A few set backs...

Wow, what a crazy emotional roller coaster these last couple weeks have been!!!  I left off with my last blog the night before Anya's surgery.  According to Dr. Dobbs, Anya did really well during surgery and he was able to do the soft tissue releases that was necessary.  We had to stay overnight so Anya could be observed and make sure she did well with the casting.  From the start her left foot was looking great.  Great color 
and no swelling.  The right foot was quite the opposite.  The foot was very swollen and tinged purple.  We (Myself, Anya's dad and step-mom), continually brought our concerns to the nurses, the nurse practitioner, and to Dr. Dobbs orthopedic  team.  We were continually 

Anya wanted sissy to sleep with her

told to elevate and keep cold packs around the cast.  The swelling we were told was completely normal and that there have been times when it swells so quickly that blisters develop.  We continually checked the capillary refill as did everyone else.  We were not happy with the refill time as it was more than 2 seconds...it was closer to 3 and Anya's toes did not appear to be improving as they were still very swollen and a little more purple than before.  All the while Anya was a trooper, full of smiles and playing.  Poor thing was so exhausted though by the end of the day.  She was afraid to go to sleep.  We were figuring it was because when she went to sleep that morning, she woke up with casts on her legs and she woke up without anyone familiar being there.  We kept reassuring her, and asking if she was ok.  Later on that day, she and I were having some one on one time and she came up with baby thumb and mommy thumb.  She started talking about how baby thumb was feeling, and wanted mommy thumb to respond back to her.  She said baby thumb was scared to sleep, and mommy thumb reassured her that we were all there for her, that she would not be left alone, that when she went to sleep and woke up again one of us would be there.  Later on Daddy came in and she did the same with him with her baby thumb and Daddy thumb and wanting his reassurance as well.  God was there with us, working in us loving on Anya, each of us gracefully giving each other time with Anya....loving on her.  We each of us communicated well and showed consideration to the other.  They still had a hotel room, so they offered to go ahead and go back there Tuesday night to allow me to stay overnight with Anya.

  On Wednesday the ortho team came in again at 5:30 am....Anya was so tired from the day before that she didn't even wake when they came in.  Beth, a woman on the ortho team seemed a little concerned about Anya's feet and had taken pics and came back about 30 minutes later saying Dr. Dobbs wanted Anya's right cast to be loosened up a little. They brought a tool in to separate and emphasized again to keep elevating the cast and keeping the cold packs around the cast.  Anya's Dad and @--> were not able to get there that early for their first visit, so I made sure that the ortho team would make their way back around as I knew we all still were not happy with how Anya's foot was looking.  Especially since we had been making sure that Anya's feet stayed elevated with the cold packs around the casts.  We saw someone with the ortho team at least 3 times that morning and each time they said that things were fine.  So we trusted in that.

We also saw Dr. Traxel, Anya's urologist.  She came by Anya's room to go over the results of the urodynamics and the ultrasound from Monday.  She said unfortunately, increasing her ditropan  (helps the bladder walls to relax) didn't improve the amount of pressure/strain the bladder is under.  Her suggestion is to increase her meds some more and come back in a month to do another urodynamic on the bladder to see if there's improvement.  If there is great, we can continue on that.  However, she is not too optimistic as the increase that we had done in Sept. didn't yield very positive results.  So, she gave us some options and things to think about as to what to expect in the next few years with Anya urologically.  The less invasive next option would be to do botox injections into the bladder wall. This would help the wall of the bladder to become more stretchy so there is less pressure/strain and of course that means less risk of reflux.  Going this route also means that she most likely would not have to take the ditropan anymore as the botox would be doing what the meds were supposed to.  A couple of downsides to this is that Anya would have to be put under anesthesia each time, and the length of time that the injections would be effective is anywhere between 6-12 months.  She said each child is different so it's hard to say at first how frequently we'd have to go.  In addition we'd have to go back up a month after the injection to have another urodynamic done on the bladder to see if the injections are working. That would only have to be down the first couple of times once it becomes established that the injections are working.  Again, every child is different in how they respond so there is no guarantee that this option would work.  A few positives is again it's a lot less invasive, it's considered out patient so it's a 1 day trip, and it's painless.  Also, there has been no indications of any negative side effects of the botox injects urologically. Granted Dr. Traxel said, that this is a relatively new treatment and has been done in the last 10 years, so there's not a lot of long term research.    The third option if the botox injections are not effective, is the more invasive one.  It's not something that would be considered til Anya is a little bit older more like 1st or 2nd grade.  It would be a bladder augmentation with a Mitrofanoff.  Basically, with the bladder augmentation the bladder would be cut open so that it's like a 'V' shape and a rectangular portion of the intestines would be cut out and sewn on top of the bladder.  This would make the top part of the bladder nice and stretchy, but would take time to heal.  At the same time part of the appendix would be removed as it make a natural 'straw' to make a kind of tunnel between the bladder and the skin of the belly.  This procedure is called a Mitrofanoff.  The opening on the skin of the belly many times is created in the folds of the belly button and this small opening is called a stoma.  Dr. Traxel said this particular stoma is usually flush with the skin and does not protrude and is often as small as a straw opening.  This opening would be used for Anya to be able to self-catheterize herself and be able to gain greater independence and have less limitations.  The healing process is quite involved though as once after surgery a catheter would have to remain in the Mitrofanoff opening and a suprapubic tube will be inserted as well to help keep the bladder empty as the augmentation part heals.  This part can take anywhere between weeks to 3 months in which these tubes would have to be left in.  Also, because part of the intestines is being used on the bladder, the intestines naturally produce mucous.  So the bladder will have to be daily irrigated to flush out that mucous. If this is not done there is increased risk of infections, stones or the catheter being plugged up.  Also, long term inflammation has shown (after 20-30 years) higher risk for bladder cancer.  Again, that is with those who did not maintain good self-care.  Dr. Traxel said that it would be expected that Anya would be in the hospital for at a minimum a week if there's no complications. So, on top of all the concern we were already experiencing with Anya's right foot, we have all this piled on top.  It was a lot to take in, and it's one of those things that we are going to have to just take one day at a time, continue to pray for the best results, and trusting in Our Mighty God that no matter what:  "For He knows the plans He has for her,” “plans to prosper her and not to harm her, plans to give her hope and a future."  

