up straight and her head is up all the time now) and doesn't have to wear bibs anymore.

She is back in school and I am finally back to work.  However, we still have a ways to go before we are out of the woods financially.  I did not have any income in the month of December so the county I work for billed me for all my insurance premiums (health, dental).  I now have to pay those back this month.  My paycheck on 1/15 will be significantly less than usual because I still have some leave w/o pay on it and then they are taking 1 of the 2 payments for my health insurance premiums ($250).  I will have to pay the other $250 out of my check on the 30th. 

I have managed to be able to make a van payment every 30 days so they do not take my wheelchair van; however I still owe for November, December and then January will be due the 30th.  This is the main thing that I really need help with.  I just can't lose my van or I will have no way of getting Dakotah to school and to all her doctor's appointments. 

Eventually I will get the utility bills caught up, but in the meantime I continue to rob Peter to pay Paul - when I do get some money.  Keeping groceries in the house also continues to be struggle.

I still have the Dollar 4 Dakotah paypal account set up and still welcome (and need) any gifts that anyone can give.  $1 is all it takes.  If enough people do this and pass it along to others, those dollars add up and can possibly pay my electric bill or a van payment.  The directions for giving can be found on the right-hand side of my blog. 

I appreciate everything everyone has done for us so far to help.  I know that without your prayers and support we could've ended up homeless again.  THANK YOU, THANK YOU, THANK YOU!!!!!!

Happy New Year to you all!!!!!!

The final stretch - Please HELP!!!

Well, Dakotah is recovering very well from her surgery.  Her surgeon was very pleased with the rods/wiring when she had her xray at her last post-op appt.  She is now tolerating 2 consecutive hours in her wheelchair which is an improvement.  The first week she was only tolerating about 30 minutes.  Please continue to pray for her as her recovery is not over yet.

The month of December is the hardest for us financially.  I will not be receiving any regular paychecks this month.  So far we are surviving but it isn't w/o sacrifice.  We have our tree up, but there won't be any presents under it again this year.  I'm okay with that because my present is of course that Dakotah made it through her surgery.  But I do have an 18 year old that even though he says he understands (and I know he does), it still breaks my heart that I can't even afford to buy him stocking stuffers. 

I am pleading with anyone reading this to please give $1 to Dollar 4 Dakotah and pass this along to all your friends, family, and anyone you can.  It can be done via paypal.  If you send the $1 as a gift, there isn't a fee to you or to Dakotah.  The email address to use is dollar4dakotah@gmail.com   I desperately need to raise about $600 to get us through this month - this is just for bills - not for Christmas.  I will be back at work in January because Dakotah will be able to return to school.  I am a single parent so I am the only one to be home with her during her recovery (this is why I am not getting paid this month). 

I thank you so much for any help you can give us.  If you aren't able to give, can you please just pass along our need?

Jen

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