Advocating for Your Child.

Without a doubt the most difficult thing I have had to learn (besides Excel QM) is how to advocate for my child. I have never been one to really question medical opinion, after all I am not a doctor, but recent events have caused me to pause and think twice. Jeremy was recently hospitalized with pneumonia and the events that occurred during his hospitalization led to this letter, written by yours truly, to the Patient Advocate at the medical facility (I have removed identifying information):

I am writing in regards to a recent experience I had with my son in the Multi-Service Unit. On Thurs, 3 July I took my son to the ER because of a cough and high temperature. He was diagnosed with Acute Pneumonia (validated by chest X-rays) and sent home on 4ml of amoxicillin and a tylenol/ ibuprofen regimen to keep the fever down. On Sat., 5 July my son woke with a fever and was eating very little and not drinking. I checked his temperature within the hour and it had spiked at 102.3. At that time I brought my son back to the ER because of the fever and I was concerned that he was exhibiting signs of hypoxia. At the ER he was given fluids and a higher strength tylenol that immediately brought his fever down. During this visit the ER doctor and the pediatric on-call doctor decided that Jeremy needed to stay for a night to be observed and see if he still showed signs of oxygen deprivation.

The following events occurred:

1. I observed and heard nurses directing technicians in training to come to his room because this could possibly be their only time seeing a "Down syndrome baby", and this would be good training for them.

2. We were told on the first night he was staying because of low oxygen saturation levels. The second night we received the same story, and it had been added that he needed to stay because he was exhibiting signs of failure-to-thrive (he is underweight). The third night we were told he needed to be on oxygen therefore we needed to stay. The fourth day he was weaned off oxygen and then for no reason he was put back on oxygen for the night (he showed no signs of hypoxia or had low oxygen saturations), that night we were told we needed to stay because his heart rate was low.

3. During our stay I was told that I needed to coordinate with the nutritionist at the treatment facility to discuss the reasons why he was underweight. I informed the nurses and doctors that his failure-to-thrive condition was not a new problem and was being addressed by his PCM-team at his normal medical facility and they could contact them to verify. My requests went unheard, instead I was told this nutritionist was who I needed to deal with. I also asked the nurses and doctors to contact his pediatric cardiologist about his low heart rate, the request went unheard. It was not until they day we were discharged she was finally called and asked for her opinion.

4. I was told at one point that he might possibly have leukemia because he had dots on his belly.

First, my son is not an exhibit. He is not "the Down syndrome child." He is a child WITH Down syndrome. He is also NOT a "training opportunity." I cannot stress enough that my child is not some guinea pig for technicians to earn their badges on. He is a human being who has very human emotions. When he is being poked by everyone because everyone should get their chance to try and get an IV in him, he will hurt and he will cry.

Second, my son is underweight. When I describe to nurses and doctors that this is not a new condition and it is not something they will fix in 4-days I expect to be heard. When I offer his team at his normal facility as a second opinion, I expect that offer to be taken seriously and for his team to be called. I also expect to be given the respect as his mother that I may actually have a clue what has happened medically with my son over 14-months.

Third, I expect to be told EXACTLY why we are staying at the hospital for numerous nights. To simply give (what appears to me) to be a new reason everyday for further observation does not offer me a transparent view of his condition. I also expect every-single-last-person who touches him to know EXACTLY what is going on with him. During our stay there was not a single nurse, doctor, or tech who was on the same page or had the same story.

Fourth, I expect outrageous claims like leukemia to be founded by actual medical evidence. To simply say these dots mean leukemia is an absolutely crazy and irresponsible thing to do to parents or patients.

Lastly, and this occurred yesterday and is why I am submitting this letter, I was told at a follow-up with Pulmonary at that Jeremy had actually experienced a collapsed lung due to the pneumonia. During our entire stay this was never made known to me or my husband. We were told he had acute pneumonia, possibly leukemia, low weight gain, low saturations, and a low heart rate... but never this.

We were finally discharged because ONE nurse actually asked me what I felt about my baby and how he was doing. She actually listened and actually spoke to the doctor and explained my concerns and desires. During the 5-day stay she was the only nurse to do so. I am not sure what course of action you will take, but I do feel some training is needed that addresses continuity with patient care, listening to patient's parents etc. about patient's medical history, and understanding that not every situation is a training opportunity. At the very least some discretion in using phrases like that could be utilized.