 

We were able to leave at about 12:30, and the ride home was uneventful.  I didn't start to become extremely concerned about Anya's right toes until Thurs early afternoon.  During all this time I had been continually updating Anya's dad and @--> via text and with pictures.  By the afternoon Anya's toes had become very purple.  I had her foot elevated above her heart the whole day but had only one ice pack on the cast.  I added two more and had her lay flat on her back and tried to move the positions of her leg while keeping above her heart.  I called  Dr. Dobb's medical assistant, but there was no answer so left a message.  I emailed Dr. Dobbs and sent pics of how Anya had been positioned with pics of Anya's toes and a two videos of the capillary refill which was 3-5 seconds. I emailed him again about an hour and a half later since I had not heard from him and showed him an updated pic of Anya's toes and there was some improvement but the toes themselves were still quite purple.  I called the Medical Assistants number again and took down the number for the orthopedic doctor on call and spoke to a nurse  I explained what was going on that Anya's foot has been elevated above her heart all day and was all night, and cold pack are around her cast, but her toes are still very purple with little to no improvement.  She said the on call doctor would call me soon.  During this time I sent Anya's Dad and @--> the email I sent to Dr.Dobbs and the updated pic, I let them know I was waiting for the on call doctor. They of course was also freaking out.  I was so very frazzled and anxious.  I have a very hard time focusing on anything else except for that task of trying to communicate with the dr's and seeing to Anya.  I received the call from the on call doctor within about 20 minutes and explained everything.  He also explained that the swelling was normal, and that if there was improvement to keep doing what I was doing, and to wait for Dr. Dobbs to respond back.  He said do not take her to the er as they do not deal with specialized cases like Anya's with the pediatric side of things.  Shortly after his call I got an email from Dr. Dobbs: 

I agree that it does look better overall.  From the picture the big toe looks the worst to me.  Please send me an updated picture and keep up the elevation.  If things don’t look better you can come in tomorrow and we can loosen the cast some more.

I think with time we are going to be fine but keep me posted with pictures.

Thanks 

Matthew Dobbs, MD

I sent him another email again expressing my concerns and possibly going to the er here and he replies:  Though pictures on a perfect assessment the toes look fine still to me.  I would keep watching this and send me pictures periodically as needed.  Keep elevated and change positions to see if different positions are better.  I would be concerned that someone local will not be able to help much except for taking the cast off which we want to avoid if possible. Just keep me posted and let me know what you are comfortable with.  I’m fine with how the toes look at this stage.
Thanks

 Matthew Dobbs, MD

I was still very worried, as nothing really seems resolved. I'm concerned that he can't really see how bad her toes are getting in the pictures.  I let him know that Anya will be with her dad and step-mom over the weekend and will make sure they get in touch with him Friday and with more pics first thing in the morning.  Anya is still scared to go to sleep by herself and she want's her sissy Tory to sleep with her....  

