Letter I will be sending to Vanderbilt

Some of you may have already seen my earlier draft, but here's my final draft that I will be sending to patient affairs and several other departments following our recent hospital stay. Please feel free to leave any input!

July 23, 2010


To Whom It May Concern:

I would like to take a moment to discuss my recent experience with Vanderbilt Children’s Hospital. I have had an overall dissatisfying experience despite the many wonderful facets of your institution, and I hope that, by sharing, I may improve the experience for other families in the future.

To begin, let me first tell you a little about my son. He was a surviving twin born at 23 weeks gestation who spent his first eight months of life in the NICU. He is now a curious, rambunctious two-year-old with multiple chronic medical issues. He, most notably, is diagnosed with pulmonary hypertension, atrial septal defects, broncho-pulmonary dysplasia, cerebellar hypoplasia, and a paralyzed vocal chord, and he requires supplemental O2, Viagra therapy, and a feeding tube in his daily life to maintain his health. We have scheduled, routine visits here at Vanderbilt with pulmonology, endocrinology, otolaryngology, audiology, and opthamology, and we routinely utilize specialists outside of Vanderbilt for cardiology and neurology.

I tell you all this because on Saturday, July 17, my son experienced a spontaneous apparent life threatening event of unknown etiology in our home, requiring me to resuscitate, and resulting in our first emergent transport, first ER visit, and first unplanned hospitalization in the 20 months he has been home from the NICU.

Upon arrival, the treatment team gathered information and began routine labs and a chest x-ray to determine what had caused the event, but the focus was quickly shifted to a thinly-veiled abuse investigation during which I was made to feel guilty until proven innocent.

I recognize and appreciate there are procedures in place to protect our children, and many times before I have been the one doing the investigating. I would have had no issues with the barrage of loaded questions or with my son being put through a full-skeletal x-ray and other exams, had someone simply said, “We’re sorry, this is standard operating procedure for any child with petechial hemorrhaging ,” or something comparable. I do, however, have a problem with being treated discourteously when there is overwhelming evidence to anyone who looks at the child, his behavioral responses, and his medical history, that our child is extremely well taken care of and remarkably healthy despite his chronic concerns, and I also take issue with being outright lied to about why the tests are being done in the first place. I understand that everyone is still feeling outrage regarding the pediatrician from Mt. Juliet who recently killed her adopted daughter, but every family cannot be blamed for one family’s very tragic, heartbreaking decisions. A little more communication, courtesy, and common sense could have gone a long way in making this already traumatic situation a little less stressful for us as a family, and I can only hope that every special needs family is not treated with the same manner of accusation and disrespect that we felt with our own special needs child.

Once the abuse allegations were put to rest, and the standard tests and an EKG came back normal, we were told we could go home. The doctors felt it had “probably just been a febrile seizure brought on by his current viral infection” and that he was fine to go home if I was comfortable. I was not comfortable. At that time, my son was still running a fever of 102.7-103.7 requiring ongoing Tylenol and Motrin, and he was experiencing infrequent, but present, apnea and desat spells. He was unable to eat food by mouth without coughing and gagging until he vomited. In addition to those things, please don’t forget my son had recently had a spontaneous ALTE at home that required resuscitation, and I was not content with him “probably being fine.” Listening to a doctor who said everything would “probably be fine” is why I now have a dead daughter and a son who’s had to fight so hard to live, so please forgive me for being a little extra cautious.

I want to add here that, as a mother of a chronic lung diseased child with cardiac issues, I am familiar with what is normal for him, and what is very much not normal for him. I know his breath sounds and his coloring. I know what my child looks like when he sats in the 50s or 60s. I know when I’m getting a false reading on the oximeter. I know how to tell by how blue my child is just how serious his current condition is. I am not an expert in all children, but I know my own child better than anyone else, and I know that, on Saturday, when I found him, he was not breathing and he was gray, nonresponsive, limp, and lifeless. I am not exaggerating the situation nor making light of it; it is what it is. That being said, I never felt as if anyone gave any credence to what I saw or did, as obviously I am just a mother, and one they had already labeled as a child abuser, no less.