What I have learned from this experience is that I cannot sit back and let medical take the wheel. Hopefully incidents like these will be few and far between! At the end of the day - do not be afraid to advocate for your child! You may just save another family undue stress in the process!

21 Things...

In honor of Jeremy's triplicated 21st, I thought I would share 21 things I love about him:

1. He wakes not with a bang, but with a smile. He doesn't scream for us to come get him, rather he lays there, plays with his feet, and babbles.

2. The way he laughs is infectious. You cannot possibly be in a bad mood when you hear him laugh, with his whole body not just his face.

3. He loves to lay on the floor and kick his feet froggy style while flapping his arms like a bird.

4. The way his hands still confuse him. He stares at his hands and turns them all around like he just can't believe he controls those things!

5. The way he literally shovels food in his mouth. I watched this kiddo put fistfuls of popcorn in his mouth the other day! How does he do this?

6. The "Walter" face he makes. Even though it is because he is sad, it is still the funniest face I have ever seen. (Walter is a puppet Jeff Dunham owns)

7. How incredibly limber this kid is. I have never seen anything like it! He brings his toes to his mouth like its his second job!

8. His kisses. They are more like face bites with a lot of slobber, but I tell ya what, those kisses are the best!

9. The way he is "cuddle-sized." He is seriously 15 months old and wears 9-12 month clothing. I still can't find shoes that fit his tiny feet. I LOVE IT!

10. Everything stops for a milestone! I celebrated milestones with our other children, but his milestones are extra special for two reasons: it is the last time I will see one of my children accomplish a first, AND he works so hard to reach every milestone!

11. His tiny toes. They are seriously the cutest toes this side of the Mississippi.

12. When he lets me grab his hands and practice signs with him. He really looks like he is concentrating. Its as though he is thinking "I know this is important and I need to remember it."

13. His big, beautiful two-toned blue eyes. I have never seen eyes have two distinct variations of blue, but his do... and I'm kinda jealous I don't have something nearly as cool!

14. His CAVC repair scar. It reminds me how fragile life is, and reminds me to be thankful for great people who turn into great doctors and nurses that can fix big problems so little guys like him can continue to be in our lives.

15. The way he tries to turn his head in his car seat to look at me. He always tries to peer around the side and then meets me with a giant smile... it takes the road rage away!

16. The way he cries when he hears his PTs voice. It's kind of sad, but also makes me really proud because he recognizes and remembers that she causes him to work so hard!

17. The way he loves a noisy toy that he can sling back and forth. Currently it is his baby wipes package. The smile on his face and reckless abandon with which he slings...

18. The way he has given me a voice. I have always been quick to stand up and say whats on my mind, but usually that was it. Now I realize I have to fight to be heard when I disagree with something.

19. How relaxed he is. He is seriously the most relaxed baby ever. Its like he was born on a tropical island and all he needs to worry about is catching the next wave.

20. The way he pets animals. He actually really pets them. He doesn't grab at them, or pinch them, he just rubs his little hand down their fur coat. He loves it!

21. The community he has invited us to join. The Down syndrome community is small but reaches all over the globe. Without him I would have never known this existed!

Everyone's Life has a Purpose.

I am generally extremely optimistic about everything relating to Jeremy. Needs heart surgery? Cool, we'll find the best doc, best hospital and get it done. Can't gain weight? It's ok he'll do so in his own time. Lab work again? Well good thing I brought some snacks for him, and my phone is charged because this could be either a 10 minute ordeal or a two hour test of my patience with the medical facility.

However, my emotions can range from the glass is half full to "Holy shit what if this was us, how would I live through this?" Because I like to live in this world where every thing is coming up roses, I try to stay away from truly saddening stories, they just make me so sad and I don't like to be in that place; physically and emotionally. I try not to Google any little thing Jeremy has (like this week its been a bloody nose, which the rational side of me says it's from his ever-running nose and numerous wipes throughout the day... but the irrational side says "Holy crap, if I bring this up on Friday it could possible lead to a battery of tests and what if its..." Googling almost always leads to some rare cancer or disease... (seriously, I Googled my sciatica pain once and according to WebMD my kidneys were about to explode and I should most definitely be at the ER).

