Tuesday, March 1, 2011

Zoya update

I am absolutely exhausted. Perhaps I should just go to bed early, but then I wouldn't get to enjoy the wonderful luxury just sitting here on the computer in peace and quiet! ;).

There have been so many moments these last couple of weeks that have left me either laughing, crying, or screaming in frustration. Who knew getting supplies to a child with a feeding tube could be so complicated! It has just been one issue after the next.

-First, the box of syringes that was sent was delivered to the wrong address....specifically the abandoned property next door. The next day the blizzard came and the box has never been seen again.
-I called about two weeks later to report the box had never arrived, they tracked it and found out what happened, and resent a new order.....
-Except this time, they sent a new mickey button instead of the syringes we ordered. Oh well, I thought. We will need one eventually so I'll just hang onto it until later, and then call on the syringes again. Yesterday I received a bill for $176 for an item (mickey button) we didn't need and didn't order. When I called, they said they have on record that I did call and order one. But why would I have done that when I haven't even been given instructions to change it out until April?
-When the dietician set us up, she calculated a 'discounted' rate of $16.74 per case of 24 cans of Pediasure (or so I heard). This was far cheaper than clipping coupons, so we agreed on this price. I was really pleased and thought I had gotten a great deal on this. Got the bill later, and realized it was really $67.40. Maybe I need to get my hearing checked. ha
-Later, when she wasn't gaining enough weight, we switched her to a pump. Nobody seemed to know exactly which doctor was supposed to order the pump. Did it need to be the developmental pediatrician who recommended the increase? Or our primary care physician? Finally the pump and a pole came but without a clamp to hold it....
-I called three times looking for that clamp. Each time they said they would deliver it the next day. They didn't.
-A week later it arrived by UPS. While I was signing for the package outside, the phone was ringing inside. It was the medical supply company, leaving a message to notify me that the reason we didn't receive a clamp was because that particular pump we have doesn't have a clamp. He said you're supposed to just rest the pump on a table. Hmmmmm. So then why did they deliver a pole to hang the pump on?
-Came in the house, and tried anyway. The clamp worked perfectly. Hmmmm???
-We compared prices on formula and realized that even with clipping coupons we were going to be paying about $2,500 a year JUST on Zoya's formula!  Since we found out our insurance doesn't pay for the formula, (according to the hospital staff, the medical equipment, AND the insurance representative herself), we have been clipping coupons, applying for the company's discount programs, and learning how to make homemade tube food....in an attempt to save money.
-In order to qualify for the company's discounted price, we have to show copies of our tax return, paycheck stubs, fill out forms, and get a letter of coverage denial from the insurance company. I got all the way to the letter from the insurance company, and when I called to ask for it, the insurance representative told me that I'm mistaken....They DO pay for Pediasure.  Hmmmm. So why did the first lady I talked to two months ago tell me they didn't?
-So I called the medical supply company and told them to bill insurance for the Pediasure, and the customer service rep said, "Are you SURE that's what they said?...United Healthcare very rarely covers formula. I just can't imagine them telling you that they do. WHO told you this again?" BIG SIGH. So I guess it's more phone calls tomorrow.
-Meanwhile, we have yet even to this day, seen a dietician, other than the one who discharged Zoya from her hospitalization in December. There is nobody other than me who is monitoring her weight, watching what she eats, trying to increase her caloric intake. This is so disheartening to me. I have asked several doctors for a referral, and without fail this has slipped through the cracks over and over again. Today I finally got a message that the referral has been sent to a speech therapist who specializes in feeding therapy. This is definitely a step in the right direction, although it is not a dietician. Nonetheless I left a message on the voicemail today and praying we can get in soon.

