Sunday, October 3, 2010

Twists & Turns....



Oh where do I begin...

So much has happened ~ so much to say...

I guess the best place for me to start is where I left off...

As many of you know, we had our appointment at Children's Hospital in DC back in August with the Urologist (Dr Pohl) and Surgeon (Dr Powell) and they too were convinced that Benjamin did have a fistula BUT they were not sure how many and IF there was something more going on...

So we were told that they would call us with some appointments (an ultra sound, VCUG, and MRI needed to be scheduled)...

Just one day after his appointment with Children's, Benjamin spiked a high fever and we were told to go to Children's Emergency Room, which we did. Our nurse, Leah (who is Dr Powell's right hand nurse & whose name you will hear me mention a lot) said (when I called her about his high fever) that he needed to get into them as soon as possible for they were afraid of a UTI - which could lead to kidney infection - which could lead to kidneys shut down. I did ask her if we could go to our local ER and she said she would rather us go to Children's seeing how we might be able to get a few of those testes we needed done. So off to Children's we went. By the time we got there, his fever was 104.6 at check in and they could NOT get a UA from his catheterizing (we now know why). Anyway, after spending the night, we left with no tests being done. He was fever free by the time we left and he hasn't had another fever since....

(that was on a Friday)

By Monday morning, I called Leah to let her know that no tests were done. She said she found out about the lacking tests Saturday morning after we were already discharged. Needless to say she and I were both upset.

A week goes by and still nothing else from Children's....

On the Friday of Labor Day weekend, Leah from Dr Powell's office calls me to let me know that the administration office at Children's would be calling me to set up our appointments.

I waited one week and that phone call never came...

I called back Leah to let her know and she said she would look into it (now remember she is only the nurse here)...

A few days alter, I received a message on my voice mail. The only way I knew it was from Children's was because of my caller ID. I could NOT understand more than two words the woman said on the message, not her name, not her phone number...only the words I understood were "not authorized". It was like she was reading to me from a speed script and the faster she said what she had to say, the better it was for her to get on with her other work - her message to me was just not that important. So in returned I called Leah and told her about the VERY UNPROFESSIONAL message I was left. Leah told me she would look into it and get back to me.

Two days later, Chentell called me and butter melted in her mouth when she talked to me (come to find out this was the girl that left me that very unclear message). She explained to me that she needed to check with our insurance because of that "not authorized". I hung up the phone and I waited for her to call me back which she said she would that day...

I waited and waited...

Than I called my insurance company to find out if anyone from Children's called them. The rep told me NO and that there is NO reasons why they should have to call my insurance because my insurance and Children's are participating partners. I called back Chentell and left a message for her what I was just told...

A few more days go by and I am now getting worked up. I feel like we have been placed on hold...and that our little boy was the one suffering. I called Leah and she said she would look into it.

One day later (if you are keeping track it is now September 22 almost 6 weeks since his first and only appointment with Children's) Leah calls me and we have a long talk. She tells me she is doing everything she can but the clerk in administration (aka Chentell) is telling her our insuracne is giving them problems. I explain to Leah what I was told by our insurance. I also explained to her that we do have a high deductible because we pay for our OWN COVERAGE. She said that she understood what I was saying and she will have Chentell call me ASAP...

Well, that ASAP from Chentell didn't come until he next day when I was told FIRMLY that our insurance EXPIRES on October 14th and there are NO appointments until November 22nd. She than just transfers me to the MRI department to talk to them. When I got the girl in the MRI department, she told me the same thing that seeing how our insurance expires on October 14th, they can NOT give me an appointment and their only next appointment was November 22nd which we will have no insurance. After she was done, I than tried to explain to this girl that NO our insurance does not EXPIRE on the 14th, our premiums are due on the 15th (which automatically come out of our banking account) and for that matter even if we didn't pay on the 15th, we still BY LAW have 30 days coverage. The girl than placed me on hold for 28 mins...never coming back...until I finally hung up. And guess who I called ~ yep Leah. I got her voice mail and I think I hit the roof! I told her everything that was said to me and how badly Children's was handling this. Here we are with our newly adoptive son who is in need of serious medical treatment and Children's is only worried about our insurance! I also told her that if it came down to us having to pay for his treatments we would ~ just get him in. It has been almost since weeks and still nothing. There was more said on that voice message by me and I know I broke down and cried during it as well. I was at the end of my rope - clinging onto it by my very short fingernails - getting ready to drop.