I recently started following little Annie on Facebook. She was denied a heart transplant, there are a range of stories that depict many scenarios why. I have read that a person with Down syndrome does not qualify for any kind of transplant because of the quality of life factor. I have also read that people with Down syndrome can qualify for transplants and it is totally dependent on the overall medical situation. Who really knows? I think it may be on a case-by-case basis. What I do know is little Annie's story is so sad, and the pictures posted tugged at my heart strings and made those feelings fall out of my eyes, she was literally dying one still frame at a time.

Last week another baby, Ryder also passed away from a disease that, in hindsight, can be prevented through vaccinations. (The unvax of Ryder was reportedly not the fault of his parents, they did not know the B-strain vax was available as he was vax'd for the C-strain; simply it appears they were not informed).

Simply put, I constantly struggle with the very real world I now live in; one where my child could possibly become very sick, one where he may be determined to be undeserving of a second chance at life because of his genetic make-up. I realize some folks read this and think "really crazy person? Anytime you can walk outside and be hit by a bus!" I guess its just the odds seem different somehow... greater and not in our favor.

(For the record- I am very pro-vaccinations, I am also very pro-transplants in anyone that qualifies regardless of genetic make-up)

"I'm sorry" and other annoying phrases.

Last week we went to Baltimore for a mini vacation, watched the Tigers whoop on the Orioles, and saw the National Aquarium (I highly recommend!).

While there we received the usual compliments about how cute Jeremy is (of course!) and almost always were asked, "how old is he?" To which we respond, "One." Since about 8 months on I have always been met with a questioning look and that head tilt (!) which I know translates to, "Why is he so little for his age?" If I am not asked that question I ignore the look and go about our business. If I am asked why, then I will almost always respond that he is small in large part because he has Down syndrome, sometimes the conversation stops there and sometimes the other person tells me a story about someone in their life who is touched by Down syndrome in some way (a cousin, niece, nephew etc.). My least favorite response that makes the Mama Bear in me want to throat punch someone (usually the other person) is, "I'm sorry."

The nice, polite person in me says, "Oh, don't be sorry, he is so awesome and you are lucky to have had the chance to meet him because this kid is going to rock this extra chromosome like its his full time job!"

The I-want-to-throat-punch-you-right-now person in me thinks, "Why are you sorry? Sorry for the 'burden' that must have been bestowed upon us? Sorry because we'll live a life full of stares and finger points? Sorry that we must be held back in some way because his special needs will always be at the front? Sorry because he must be some sort of invalid?"

Another annoying phrase? It almost always starts with "Well you know people with Down syndrome..." and can end with any number of things. The nice person in me just smiles and nods. It is most often easier to just agree with these folks because I don't have the extra energy to spend my days correcting everyone for their lack of knowledge. Realistically, unless they are personally in touch with someone from our Down syndrome community, they have no clue about these babies.

The I-want-to-throat-punch-you-right-now person in me thinks, "Really Dr. Down syndrome, please tell me more about your vast knowledge on the subject of Down syndrome, I'm intrigued." What it really boils down to is why place a limit on my child? "Well you know people with Down syndrome rarely go to college and live fully productive lives." Me, "Really? I can name 3 people off the top of my head who recently have been accepted to very good colleges, please tell me more about how my child may not be in this category?"

My least favorite comment of all time occurred almost a year ago, "Do you even have a clue how expensive a child with Down syndrome is going to be?" There was no nice person in me for my reply.

The I-want-to-throat-punch-you-right-now person in me replied, "Expensive? You think when we had any of our children we thought 'oh yes this one will be the cheap-to-have-baby and this one will be the expensive-to-maintain-baby,' we're set now!' Really? Please tell me what are we supposed to do with our baby who is apparently too expensive for us, give him back? (By the way can you please come budget our finances since you apparently know sooooo much about them!)

Yes Jeremy has racked up quite a bill medically, and maybe even in fuel. We have been extremely fortunate that our medical insurance has covered almost everything (at least most of the very big ticket things). To date we have paid $3,026.00 and-some-change that was not covered through our insurance. We are okay with that.

I guess my point is... unless you really know what you are talking about shut your mouth and just make googly eyes and "ahh" over how cute he is and agree that the hair on the left side of his head looks like he's growing a throwback to Flock of Seagulls (you know that one blonde guy!).

Jeremy is 1!

Today is Jeremy's birthday... Actually if it was this time in Germany he was born 2 minutes ago... I've thought for weeks what I would write... something prolific no doubt.

