Health Insurance Case Manager and Therapy Update

Who needs sleep anyway? Blogging my health insurance situation is important enough to lose a few winks (or hours). Says the lady at 3am who will be quite the cranky person in a few short hours when she has to wake up!

Anyhow, Chianna had a therapy appointment today at 4:30. I was working up until the last minute, when I realized that her shoes weren't on and her hair was a tangled mess. So off I run to put her shoes on and comb our her tangles as quickly as possible without hurting her or pulling all her beautiful hair out! Then rush to the car, and rush to the therapy office, which is about a 15 - 20 minute drive. Rush in, to find that for the 2nd time in two weeks, her scheduled therapy appointment will not be happening because the insurance approval from Staywell hasn't come through yet! It has been 2 weeks! So I am upset with the therapy place because someone who was supposed to call me didn't; nor did they return my message yesterday when I called them to confirm the appointment either! At least, the occupational therapist that was there at the front desk offered to do some quick stretches with Chianna and showed me some new ways to stretch her that I really like a lot, so it was not a total waste, and I am so thankful for that!

So, I march off super, uber pissed off, doing my best not to take anything out on Chianna or let her even know I was mad because she doesn't understand these things and it will only confuse her. How do you hide this level of frustration? I do not know, I think I have perfected the smile through gritted teeth.

I get in the car and call my Staywell / Wellcare Case Manger, you know, the one that was none too helpful the first time around. But I figure, its better than some dimwit in 'customer service' [term used lightly] who will not likely even give me the correct information at all. And actually by dimwit in customer service, I don't mean any ill will or negativity towards any individual, they are only as good as the structure and policy around them, and when that makes it impossible to do their job properly, its hard to assume they should be caring and knowledgeable. Luckily, our case manager was on another call and the person who answered the phone in that department asked if he could help me. His voice alone was pleasant and comforting, so I thought I'd give it a shot. I guess, I have to look at it as what might be the silver lining in the situation - at least I hope it turns out well. He seemed like a big help to me. He is assigning me a new case manager, one who deals with long term therapy. (Yes, you can ask why didn't they do that in the first place? And also say "DUH" - loudly and obnoxiously, too.) He said that didn't make sense at all that they take so long to approve more therapy sessions when she needs constant care. I also explained to him the therapy problem I was having and that the previous case manager didn't really resolve any situation for me, because the place that she found for therapy is 45 minutes away and didn't have therapy available on the same days, but that even if they did that a 45 minute drive each way after school is too hard on Chianna both mentally and physically, and doesn't allow time for her school work, dinner, bath and bedtime. He agreed with me, and sounded much more empathetic and compassionate and understanding of my situation than the case manager they had assigned me did. She was just a strictly "by the book" type of thing and I was definitely upset about the lack of help. Hopefully this person I spoke with wasn't just a "yes man", because I've spoken with plenty of those type people at insurance companies before. And more importantly, hopefully the new case manager, or case nurse we are assigned can REALLY HELP us, not just give me lip service and quote their guidelines. Maybe they might be able to get her out of network therapy covered after all, maybe even they can get her orthotics covered out of network too, but if none of that happens, then hopefully at least we can get a steady stream of approvals so that when I finally get appointments for her to see her speech and occupational therapists, that we can keep them! It shouldn't be too much to ask!

I should be getting a call from a new case manager within the next few days, so as usual, I will try to keep the blog updated with the situation!

Botox Update

I know, I just posted about Botox, so I am going to include a short update on Chianna's progress over the last 5 days. The morning after the Botox, Chianna woke up saying that her arms and legs were sore where the shots were. The doctor had said this might happen but was not very common. She said if it did, to give her Children's Tylenol or Motrin and it should take care of it. I gave Chianna some pain medicine and her pain went away and didn't return, so we were all good.

On Friday we left for Orlando to visit the family and to attend the burial of our Nonie and Papa. It was not a fun trip, but we now have some closure and know that Nonie and Papa Nick are together forever and that is a comfort. At least we got to spend time with the family and Chianna and I got to meet some of Myke's cousins that we had not met before.

