Dad's turn at the hospital

Charlotte was admitted to the hospital on Sunday afternoon and has been hanging out here at CHOP ever since. She is the healthiest kid to ever spend nearly a week in the hospital. Since she has been here, there been no fevers, vital sign changes, or even an IV.

She had her Jtube replaced on Tuesday morning and was moved to the pulmonary floor Tues night to be started on CPAP. She has tolerated the CPAP pretty well. It took ~6 tries on tuesday night to get her to sleep with the mask on, but wednesday night it went right on without any fight. I don't see a huge difference in her when she wakes up, but it is keeping her heart rate lower during the day.

She is currently on a room air trial (where we turn off the oxygen and see what she does) and is doing very well. It is nice to see her without a cannula in her nose. I imagine at some point she is going to need more oxygen, but it is nice to know that her lungs are healing and improving.

Tomorrow morning she is going to have an MRI done to evaluate her brain. There is a concern that the Sleep Apnea might be caused by an abnormality in her brain stem. It is a zebra, but it is worth ruling out. Due to her shotty lungs, she will need to be under general anesthesia for the scan and stay in the hospital for 24 hrs after the MRI for observation.

SO it is looking like it will be Saturday morning before we get out of here. I am trying to fight the hospital psychosis as best I can, but I feel it creeping in. I look forward to meal times as a chance to leave the room and interact with the world around me. I took a walk today through Penn's campus just to reorient myself with the world. I am constantly amazed how different the hospital world is for the doctor and for the patient. Hopefully this will help me relate to patients I have in the future.

Latest and Greatest

We've spent the past few days at CHOP, our second home. I mean it's been almost 2 month since our last admission, it was about time we got ourselves back here for a visit, right?

Charlotte's doing well. This admission is more of a "complex care" admit than a sick admit, so its been less stressful than others in the past. What's complex about Charlotte? you might ask.

It's easier if I just give the week in review:

Sunday: Started having some nasal congestion. This is our first real cold (ie, runny nose, needed to be suctioned, etc) since October and the combined 2 week admit. Way to go us!

Monday: Sleep Study

Wednesday: Cold peaks. We're going to stay home through a cold! Woohoo!

Thursday: Cold gone, for the most part. We can still hear congestion, but we can't see it, and it hasn't "dropped" in to her lungs

Thursday night: GJ tube malfunction. {SIDENOTE: This GJ tube is such a shamble, it's almost an insult to the word shamble. It's a standard PEG tube with an NG tube threaded through it, and then TAPED together. Seriously, in this day and age of uber expensive medical technology, we're TAPING GJ tubes together? For reals?} We have to pull the GJ and since this whole J tube feeding thing was a trial and we don't feel like running down to the ER (GJ's must be placed in Interventional Radiology), we replace it with the good ol' Mic*Key button G-tube. This means food is going into Charlotte's belly for the first time in 3 weeks.

Friday: Charlotte starts coughing again, having more cold-like symptoms, but no runny nose. We find out she has severe obstructive sleep apnea and we might need surgery and/or CPAP. And we don't have a night nurse.

Friday night: Charlotte has a very hard time sleeping. Coughing and gagging, constant desaturations, she was not a happy baby.

Saturday: Very sleepy baby. Still with the cough, but no runny nose.

Sunday: Charlotte starts wheezing. Albuterol! Wheezes some more. Charlotte's running a fever (low grade, 100.7 F) With the combination of a change to Gastric Feedings, the cold, the sleep apnea, etc, our pediatrician and the Integrated Care Service Floor at CHOP both thought it would be best to come in and have a little tune up.

Since then: Charlotte's been on albuterol every 4 hours to control her cold/ cough. It doesn't appear as though she had a major aspiration, but she was definitely microaspirating with the G-feedings. Yay! ENT came by to see her and determined that they would rather NOT do the surgery, a conclusion with which we whole heartedly agree. We're sticking around this place until Charlotte can be fitted with a CPAP machine and mask. That should take a day or two, and then we'll be home with our little snoring baby.