We started out by feeding Zoya a total of 3 cans of Pediasure a day. She gained a little at first but then slowed down. She also started vomiting frequently then, which was new for her. It seemed to correspond to the increase in her medications, although I can't get a doctor to confirm this possibility (they think it is due to FAS). Eventually she was back down to 23 pounds and it became clear that she was eating even less now since she had her g-tube put in. The developmental pediatrician calculated what she needed, and said that 3 cans was barely even enough to sustain her, let alone make her gain weight. So now we are up to 5 cans a day. The only way it was possible to get this amount into her tiny stomach was to put the feedings in a pump at night. So now she is on a slow drip over 12 hours...4 cans at night, and one can spread out via 3 bolus feedings during the day. This is working out pretty good, except that she is still nauseated and vomiting, even occasionally at night, and is now virtually eating NOTHING by mouth. We still try of course. Boy do we try! If and when she does take a bite of something she usually holds it in her mouth. Often later we find it spit out on the floor or in the trash can. This little girl is breaking my heart. 

I really have had to ask the Lord to deal with the lack of compassion in my heart towards her birth mother. Every hurdle Zoya faces is a direct result of the substance abuse that she had to endure in her mother's womb. It is really hard for me to have feelings of forgiveness as I watch my emaciated daughter gagging up her graham cracker into the trashcan, or holding food in her mouth because she wants to please me but she can't bear to swallow the grape. Sometimes I cry when I see the panic and anxiety on her face when I tell her it's time to eat. And it just seems to get worse and worse. I don't think I will ever again be able to enjoy the beer commercials on Superbowl Sunday. :( I wish more people were talking about fetal alcohol syndrome. BTW this diagnosis has been confirmed, as all the other genetic tests have come back negative. :( Boy that was hard.

Incidentally, after making a hundred phone calls trying to understand some conflicting reports we have been receiving between different specialists, I finally got some answers. Zoya has had one positive HIV test, and two negative tests. One doctor felt that she may have been misdiagnosed and mistreated all of these years. Another doctor feels that although the tests should have all been consistent, he thinks the fact that she has been medicated so regularly is just causing the virus to be undetectable. Either way, the HIV results have been almost too good to be true. On Monday we ran another test that *should* confirm. If it continues to show negative, we are planning to discontinue all her medications. Oh, please let it be negative. Please pray with us! We feel that the drugs are poison to her little body, and she needs to get well! The doctor said either way he is willing to work with us on her medications to see if they are indeed the cause of her nausea. He may even be willing to let us put them on hold for awhile and just see what happens. Praise the Lord that we are finally getting somewhere with Zoya!!

Are you still reading? If you are, perhaps you can see why I'm so tired,  but would rather stay up in blog world where all doctors, medical supplies,  and insurance companies, are closed, children are asleep, and nobody needs my attention for a moment.


Sandi said...

I'll email you about our battles with united healthcare and samples of appeal lettets to get feeding supplies and therapy covered. Zoya is amazing and deserves everything to be covered. And you deserve time to be the amazing mom you are rather than taking on uhc. Grrr.

junglemama said...

Oh Charissa, you are such an awesome Mom. I needd to read this since I am going throughmy own issues with medical care. Sometimes I forget that I am not the only Mom battling these big insurance companies.

Michelle said...

I'm still reading! I have no helpful comments, but I'm with you in prayer!

Renata said...

Hi - I've read your blog since you adopted Joseph & Zoya but don't think I've commented before. This post has touched my heart - just want to let you know I am adding your precious little girl to my prayer list - God can work miracles!

Anonymous said...

I just want to say I admire your strength, it is wonderful and inspiring to read the way you live your life, the choices you make.
Your children have a wonderful 'mama'!
(yes, from the one that asked where 'opa and oma' came from :-)

Leah Spring said...

Yep, I got tired reading that! Ok, on 5 cans of formula every 24 hours, she is NOT going to be hungry. Has she had a gastric emptying test to see how fast her stomach empties? My guess is it's quite slow, which is why she's nauseated and was vomiting before. So, if indeed she is emptying slow, she is just not going to want to eat. Imagine having had that HUGE Thanksgiving dinner. The one where you have to unbutton your pants and go take a nap. You have just pushed yourself away from the table and cannot possibly eat another bit, when someone offers you a piece of pie. You don't even want to look at the pie, much less eat it. That's probably how Zoya is feeling. Talk to your GI doctor about testing her rate of gastric emptying. If indeed she's very slow, they can do a partial or full pylorotomy (separating the pyloric muscle that controls how the stomach empties)

~*Brittany*~ said...

