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.