The Top 5 Benefit of Children's Hospitals from a Parent's Perspective

Children's hospitals are a popular cause to support, whether it's rounding up your change at the grocery store or writing a six figure check.  (Or a pro-athlete photo op?  But I digress.)  If you're anything like I was six years ago -- meaning, someone who never had a reason to spend time in a children's hospital - you have a generally warm and fuzzy feeling about children's hospitals, but probably have never stopped to think about why they exist, or what benefit they provide that is any different from a regular hospital.  So for those who are curious, I am writing a top 5 post about the benefits of a children's hospital from the perspective of a special needs parent:

1.  Expertise - Joshua's two main diagnoses (4q deletion syndrome and Pierre Robin Sequence) are extremely rare - when we tell them to residents or new doctors, the docs often whip out their Smart phones to give themselves a quick refresher.  For kids with rare conditions or complicated health needs, it is better to be at the place that is a magnet (often for hundreds of miles around) for other kids with these same complicated health needs, because then the doctors will have a much better idea of what's going on and what to do for you.  When Josh was born, the Reno docs decided to fly Josh 500 miles away to a children's hospital for this very reason.  On vacation, when we have occasion to visit an ER or Urgent Care, they almost always ask me why I didn't just take him to the Children's hospital - even when there isn't a children's hospital in the same town.  Both parents and doctors feel better having medically complex kids cared for by pediatric experts, and these docs are usually housed at children's hospitals.

2.  Electonic Doctor note sharing / Teams - When your child has multiple specialist doctors, it really helps if they can see each other's notes and talk face to face about the best way to handle a situation.  For example, it was helpful to have our ENT (who interpreted sleep study results) talk directly to the craniofacial surgeon (who repaired Josh's cleft palate) about how the palate repair would affect Josh's ability to breathe.  It was helpful when multiple surgeries needed to be done around the same time and the doctors could coordinate so we just had one anesthesia and one hospitalization.  When your child's pediatric specialists are not affiliated with a children's hospital, then they often rely on the parents to communicate what's going on with the child - and while special needs parents often become extremely knowledgeable about their child's condition and do an adequate job of filling the different doctors in on developments, we just can't communicate things the same way as two doctors talking directly to each other.

3.  Decor / Child Life -  For Josh, it makes a huge, positive difference in his anxiety level when as much as possible of the hospital sensory experience is designed to be child friendly and soothing.  When the lobby is decorated in child friendly colors, there are cartoon animals painted on the walls in the exam room, there are volunteers playing live music out in the corridor, and there is a train table in the pre-op waiting room.  When the TVs for admitted patients have multiple cartoon channels and the Child Life department has extensive toys and books available for kids of all ages and abilities.  Similarly, it makes a big difference when doctors are willing to take a minute to help make the kid comfortable - introduce themself, let them touch the stethoscope, explain what will happen next - before they dive into the exam.  And it seems like prioritizing the comfort of the kid over absolute maximum efficiency happens more often at children's hospitals than elsewhere.

4.  Convenience - Josh currently sees 7 doctors at least once per year (for those who are wondering:  ophthalmologist, neurologist, ENT, plastic surgeon, GI, pulmonologist, and pediatrician), and a few others from time to time as things come up (geneticist, orthopedist, dermatologist, urologist, developmental pediatrician, and pediatric surgeon).  This means we're going to the doctor dozens of times per year just for well checks.  If all the doctors are housed under the same roof of a children's hospital, I learn pretty quickly where I'm going and how long it will take to get there and what the parking situation is and how long to expect to wait and whether they have a coffee shop, etc.  If the practices are scattered all over town with different staffs and situations in each place, I have to spend a lot of extra time figuring out logistics and leaving buffer time (in case this is the office that runs right on time rather than consistenly an hour behind).

5.  Billing - That long list of doctors above means we run up a bill pretty quickly each time our health insurance year starts over, and children's hospitals do two things that are extremely helpful with this.  First, they consolidate all the expenses into two big bills - one from the hospital itself and one from the doctor's group - this simplifies (see #4) and it also gives them a good picture of your overall health expenses.  Second, they provide extremely generous, zero interest payment plans as you pay back this consolidated bill.  They are not non-profit in name only - they really do prioritize caring for kids and they don't want financial hardship to be a barrier to kids getting the care they need.  (At least that has been our experience with CHKD in Virginia.)