The sleep study showed some irregularities in her EEG, but we spoke to neuro today and they said they wouldn't worry about it until she starts having seizures. Haha, sure why not? All joking aside, they did say that some irregularities are to be expected with a micropreemie and we shouldn't be concerned unless there were clinical signs. One more point for "preemie brain".

That's that.

Obstructive Sleep Apnea

We'll add that to the diagnosis list that Charlotte has running. Charlotte went in for a sleep study on Monday night and we were fully expecting that we'd get the go ahead to start weaning Charlotte off of her oxygen during the day. With any luck, we thought, maybe Charlotte would be off oxygen by the time we moved to California!

Bahahaha.

Charlotte's pulmonolgist called today saying that Charlotte has severe obstructive sleep apnea. She is referring us to ENT to see if they want to remove her tonsils and her adenoids. We're thinking the surgery should be scheduled in the next few weeks, if they decide to move on that. About 6-8 weeks after surgery, we'd do another sleep study, and if OSA is still observed, they would place her on CPAP during periods of sleep.

If ENT doesn't want to do the surgery, then we'll get started on the CPAP right away.

Any ideas on how you keep CPAP on a 13 month old? Should be awe.some.

MOD Response

An open letter to Ther-RX from the March of Dimes. If they stick to this, I will revise my opinion of their response to this entire debacle! 


March 23, 2011

Greg Divis, President
Ther-Rx Corporation
One Corporate Woods
Bridgeton, MO 63044

Dear Mr. Divis:
Thank you for your letter of March 17th. I am pleased to learn that you are ‘listening carefully to stakeholder concerns about list price, patient access, and cost to payers’. Thank you for considering additional steps to ensure that Makena is available to all eligible women, and for convening stakeholders from the March of Dimes, the American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, and the Society for Maternal Fetal Medicine next week.

In advance of that meeting, I want to go on the record that March of Dimes expects Ther-Rx to come to the table with substantive commitments including:

1.A significant reduction in the list price of Makena.
2.Adjustments to the patient assistance program to ensure adequate coverage of all patients, insured, uninsured and underinsured.
3.A method for reporting on a regular basis to stakeholders on the patient assistance program to ensure that it is meeting needs in a timely and adequate way.
4.A justification or rationale for your pricing based on your investment in the product, savings to the health care system, or other appropriate methodology, which you are prepared to make public.
Without these elements, I do not believe that Makena can succeed in the current marketplace environment, and as a result, at -risk women will be denied access to a safe and effective treatment to reduce preterm delivery. Therefore if you are unable to make a clear commit-ment to significantly address the above issues at the meeting, the March of Dimes will need to pursue alternative strategies for ensuring that this proven intervention to prevent preterm birth is made available to all medically eligible pregnant women, and we will step away from our longstanding and productive corporate relationship with Ther-RX. Thank you for your consideration of this critical matter.

Sincerely,

Jennifer L. Howse, PhD
President

Baby Blue

Oh, those eyes. Those baby blue eyes. We love those eyes. And that smile, and your cute little nose. And your waxy ears and pretty much everything about you.

'Cept your dirty diapers. Those are gross.

OK, I'll Talk About It

I've been avoiding this post because I've been sincerely hoping that the March of Dimes and/or Ther-RX would put on their big kid pants and do something about this whole situation. But alas, I don't think that's the case.

What situation? you ask. Lucky you! For many preemie parents, the past few weeks have been a huge roller coaster ride.

Last month a drug was approved by the FDA which significantly lessens the chance of premature birth for women who have previously had pre-term labor. This drug, known as 17P has been on the market for a few years, but it is made by compounding pharmacies, meaning any pharmacy can mix it up and there isn't really a great regulation system in place for the drug. A pharmaceutical company presented 17P to the FDA and with the support and backing from the March of Dimes, the FDA approved 17P to be marketed as brand name Makena. This means drug production will be universal, ensuring quality and making it easily available to all women. This is a HUGE deal.

But then came the whiplash. The drug is going to jump from $10 a shot to $1500 a shot. Women would need this injection once a week, making a full term pregnancy come close to $30,000 just for this one medication.