We stayed at a hotel near Baba and Pa's house and on Saturday and Sunday we immediately saw some improvement in the range of motion on Chianna's right arm, she was able to push the elevator buttons with her right hand much quicker, easily and more accurate than before. When we noticed that, Myke asked her to give him five and noticed the increased speed, and strength that she was able to hit his hand with her right arm. Once she realized this, she was wacking everyone five whether they were prepared for it or not! I guess this is the only time that hitting and smacking will be allowed in our family! Chianna is very proud and excited and was eager to tell anyone and everyone she saw this weekend about her "ordeal" in the hospital. She wisely explained to friends, family and even some strangers that she had shots in her arm to help her muscles get stronger and that is why her arm is so strong and fast now!

On Sunday, she started complaining that her ankle hurt. She spent Sunday and Monday complaining it hurt and limping or hopping around. I called the doctor's office Monday afternoon and again today when I didn't hear back. Yesterday at camp, she said she didn't want to do anything since it hurt so much. Today she stayed home from camp (not because of the ankle, but because the field trip was ice skating and she wasn't going to be able to handle that.) This morning she said it still hurt.While waiting for the doctor's office to call back, I called the physical therapist, and he offered to come by today to look at her ankle and see if it is anything serious. Just like the broken car that doesn't act up when you take it to the mechanic, he arrived this afternoon and she was perfectly fine! But, at least he was able to confirm that it was nothing serious and likely just a side effect of her using her muscles differently and possibly causing some stress on her ankle joint  because of it that will take some getting used to. He did some stretching with her and observed that her ankle  flex had gained a few degrees in flexibility since he saw her just on Friday and of course observed the fast and hard "fives" that she is giving everyone these days. He seemed quite happy with the progress.

When I spoke with her doctor, after she called me back, she said that she really needs to be wearing her AFO and SMO braces for support. Unfortunately, her braces are not ready yet, which seems to be another side effect of our lacking health insurance situation, the prosthetic places that are covered don't put our the best product. We had her braces made quite a few months ago, I think it was in March or April that she was initially measured for the braces. They arrived the middle of June during the last week of school. It took a really long time to get them, the first day I sent her to school in them, she came home limping and could barely walk, her feet and ankles were all red and scraped in many places because the braces were not molded and fitting her properly. I took them back 3 times before seeing the doctor last month who wrote a specific set of instructions to the orthotist on a prescription and said if these changes can't be done, remake the brace. So about 2 or 3 weeks ago we went back to the orthotics place and they ended up re-casting a mold of her right foot and ankle to make a new brace. She made the follow up appointment to pick them up for yesterday, saying they would definitely be ready by then when I questioned her about it, and said she was having it expedited. Well yesterday morning, I received a phone call that they were not in, in fact, they were just finished and had to be shipped from Washington state and won't be in until next week! Some expedited service that is! I am lucky that I don't have a job where I would have had to have taken off work for the day or afternoon since I didn't even have any notice that it wasn't in. So, the point being that the doctor is upset that she doesn't have her braces yet, because that ankle brace is very important to keep the stress off of her ankle.

Her physical therapist showed us what the AFO and SMO should look like, as made by an orthotist that he recommends, and the look of them are like night and day. There are a number of things wrong with the design aspects of Chianna's current brace compared to the one that is made better.

So, we will see what happens with the AFO/SMO situation and the Botox too.

Botox Time

Chianna had Botox injections done last week to treat her Cerebral Palsy. I am going to do my best to keep updating the blog on her continual progress with the treatment. One of the issues we have is that after the Botox injections are done, they only last about 3 - 4 months, so we need to capitalize on the time frame and get her 3 sessions of both physical and occupational therapy per week.

Saying that is going to be challenging is an understatement!