So... I have two friends whose children had or have g-tubes and both were on pediasure. For both of them, they were able to get either insurance to pay for prescription of pediasure...or.... they got WIC coupons that covered. Is that an option for you? praying for a negative test and for free Pediasure!

James 1:27 Family said...

Oh, Charissa. I'm so sorry. This is so much. This is a lot for two parents to handle with a single child but you have 7. I will be praying for all of these needs. I will be praying that God sends a doctor or therapist who can really help her. I will be praying that your insurance company pays for the things they should pay for. I think sometimes the appointments, bills, insurance calls, etc. are as much stress on parents as the child's illness itself. I wish that more people knew exactly what parents of children who are ill endure. Thank you for sharing your story.

Have you heard of UnitedHealthcare Children's Foundation? We applied for a grant to pay for our daughter's hearing aid last year and we received it. You do not have to have any type of insurance, nor their insurance to apply. They have a website with more information. http://www.uhccf.org/

Many blessings and big hugs,

Cammie Heflin said...

:( Oh Charissa, I'm so sorry this is such a battle. I can completely relate though. It took almost three years for a doctor to hear me out when I kept asking for a dietician too, thank God someone finally listened. I am praying so hard for Zoya and you!!

Anonymous said...

I ran into similar problems with Sawyer. He was sent home (after birth) on fortified breast milk. Meaning I pumped milk and added formula to it to bump up the calorie count. Then we pumped it into him via NG tube. NO ONE would help me up the calorie count as he got bigger. The ped would say, he gained x amount of ounces. He's good. It was very frustrating. When he went in to the hospital for his heart surgery at 10m old, the dietician there told me he should have been getting way more calories. Yeah, I know. I'm betting they could add more formula to the pediasure and bump up those calories.

Oh please oh please let that HIV test come back negative!!!!!!

I totally feel your pain on UHC. So frustrating to get a good answer. ALWAYS ask for at least 2 levels up and be prepared to have to fight even after the bill has been processed.


Anonymous said...

Sounds like this is a spiritual issue, and we are going to gear up in special needs prayer and ask God for insight and understanding as to what is going on here.

Dad in California with the Grandma Nagle.

Kelly said...

Charissa, I'm here reading and praying for your beautiful family! I dont have any advice on where to turn for insurance battles, but wanted you to know I am thinking of you. What an amazing Mama you are!

Unknown said...

Oh I am so frustrated just reading all that run around you have been getting from ins, doc, ups, etc. I'm so sorry. I don't know how you are doing it all. Major prayers for Miss Zoya and for each of you!

Dove Familie said...

Your comment "I really have had to ask the Lord to deal with the lack of compassion in my heart towards her birth mother" screamed out to me. I'll admit I've been dealing with that one BIG time with D's birth mom. I've found myself in tears at night, angry at her for what she did to our boy. I'm thankful for him, and I'm thankful that God saw us fit to parent him, but I'm also angry that he deals with things that I'm certain are a result of her poor choices.

I'll be praying for your issues with the insurance company - and also for the testing results.


Kelly said...

Praying for you! I know all too well the struggles with a child who will not eat. I live in the Tulsa area and Therapy Works has an amzing dietician..AMY PULS. My insurance would not cover her but it was 80 dollars for an hour and then she let me just email her or call her with questions.
Just a suggestion...If the vomiting is new with the Pediasure she may have a milk protein intolerance. My daughter is on Elecare Vanilla which is dairy and soy free ( it is a prescription formula and your insurance will cover it). My daughter stopeed vomiting and gained weight with this formula.
I would be happy to talk to you anytime..k a ryan at cox dot net no spaces!

Angie said...