Those are my top 5.  I recognize that some of these are more compelling than others -- the expertise thing matters a whole lot more than the convenience thing -- but at the end of the day, they all matter, so they all make the list.  Friends, what would you add?

G-Button out!

It's official:  Joshua's G-button is out!

A recent picture of Josh that shows his G-button, at Lake Tahoe.  

We saw his GI doctor yesterday and got the "all clear".  The orginial plan was for me to take it out at home last night, where he could be comfortable, but unfortunately we had a button malfunction and I couldn't get it out.  It's kind of funny to spend 5 years doing everything you can to keep the button in, and then when you're finally ready to take it out, it won't budge.  (It's like ray-ee-ain, on your wedding day.)  So there was some frustration and frantic message boarding on my part (trying to figure out what was wrong with the button), and then resignation that we would need to go back in to the doctor's office.  And then, probably thanks to all my fiddling with it the night before, the balloon on the button burst and it came out on its own!  And bonus:  Josh thought he did it, so he's feeling very pleased about the whole situation.  (I thought the button coming out and not being replaced by a new one was going to be a hard moment for him.) Then, as planned, a gauze bandage went on, and we celebrated with cupcakes with green frosting and sprinkles (Josh's request).

Celebration cupcake.

I've done some posts in the past about Joshua's feeding tube, including why he has a feeding tube, what I wish i would've known about the feeding tube from the beginning, how his eating is still very limited, and the excitement when we first found out that we could stop using the feeding tube.  These posts summarize how I feel about the whole situation:  grateful that Josh had the feeding tube while he needed it, and ecstatic that he got to the point where he no longer needed it.  Today I just want to post some pictures to memorialize the whole experience.

Joshua's first week, hooked up to all the machines in the NICU in Salt Lake City.

Christmas baby!  2 months old.  I got to change the NG tube while staying in a VRBO with the family in San Diego.

Love those little baby smiles.  

Big, beautiful eyes.  He still makes this expression with his mouth when he's unsure about something.  

We were living in Virginia Beach for most of Joshua's early life.  60 ML tube feeding syringes make excellent sand toys.  (This is supposed to be the Nebraska state capitol.)

First day post-op after getting a G-button placed, age 4 months.  No more tube coming out of the nose!

Kenny giving Josh a bath around age 6 months.  Plenty of baby fat, thanks to the feeding tube.

Josh was not orally eating by his first birthday, so mom overcompensated by getting him the biggest smash cupcake in all the land to get his hands and face dirty.  

First birthday bath following first birthday smash cupcake.  This is one of my very favorite pics of Joshua.

Lots of doctors visits, tests, and procedures as part of all of this.  Here is Joshua being a good sport during one of his nine sleep studies.

North Carolina, c'mon and raise up, take your shirt off, twist it round your head, spin it like a helicopter.

Lots of new pretend play ideas, too, including being a doctor...

...tube feeding stuffed animals (this bear had his own Mic-Key button - thanks Judy Corliss!)...

...and doing feeding therapy on the stuffed shark..

Josh proudly showing off his G-button, age 2.

All of us got very comfortable doing regular life activities with the button, including the important evening activity of wrestling with dad.  

Eating is still a challenge, but for the last year, Josh has been able to to eat (and drink) enough to keep growing and stay healthy, so now we get to take the tube out!

I do have 2 prayers requests:
1)  For healing of the stoma (that's the empty hole where the G-button used to be) - that there won't be infections, that if he needs surgery (he probably will) that it will be a smooth and uncomplicated process, etc.
2)  For Josh - he's handling it super well right now, but I think there might be some ups and downs this weekend.  Imagine telling a 4 year old that you're taking out their belly button - this is what it feels like to him.  He's had it for as long as he can remember and it seems to him like a body part.  Prayers for his adjustment to no G-button.

Thank you all for prayers and encouragement along the way.  I'll probably do another blog in a few weeks about how it's all going - but for today, signing off and celebrating with cupcakes!