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On G-Tubes and Heart Defects

Insurance companies.

I am grateful for ours. Really. We maxed out our out-of-pocket expenses in one fell swoop, with Apollo’s MRI back in January (has it only been since January since we’ve been living in the land of heart defects? It seems like so much longer…) They have paid for Apollo’s heart surgery and hospitalizations with no questions. And they pay for Apollo’s formula and feeding tube supplies.

This requires a 20 minute phone call every month to refill his prescription for feeding supplies. During this phone call I have to account for every can of formula and every syringe and piece of gauze I have used. I have to give the person on the other end of the phone exactly how many of everything I have left. This month’s call included my brashly asking for 4 catheter adapters instead of the “allowed” two. The one we brought home from the hospital lasted about 6 weeks before it even showed signs of wear. The cheaper version our insurance company sends only lasts two days before cracking and becoming useless. I was told that we needed to make them last two weeks. I have also been told that the malfunctions we’ve had with his pump (303: Contact Tech Support) has never happened before. Yeah, right. Oh, and bag malfunctions? Those are my fault too. All of this leads to a stressful call that, already after only three months, I completely dread.

Oh, and a week or two ago we upped Apollo’s feedings slightly. He was obviously still hungry after being tube-fed, so we started giving him 20 ml more per feeding. That did the trick and he was no longer hungry. When I mentioned it to dietician at Children’s, she whipped out her calculator to do some quick math. She informed me that Apollo was gaining 17 grams per day, when an average 2-year-old should only be gaining 7-8 grams per day. But he obviously has a lot of catch-up growth to do, so it’s fine.

“I assume that’s fine to do?” I asked. “Up his feedings a bit when he’s obviously hungry?”

The dietician said, no! We should not just feed Apollo more when he’s hungry. We should contact his doctor who will whip out his calculator and find out how many grams he’s gaining per day and base his feedings on that. I am sure this is a very good and even necessary system for a child who is disabled and can’t communicate…but for an active two-year old? You saw the photo of him from Children’s. While he’s packed on 4 pounds since his heart surgery in March (most of that after his g-tube placement) he’s not exactly what you’d call “chubby”.

Can you imagine having this conversation if he weren’t tube-fed?

Me: Doctor, I just fed Apollo his two jars of baby food and 1/4 cup of corn for dinner, but he still seems hungry…should I feed him more?

Doctor: Hang on, let me mathematically calculate how many calories he is taking in and how many grams per day he is gaining, and I’ll get back to you…

No way, that would be completely ludicrous.  If your kid looked like Apollo (meaning he wasn’t obese) and you said he was still hungry after his “allotted feeding” the doctor would tell you to keep giving him more– as long as it’s nutritious.

As far as heart defects go, it seems like a pretty lonely world…while heart defects in themselves are common, Apollo’s is rare and displays itself in very unique ways. Primarily respiratory and feeding issues. He’s had heart surgery to “repair” his heart, but he still can’t eat. His heart, thankfully, functions just fine- but at the expense of his esophagus.

When he was admitted to Children’s in April, he was admitted by a pulmonologist. She ordered a CT scan which found an artery was compressing his esophagus…so a cardiologist was called in. The cardiologist said he can’t fix it, and sent him to a GI doctor. The GI doctor put in a g-tube to feed him and said he can’t fix the esophagus, it’s a cardiac issue. And around and around we go…

Who looks over the whole person? Who is looking out for Apollo?

We got a letter from our insurance company earlier this week that offered the assistance of a “case manager” to help his “complex health care needs“. It read, in part: Navigating the health care system can be a challenge in the best of circumstances, but when you’re facing a health crisis, it can be even more daunting…

And I think, wow, that sounds so…serious.

And while I’m thankful for our insurance covering his surgeries and hospitalizations, there are so many other expenses with a sick child. Insurance doesn’t cover the waterproof blanket we had to buy for his feedings because his medicine port keeps popping open and leaking formula and stomach juices all over the couch. It doesn’t pay for gas for our 200 mile round trip doctor’s visits or hotel rooms when we have to go a day early for surgeries. It doesn’t pay for the bigger diaper bag I just had to buy to carry all of his feeding stuff, or for the sport utility stroller we just bought so he can stay active with our family- even during feedings or exhaustion due to shortness of breath.

{And just to cover my bases here, these were simply thoughts that have been rambling through my head lately…this is not a subtle hint that we need money. I am just trying to describe life with a sick child.}

 

39 Comments

  1. Kim

    Have you tried wrapping the end of his tub with press and seal? We use this at the hospital to keep kids G-tubes closed and it works great!
    Kim

  2. Samantha

    While my daughter was never as sick as Apollo is (and she’s doing great now)–I understand some of your stress about feedings. It seems like for a mother to feed her child is the most basic and natural form of love. And when it becomes difficult and the child is not gaining weight–it is hard in so many ways that have nothing to do with the actual situation per se. And there’s no copay or insurance coverage to manage the emotional costs to any of the people involved.