To make matters worse, Ther-RX has made large (we're talking $1.5 million) donations to the March of Dimes in the past year, making it look as though the pharmaceutical company bought the endorsement of the MOD. The MOD denies this, but their statements aren't changing the minds of many preemie parents. Ther-RX has promised that all women, regardless of ability to pay, will be able to receive this medication. They've promised that there will be financial aid available to those who need it. They've promised.

The reality is, the preemie community is still working day in and day out to get insurance companies to cover a immunity boosting shot for all preemies during RSV season. This shot (Synagis) delivers antibodies to protect preemies from RSV, a common cold in adults but the source of massive lung damage for children. Charlotte, born at just over a pound and 16 weeks early was DENIED for this shot the first time we applied. RSV would ravage her already fragile lungs, and easily place her in the PICU, most likely back on the ventilator. Thankfully, she has received all of her shots this season, and has not contracted RSV. For reference, Synagis costs about $1,200 a month.

My question is, if we can't even get insurance companies to cover Syangis for children who are already here, who are already at risk for serious medical complications, how in the world are you going to get insurances to cover a medicine that gives a theoretical protection (not all babies are born term, even when the mother gets this shot) when it costs $5,000 a month?

And... if we are to get insurances to cover the crazy cost of this drug, who do you think will really pay for it? Yeah, we all will.

Those who are truly financially incapable of paying for it will get it and will receive financial assistance. For that I am grateful. But there are those who might appear to be financially capable (have insurance, make over $60,000 a year) who will not qualify for this assistance. What about those women? Those children? Those families? One person recently stated that her insurance company, a nationwide insurance carrier, informed her that her cost per shot would be $3,000 out of pocket.

So what to do? Many parents are demanding the MOD return the funds donated to them by Ther-RX in an effort to show how outraged they are by the price-hike. The MOD says that those funds are already earmarked for programs and they would have to cancel programs that support women and children in the community.

Many more parents are refusing to raise money for the MOD. If they really didn't see this price-hike coming, as they claim, how aware are they of everything else they are supporting? Why should we as parents give them our hard earned money if they cannot be responsible for what they are supporting?

I don't really know the answer to this. I'm devastated over this. I fully support drug companies re-cooping the cost of the research and development of their drugs, but Ther-RX didn't even develop this drug! It was already in existence! Ugh.

All I know is that this situation is ridiculous. The MOD has worked hard to make lives better and has spent a lot of money on research to increase the prognosis for preemies. For preemie parents and the MOD to be at odds is not a good thing and I hope both sides focus on what matters most: protecting women and babies.

Here are other reviews of this situation you might want to check out:

Anne's:  http://eliza-grace-micro-preemie.blogspot.com/2011/03/march-of-dimes-and-kv-pharmacueticals.html
Bridie's: http://supersellers.blogspot.com/2011/03/my-baby-is-more-expensive-than-your.html 

Melissa's: http://catchupdaphne.wordpress.com/2011/03/15/a-big-mess-for-the-march-of-dimes/

In an effort to be completely fair, here are the responses from the MOD:

RESPONSE FROM MOD PATIENT AMBASSADOR 2010:

Hello Everyone.
Just wanted to chime in and give info other than the articles from media that have been posted. This is information directly from the March of Dimes, and I hope this will help dispel any concerns and frustrations you might be feeling about Makena/17P and the involvement of the March of Dimes.

The March of Dimes agrees that the price of Makena is too high. They have shared their concerns about the price with Ther-Rx in the past and have done so again today. The needs of moms and babies are their only priority and they are making sure Ther-Rx hears their voice – and your voice, too. Ther-Rx has promised that every eligible woman will get care regardless of her ability to pay and the March of Dimes will hold them to that promise. The March of Dimes will also work with insurance companies and Medicaid to be sure that there is coverage for every woman. Women are able to apply for financial assistance through the Makena Cares Connection, an assistance program. Here’s that information.