My final complaint is the apparent lack of communication with my son’s specialists. When a chronically-ill child who has been medically stable suddenly stops breathing, it seems to me that consulting the child’s pulmonologist and cardiologist would be fairly routine steps in the treatment process, as well as possibly his ENT and neurologist as other potential diagnoses arise. I was extremely disappointed to find that, despite my verbal request to do so, my son’s cardiologist had not been notified of my son’s event or emergent hospitalization, especially considering she was on-call the weekend the event occurred. She instead came by after I alerted her to his hospitalization to do an evaluation of my son’s cardiac function based on her own concerns. My son’s regular pulmonologist also came by per my request after our attending had already offered to discharge us. Both specialists have been following my son since discharge from the NICU and have extensive knowledge of his history and patterns that could have been beneficial to the treatment process if utilized, and I would never have felt safe taking my son home following such a potentially devastating event without their input. I feel not seeking their input prior to attempting to discharge my son was medically negligent considering my son’s extensive medical history and the treatment team’s inability to determine a definitive etiology of the ALTE. I also repeatedly asked the team to contact the otolaryngology department to have someone come examine my son and make recommendations regarding any apnea and swallowing issues, and the team adamantly and repeatedly refused my request, instead opting to set up an outpatient visit the day after discharge. I did not find it safe or beneficial for any involved parties to return my son with an obviously nasty virus to the hospital to a waiting room filled with mostly well- and medically-fragile children, although I did follow through with the appointment as requested.

I would like to add, however, that despite my lack of satisfaction with much of my experience, we did receive excellent nursing care and care partner assistance during our stay, and I was surprisingly pleased with Katherine Shaw, the medical student assigned to our case. I very rarely have pleasant experiences with the residents, and that remained mostly true this visit, however, our medical student was honest with me each time she visited our room, and she exhibited an outstanding ability to work within the boundaries of her knowledge while still maintaining an air of intelligence, professionalism, and compassion. She also seemed more interested in gaining knowledge and experience than simply showing off that which she had already acquired, and that is a rare but welcome characteristic of a resident based on our previous experiences. Based on what we saw of her during our visit, she will potentially one day be the kind of doctor we would choose for our children, and it’s rare that I make that type of statement regarding a student, resident, or, to be completely honest, attending. We were grateful to have her on my son’s treatment team, and we feel she will be a great asset to your residency program.

Thank you for allowing me to voice my opinions on our stay. Hospitalization is never pleasant, but some very minor changes in how our son’s treatment was approached could have had a major impact on my feelings about this stay and Vanderbilt in general. At this time, however, I am left feeling disappointed, dissatisfied, and angry, and will in the future spend more time weighing the costs and benefits of traveling to more distant children’s hospitals in hopes of better service and commitment to the children and families served.

Thank you for your time, and for all the many good things you do.


Sincerely,




Mollie Sheppard, mother of Daxton Sheppard

 
Thoughts?

Going home today!

Look, Ma, no tubes, wires, or leads!

103.7 temp... but he's still one cool kid

Out of my hands.

Soooo, God has such a funny way of reminding me who's boss...

Just when I get life under control... under my control... The Great Puppet Master in the Sky strikes again.

Little TyTy came down with a cold + fever on Friday evening, and on Saturday both boys woke up a little hoarse and puny. I dosed them both with a little Benadryl and Tylenol as usual, and we all curled up on the couch and watched a little a whole stinking lot of Sesame Street and napped. Both boys were pretty lethargic, understandably so with a cold and some Benedryl on board. Ty woke up warm again so I stripped him down and he was playing with his toys, and Dax finally woke from his nap on the bean bag right at lunch time. I was wiping down his little table where he eats when I looked back over at him, only to see he had laid his head back down again. "Daaaax," I called. "Noooo sleeping. We have to eat some lunch now!" and I went over to wake him back up.

When I leaned over to kiss his little face, I saw that it was completely gray.

I picked him up and shook him, yelling his name. He was so, so gray, and his lips were completely blue.

He just flopped, completely limp. He was not breathing. He was completely unresponsive.

And the rest, as they say, really was just a blur.

I yelled out for Shep, over and over. I laid Dax down and started administering rescue breaths. I gave him sternum rubs as I was doing it hoping to jar him back awake.

Shep called 911. He yelled at Dax to wake up as he gave the dispatch Dax's info.

I just kept breathing for Dax and shaking him and begging him to breathe.