I have never posted here before, but I have followed your blog for a long time. You have a beautiful family, and I have been inspired and encouraged by you! We are a homeschool family with 4 bio kids, 1 with CP adopted from Taiwan, and 1 with DS soon to be adopted from E.E.
Many times I have read your blog and felt comforted in finding another family who is walking the road we are.
Please know that we are praying you through this and rejoicing at each new accomplishment you and your kiddos make together :)
Hang in there! You are doing awesome!

Shelly said...

Just reading this was heartbreaking! I can not imagine what it is like to see little Zoya go through all this. I think you are doing a wonderful job, and i will pray for Zoya to have a negative result. Will you know soon?

Anonymous said...

Oh my dear Charissa, you have every reason to be tired and frustrated. You have such an amazing family, and altho you may not be able to see it sometimes because you're in the middle of the storm, each one of your kids have made tremendous strides forward. Just seeing how Joseph loves the out of doors, and the kids inside the truck with John brought tears to my eyes. What a beautiful photo that was.
I had a wonderful 'quick' visit with your parents last weekend. It was much too short, but so sweet.
Sending love and prayers, and looking forward to good news regarding Zoya soon. It's coming!!
Love, Aunt Sharon

Nana Robin said...

I thank God Zoya has you for a mommy.

MoonDog said...

oh Cha! I know its exhausting but you have already done more for her than anyone else ever bothered with! hang in there. I think I have a link that might help you. I will send to you via fb. I hope that Zoya's test comes out neg. maybe she was only pos from mothers antibodies at birth. that would be a welcome miracle NO DOUBT! love that girl up for us. and know we are always thinking of you guys and miss you tons.

waiting said...

that is a ton of dairy which can make you feel bloated and constipated, ie full and uncomfortable. I would alternate a soy, or something and a dairy product, try Kindercal or instead of pedisure use organic whole milk mixed with carnation instant breakfast which is cheaper than pedisure a little. Gosh of her meds if HIV negative might be a world of wonderful for her diet!

Anonymous said...

Not that you need any more phone calls to make, but I was wondering if you have heard of the Medicaid Waivers? Each state has a "waiver" that is money available to families raising children with SN. It is federal money...each state has a different name for them and each states waivers are a little different. A waiver covers things that insurance won't or will cover co-pays, etc. We had a "respite" waiver when we lived in VA and it covered our babysitter to provide respite/aka babysitting for our son who has DS. It also covered diapers and/or Pull Ups if the child wasn't potty trained by the age of 3. It goes only off of YOUR CHILDS income, which should be zero. When we applied, I asked other moms in our local DS group who to contact. We started with a social worker with the health department.

Also, we now live in GA and Easter Seals has money available for families. Again, it doesn't go off of family income, but medical diagnosis and need. Even if there is no Easter Seals in your town, look it up for your state and call and ask if they have any stipends for such needs.

As always, I am praying for you and your family.

A. Gillispie said...

Oh tired mama! I'm praying for you!!

Reading your post was like a flash back 8 years ago when we were trying to figure out Samrens' issues. They put him on Pediasure furst, but he vomited it up worse than anything else. Eventually he was put on an amino acid base formula because his tummy was just too sick to process any proteins. It was called EO28. $1000 a month out of pocket!! Insurance wouldn't pay. We fought and fought. To this day we have debt from that period in our life. No other way to pay for it. BUT, the E028 (Neocate 1+ is another alternative) allows his stomach to heal. All the villi in the intestines were worthless. They had to heal and grow healthy again before his stomach would empty properly. Even then he still needed the amino acid formula for 100% of his caloric intake.

Like another poster mentioned, I have heard great things about Therapy Works in Tulsa.

I know you've got enough on your plate, but has there been any progress on getting into the GI? Seems like if your reguarl ped called their office and said 23 POUND SIX YEAR OLD they'd have you right in! If not, it's worked for me in the past to seriously beg on the phone with the receptionist. They just need to know you're not an over-protective mom that is imagining things. If they know that, all of the sudden they can get you in within a few days/weeks rather than months.

For the HIV did you have the PCR/DNA test done? If so, that will tell you for sure. Hoping it was just mom's antibodies and she is negative!! One less than!