Makena Care Connection™ at 1-800-847-3418, Monday−Friday, 8 AM−9 PM (ET)

If you have issues with getting treatment, please don’t hesitate to contact the March of Dimes directly via their website at www.marchofdimes.com. The March of Dimes staff reads each posting and they will respond to you. The March of Dimes says they are hopeful that between insurance and financial assistance, the system will work for people. But if it doesn’t, the March of Dimes will be fighting on the side of pregnant women, not the drug company.

I really hope this helps.

Love,
Melanie 

OPEN LETTER FROM MOD TO THER-RX: 

Dear Mr. Divis:

I write to share the serious concern of the March of Dimes about access of clinically eligible women to the newly approved drug for prevention of preterm birth recurrence, MakenaTM. As you are aware, the March of Dimes co-sponsored a scientific symposium in 2004 to review the details of the National Institutes of Health (NIH) prevention trials with the drug, and was among the health care leaders who reviewed the compelling scientific evidence of the effectiveness of 17 α- hydroxyprogesterone caproate (17P) to prevent preterm birth. We supported the clinical guidelines of the American College of Obstetricians and Gynecologists that recommended the use of 17P for selected patients at risk for recurrence of preterm birth. We were supportive of expedited review of 17P by the FDA because of our understanding of the efficacy of the drug and the known benefits to access, quality, and consistency of having the good manufacturing practices of a regulated pharmaceutical company responsible for drug production and distribution.

As FDA approval seemed imminent, March of Dimes leaders met with your staff and were assured that every effort was being made to standardize distribution methods, work with physicians and patients to streamline insurance and managed care issues, and most importantly, to ensure that every eligible patient who is offered the drug by her physician has access to the drug regardless of ability to pay. Your staff described the “care connection” program that has been created to assure all of these aspects of drug supply and availability, including a substantial financial assistance program for uninsured and under-insured women both in the private and public sectors. They also described efforts to work with public payers to assure access to 17P at reasonable costs for Medicaid, and other public health insurance plans.

However, since its approval on February 4, 2011, there have been numerous reports that the price of a course of treatment with MakenaTM could reach $30,000, thus raising questions about whether health plans and public insurance programs like Medicaid and CHIP will cover it. So we remain deeply concerned that the cost of this lifesaving treatment could be put out of reach to thousands of women at risk for preterm delivery.

Therefore, we respectfully request that you reconsider the market price of MakenaTM and commit your company to the promise that every eligible woman who is offered the drug will receive it without regard to ability to pay. The March of Dimes is prepared to work with Ther-Rx to help prevent preterm birth and we hope that you will be responsive to our concerns.

Sincerely,

Jennifer L. Howse, PhD Alan R. Fleischman, M.D.
President Senior Vice President and Medical Director

IN RESPONSE TO RETURNING THER-RX's DONATIONS: 

We’ve certainly talked about whether we should give Ther-Rx back their money. It might be helpful as a public relations tactic. But we’re more concerned that a give-back would reduce funds available for our mission. We need both public and sponsor funding to sustain programs like research, health education, and advocacy. We’ve already committed the Ther-Rx sponsorship money for this year. Without it, we’d have to cut some of our programs for mothers and babies. We don’t think that you or the families of preemies would want us to do that. Especially not now when the federal government, states, and other private sources are cutting back their spending on programs for babies and children. So you can see the dilemma. In addition, by holding on to the money, we still have the option to make a public give-back in the future if Ther-Rx does not honor its promise that every woman who needs 17P will get it, regardless of her ability to pay.

I-Rish You a Happy St. Patrick's Day

 My mother's father passed away about three weeks before I was born. I've known this my entire life, but it's really been the last few years that I think I've begun to understand how difficult that time must have been for my mother and her family. Having children of your own makes you think of things differently, I suppose.

The one thing everyone says about my Grandfather is how kind he was. He loved people and people loved him. He had people, to whom he had sold cars decades before, attending his funeral. They said, I saw his name in the obituaries and I had to come pay my respects. Hugh Reddy was a gentleman. I like to think that Charlotte's incredible good-natured (is that a word?) personality comes from her great-grandfather.

The other legendary trait my grandfather held was his love of all things Irish. Our family likes to say we're 20% Irish by birth, 80% Irish by heart.