The procedure for the Botox went very well. It is done under IV sedation with an ultrasound guidance to make sure the right muscles are targeted. The purpose of the Botox is to resolve the issue of tightened muscle tone that affects Chianna's right arm and right leg. She cannot flex her right foot, she cannot bend her right wrist, or turn her palm to face up; plus, her right arm is usually bent and her fist held up. The Botox targets the muscles that are tight and stronger because of these movements and the Botox in a way "paralyzes" the stronger muscles so that the weaker muscles can be worked out to get stronger so that they have a fighting chance to balance everything out once the effect of the Botox wear off. I hope I did a good job explaining that!

We arrived at Joe DiMaggio's Children's hospital in Hollywood last Thursday morning and I cannot say enough nice things about the facility and the staff there. They really catered to Chianna and made her feel welcome, special, and cared for. Even the person that called in advance to tell us what time to be there made sure to tell us that she could bring a toy, stuffed animal, or something from home to keep her company. She opted to bring her special Fox named Happy. I am sure she will not have any scary hospital memories or thoughts based on this place. We arrived to waiting room with a large screen tv playing cartoons. Everyone there from the check in to the nurses and doctors were so nice. When we went into the outpatient area to her bed, she was given the remote to her own tv and each nurse in the area came over and introduced themselves. Shortly after that a patient liaison came over and sat with her for quite a while. Soon Nutmeg, the resident dog arrived and came over too for some petting and loving. The nurses put a numbing cream on the spots where they might need to put the IV so that it wouldn't hurt and while they were putting the IV in, the liaison blocked Chianna's view of the IV set up with her IPad, and they played some games. Chianna didn't even know the IV went in. After that, while we waited for the procedure time, they gave Chianna sun catchers to paint and take home with her. We were able to go into the procedure room with Chianna and stay with her until she fell asleep. That was the only hard part, the IV meds sting when they go in for about 10 - 15 seconds until she is put under and she cried, she has such a high tolerance for pain, that she very rarely has ever cried when hurt, so it must have really hurt. The 10 - 15 seconds was horribly long for Myke and I and I am quite sure it hurt us more than it hurt her. The whole procedure was only 15 - 20 minutes. The doctor sent Myke and I to get coffee, and by the time we did that and came back they were all finished and we were able to sit with Chianna until she woke up, which was only about 15 or 20 minutes later.

The doctor spoke with us and said that everything went fine and that the effects will take about 24 - 48 hours and the optimum effects are in about 3 - 4 weeks. She went over stretching exercises for us to do with her daily and after an hour in recovery, we were on our way home!

I will do my best to keep posting about the results that we see with Chianna's progress!

Health Insurance and Therapy Update

I have not been able to find the time to update what is going on with therapy and Chianna's health insurance but I figure I had better get at least a short update in before the task becomes monumental.

We were assigned a case manager from Staywell who informed me that if any therapy is available within 60 minutes driving time (each way) that the insurance company has fulfilled their obligation and will not allow any out of network coverage. And the therapy providers don't have to have therapy available on the same day.

So evidently, we are supposed to be able to take multiple days off of work to drive her round trip up to 2 hours to a therapy provider. I explained that not only is that not feasible to take off work, but that Chianna cannot handle the long drives and the time spent for that plus therapy takes away from our family time, not to mention that once school starts, she has homework to do each night and getting home from therapies [exhausted] at 6pm or later and then attempting to do up to an hours worth of homework, eat dinner, have a bath and be in bed by 8pm is rather impossible.

The case manager was very uncaring to any of those facts and just stuck to the facts that are listed in our policy, standing by her company rather than even looking into helping us in any way.

Typical.

So, Chianna started with a physical therapist who comes to the house. We started about 2 or 3 weeks ago now, and he is absolutely wonderful. I am so glad that I feel it is worth every out of pocket penny we are paying him. The fact that I don't have to run around and rush to drive to get her somewhere in time is such a relief and he even comes on weekends!

Chianna really likes him and so far, we are off to a great start with that, despite having to pay in full.

I am still trying to coordinate getting Chianna the OT and Speech therapies twice a week, and it is yet to happen, but hopefully once school starts, we might be able to get a schedule together.