    I pray for all of you that as Apollo gets older he grows well and is able to transition to by mouth nutrition. When my daughter finally started eating well–it was like this giant exhalation when I didn’t know I’d been holding my breath.

  3. Jo

    That is so frustrating. Seems like we constantly have little things arise that cost more money than we expected or budgeted but it is never anything as big as a child’s needs. it is always little stuff,stuff that really can be done later, or done without.How frustrating to have to document every big of his feeding for the insurance, only to have them argue. I am glad that you have good insurance coverage, but sorry you have to dread that call. Would be wonderful if it was a quick, easy phone call.

  4. Kim Shafer

    do you hear the feeding pump beep in your sleep? I know I do 🙂 Your not complaining- your venting. Unless you have walked in similar shoes you have no idea all of the ramifications of having a sick child or in our case a child with a rare genetic syndrome. Leo also has a feeding tube and we also have experienced stomach juices and formula spill out. You may already do this- but every time you go to a doctor or are in the hospital- ask for extra supplies- nurses are usually generous. Continuing to pray for Apollo, I know it is a long tiring and sometimes lonely road you are traveling.

    • bakersdozenandapolloxiv

      I’ve recently been experimenting with just using large syringes instead of the pump…I like it a whole lot better.

  5. kafka

    If you aren’t happy with the supplies your insurance covers, maybe you should pay for your own? Seems silly to complain when some peoples insurance doesn’t even cover what yours does. Having so many kids probably is really expensive. Not sure if you buy bottled water, but recycling adds up some extra money to put towards the gas.

    • bakersdozenandapolloxiv

      We do buy our own, actually. I meant to put that in there (we’ve ordered a bunch of stuff off of Amazon!). I must have forgotten to add that. I also meant to add I am so thankful we have the resources to buy what we need. So many people don’t and I think about them often. No bottled water for us 🙂

  6. C Smith

    We were “lucky” enough (if you can call any special need lucky) that our daughter’s medical problems qualified her for a program in our state for medically needy children. It meant that whatever was not covered by our family health care, was covered by a state fund. It paid for our deductibles and things like her $37 each bottles and her $30 a can formula. They even have a transportation program that will bus us the 65 miles to and from her bi-monthly hospital visits. Unfortunately, they will only take the child and parent so if I have to take any other kids with us, we take our own van. $40-$60 dollars in gas, plus parking. Even with all of this help, which I am very grateful for, we are still out-of-pocket for tons of other, unexpected things. You’re right, it can really add up.

  7. Kate

    Wow, a few people might not understand the purpose of Renee’s posts. Feel free to correct me if i am mistaken, Renee, but this appears to be your personal therapeutic writing which connects you to others in ways we all need.

    Please, people, be kind! Love one another! This is not a forum for attacking or even questioning (which may come across as attacking) another family! They are real people!

  8. Veronica

    I have so much I could say (nice stuff, I promise!) but I will just point this out real quick: I’m pretty sure you can claim the gas mileage on your taxes as a medical expense – we’ve had to do this before…Like you said, it all adds up, and every little bit back can help too 🙂

  9. Shannon

    Prayers for your whole family. My best friend has a little girl who is 1of 10 in the world with this particular issue where her lungs are way up high and half the size they should be and pretty much no diaphragm. She has over come so much more then the docs ever thought would be possible for her. Gtube and trach and she is thriving. Yes there are still up hill battles but you can do it. We are also in Seattle area . We have some of the best docs here and they do truely care. These are the days that define us, you can do it!!
    ~shannon

  10. Melody

    I’ve been reading your blog for a number of years now, though I don’t tend to comment since I usually am reading on my phone’s browser. My family just moved to Seattle from the Chicago area a few weeks ago. If you ever need a place to stay in the city, please send me an email. We have a comfy sofabed and my girls (ages 7 and 12) love having company.

    I’m expecting #3 this fall and have hinted to my mother that there is this amazing newborn photographer not all that far away if she wants to get a photo shoot for us for a present 🙂

  11. Heather B

    I think you’re perfectly justified to complain that your insurance company provides materials your child needs to survive that don’t work how or as long as they are supposed to. You are actually paying for the service unlike people without insurance. I can certainly sympathize with people facing a medical crisis with less or no insurance, but that doesn’t mean I shouldn’t and you shouldn’t get what you pay for. It is SOOOO frustrating when the system and people on the other end of the phone seem to lack common sense. You must have the patience of a saint and the time of a person with no responsibilities to deal with that stuff. I know our fight over the rsv shot took about 10 years off my life and it was all because of people not doing their job correctly and then lacking common sense to fix it.

