It’s 11:00 p.m. I open the door to Reagan’s dark room and step on the wood floors, hoping they don’t creak too loud. Rob walks in behind me, IV pole in hand…four little paws tap behind Rob.
Reagan’s room is dark. The ocean sound machine is on, and her lullaby playlist, that we’ve played for her since she was born, is on repeat. As I unhinge and lower the top portion of her crib, she moves and makes a noise as if it’s startled her a bit, even though, this is part of her routine. She sighs as if to say, “not again…”
I gently pick her up, she makes a noise and plops her head on my shoulder. Rob has a blanket ready to put on my arm that her head can rest on. She likes to lay her head on the blanket, it’s more soft and comfortable than my arm. Like Rob has done for the past 3 1/2 months, he hooks Reagan’s G-tube up and presses the feeding pump to begin feeding and lays a blanket over us.
We are both praying internally for this feeding to go well. She’s been vomiting on and off for three weeks. She has not gotten enough liquid the past couple days, her lips are dry, and we are worried that she is becoming dehydrated. As I sat there and rocked her, I thought it smelled like formula coming from her nose. I found it odd, but drifted to sleep rocking my sleeping baby.
Thirty minutes later, the machine beeps. Her feeding is complete. Rob told me he was thanking God during those thirty minutes, thanking him that Reagan was tolerating her food, was able to take the entire 7 oz without waking up. He comes to take the blanket off and it’s wet. He goes to remove the tube, and it was never hooked completely in. Reagan’s clothes are soaked…and so are mine.
This is a snippet of life. No matter how hard we try to do things right, they just end up a soaked mess. Now the question is, do we feed her while she’s in her wet clothes and sleeping? If we do that and change her after her feeding, she could be too full and throw up. Ok, so do we change her now and hope she stays asleep for round two of feeding? Basically we came to the conclusion that our girl should not be sitting in wet clothes, so change her we did.
She woke up. The feeding did not go well. I didn’t know if she was uncomfortable with the feeding, or if she was just upset that she was awake, but we stopped it short of 4 oz. We debated, do we keep going and risk vomit, or try to keep this small amount of liquid in. We chose for her not to vomit. She did not get enough liquid that day, she threw up, and discarded 4 oz of formula, after we already lowered her formula recipe an additional 4 oz. that day.
In the morning, her diaper was dry. Her lips were even more dry. We gave her Pedialyte in the morning, along with 5oz of formula. We know the signs and it’s all she could handle. After her morning therapy sessions, I came home and gave her two more oz. Breakfast was finally complete, at 10:30 a.m.
She kept all her food down on Thursday. But it required us splitting every single feeding up. Last night, we fed her 4 oz, and then stopped, and I rocked her for 10 minutes. Then, another three went in, and she went to sleep.
Do you know what it’s like to have your child’s life confined to a perfect balance of fluid, calories and medicine. There seems to be no room for error, yet, nothing is going right! There is error all over the place. Her geneticist spoke with me yesterday, she was concerned that her intake was not enough.
Me: Dr. C, can Reagan have another crisis if she doesn’t get enough?
Dr. C: Yes, and that’s why I’m concerned. She needs to keep her formula down. If she doesn’t keep it down today, you will have to go to the hospital and get fluid via IV.
Reagan kept her formula down. She was also prescribed a medication to help move things along. Part of the problem, she was getting too full. B/c of the low tone her body now has on the outside…we are realizing she also has low town on the inside. The body part that keeps your food down and gives you the ability not to vomit, is not very strong for Reagan. The parts of the body that help move food out the other way, is slow and not working like it should. I feel like her body is failing her in so many ways. But, this new med she’s on to help strengthen her insides to work right has seemed to do it’s job. It’s her ninth medication and she gets it three times a day.
As I typed the above paragraph, I look at the monitor and Reagan is waking up from her nap, it’s 11:20 a.m., it’s two hours since she last ate, and she’s laying in a puddle of vomit.
Just when we think things are maybe improving, and this new medication will work…and we’ve split up her feedings over hours and into less volume, there we are…with formula all over the place, fumbling in the dark, just like the other night. It’s every. single. day.
That’s one issue.
Yesterday I received notification from Reagan’s therapy place that even though our insurance co. confirmed with our Dr. that they were allowing 72 therapies per discipline, and the rehab place also verified, that what Humana really meant, was 72 total. The problem with that line of thinking is that the rehab place called to verify that benefit, and as a result of satisfactory verification, they scheduled Reagan to have 11 therapies a week. We have had 81 therapies since the end of May, which is above the newly approved amount of 72 total. We are now self paying. And this is what the Reagan Fund is all about…and we will now be tapping into it. Please consider donating. Reagan’s Dr. that oversees her therapies is working on getting another approval…but she’s retiring on Friday. Yeah, as in a week from today. And the closest Dr.’s are in Tampa or Jacksonville. We can see the Dr. in Tampa at the end of October.
UF Health in Jacksonville has refused to return my phone calls and we have resulted in playing telephone through an intermediary answering service at that location. I resorted to letting them know I’d be calling hourly, which seemed to work in getting them to relay a message. I have called every single day for one week, and have been told the same thing for a week, “someone should call you tomorrow, if they don’t, call back.” Apparently, daily calls weren’t enough, I had to call hourly. Here’s the message from UF Health “The Dr. was out, but given that Reagan’s case is complex (please note, this is the Dr.’s specialty)…the Dr. will have to take some time in responding as she considers Reagan’s case.” My response: “That seems like a vague way of saying you are not interested. In addition, no one from this Dr.’s office has contacted me to ask ONE question about my daughter. I agree, her case is complex, but this is what the Dr. does, and all I’m trying to do is schedule one appointment, and NO ONE has called me personally to talk to me. I am met with this wall of resistance and the game of telephone.” Maybe, that’s God trying to tell us that this is not the place. But waiting until October? Really?!! Who will help us overcome these insurance obstacles, who will write prescriptions for walkers or standers for Reagan? Who will answer the phone call if our insurance co. calls after our current Dr. leaves next Friday?
We can not take much more. When we think God is showing up, it doesn’t seem like he is. That is the reason for our Psalms. That is the reason for our despair. The most basic of things, feeding your child, we can not do. We do everything we think is right, it’s not working. How did God feel like we were the best parents for Reagan?
After I wrote all of this, I got a call from Nemours…our insurance co. has denied any more therapy for the remainder of the year. They will not pull the recorded phone call btw Humana and Reagan’s Dr., b/c they say they don’t have a record of it (conveniently). However, through that phone call, an authorization number was received AND used by the rehab place to confirm benefits and to schedule 72 therapies per discipline.
To say Rob and I are upset, mad, frustrated, at the end of our whits, with no clue what to do is quite an understatement.
A lot of people ask what they can do to help. I do not know how to answer that question. I keep saying to pray, but everyone has been doing that and here we are…at the bottom of our little mine shaft. I guess I can say you can donate to Reagan’s fund so that we are not stressed further by the financial impact this continues to have on our family. But realize there’s nothing you can do to fix this. There is nothing we can do to fix this. There’s only one person who can fix this, and I’m currently really mad at him.