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Tuesday, September 14, 2010

Livid



Livid = a perfectly round, white, raised area of skin on Ellie's ankle = pressure sore.
Livid = me after hearing that, once again, Dr. Webster did not put enough padding over the bones on Ellie's ankle.

Now, my baby, is the proud owner of a matching set of pressure sores. One for each ankle.

I feel sick as I write this. GRRRRRRRRRR

Lessons, what are the lessons? What can you learn from my lameness? Oh, here's a few that also fall under the welcome to my world category:

#1. NEVER allow one parent to go alone to a casting procedure no matter how many other doctors appointments you are balancing with work. I went alone the first time and Dave took Ellie alone to the second. There is just no way to advocate for your kid when they are freaking out about being casted such that you are entertaining them so they stay still and so that they are less freaked out, while in the meantime the doctors are telling jokes to one another as they forget to pad my daughter's freaking ankle!!

#2. NEVER forget lesson #1.

#3. Just because a doctor is good in the past doesn't mean they will stay that way. I am so dissappointed.

#4. It takes roughly 6 months for a pressure sore to heal - we learned that from the first one - and I think I am being generous there as it is still not totally healed.

#5. Something about never losing one's vigilance and other things I am saying in my head right now as my conscience gives me a substantial beating.

#6. Maybe if a doctor screws up once you should fire them and find someone who knows how to properly pad a cast! Maybe something about forgetting about doctors altogether.... not sure if that is realistic - but I am really mad right now.

After Action Effects:

- Further muscle atrophy - we are 6 months and counting in now - looking at a year total
- Loss of faith in doctor
- Massive mama guilt
- Continued dusting of unused gait trainers
- Ellie losing her excitement over using said gait trainer to make her way around the house on her own speed.
- Potential decrease in bone density for lack of weight baring


Above is a picture of the the pressure sore she got the one time we tried serial casting. It doesn't look much different today.

I am going to take her to as many hyperbaric O2 treatments I can afford (at $200 a pop that means not all that many) to see if that will help. Also posted is a picture of Ellie in her gait trainer, months and months ago. I need everyone to remember that she used to be able to do that. I need to remember that we used help her practice walking in her gait trainer 4-5 times per week. I need to remember we even brought it with us to my mom's one time to show them how well she was doing with her walking. That during that same visit she laughed and walked in her "Pony" for hugs. Just this Sunday Dave, Ellie and I were at the mall early in the morning and Dave and I were commenting on how quiet it was and how smooth the floor is and how we would have to take Ellie there to practice walking as soon as her cast was off. So much for that plan.

Poor Ellie.

I feel like the worst parent in the world.

I am so overwhelmed right now.

10 comments:

wilken63 said...

Kathryn, you have strength, love, determination, devotion, unwavering commitment to what is in the best interest for ellie.
Because there are people who fail you and her in this journey you are on does not make you for one second "the worst parent in the world"..
It would be a parent who does not recognize situations, or turns a blind eye to them that their love and commitment is called into question.
NEVER doubt yourself...i love you

TherExtras said...

So sorry, Kathryn. The pressure sore is rotten/awful but let a few people give you some supportive strokes here.

I esp. support #6 - or the idea of a 2nd opinion/fresh look from someone else.

Options you might ask about...can she have a pair of (removeable) braces (as in AFOs)? Can those braces be "blown-out" over the pressure points (malleoli). (ie heated and pushed out) If the braces fit otherwise and the pressure is off (OFF) the 'sore' she should be able to wear them. Consider a standing program (for weight bearing) over use of gait trainer for a while.

Please affirm that the HBOT is for wound healing and not brain healing - if that is what you meant. For wound healing, there could be insurance coverage.

Sending comforting intent.
Barbara

Kathryn said...

Wilke63 - Thank you. ;-)


Barbara, They didn't offer to do the Malleoli blow out thing but I will ask them - that is really helpful! She does have AFO's but after the last pressure sore Dr. W. told us no standing until it's gone - well still not gone. And she uses a stander at school too but that was also nixed due to the sore. Very frustrating as all avenues seem to be closing. That is a good point on the HBOT. As we would be using it for wound healing in this case. Maybe they will cover it - wouldn't that be a nice thing! Dave got it covered when he used it to save his finger which he cut badly so maybe they will cover this. Thanks - very comforting indeed! ;-)

Peypeyoh said...

Let me do some more research on pressure sores darling and email me or chat me more about it. I do know a "little bit" ;-) about wound healing, I'm sorry my own life's been this crazy that I didn't notice you alls were having a problem with this. love ya, as always. x

Catherine said...

oh I hate this sort of thing - when this happens to BB, I just can't help calculating the lifelong cost, and it makes me so . . . ugh, try and try . . . and then think of all the kids getting even more problematic medical care than these kids of ours, terrible.

Katy said...

I'm so sorry this happened. I'm also grateful to you for sharing your wisdome. So many parents benefit from your journey.

Anonymous said...

Kathryn, so sorry for you and Ellie and this.
Not your fault, fault of the stupido doctors.
Have you shown them this post? You MUST.
They have to know the consequences of their actions.
Prayers for a speedy healing.

Anonymous said...

Hi, I hope the problem of pressure sores is now a history for Your beautiful daughter. Just for the interest of others: I found padding of this area very difficult, but a firm sponge (like the one for dish-washing) if You cut a cone shape hole for the ankle bone does the trick very nicely. I also heartily recommend negative pressure wound healin if you fight with a pressure sore that is difficult to treat - vacutherapy works wonders!

Kathryn said...

Dear Anon,

THANK YOU so much for this information! Her pressure sores did NOT heal for 18 or more MONTHS!! ugh. we are only revisiting botox and serial casting now with a new doctor. So your timing is phenomenal. Thank you so much. I had never heard of these solutions so this is very, very helpful.
Kathryn

Anonymous said...

As for the negative pressure wound healing several systems are available on the market in Europe these are - Vivano from Hartmann here You have a link to the presentation in English http://www.youtube.com/watch?v=WCJs168IDLo and RENASYS from Smith&Nephew http://www.youtube.com/watch?v=1BGmElljZA0 We have sucessfully used Vivavo for treating a nasty wound my father-in-law suffered from. If I can be of any help please write aharper@wp.pl