30 June 2013

Congratulations Kim & Linda

Last evening we celebrated the wedding of Dustin's mom, Linda and her finance Kim McCullough.  It was a really fun night and a great opportunity to catch up with many people that we hadn't yet had a chance to visit with since Luke was born just before Christmas.  As I looked through my photos this afternoon, I was disappointed that I only got one photo of the bride and groom (and it didn't even come out very clear) nor did I get any of me and my sister in law, with my niece, of the boys and their cousin, or even with my mom or brother... here's a mental note to be more diligent with photo opps in the future!

Has anyone seen Aunt Elaine?

28 June 2013

"What do they think, I'm retarded or something?"

"I forgot my lunch money today, I am so retarded."

"Wow, that outfit looks retarded."

"What do they think, I'm retarded or something?"

Have you used one of these phrases?  Sadly, I can think of a time in my past life.. my life before Luke... that I probably carelessly used the word "retarded".  It wasn't something that I did with malicious intent, quite honestly I'm not sure I even knew what I was really saying.... it was just a slang phrase people used.  Everyone said it... that makes it okay, right?

I never took the time to think how that one-little-six-letter word could demean an entire population of people.  Webster defines retard as "to make slow; delay the development or progress of (an action, process, etc.); hinder or impede."  I can recall times when I've heard the word used in proper accordance with it's definition, but more often than not I've heard it used in it's slang form.  I'm sad that until I learned that my son would wear the title of "mentally retarded" that I never took the time to question why society thought it was okay to use it in place of words like stupid, dumb, and ugly. 

Remember that little rhyme "Sticks and stones may break my bones, but words will never hurt me"?  Remember how regardless of whether you said it out loud to others or quietly to yourself, you knew it wasn't true?  Words can and do hurt.  Even when they are said without malicious intent, they can still be painful. 

Here is my call to action for you... If you catch yourself saying the R word, stop and re-phrase your thoughts.  When you hear others say it, ask them to find another way to express themselves.  Don't do it for me... do it so my son and others with Down syndrome don't get their hearts broken when they hear someone say, "What do they think, I'm retarded or something?"

18 June 2013

How to remove Collodion

Okay cow loving friends... I've been meaning to share this for awhile and had fogotten until now.  When Luke had his EEG, the tech used collodian to glue the electrodes to Luke's head.  I was shocked to see collodian being used in the hospital after using it for years with cattle.  The tech told me they used it like "water" in the neurology department to glue electrodes for EEGs and it just about made me cringe to see it being slopped all over the place and wasted as I've been all too familiar with it's expense when purchasing it from the pharmacy.  As soon as I learned of her intent to slather it over Luke's soft, fragile hair and scalp, I immediately bristled and asked if we had any other options for securing the electrodes.  She reassured me that they could remove them safely and easily without damaging his skin or hair.  I have to admit that I was amazed when she used Mavidon to quickly and easily remove the glue following the test.  This was much easier than using acetone or rubbing alcohol like I've been accustomed to in the past.  I googled Mavidon after returning home and learned that it's relatively inexpensive and I think it would be worth trying next time we're bagging cows. 


16 June 2013

A Night with Friends

In the midst of our daily hustle and bustle, we haven't had much opportunity to spend time with friends over the last few months.  Not only did I get to spend a majority of last Thursday with one of my besties, Mary, we also attended a cookout last night with a group of couples who we have been friends with for many years.  The guys in the group all went to elementary, middle and high school together and somehow, 13 years later are all still really close and over the years, the wives have become great friends as well.  In just the past few years, our group has grown to include quite a few children and we had fun last night hanging out and watching our kids play together!  Somehow I missed a few of the dads in my photos.... but regardless, here's what I captured....

Happy Father's Day

We took Dustin on a little Father's Day outing yesterday... we started the afternoon with a picnic lunch at Pleasant Hill Lake, where we watched the boats cruise the water and the crazies who were content swimming and playing on the beach with only a 78 degree temperate!

Next, we took to the course at Mohican Adventures Putt Putt, where Dustin helped Matthew golf for the first time.  We were both impressed with Matthew's attention to the ball and his willingness to play hole after hole all the way through to number 18.  Matthew got a bit fixated on a water feature (also known as a goldfish pond) on the 17th hole and when combining his desire to jump in (which we weren't too excited about) and the fact that he hadn't napped yet, we did have a short meltdown as noted in the second to last photo.  Luke slept peacefully the entire time we were putt putting and only decided to wake up as he was in his car seat and ready to head home. 

We finished the afternoon with a stop at the dairyette in Loudonville before heading home to put on jeans for a cook out with friends.  

Matthew, Luke and I are so blessed to have Dustin in our lives.  He is a great role model and an awesome husband.  We love you!!