And then he did. Praise God, he did. I don't know how long it took; I don't know when. But he did.

I ran upstairs with him and put him on his oxygen and pulse oximeter, and I held him. When I placed him on his bed so I could look at him, he was still so limp, and so unresponsive, and so... not himself. But he was breathing.

When the First Responders arrived he was stable, and after their assessments he and I load into the ambulance for Dax's very first emergent ambulance ride since the day I went into labor with the him and his sister.

It was also his first real unscheduled "sick" visit. Ever.

And all I could think, ALL I could think, was what if I hadn't checked... What if we hadn't been right there... What if, what if, what if...

Thankfully he became more at himself during the ride, and, though he was lethargic, he was acting like Dax again when we settled into the room in the ER.

A rectal temp read 103. The other labs are drawn, and xrays are taken. Dax takes a nap, and we wait for answers.

And now it's Sunday afternoon, and we're in a room, and we're still waiting for answers.

The best educated guess is Dax obviously has a virus that precipitated either a major pulmonary episode or a febrile seizure. Apparently there will be no black and white "this is exactly what happened" diagnoses.

I'd sleep a whole lot better if there were.

But, for now, we're going to hang out in the hospital a while, to wait, and watch, and... be thankful...

Thankful the Lord continues to control the strings.

Birth story numero tres: The Demon

Since we're edging up on a very special birthday on July 30, I decided to finally finish a post I started about 11 months ago :) I never did tell you all about Tyler's original "birthday" and I think it's about time you heard it :)

So it was Wednesday, July 29, 2009, and I was under a lot of pressure (from those who did not have to push a big honking baby out of their respective vaginas) to have the baby on that particular day. Beth, Dax's home health nurse, wanted to win $1 for guessing the right date, and she had picked the 29th since it was both mine and Shep's and her and her husband's wedding anniversaries. My mother had told me under no uncertain terms that I had to have him before Thursday the 30th because that was most convenient for her, and my dear husband had told me that Wednesdays were most convenient for him. So I did what any reasonable person would do... I sat on my butt and squeezed my legs shut and told the baby to stay put. I don't do convenient ;)

But of course, I forgot that I have noncompliant children.

I didn't have a contraction all day, then around 3 or so I started having light ones.... But they were organized. 15 mins, 10 mins, 7 mins, 5 mins... They didn't hurt but they were there, and then around 9pm I started bleeding. We called our parents and packed our bags and got Dax squared away and headed to the hospital. The contractions were 3 minutes apart...

We get to the hospital and they check me and I'm dilated to 5. And the contractions stop. (I told you I have noncompliant children...)

I'm admitted anyways and they ship me to the labor and delivery floor. Shep and I walk for 45 minutes. Still no organized contractions, but when they do hit they hurt a little. Still not dilating more. My mom shows up and we all wait.

They asked me if I wanted an epidural... After having both the twins naturally, my answer was, without hesitation, oh hell yes!

I eventually got the epidural and then I took a nap in between IV alarms and people in and out... I was a little bummed that the contractions had stopped.

Except the contractions had not stopped. The epidural was just that good.

I should mention here that I love epidurals. Everyone should have one. They're amazing. I want one now! I could have an epidural baby every day!

At shift change the new nurse, Nurse A, walks in and starts to introduce herself, and then we both scream "AHHHHH" and hugged :) She was one of the nurses who took care of me when I was on bedrest on the high risk floor last year, and we love her and she's fantastic. We were so happy to have her!

Dr. L., or as I call him, Dr. R.(you'll have to figure that one out yourself), came in to see me around 7:45am or so and ordered a pitocin drip...

(Okay, some back story on the doctor. He was a brand new hire at my high risk OB, and I had just met him for the 1st time the week before. I was nervous because I was so close to delivery and here's this new doc... But he walks into the exam room at his office and introduces himself, and then says, "I speak Ching-rish, and you wirr probabry not unnastan moohs of wha I say." He was so cute and charming, and I liked him immediately (although "cute and charming" are characteristics I usually look for more in the one getting me pregnant, not the one delivering the baby!)

But I digress. And, I did not, in fact, understand anything else he said that day...

But we'll come back to him in a little bit...