Did I ever tell you that in the midst of Samren's disease he was healed? Like, miraculously healed, in church. We took him off meds and let him start eating food the very next day. It was just gone. I am praying for the same sort of healing for Zoya! I know the Lord can heal her!!! If He doesn't choose to heal her in the same way, I'm praying that her testimony in this world will be a great one--bringing glory to him!!!

Monica said...

We have a son w/ a g-tube and we also have UHC. They will pay for Zoya's formula because it is going through the g-tube. If she was drinking it through her mouth they would not cover it. My son has major food allergies/intolerances and I wonder about Zoya. We are on Neocate Jr. and it has helped us tremendously. I would also consider a motility issue in Zoya. My son has it and his feeds sit in his stomach forever, which will cause him to vomit if we add more. He vomits 2-3X per day, more if he is having a gaggy day. He has severe reflux too which doesn't help. He takes meds to help push foods through his stomach. I haven't seen you post this, but has Zoya had a swallow study? My son has dysphagia and it makes swallowing very painful. (he also penetates/aspirates what he does swallow) With Zoya's palate she could have pain/discomfort with swallowing which then makes eating a battle. Also, you can google the calorie requirements for her age and it will tell you what she should have. Feeding therapy or a good Speech therapist can be invaluable. We pleasure feed only, when he tells us no or refuses food we allow him to. His Dr's have said we will only increase his oral defensiveness if we push him. I HATE food/mealtime feeling like a battlefield, but since we have pulled back he has occasionally shown an interest in what we are eating. The Dr's tell us we have the tube so use it and don't stress about oral feeding.
I so understand everything you wrote. I live in that "place" most days :) I will continue to pray for your family and especially sweet Zoya!

Anonymous said...

I admire you so much. Your family has large hearts and this kids could not have found a better home. I hope you don't mind, but I contacted a good friend who runs a CF organization. She had lots of info on how to get pediasure and other non insurance covered items for a reduced rate or even for free. I asked her if she might have any info for you. If she does I will let you know. I hope its ok I did this, given I don't know you I jsut read your blog.


Justine said...

Oh, Charissa, my heart is breaking for you and your sweet girl. You both will be in my prayers.

Justine said...

Forgot to mention 3 things:

1. I am SO excited that Zoya might be HIV-. Wow! Wouldn't that make a difference? Even if she is still +, it is great that it is under such control.

2. When Tim had his g-tube, Mother's Choice did oral therapy with him LOTS (I think it said 5x per day in his child studies). I don't know how much they fed him by mouth, but I do know that they worked a lot on oral desensitizing and that sort of thing for later on when he would eat again. I would think the speech therapist could help with that. Just what you need, another thing to do, but if you did that INSTEAD of expecting her to eat anything by mouth maybe it would be worth it.

3. Andrew Wommack has a video on his website of a little girl who was healed of something similar (only more extreme, she was actually dying.) http://www.awmi.net/extra/healing/hannah

Praying especially for strength and wisdom for you!

Jodi said...

Holy cow. My life seems very easy after reading that!

By the way, we've had Toma on Pediasure for months now and our insurance does cover it, we have Health Partners though. The Gastroenterologist (?) prescribed it, I think.

I think you're Super Woman :)

Me. Us. She. said...

I've been following the blog and your story on the forum. I so hope that test comes back officially negative and the meds can be taken off your plate and out of Zoya's system!
I see you already have a lot of comments of support but I just wanted to say that I'm thinking of you.

Anonymous said...

I feel your pain as that is what we as parents of Special Needs kids go through in a regular basis. It is sooo frustrating, but there are health benefits that outweight all that, hang in there.

RECAPITULATION (from my point of view).

1.- Please remember that the main purpose of the g-tube on Zoya is for her to gain weight to be able to have her palate repaired. Take advantage of the g-tube and forget for now about oral feedings. Be sure that she will be able to eat orally someday and keep your expectations low, stress free.

2.- This is not a good timing to start feeding therapy, wait till she has her palate repaired. Once repaired and everything else (not aspirating, reflux under control and proper gastric emptying) is under control, you can start regular feeding therapies.

