2012? No Problem...but when?

[GrammytoMany]

Nini, Just wanted to let you know that I'm saying a prayer for your Grand Princess. So sad a little one has to go through so much pain. I would definitely get another doctor before anything else is done...as soon as possible. For the doctor to say they should have waited after the fact
Sheila

 

[NiniMorris]

Quick update on my Grand Princess. We are headed back to hospital this morning. This will be her 4th time being put under in the past 8 days! They will be doing another cleaning of the wounds and then using a wound vac on both sides of her foot.

At present it looks like she will not loose her foot. I know I did not write earlier how bad it really was, but that was a very real concern last Friday. Of the two toes they are still worried about, one has started to show signs of pink tissue. Of course she still has no feeling in any of her toes due to possible nerve damage.

I am choosing to think positively and say that the wound vac will clear up the problems (along with the adult dose antibiotics she is on) and that both toes will soon 'pink up' and her feelings will come back and she will be the happy healthy overly active little girl she was before the surgery...soon.


Love you Princess Alyssa!

Nini

 

[DMGeurts]

I am sending prayers your way Nini! Let's pray for pink! I hope her surgery today will help and she will be on her way to mending. (((Hugs)))

D~

 

[cogero]

Nini your family has been in my prayers today.

Hope you get good news.

 

[blessedmom4]

Huge prayers coming your way for all of you. I think we all realized how bad it was when we read your description. I am so sorry she has to endure this!

 

[NiniMorris]

Again...thanks so much for the prayers!

We got some good news yesterday. The infection is gram negative...meaning that the infection was not foreign introduced and it came from her. (which rules out the doctor and/or hospital being responsible...although if they had started her on antibiotics sooner we could have avoided this whole mess!) There was no new 'ick' (that wonderful medical term the surgeon keeps using!) and the latest culture shows the 'ick' is responding to the new antibiotic.

One side of her foot has already closed enough that the bone is almost completely covered, although it still has a 'deficit' where the tissue still needs to grow. The other side is showing signs of improvement. Toes are showing no change.

They put the wound vac on both sides, and it is working away. Yesterday the Princess decided she need to put some stickers on the 'purse' they have to carry around...and the nurses gave her some Scooby Doo stickers...she, of course, is holding out for some Disney ones! LOL!

She is in an over all better mood.

I am in a much more positive mood about everything right now...but come Monday morning I will be terrified...we need to see a tremendous improvement to know it is working. This weekend will be the test!

Please keep her in your prayers. (I told her a whole bunch of people were praying for her...and she said to tell them all thank you!)

Nini

 

[NiniMorris]

Updates.....

First of all...Grand Princess is doing better. She had another great outcome yesterday. The foot is healing. One side has closed, but the bone is showing on the other side still. The toes are still questionable, but for the first time the surgeon said it looks positive that the foot will be saved! Not only that...she (Princess) was in a great mood leaving the hospital yesterday! Of course, having Mr D there was part of her mood change. They always play so good together. Seems that not having a babysitter was a good thing.

Since her Mommy can't take anymore time off work, it is imperative that Memaw get to go with them. Now she has decided that Mr D needs to go every time too!

*************

Disney update... Husband has decided he wants to go in November instead of September. Just as I had resigned myself to go in September and was ready to start making plans again...he changes HIS mind... He has been flip flopping back and forth more than I have! It really makes planning difficult... at this point I am going to just pretend i have every thing planned and ignore the whole problem. I will be spending the last few days before we go in front of the machines non stop!

The news that Test Track will definitely be closed and that Be Our Guest will probably NOT open in time for our September trip is part of his reasoning. The other is that he hates going in the heat. Partly because of me. I take some pretty powerful meds that make the heat a big issue for me. I have managed to deal with it pretty well so far, but there is always a risk.

The kids don't really care which time we go as long as we GO! LOL!


+++++++

And on a completely non Disney note...on Saturday we went garage sale-ing...sort of. We actually only went to one. But it had the mac daddy cutting table of all time! It had a previous life as a cutting table for Wally World int he fabric department of my local store. The lady I bought it from had gotten it from Wally World...her sister in law worked there and was able to get it.