Friday morning comes along and Anya's toes still look bad.  I leave for work at 7 am with Tory and Anya, keeping her foot elevated in the car along the way.  I convey to @--> that she needs to get in touch with Dr. Dobbs that Anya's foot is unchanged and it's possible that Anya will need to go back up to St. Louis.  That she will need to keep Dr. Dobbs updated with pics and that he's really good to respond back within an hour or two.  That morning @--> kept me posted with pics and called a couple times needing the number to Dr. Dobbs medical assistant and to let me know what was going on with Anya's toes.   I get a call from Dr. Dobbs himself around 11:30 telling me that Anya needs to be brought up to St. Louis that day and the top part of her cast needs to be taken off. I explain that Anya is with her step-mom right now and she would have to take the top part off.  He said it needs to come off now and wants her up there in St. Louis right away. @--> Then calls and said that Dr. Dobbs walked her through it and she basically just tore the top part of the cast off.  Dr.Dobbs asked her if the color was improving with it off in which @--> said no, that everything was still the same.  He said to her also that Anya needed to come up to St. Louis and even though he was off, he would make sure to be there between 4and 5 when they would be expected to arrive.   I then get a call from Anya's dad with him saying that he's trying to get off work.  I tell him I'm off at noon and I can go on over to their house and help.  He said that he's going to be on his way.  That was one of the hardest things to do.  I'm wanting to take care of Anya myself...cause I'm her momma...I've always taken care of her.  I also know it's important for Anya's Dad to be able to take care of her and be there for her.  If we were still married it could possibly have been both of us going up there, but most likely it still would have been one or the other as one would need to work and look after the kids and I would trust in him to take care of her.  Even though we are divorced it's essentially the same, Anya's Dad and step-mom would be taking her to St. Louis making sure she is being cared for.  As a mom it is difficult to still entrust the care of your child to someone else.  So, Since last Friday Anya has been at Children's Hospital in St. Louis and most likely will be there until this Thurs.  It was discovered that Anya actually had a hematoma in the incision site.  Anya has been under anesthesia two more times getting her incision flushed out and this last time, yesterday, Dr. Dobbs has tried to sew her up the rest of the way but her foot was still too swollen, which is why he's wanting to wait til Thursday so some of the swelling can decrease.   Dr. Dobbs has been extra vigilant in his care with the precautions he's taking in making sure the hematoma is completely gone and that there's no infection.  Hopefully the swelling will be down enough to be able to sew up Anya's foot the rest of the way.  

I have to admit that being away from my daughter while she's been scared, with there being uncertainty with her foot, with all the poking and prodding, I have struggled.  I have felt so much anxiety, worry, and an aching in my heart to have my baby girl close.  To give her comfort, love on her and snuggle her.  I know a lot of that is for my own comfort. I know this is about trusting God and knowing He's taking care of her.  I know she's being loved on and cared for by her Dad and step-mom, that she is not lacking.  I'm so thankful that we have all been able to be there for her.  We have each of us played a part in taking care of her during this journey, making sure she has gotten the care that she needed.  This isn't about us, or our own self-glory, but how God will be glorified in this.  How the prayers that's been lifted up will show who HE is and how He's been there through all of this and how through all of this His light will shine through us, and Anya to others.  That is my prayer.  Thinking about these things reminds me of a verse: "As a body is one though it has many parts, and all the parts of the body, though many, are one body, so also Christ" "Now the body is not a single part, but many" " But God has so constructed the body as to give greater honor to a part that is without it, 25so that there may be no division in the body, but that the parts may have the same concern for one another. 26If [one] part suffers, all the parts suffer with it; if one part is honored, all the parts share its joy"1Corinthians 12.   

What I do as Anya's mom is important, as what  my husband Josh does, and what Anya's Dad and step-mom does.  We each have our parts with this thing of shared custody.  Our main purpose for all of us is to love our kids, to be there for them, to at times entrust the care of our child to the other...the other parts so that 'All the parts share its joy'  My friend Marci said this, and it's a great reminder for me when I my heart struggles with what my mind already knows, ". I know as a momma it is difficult to let someone else stand in the place you feel only you should be standing. And in all rights, that's right! But because of life's strange and even unfortunate circumstances, that can be taken from us. You are obviously an exceptionally loving mom, and you're a beautiful woman of God. If it's an encouragement, let's remember together that our children are really His children, he has all possession of them.  No man or even ourselves, so that being said our children have the best.

This was the first picture I had emailed to Dr. Dobbs

This was an hour and a half later still waiting on a reply from Dr. Dobbs.

This was rigt after @--> ripped the cast off

This is when Anya first arrived at the Childrens Hospital ER

Dr. Dobbs has flushed out a lot of the hematoma but she's not in the clear yet

The swelling is going down, the black spot is where a blister was removed so what's behind is like a scab.  The purple discoloring is blood under the skin like a blood blister.