Today has come and all I can think is "we are so lucky." We are so lucky to have him. We are so lucky he doesn't have any crazy medical problems that keep him in the hospital for long periods of time. We are so lucky to witness all of his milestones at his own time. Most of all we are so lucky we get to celebrate his First Birthday!

That is as prolific as I will get.

Family is on their way in and we are going to celebrate Jeremy's existence with good food, laughs, and some fun for the next few days!

Superman.

If I could use one word to describe Jeremy it would: Superman.

 I did not know the strength a baby could have until I watched him recover from open heart surgery.

Jeremy was born with a complete AV Canal that would eventually require surgery. Our biggest hurdle to getting him to surgery was getting him to gain weight, the weight they wanted, 5 kilos (about 14 pounds). In October 2013 his surgery was finally approved for 1 November 2013. He was admitted on Halloween, so needless to say "Baby's First Halloween" was not what we had envisioned. But, we keep the humor and the jokes, we dressed him up anyway... he went to all of his pre-surgery appointments dressed like a skeleton... that had (get this!) a little heart in the rib cage.

We elected to have the surgery at Cincinnati Children's Hospital. The military was awesome with this process, we got to choose the hospital and they got us there. Cincinnati was an easy choice - our families were close enough to drive there. Our other family (the one here in Virginia) followed us out... there was no way Big Jeremy was going to be okay with deploying without his eyes on Little Jeremy after surgery.

We were lucky that we got to spend a few days with family before the surgery. It was nice to have that time, and not have to constantly think about the first of November.

The longest day of my life was 1 November 2013. As the process was explained to us, Jeremy would be knocked out, his blood would be re-routed through a bypass, rib cage would be cracked open, and then the surgery would happen, he would be sewn back together and sent to recovery. I am sure this is a much condensed version of events, but that is what I took from it. For six hours I sat in the waiting area watching families come and go. Periodically the nurse would phone or come out to tell me where they were at in the surgery, when the incision had been made, etc. It seemed we were the only ones left in the room when the nurse finally came out to tell us he was in recovery and it was just a matter of time until we could go see him.

For the first few days post-surgery Jeremy just looked like a shell of the baby I loved so much. He was so doped up and unresponsive. He had so many wires and transmitters, IVs, not to mention the suction-vacuum tubes coming out of his lungs, that it was nearly impossible to find a spot to hold. Within those few days he healed remarkably.

By the time they moved him to the step down ward it was as though he had never had surgery. Save the fact that he could not be on his chest, and had to be picked up in a new way... but he was all smiles... like nothing had ever happened.

Today unless you see his scar, or feel his chest (the wires that hold his rib cage together), you would never know he had surgery. He is hitting milestones about 2 months behind typical babies, and he is currently trying to learn to crawl.

I'm just tired.

I think the most difficult thing to do is sit by and watch. I had to sit by and watch as they drew blood from Jeremy yesterday for a Complete Blood Count. I've had to sit by and watch, and have spent so many hours... days... in hospitals that the mention of an appointment anywhere just drains me. But nothing, not even open heart surgery 2 months ago, has been as draining as listening to a Doctor call us at night... late too... to tell us his white blood cell count was low, and his platelet count was low. Low enough that a reorder of labs was needed for the following day to double check their work. Nothing is more draining than sitting by and waiting for the unknown.

I know it may not seem like a big deal, but this lab work has been a huge deal. A dreaded deal. Ever since I found out Jeremy had Down syndrome, and I read whatever I could get my hands on, I knew this blood work would eventually happen. At 6 months it didn't... but now he hasn't gained any weight... not ONE single pound since October. There's no explanation for it, he eats like a horse, he's had the heart surgery which should have enabled weight gain... yet nothing is happening. Its also possible its a thyroid problem. There are just too many unknowns... and its so tiring. Its so incredibly hard to sit and watch your baby, that is near impossible to draw blood from, cry because the only location they can easily get is his head. Or cry because they have to tie the tourniquet around his arm so tight just to make a vein, any vein, pop. Every time lab work is mentioned I get that terrible pit in my stomach... I know its going to be at least an hour long, I know its going to be painful for Jeremy, and I fear I'm going to hear something I don't want.

I feel like we haven't had a single break. We've been on the run with a hospital, a specialist, a therapist in our back pocket. Luckily he makes faces like these... and then its not so bad