It is 12 foot long and 4 foot wide. It takes up a good amount of real estate in my studio, but makes it look so much more professional! Now I just need to find time to get down there and finish cleaning and organizing so I can take some pictures...


Nini

 

[DMGeurts]

Glad to hear that the Grand Princess is doing better.

Sorry about the flip-flopping of plans... You'll get it figured out - you still have time. Tell him if he doesn't stop changing his mind - he'll have to do both dates. ROFL.

Awesome about the cutting table - we want to see pictures when you have time!

D~

 

[VBAndrea]

Nini, I saw your post on D's thread but absolutely wanted to come here to tell you I am keeping your family in my prayers. I will try my hardest to be better about checking in here. Your poor princess does not deserve to be going through all this.

 

[cogero]

Just adding my prayers for the grand princess and your entire family.

 

[NiniMorris]

Thanks....


My grand daughter is back on the 'we are afraid she is going to loose her foot' list again. All this time (over a month) we have been having a problem with what we thought was an infection. Her foot smelled like death. Finally the surgeon took a look at it and decided she needed to clean it out under anesthesia so we headed back to surgery.


Now we know that it was not the infection that was the problem (maybe) but the bone in her foot had died and her body was rejecting it. She is now without a major bone in her foot on the inside, and the two toes on the outside of her foot are still not looking good.

On Monday the surgeon said everything looked "perfect!" and today she had to remove the bone because it was dead. At this point I trust her even less than I did before, and I would not let my worst enemy send their mangy dog to her!

I have spoken with an attorney who said we 'may' have a claim, but we need to have a second opinion. I have a referral to the Shriner's Hospital in SC. I sort of 'bullied' my son into taking her for a second opinion...not to the Shriner's hospital, but to another local specialist.

We will see what happens after that tomorrow.

The more research I do on this, the worse I feel. Two weeks ago, the surgeon said (rather casually) that the Princess had suffered a 'mild' tachycardia ...and I now know this is a symptom; she had a lot of problems getting the pain under control after the initial surgery, which is also another symptom. The surgeon never did another x ray after the surgery, which would have shown the beginnings of the death of the bone. She allowed the 'infection' to go unchecked for over 2 weeks before putting her on an antibiotic.

I am amazed at how the surgeon lied to us...and acted like we wouldn't notice.

Sorry...but I am more than a bit depressed tonight. From what I can tell, the recovery may take more than a year...depending on what is decided on. Of course, this puts their Disney trip on hold...and doesn't make mine seem like it is going to happen either.


Nini

 

[cogero]

Nini many hugs and prayers to you all.

I am just astounded that this woman is practicing medicine. I think you should also file a claim with your state licensing board and department of health they will have to investigate it which will help you.

I am so angry on your behalf. Heck if you don't like the second opinion find a third one and bully your son it is what is best for the grand princess even if it is hard for us as parents.

 

[DMGeurts]

Chiara - I agree with you completely... I also think you need to file claims Nini.

I am so very sorry for all you are going through... Your poor grandprincess...

I don't think that Dr should be practicing medicine either - I know that she is human and may make mistakes - but this just doesn't seem like a mistake is seems like pure laziness, carelessness, and idiocy.

Much love and hugs coming your way... And you know you can always vent to us - we are here for you! (((Hugs)))

D~

 

[NiniMorris]

Sorry...no sleep Wednesday night and up at 5 made for a LOOOOOOOONG day!

They started the day at the pediatrician's office for a complete check up. They said her heart shows no signs of problems and the tachycardia that was noticed in surgery was more than likely because of the fact that she was in and out of surgery so much and not eating right. All blood tests were fine.

The second opinion doctor (SOD from now on) took a series of X Rays and saw the medical records from the surgeon (Dr Martin). He said, while there were some rare complications, nothing could have been done to prevent them or to do anything differently.

There are no other bones that give any appearance of issues. The bone that fell out is not the long bone...it is a small bone on the top of her foot. (there are actually three of them, she lost one) In 'stubborn' cases of club foot like hers...if this surgery had not worked, the next step would have been to go in and take that bone out and cast the foot to keep it straight.

Her body rejected this bone and got rid of it ... preventing a possible second surgery.

The bone she lost is not 'important' in walking or balance.