So I'm still just lying around, hanging out with Shep and my mom, trying to figure out when the little monster would make his grand entrance. While we're waiting, two of our old friends from the NICU, Nurse B and the Speech Therapist, came down to say hello. Nurse B said she'd be honored to be in on Ty's delivery, since she was there for both my other two, and the speech therapist says she'd love to hang out, too, you know, in case of any speech therapy-related emergencies.

So I said, what the hell. Why not? And I'm not sure my vagina can perform without an audience, anyway. I'm fairly sure Dax's delivery was listed on TicketMaster.

So the doctor comes back and I haven't really progressed, so he decides to break my water. He does, and then asks me if it had already broken, because there wasn't much fluid.

I reply no, but then we figure it out...

A month prior I had, ahem, sprung a leak, that was checked and there was no amniotic fluid in it. Apparently over the course of the month my plumbing problems had become more interesting. Thankfully our Ty still had plenty of fluid left and all was well.

So then we wait some more.

FINALLY it's time, and my very meager entourage of just one doctor, one husband, a handful of nurses, and a speech therapist, gather around my hoo-haa and Nurse A tells me to start pushing when I feel a contraction.

So, did I mention how awesome my epidural was? They had to TELL ME when I was having a contraction.

I was able to push effectively except for all the times Dr. L kept repeating how "ruvvery" (ahem, "lovely") I was doing while I was pushing, which made me laugh and lose the pushing stamina. No telling how many contractions I missed because of that!!! :)

Then he'd say "Pooosh hhhaaadder," and I'd laugh again.

"Juss one moh pooosh," he said, about 5 "poooshes" in a row.

Finally, at 10:20AM, it's the big one, and I pooosh and pooosh and he says "Pooooosh harder, poooosh harder" and the baby squirts out and he says "Srow down you poooosh too haaaahd!"

And I cracked up :)

I must say, it was awfully nice to have a delivery where my biggest fear was pooping on the table in front of my friends. (They said I didn't. I hope that's true.)

At any rate, Nurse B and the speech therapist completed Ty's assessment, and they concluded he was 7lbs 7oz, 18.5" long with no speech-related issues and gave him to me while Dr. L tried to put my Humpty Dumpty back together again.

And I looked down at Ty in my arms, and I thought, "My lord, this kid looks like a garden gnome."

(Thankfully he grew out of that later:)

So, they cart him off and when I'm able, Nurse A and Shep get me up and help me to the bathroom, where I am able to fully understand the complete and total bloody mess I am. As Nurse A is helping me clean up, she looks up and giggles and says, "Do you think we can still be Facebook friends after this?" :P I told her she was officially from that point on my closest FB friend ever:)

I'll spare you the details of Ty's refusal to drink from the tap and the many hours I spent trying to get him to try. I will tell you that I expressed boob juice into a plastic hospital spoon, and that's how he drank it while we were there since he'd refuse to get it the old fashioned way and I refused to let him have a bottle and take the easy way out.

At any rate, two glorious, short days later, they made us let us go home with our TyTy... With no monitors or instruction manuals... (Although, I will confess to maybe putting the pulse oximeter on him a few [dozen] times the first few weeks. You know, just to be sure.)

And all was well...

And that's our story of Birth #3... Such a fun time :) I can't imagine a life without our precious little Ty!

Unbelievable

Call me lucky, or sheltered, or both, but in my life, especially in the last few years, I've witnessed countless instances of selfless giving and unconditional love. I've watched parents give everything to keep a child who will never be "healthy" or "normal"  the best life they can imagine, and I've watched people with amazing strength and patience fight to give homes to children of all ages, shapes, abilities, and sizes... Parents who may or may not have been able to give birth to biological children of their own.

I suppose it's my experiences with such unbelievably awesome people that make stories like this that much harder to swallow.

And it happened just a few miles down the road.

And the woman is a pediatrician. She took a vow to protect children, and DO NO HARM.

Unbelievable.

A ghost story

Some of you may know that my mom and dad had a 100-year-old, abandoned house cut apart and moved to their property a dozen or so years ago, and then my mom spent several years tearing down walls and rebuilding them until she ended up with just what she wanted. After they moved in, mom started telling me about some strange occurrences, and they end up naming their "ghost" Lucy.

I thought, yeah right.