3.- Consuming 4 cans of pediasure at night sounds outrageous for a little girl like Zoya. 960 calories consumed at night is like eating three and a half slices of a medium supreme pizza, no wonder why she feels nauseated. 240 calories spread through the day is like eating a medium slice of cheese pizza in the whole day. This totally doesn't make sense to me.

4.- You certainly need a Dietitian as you mentioned plus a GI Doctor too. Reflux (which is very painful) needs to be addresed, a PPI should be a drug of choice. A swallow study would be appropiate to rule out aspiration (which is painful and dangerous). A gastric emptying study would give you clues of why she is not gaining weight despite all the calories being pushed. Allergies and milk intolerance tests would be useful too, to fing the appropiate formula for her. They need to help you calculate her calories needs based on age, weight and level of activity plus water/liquids intake need to be calculated too; this is often a very common neglected area, you should be surprised as how much water/liquids our body needs aside from the formula that contains a lot of water too. Elemental formulas are broken down and are better digested, helping with the DGE.

Are you still reading? LOL

5.-24/7 continuous feeding should be considered. it is a myth that kids do not learn to eat while on continuous feeds and/or on a g-tube. I'm in a support group where many kids with failure to thrive and on g-tubes have failed to grow on bolus feedings but have grow beautifully on continuous feedings, I have a whole community of people supporting what I'm writing. All these kids learn to eat orally but all that requires from us as parents is patience, a lot of patience. I know it sounds crazy only to think that you are going to be feeding Zoya continuously but with the proper equipment it would be a breeze. For optimal results you will need a Zevex enteral infinity pump (lightest pump in the market), a Zevex super mini back pack to carry the pump and 500ml Zevex enteral bags to fit in the super mini backpack. Based on Zoya's weight she should qualify for this pump and try to buy it better that renting it, it is usually cheaper to pay the copay for buying it let's say $380 that paying $65 a month for renting it.

6.- You need to look for help as other recommended, on Medicaid waivers, UHC Children's Foundation Grant, Oley Foundation (has a list of enteral products for donation, you just have to pay for shipping) and even Craigslist (you can get unexpensive formula and even free formula, you just need to keep looking everyday till you find something.

Goog luck with UHC insurance, it is the second time we are on it and the formula is not covered even if going thru a g-tube. Crazy, but the supplies are covered. It is only covered for inborn errors of metabolism.

Is you UHC an HMO?, if it is a PPO you don't need a referal to see a GI or a Dietitian.

I hope I didn't overwhelm you I only want Zoya to grow healthy.


Anonymous said...

Do you have to use the Pediasure? Colin had weight gain issues and we eventually used the Wal-Mart or Kroger brand because they were cheaper, even with the Pediasure coupons. Our nutritionist told us there was little difference between the kind you drink and the eneteral(?) stuff. (Colin didn't have a feeding tube, but someone gave us some enteral stuff they no longer needed and he drank it.)

Also, there is something called Duocal that you can add to almost anything she eats (when she does eat).

I, too, am having issues forgiving Colin's birthmom for his FAS. We have had an open adoption (started before he was diagnosed). I finally broke down and wrote her a letter telling her how angry I was. I didn't get the response I wanted, but at least I let her know how I feel. Could you write a letter to Zoya's birthmom, even if there is no way to get it to her? maybe just writing it would be therapeutic.


Rohan said...

No advice (although it looks like there are some great suggestions above), just wanted to say that you are an inspiration!

Anonymous said...

Prayers being said for you and your family!

Alice said...

Praying for you and Zoya. hang in there. You are doing an amazing job!!!

Anonymous said...

Adding my plug for Amy Puls at TW! She is amazingly knowledgeable and I have seen great things with the kiddos she works with :) Kathy Soland at TW does feeding therapy when you are ready for it, but the priority is nutrition an weight gain! Amy works closely with many of the Docs in Tulsa and can facilitate the other referrals you need for gastric emptying study, swallow study etc etc. And selfishly I want to see the Urban clan again! Call if you have any questions! Rachel O