While I waited for Leah to return my phone call, I called our pediatrician's office. Dr Fishman was on vacation so I talked to her nurse, Liz, who got just as upset as I did over this whole mess. She told me she would have Dr Fishman call me Monday and I asked her if we should look into another hospital for his treatment. We hung up and I waited and cried my eyes out. I just sat on the couch feeling so helpless feeling like I failed. Than the phone rang and it was Liz. She told me her heart too broke over our story and she herself called Children's to see what happened and what needs to be done to get Benjamin taken care of. She also gave me some numbers of the people she spoke to and told me that if the nurse (Leah) doesn't call me back that day, that I NEED TO call the head of Dr Powell's office (Carol) and Children's (Terry) (which both #s she gave me). I told Liz that I have complete faith that Leah would call me back ~ she was the only one who ever does...

About an hour later, Leah did call me back after she did some researching herself and what was going on. She said her heart was breaking too over my message and she played it for her superiors to hear as well. Well, I guess it took me breaking down and getting "serious" for we finally got things moving ~ at lighting speed ~ because we were told to report to Children's the next day (September 23rd) for Benjamin's ultra sound and VCUG and Monday (the 27th) would be his MRI. Words can not begin to express how relieved I was to hear this...

I than called my mom aka Grandma that she needed to come down for I needed her...

Grandma arrived Friday morning about 8:45AM to come with me to the hospital and take that drive into DC with me.

He had both test done Friday and he was a champ! We went back for his MRI and he did amazingly well.

(the only problem we experienced was that the catheterizing kept traveling to his colon instead of the urethra ~ which is why when we were in the ER and they couldn't get any urine from him ~ the catheter kept going to his colon because of the very LARGE fistula he has.)

{{{And just so you know, the staff both medical and administration were WONDERFUL to us when we arrived on Friday. Flowers, gifts, free parking passes and so much more along with there sincere apologies. We were also told that the girls who were giving me all that trouble have been sternly reprimanded.}}}

Than we waited for the results...thinking I would get a call from Leah saying..."We will be doing his surgery on..." BUT that didn't happen.

This past Friday I got a phone call from Leah that changed everything. She told me that the MRI "showed abnormalities on his spine and spinal cord" and that since this has come up, we need to see the Neurosurgery first, let them do their surgery and then we would come back to Dr Powell for the fistula/and other corrective surgery (the MRI also showed a lot of bowel abnormalities which will need to be fixed as well & as for the VCUG it did show a very LARGE fistula which again is not good). I think when I heard her say that my knees hit the floor and I started shaking. Neurosurgery...oh this isn't good - is it? I than asked Leah to be straight with me or as straight as she can be and she told me, "This is extremely serious Mrs Leonard, and I need to call them first thing Monday morning." We than talked a bit more and I asked a ton of questions which she could not answer (which I totally understand)...

So now here it is Sunday, the day before I can call the Neurosurgery department at Children's. I have not slept more that 3 hours a night worried sick over our little boy. How can this be happening to him? He so does NOT deserve this. What did I do wrong to bring this onto my child? Why did it take so long for our paper work and the travel? Was there more I could have done to get there faster? All these questions keep me up at night.

I must admit, I visit my children's room often during the night. I watch them sleep ~ so peacefully and I give my mom's special kisses to each and every one of them. I can't imagine my life with out ANY of them.

So this is where I am at today...

Counting down the hours until I can call Children's ~ once again.

{{{And please understand this Leah (who you all know I mention a lot in this post) did MORE than a nurse should EVER have to do! Seeing how I have been surrounded by medical professionals my whole life (clinical med techs, doctors, pharmacists and so much more), I KNOW that Leah did more than she should have. If it wasn't for her, we would never be this far....}}}

Just look at our precious little boy! That smile melts my heart and keeps me fighting ~ for him and his rights!

As soon as we know anything I will let you all know...

{BTW ~ Prayers are so needed...}

13 comments:

Valerie and Jeff said...

Shelly,
You sound like you have run the marathon for your son and you have done WELL! Be reassured by that and continue to have faith and keep praying! God has known all along the challenges for your little guy. He knit him in his mother's womb and has a purpose in this all ... and I pray that the paperwork hurdles will NOT be in your way any more! (I could just about scream at these people FOR YOU just from reading your email!) Hang in there!! Your Benjamin sure looks like a sweetie! Oh those cheekies!
Hugs to you and prayers for you!!