    And REALLY?? We need a calculator to decide if it’s ok to feed a hungry child?? Even if he was obese if the poor kid is legitimately hungry how’s another apple going to hurt versus create more psychological issues with food. It’s not like you’re stuffing cookie dough down the tube!

    After the tube feeding if he’s still really hungry do you think he’d be more willing to try food by mouth?

    • bakersdozenandapolloxiv

      Heather, yes, we pay a LOT of money for our insurance. And I had no idea I was only “allowed” two catheter adapters…it’s just so crazy. No, being hungry doesn’t help him eat more since it’s a physical issue keeping him from eating. Before he was tube-fed he would just scream and scream at mealtimes because he was so hungry but couldn’t get the food down.

  12. Jo

    It is true that some insurance companies do not pay for certain things,but that does not change your frustration about your insurance. its definitely good to vent here, all of your readers want to support you and we dont mind reading the hard stuff along with the good. We know you are a real person, you are an amazing person to be able to patiently handle what you go through. someone recently said to me at swim, “Well the government pays all your bills including medical right? So you dont have no problems ever.” Being in the mil is FAR from having the government pay my bills, and our insurance is good but we choose to use retiree insurance so we pay out of pocket, a deductible and co pay. I tried to tell her this and she just said, “thats now what I heard.” Ok well I guess then its true, the government pays my bills. Sometimes people have misconceptions! If you are paying for your insurance, you are already out of pocket enormously! And whatever they pay for, just helps you out some, allows you gas money to get to all the appts. There is no way it can all be made up for, and I am sure it is a strain for you. Would be helpful if you didnt have the fight ins on top of that.

  13. Samantha

    I think it is very unfortunate that in a country with so many resources and blessings that parents have to worry and agonize over expenses necessary to ensure a reasonable quality of life for their ill child. Apollo has more than enough to deal with without his Mama having to waste precious time with insurance companies.

    • bakersdozenandapolloxiv

      Samantha, I am just thankful we can buy the “extra” supplies we need. Every time we do, I think about families in the same situation who can’t afford them 🙁

  14. Emily from NZ

    Wow. That is crazy! It’s almost like the insurance company is like ‘Yep, we saved his life by paying for an operation, but now we can’t be bothered paying for the medical supplies to keep him healthy’. Wouldn’t it just be cheaper for them to give you what you need than to pay for a person to be on the phone arguing and accounting for everything? And even if you were ‘stealing’ from them, what are you going to do with the extras? I can’t imagine there is much of a ‘black market’ for gauze! And the doctors! I can sort of understand why they want to be careful and monitor his feedings, but if he’s hungry, FEED HIM! Poor old Apollo!
    You are so strong Renee! I hope this all works out. I will continue to pray for you guys 🙂

  15. The Groundskeeper

    I know that he is no longer a baby or young toddler, and I’m not sure what is in the forumla he is being fed, but would breastmilk be an (more cost effective) alterative? I’m thinking that it is usually higher in calories, though I’m assuming you have stopped feeding him that way already. Just thinking out loud here.

    • bakersdozenandapolloxiv

      The Groundskeeper- He is still breastfeeding. As far as formula vs. breastmilk, the formula he is on is high calorie- 30 calories per ounce instead of 20. He needs to pack on weight quickly to help his airway grow.

      • The Groundskeeper

        Thanks. I didn’t know that there was an actual calorie count for breastmilk. I also wasn’t sure how his swallowing affected the feedings, so if it was even still possible. You really are doing a great job.

  16. C Smith

    I really do not understand people making comments about getting “free” stuff, and the insurance company paying for everything. I can’t speak for you, but we pay over $400 dollars a month for our coverage, and rarely come close to using $5000 a year in medical care. Insurance companies make a profit, which means that overall we pay them more than they pay out, a lot more.

    • bakersdozenandapolloxiv

      We pay a whole lot more that that for our insurance! And, of course, we have deductibles and co-pays, which really add up since Apollo sees doctors 2-6 times a month most months. And co-pays on his prescriptions too.