On this St. Patrick's Day, Charlotte celebrates the man who gave her a direct link to the Luck o' the Irish.

A link, which, I might add, she has used, many, many, times.

Happy St. Patrick's Day to you, Papa Reddy. I know you are celebrating.

Stats

Charlotte is currently 1 year and 15 days old. 

She is 8 months and 25 days adjusted for prematurity

Weight: 18 pounds 7.5 ounces (8.8 kilos)

Adjusted Age Percentile: 25th- 50th percentile

Actual Age Percentile: 10th percentile

Length: 25 inches (65 cm)

Adjusted Age Percentile: Less than the 5th

Actual Age Percentile: Less than the 5th

Head circumference: 16 inches (41 cm)

Adjusted Age Percentile: Less than the 5th

Actual Age Percentile:  Less than the 5th

The J Tube

The day before we left for San Diego, Charlotte had her G-tube changed to a G-J-Tube. Her feedings now go directly into her intestines, bypassing not just her mouth, but her stomach as well.

The theory behind this is that if there is nothing in her stomach, there will be nothing to create a sensation of being full. The lack of that sensation is supposed to decrease the amount of gagging. The decrease in gagging is supposed to decrease the oral aversion. The decreased oral aversion is supposed to make it easier to feed by mouth.

Phew. That's a lot of supposed to's.

So far, we've noticed days that are much, much better. But then, we have days that are just about the same. The plan is to trial it for a month and make a decision from there whether or not to leave it in or go back to the G-Tube.

Why go back?

Well, for starters, Charlotte cannot have the button GJ tube. Why does that matter? Here's the difference:

GJ Tube (Current)

G-tube Button (Placed Sept 2010)

The button is much smaller, and has a much lower profile, as you can see. The extension tubing that allows access into the button is removable, which causes less tugging on the belly. Charlotte would be eligible for a GJ Button once she hits 25 pounds. She's currently around 18.5 pounds, {which is *huge* for a 12 month old micropreemie. So large in fact, that they are a little concerned that her weight might be holding her back in some developmental aspects (ie, she can't learn to crawl or pull herself up because she weighs too much for her body to handle).} So even though 25 pounds is relatively close, it would be at least  8-10 months before she would be large enough to have the GJ button. Basically, they don't manufacture a GJ button for kids smaller than 25 pounds.

Another reason to go back to the G-tube is that the food would be going into the stomach and then naturally going into the intestines, instead of bypassing the stomach and being pumped directly into the intestines. It's bad enough we're by passing her mouth, we'd like to include as many of her organs in the feeding process as possible.

Also, there's no hope of condensing feeds with J feedings. Formula must be pumped into the intestines at a pretty regular rate (she is "on the pump" for 10 hours and off for 2, repeat over and over and over again).

But if the J feedings get her healthier and help develop a desire to eat by mouth, then, shoot, bring them on! So that's the deal. We're approximately 2 weeks into the trial, and we should have another 2 weeks to go. Hopefully we'll know for sure what we want to do.

Vocal Cord Paralysis

We saw the ENT doctor today (oh, what a post I could write about his bedside manner, or the lack thereof) and he determined that Charlotte's vocal cord paralysis is indeed permanent. Her right vocal cord is compensating rather well, so we are grateful for that. He encouraged us to get Charlotte to eat by mouth (uhh, yeah, we hadn't thought of that) and said we're cleared to follow up...

... in 12 months.

Whoa. We said, "See ya later!" and ran out that door before he could change his mind.

Cop Out Corrected

To be perfectly honest, I copped out on writing a post for Charlotte's first birthday. I'm trying to correct that. I thought about writing something full of angst, thought about writing something full of hope, thought about writing something full of denial, fear, and/or optimism.

But it didn't feel quite right.

Mostly because I wasn't sure how I felt about her birthday. Was it really something to celebrate? The day of Charlotte's birth is easily in the top three most terrifying days of my life-- did I really want to celebrate that? The day that Charlotte was literally cut from my body, statistically too early to survive, I was to celebrate?