Well, after I spent one night there I became thoroughly convinced, and although I found it extremely frightening at first, over time Lucy became part of the family.

(Yes, you can call us crazy now. No, you don't have to believe me. Yes, this is really a true story.)

So, then one day I went to visit and I didn't hear anything out of Lucy my entire trip. It made me sad :(

And then I came back a few more times and didn't hear her those times, either.

And then a year or so passes and... nothing.

Mom reported she hadn't heard anything out of her, either.

We thought maybe she had finally been able to go home...

But then, when the boys and I were at Mom's and Dad's for our last visit, I'm pretty sure she was back :)

I was trying to get the boys settled for bed, and Dax was lying down and Ty was in my arms screaming bloody murder, when I watched the door to our bedroom open all the way up, then slam shut...

And then, nothing.
Which could, of course, mean 1 of 2 things...

1. Lucy felt like I had enough to keep me busy without her help...

or

2. She was more scared of Ty than we were of her :)

It could go either way ;)

My "once-weekly-but-now-I'm-lucky-if-I-write-it-monthly" update

Sooo, the boys are in bed and I'm eating apple pie a la mode (in a bowl, since my friend Brenda says nothing "round" has calories, and this is the best I could do ;) and I'm going to see if I can belt out an overdue update before I pass out on my laptop! We've had a busy month or so, and that includes the TWO WEEKS I was finally able to take off of work for my first real vacation time in years that didn't revolve around a medical appointment or procedure or pushing babies out of my hoo-haa. So, it was niiiiice.

The boys are doing great! They're both just turning into little men right before my eyes, and it makes me so happy and so sad. Every now and then, I'll think, maybe it would be nice to have another itty bitty baby around the house... But that thought passes, and it passes FAST! :)

So here's the scoop:

I took Dax in about a month ago for his procedure to have his tubes in his ears replaced, you know the one I was so excited about because they weren't going to intubate him... Well, after anesthesia looked him over they told me they'd changed their minds and they were going to intubate him, after all. I understood their reasoning, but after all was said and done he had a really tough time coming off the vent and became very agitated as the sedation wore off, and it ended up being one very long, very un-fun afternoon. In the NICU, parents get very accustomed to seeing their child turn blue... But I was way out of practice on that one! During one of his bad episodes I was holding him up on my shoulder trying to get him to start breathing again, and I managed to catch his Mic-Key button on something and yank it out, subsequently leading to the emptying of all his stomach contents (which the best I could tell included mostly fluid and blood) into my lap. Thankfully, after about three hours he had calmed enough for me to change my undies and soon after he was keeping his sats high enough that I could cart him on home. It wasn't a majorly disastrous day, but it definitely wasn't the picture perfect procedure I had hoped for.

On a brighter note, the ENT vacuumed all the mud out of his ears and popped the new tubes in, and Dax then passed his ABR. Perfect hearing :) That's my boy!

Right around that same time, Dax starting going to outpatient Speech and PT at a local therapy center. We've been really happy with the new ideas and suggestions they have for us, and we look forward to starting OT at that same center soon. Five therapy sessions a week will keep us fairly busy, but we're already seeing so many improvements!

We're still seeing a vision therapist once a month, and she has great ideas for getting Dax to maximize his functional vision. (I still think ALL men need a vision therapist :P "Where's my socks? I've looked everywhere!")

We also started both the boys in a blended early intervention preschool. It's only two days a week, and the boys both seem to be doing really well with it. Dax will only be able to stay there until he turns three, but luckily we have several more months before we have to cross over that particular bridge.

Other than those major areas, Dax has had several recent and uneventful doctors' appointments... We followed up with the ENT, who said the ears looked great post-surgery. He and I did talk about Dax's paralyzed vocal chord a bit, and we're going to continue giving Dax a few years to give his body time to try to compensate, but once he's more medically stable there is a surgery the doctor can perform that will bring the paralyzed vocal chord over a bit so Dax will be able to talk louder and swallow better... But for now we wait and see.

We had our regular visit with cardiology and Dax's echocardiogram looked great; the pulmonary hypertension is still well-controlled and his ASDs (holes in his heart) are continuing to grow smaller in size. So, do we have another heart surgery in store for us next year to close it? We wait and see. In the meantime, we stay on the same Viagra dose until he outgrows it and see if he can continue to keep the pulmonary hypertension at bay.