  17. Kelly

    we have previously touched base on a discussion board about double aortic arches. my son was born with one…and his was operated on at 8 days old. we don’t deal with all of the complexities that you and apollo do…but life can be quite difficult none the less.
    i just wanted to say something about the “case manager.” we were assigned one about a year ago. i suppose after a few bronchoscopes, appointments with so many different specialists….pediatric cardiologist, ent, pulmonary, etc, etc…you hit a certain monetary level and they send one your way. anyway…back on topic. the nurse who is our “case manager” is fantastic. whenever i have questions, need approvals for insurance (because our specialists are “out of network”), she is amazing. it really has been a true blessing in disguise.
    i hope that whoever that person ends up being for you…that he or she truly looks out for apollo!
    best of luck and many prayers for what you are dealing with right now.

    • bakersdozenandapolloxiv

      Kelly- thank you for this info! We are/were kind of nervous about using a health care manager supplied by the insurance company…a bit worried it might be a conflict of interest. It’s is great to hear about your experience.

  18. Nicole

    Who looks over the whole person? Who is looking out for Apollo?…..You do! And you are doing a GREAT job of it! I’m sure Apollo would not have survived this long in many MANY homes.

    Give me your dietitians phone number…I’d like to give them a piece of my mind. (just joking…but honestly how can someone be so stupid.) I have my hands full with medical phone calls my self.

    I’ve been meaning to mention to you an idea. Although Apollo’s dietitian would probably not approve…I just started making my own Kefir. It is so easy to make and so very good for you. I wondered if you started giving it to Apollo if it would help with his diarrhea.

    Keep up the good work Mama! P.S. I wonder if you can at least deduct other medical expenses not covered by your insurance on your tax return? I’ve been saving my receipts for Josiah just in case I can. I haven’t looked into it yet.

    • bakersdozenandapolloxiv

      Nicole, thanks for your input. Apollo is actually dairy-free (has been since ten months) so it will be a while before we can try kefir.

  19. Kerri

    I can totally relate! One of our sons was on a feeding tube for a couple of years. Before that he had an NG tube (a tube going up through his nose and down into his tummy). At that time he was vomitting 3 to 5 times *each* day. Again, for no known reason. He was allowed to get 4 NG tubes a month. Now I know that sounds perfectly reasonable, that’s one a week! But, if a tube comes up, it can not be put back down, a new one must be placed. Imagine my surprise when I called insurance to order a couple more and was told he already got his 4 and can’t have any more. Yes, but he’s 9 months old, and throws up 3 to 5 times a day and sometimes the tube comes up with the stomach contents….and as you know it can’t be put down again! UGH! They gave me a hassle over it. As if I was secretly trying to gather up a stash so I can sell it on the black market or something!!!! Ha, ha.

    I’m sorry you have to go through all of this. Although my son didn’t have a heart deffect it was soooo hard for others to understand that we were hurting, tired and pretty much at our wits end. All they could see was this very happy little boy in front of them. They weren’t there during the 11pm and 3am feedings. They weren’t there trying to get out the door with his homemade fomula (he couldn’t tolerate any of the specialized stuff), his feeding pump and the much needed change of clothing. Nor were they there as we would have to tell our other children to stop laughing, because if they got our son laughing after one of his feedings it would cause him to vomit…or no playing after a feeding either (throw up), or by golly don’t make him cry either…throw up. Oy. Ask any of my older kids about that time in their life! YES it’s hard. No one is there, *right* there as you go through all of the every day in and outs.

    Hang in there. I’ll be praying for your family.

    Kerri

    • bakersdozenandapolloxiv

      Yes…even the “but he doesn’t look sick” or “he looks so healthy” comments hurt. I know people are trying to be kind. I get that. But it makes me feel like they think I am blowing things out of proportion…And, of course, I’d rather he looks healthy than sick. But none of that changes the reality.

  20. Elizabeth

    I, unfortuantely, know exactly how all this feels. While my 7 year old son doesn’t have a heart issue (well, acutally, he does have a bicupsid aortic valvue, but it only needs to be monitored once a year) he has been on a two year battle with cancer. Inital diagnosis, 6 month remission, then a relaspe in March. Today is day 39 in the hospital after a stem cell transplant and he finally gets to go home this afternoon! With an NG-tube, a central line which was just taken out, and bags of medication working with all the medical personal and insurance company can be daunting. Hang in there!!

    • bakersdozenandapolloxiv

      Ugh. I’m so sorry to hear about your son. It’s impossible to spend time in a children’s hospital and not fear cancer. What a horrible thing for you son to have to endure. My sister-in-law just had a stem cell transplant a week or so again. Cancer is so heartbreaking.

  21. Sally

    A few lines of your post sent tremors through me, remembering when my then one-year-old gagged on ANY food she tried to swallow besides breastmilk – and reminded me to be INFINATELY grateful it turned out to be a texture sensitivity! We are praying for you all still, even the seemingly “smaller” (but sometimes just as frustrating!!!) things like dealing with insurance.

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