Yet, how could I not? Charlotte didn't just survive this past year, she thrived. She took the past year and kicked its trash. How could I not celebrate that?

I can't say that even now I am certain how I feel about it. Would I change that day if given the option? Of course. Without even thinking. I would carry that child until 42 weeks gestation or longer if I could change it. I would do it without complaining, {which would have been a severe departure from my previous attitude regarding pregnancy} without a second thought. I would throw up forty times a day to erase the past year. Give me a PICC line, TPN, and Zofran. Or don't. I would do it even without the medication. I would do anything to have that pregnancy last one more day, week, month or trimester.

But I would miss what this past year has taught me. No, the experience of a micropreemie isn't "worth" the knowledge gained, but I cannot deny that I have grown, have become a different person because of it. I've noticed more. I've been grateful for the smallest things. I've loved without expecting anything in return. I've had to talked about funerals, but I've planned parties and I've witnessed miracles.

In the past year, I've experienced anger; real, true, gut wrenching anger at a God in whom I firmly and truly believe. I've also experienced all encompassing peace, a peace that comes, not with certainty, but with hope. I've placed my daughter's life in the hands of neonatologists, surgeons, and specialists and then relied on their skills and knowledge, as well as faith of others to get her through procedure after procedure, day after day. I've asked more nurses about how my daughter is doing than anyone should ever have to ask. As I mother, I should know how my child is, I shouldn't have to ask. And yet, I did.

I've learned humility. I've learned that no matter how hard my life seems, there is always someone who is in need of my love, support and compassion. I've learned that trials in life cannot be compared.  I've learned that trials are more manageable when shared.

So no. I don't really want to celebrate Charlotte's birthday. Because "celebration" implies something so much more trivial than what that day represents. Instead, I choose to honor her birth. I honor the lessons I have been taught, and I humbly submit to the journey we are taking. I will not allow that day to define me, my family or my daughter. But I will not dismiss its teachings, or forget its implication.

I will celebrate my daughter. I will celebrate her milestones, rejoice in her successes, and I will never forget to pay respect to the bittersweet day that made it all possible.

Still Here

Peter and I packed up our things and flew across the country to look at housing in San Diego last week. Preparing for this trip was exhausting. We had to petition the insurance company to get 24 hour nursing while we were gone, notify the hospital and pediatrician that we'd be out of town, get a letter notarized saying my in-laws or my parents could sign consent for her, get her meds refilled, write a letter of medical history in case 911 had to be called {oh dear heavens, please don't let 911 need to be called when we are three thousand miles away}, write out a schedule of items that we do so that the nurses could fill in those hours that we normally cover, and oh, yeah, deal with a new GJ tube placed 24 hours before we left. In the middle of all of this we had a *slight* nursing fiasco, which, thank goodness, her nursing agency handled swiftly and very well.

And we have another child who had to be shipped off to Nana and Granpere's house in the middle of all of this.

And we got rear-ended in the middle of the tunnels in Baltimore. Oh joy.

However, once we got to San Diego, things went really well. No. We don't have a place to live, yet. But we do know a lot more about the area {like, uhh, we can't afford to live there :)} and what our list of wants vs needs are.

I want to live on Coronado on beach front property.

I need a place with a washer and dryer. We use cloth diapers, remember?

Wish Us Luck!

Charlotte goes in today for a GJ tube placement. Nothing like an appointment to Interventional Radiology for a belated birthday celebration, right?

We're hoping that Charlotte doesn't need any sedation and that things go smoothly. There's also a chance that she will lose the button and be placed with a traditional PEG tube, which is more annoying and cumbersome.

In other news, Charlotte's cardiology appointment went well on Friday. The cardiologist said he saw periods of tachycardia, bradycardia and sinus stoppage, (fast heart rate, slow heart rate, and skipped beats) all of which he expected, especially given her reflux.

He gave us the go ahead to stop seeing Pulmonary Hypertension and just keep following up with our Pulmonary doctors. We're still treating her heart rate with oxygen, but it's working and that's what matters.

Yay for victories, large and small.