Sharon Ankerich said...

Just want you to know I will be praying for you and sweet Benjamin!!! I pray God leads you and the person you will speak with tomorrow and things will fall right into place for your precious baby!!!
Blessings!

Half Gaelic, Half Garlic! said...

Oh Shelly, I wish it were better news...... but know that you are doing everything you can possibly do for your sweet boy. There is nothing that you could have done differently. You were at the mercy of the systems, both China's and ours..... you were not in control and you got him as soon as you could. Don't beat yourself up over that. Just continue to fight the fight for him. I know you will and I know that there is no one better to advocate for Benjamin than you.

Keep listening to that Momma instinct and call and talk to anyone you can to get what you need for Benjamin.

Please know that you are all in our thoughts and prayers. Call me if you need to vent, cry, scream, talk...... you know I am here for you girl.

xoxo,

Lisa

Our Journey to Grace said...

Sweet Shelly I am so sorry that you have walked this horrible path. THere seems to be no excuse for it. But know this God wastes nothing do you hear me! NOTHING! He is not suprised by this! This is not to big for him. The harder it seems for us to wrap our mind around a "good" way out; the bigger God gets to show up on the scene and do his thing..a miracle. God called you Shelly to trave to the other side of this world for this little boy. You are the one he knew was strong enough, would fight hard enough and would bend your knee to him and walk this out in faith. You are doing it right girl. Just cling to the only one who has the power to heal him...lay your hands on Benjamin and pray healing over him....ask God for that miracle....he hears the cries of your heart. I am praying for you and wisdom for those doctors and peace that suprises our understanding and healing for Benjamin...his smile melts my heart I love you, Dawn Fisher

Family said...

A testimony to Benjamin is that he is still alive, sweet as ever, and in your arms...God will take care of the rest of it. But as a mother I totally understand fear, worry, anxiety over our children...again God will take care of it. We love you and will be praying for straight answers and straight and excellent treatment and recovery

Family said...

A testimony to Benjamin is that he is still alive, sweet as ever, and in your arms...God will take care of the rest of it. But as a mother I totally understand fear, worry, anxiety over our children...again God will take care of it. We love you and will be praying for straight answers and straight and excellent treatment and recovery

Jodee Leader said...

Sending hugs and prayers from Nebraska. Hang in there!

Bushnell Girls said...

Shelly, you and Keith just keep on doing what you are doing. God gave you this little one, and Benjamin is no different than he was a week ago - you just have more information to worry about. He is still the same sunny, loving little guy, with the perfect parents caring for him. I'm so glad that you have been blessed with some medical staff to help you advocate for Benjamin. I'll be praying for you, my church will be praying for you, and I have passed the prayer request to friends around the country. This is hard, there is no doubt about that. But you can do it, with God walking beside you (and all of us holing you up in prayer). We love you!

Sue said...

Shelly,
Benjamin has and will continue to be in our prayers!! So very sorry that you have gone through all of this just to get the correct treatment for your little guy. You are one tough mama and please do not continue to stress over why he wasn't home sooner - it was all out of your control and it is the past. Praises to your guardian angel (Leah) and have faith and trust that moving forward Benjamin will receive the best care and have his problems corrected. Big hugs to you!!

Cindy said...

Oh Shelley!
Thanks for sharing all that's been going on and praise to you for being so on top of it with your nurse/angel Leah. Your little guy is so sweet and special and you are one special mommy! Prayers and HUGS sent your way when needed...
Please keep us posted and my heart is ripping out too for your smiley little soldier!

Lindy said...

I am so sorry that you have been through all this. It makes me angry that the Chinese government doesn't do a better job identifying what children need ahead of time so parents can be prepared. That said, you are handling this all so well and are a wonderful advocate for your son. I am praying that your sweet boy gets the help he needs and God helps to smooth the way. You and your husband are such loving parents to your beautiful children.

Lindy said...

I am so sorry that you have been through all this. It makes me angry that the Chinese government doesn't do a better job identifying what children need ahead of time so parents can be prepared. That said, you are handling this all so well and are a wonderful advocate for your son. I am praying that your sweet boy gets the help he needs and God helps to smooth the way. You and your husband are such loving parents to your beautiful children.

Football and Fried Rice said...

I love these 2 pictures!! THAT smile!! I love the Chinese statue in the window sill ;-)