He said her toes looked pretty good. Her toe nail is still attached, meaning that they are getting a good blood supply. (the toenails are usually the first thing you loose when there is a problem) She may loos a small bit of tissue on the bottom of one of her toes, but both of her toes should recover nicely.

The SOD did give some insight as to why Dr Martin is not at CHOA... She used to be the head ortho surgeon there. She practically lived at the hospital. She had no private practice. After several years, she decided she wanted a private practice, but the hospital would not let her ... so after a few more months of fighting about it she left!

(it is a bit more complicated than that...but that is the readers digest version)

They did not get home until after 5 pm...

They are going to stay with Dr Martin. Alyssa likes her and is comfortable with her...I don't think Tasha is 100% convinced, but she is ok with it to an extent.

After Alyssa's procedure this morning, Dr Martin is going on vacation. She changed her flight so she could do her foot. Then the anesthesia guy is on vacation on Monday so they are doing it on Tuesday and Thursday next week, then back to M-W-F for the week after. She is flying back from her vacation those two days to do it....

The SOD knows Dr Martin well...she used to be his boss when he worked at CHOA. He said that if it was his child he would have Dr Martin do it.

Over all... I feel better...not great, but better.

Shawn and Tasha have a long list of questions and concerns that they will address with Dr Martin this morning....

 

[cogero]

I hope they can have the doctor be more forthcoming with information. Like I said on FB. I am angry she has not been giving Worst Case Scenarios.

My ped gives worst case scenarios in my office and explains infections and how they work every time I am there.

I will continue praying for the Grand Princess and you all. My heart is just so heavy that she has to go through this.

 

[VBAndrea]

I am really anti-law suit b/c I think people are sue-happy in today's world and a lot of physicians meaning to do well get sued unnecessarily. That being said, I think this doctor deserved some investigating and am so glad you got the princess in for a second opinion. I agree with Chiara as well -- the worse case scenario situation should ALWAYS be presented. Usually before a major surgery you sign that you are aware of all of the complications and infection is always one and loss of the limb should be on there as well.

I am grateful to hear the removed bone isn't crucial, grateful to hear the toenails are still intact, and likewise very happy to hear that all that's going are on indeed complications and not neglect on the doctor's behalf.

I will be keeping your family in my prayers for a much smoother recovery from here on out. And a pain free princess that can run around Disney once this is all taken care of.

 

[Lidian]

Wow, I try to finish up school and you have so much going on! So sorry that you and your family are enduring such issues. Your family are in my prayers (and have been). I hope she recovers well and quickly.

 

[NiniMorris]

I'm going to attempt to get this PTR back on track...without the medical drama for a while!


My Disney hating daughter and her wonderful husband joined us on our last trip to Disney...of course, they waited until about 30 days out to decide to go.

Coming up soon is their 5th wedding anniversary. They were thinking of Cancun or Boston for their anniversary trip. (on their honeymoon he was only 3 days after his last chemo treatment and was sick, sick, SICK the whole time so they felt they needed a do over!)

They had budgeted $1500 for the trip. They were having problems fitting in a weekend trip with their budget... so they laughed when I suggested Disney. After a couple of days to think about it...they are going to Disney for their anniversary....did I mention it is less than 3 weeks away! They are going over Memorial Day Weekend...crazy busy time to visit!

Staying at POFQ, three days park hopper and dining plan. Their favorite meal last year was Jiko...so that was the FIRST thing they booked. They are working on the rest of their dining plans...long distance since they are visiting his parents this weekend without internet...so they are doing it over the phone with me...

It is almost as much fun as planning my own trip!



Nini


PS... I am hoping they bring me back a grand child as a souvenir!

 

[DMGeurts]

Nini - I am so glad you were able to get a second opinion. Even though it wasn't the outcome your were hoping for - at least you were able to get some answers. I think I would be in the mind frame, that I would rather have a new Dr. - just because I don't think I would ever be able to trust that Dr. again. I pray your granprincess heals quickly and she can get back to living a normal life. (((Hugs for everyone)))

As for the trip planning - HOW FUN!!! Hmmm... The girls and I may need to try Jiko next time???

D~

 

[cogero]

We tried Jiko for the first time last trip and I have to say it was absolutely fabulous.

I would definately do it again.