We also had our regular visit with pulmonology, today, actually, and they're still happy with where Dax is. We had to turn up his overnight oxygen following his recent surgery and subsequent crappy lung episode, but we've now weaned back down to where we were previously and will continue to try to wean him slowly over time. Seems to be that slow and steady is everyone's approach when it comes to Dax, and I guess that is how it should be.

And, I'd much rather hear "no change" than "we'll try this new med now" or "it seems to be getting worse." Oh, yes, we'll take all the "no change" we can get!

And I guess that's all the technical stuff.

As for the regular developmental stuff, this is where we are:

Mobility:
Dax is taking 9-10 steps at a time. He doesn't do it all the time, and they're not always very pretty, but they're beautiful to us :)

Ty is cruising away, and bridging the gap between two pieces of furniture. He'll let go very, very briefly at times, but that's rare. He can hold my hand and walk with me now, and he crawls all over the place and up and down the stairs. Absolutely amazing to me, how he does all this without any formal teaching :)

Speech:
Dax is really making some progress with his signs, more so than he is with speaking right now. As far as spoken words, he does say a few inconsistently, but we have a consistent, functional use of the signs "up," "Mama," "Dada," "play," "eat," more," "drink," "I want," and "bye," and an inconsistent, but occasional use of "love" and "all done." I have seen him actually sign "More I want eat" which is a pretty decent accomplishment for him, and tonight while we were eating I asked him what he wanted, and he signed "More love." :P Yeah, because that kid is seriously underloved!

TyTy can also sign "more" and "eat" but only when he is competing for what his big brother is eating :) Ty has several babble words in his repertoire, but my favorite new word of his, and the one he repeats most frequently now, is "deux."

Yes, "Deux." Not "do" or "dew," "deux." How do we know? Because it is said with a perfect French accent. We haven't yet figured out if it translates into some random "d" word, if it's actually meant to be translated into "two," or if it has something to do with poop. We'll keep you posted on that one.

Eating:
Dax is branching out a lot and eating a whole variety of new foods. Among his favorites? Green veggies, especially broccoli and spinach, and today's winner: green tomato casserole with fresh green tomatoes from his grandpa's garden. Among the things he will not touch? Fresh fruits. Goooo figure. We're still using the g-tube for the bulk of his calories and to keep him hydrated. Still no thin liquids by mouth.

Ty... Well... Ty has yet to meet a food he doesn't love. And that includes bugs, chalk, and lemons. Escpecially if they're covered in ketchup! And we FINALLY convinced him that sippy cups are not so bad, and he now only gets an actual bottle every other day or so, and the rest of the time it's sippy cups only.

And I guess that brings me to weights and measurements...
Dax is sitting steady at 24 lbs, and he measured 32" tall today.
Ty... I'm not honestly sure how tall he is, because we haven't had his one-year checkup yet, but as far as weight, it looks like he's about 25 lbs give or take a poopy diaper.

Which reminds me... Ty will be ONE this month. How did that happen?!

Seriously!

And I suppose that's most of the high points.

It was really nice to get to travel to MS to visit family over my recent days off. It's fantastic to finally be able to get out and take a fun trip that isn't rushed, especially now that Ty is getting older and can ride in the car for a bit without screaming. the. entire. time. It was fun to see the family and parade my handsome little men along with their cousins through my hometown's 4th of July parade (which I refer to as "The Parade of Grandchildren.") Mom's been wanting us to bring the kids down for that since I was pregnant with the twins in 2007, and I'm glad I was finally able to get them down there for it. Fun times! Hopefully over the upcoming months we'll be able to get out and do some more visiting before we end up in cold, flu, and RSV season again. (It'll be here before we know it!)

And here's a couple of pictures of my little guys, purely for your viewing pleasure :)

Dax, drunk as a skunk before his surgery.

TyTy's favorite lunch: Ma Mills' homemade cookies!

                   Petting Uncle Jon's "donkeys." (Don't tell him they're horses; he loves making donkey noises!)

Seriously, blocks are his FAVORITE toys now!

Sleepy TyTy

TyTy hanging with his Great Grandma Mills

Night, all!

Good books are hard to find...