14 June 2013

Learning about Blood & Neutropenia: Questions

Blood is made up of red cells, white cells, plasma, and platelets. The functions of each are:
  • Red cells or erythrocytes  - Carries oxygen to and carbon dioxide from cells in the body.
  • White cells or leukocytes - Defend your body from germs, viruses, and bacteria
  • Plasma- Carries nutrients and suspends the other 3 components
  • Platelets or thrombocytes - Very important for clotting blood and repairing vessel walls
Blood also contains "clotting factors", which are also vital to the clotting process.

We know that Luke has some level of Neutropenia, which is a low neutrophil count.  Neutrophils are a component of a white blood cell.  Of the components of the WBC, the neutrophil is the best at "attacking" infections and we can see the work they do externally as they are responsible for creating scabs over open wounds. 

I've learned about a drug called "Neupogen" that can be administer daily to boost the production of neutrophils, however as Luke's ANC isn't severely low, it isn't something we've considered to this point and our hematologist has shared that she will want to complete a bone marrow biopsy prior to prescribing this medication.  That said, after speaking with a friend today whose son also has neutropenia, I have some questions (I have to give my friend Gretchen some credit here as she helped me brainstorm some of these ideas over lunch today...) 
  • Should we consider Neupogen as a pre-op methodology to help prepare Luke's body to fight off potential infections following his operation?
  • How will his recovery be implicated if he has a low ANC going into open heart surgery?
  • We know that he will be on the cardiopulmonary bypass (aka the heart-lung pump) and will receive a blood transfusion as part of the operation - how will blood products affect his ANC?
  • Will his CBC diff be ran regularly throughout the surgery to monitor his ANC and corresponding ability to fight infection?
  • Can we test for potential bacterial infections leading up to the surgery (like the week before?)
  • Should we do a 6 week blood study with Luke to validate he has cyclic neutropenia?  (i.e. two draws a week for six weeks?)
Additional Neutropenia Resources:

National Neutropenia Network

Understanding Severe Chronic Neutropenia: A Handbook for Patients and their Families

13 June 2013

Major Milestone #3: Rolling Over

I sat down to write about milestones reached thus far by baby Luke and initially, I just outlined the two major milestones I thought he'd reached so far.. #1) Using his neck muscles to hold his head up and #2) resting on his elbows during tummy time with his head elevated and his shoulders and the top of his chest off the ground... but I realized while I was thinking about those two accomplishments that Luke has actually achieved so much more!  He's also succeeded with tracking objects with his eyes, turning his head 90 and later 180 degrees while tracking, reaching for objects, bringing his hands to midline to hold and transfer an object, batting at toys in his activity gym, laughing, cooing, and responding to verbal stimulation, attempting to hold his bottle while eating, etc. etc.... things I maybe took for granted as "normal" accomplishments with my first born. 

Matthew naturally developed his gross and fine motor skills without much intervention from us other than through normal playing.  This time it's different.  We have been trained to be very intentional with how we interact with baby Luke.  Luke receives physical therapy ten times per month, which works out to be at least twice and sometimes three times per week.  We are all invested in Luke's development and his team of caregivers includes three babysitters, two parents and a grandma that care for him regularly.  We have all committed to learning the various exercises taught to us by his three physical therapists and we focus on incorporating them into his care everyday.  If we think we are doing a lot... it's nothing compared to the routines we put Luke through.... lots of various positions, exercises, and thoughtful playtime.  Someone seems to always have something in mind for what he should be working on next. 

The best part is that when he succeeds, we all feel the joy that comes with our combined and continuous hard work!  It's kinda wonderful to be experiencing each developmental milestone with such exuberance and joy and we were beyond thrilled this week when Luke finally rolled over for the first time on Tuesday, June 11, 2013... when he was 5 months and 20 days old, something his brother did nearly 2 1/2 months sooner at 3 months and 3 days old.  Regardless of when milestones are reached, I love both boys with all my heart and for different reasons they each fill me with an unmeasurable love.  I read this blog post recently by a fellow momma of a child with Down syndrome and I thought she described the topic of milestones so beautifully... He is passing her up

10 June 2013

Flying planes

Matthew did something new tonight... He picked up a puzzle piece with a plane on it, held it above his head and "flew" it. After a bit of flying, he'd crash it and start over. Neither of us have ever told him or shown him how to fly a plane. It's so awesome to see his little brain working!!

09 June 2013

Iodine: A solution for infant constipation?

We have had an ongoing battle with Luke and his ability for bowel movements.  If you don't want to read about baby poop... this is your cue to stop reading...

Luke was exclusively breastfed up to about 5 months old and as a newborn, he had normal poop.  He passed meconium in the NICU (I cried tears of joy over that specific dirty diaper as it helped to reduce the concern for Luke having Hirschprung Disease, a problem more common in the DS population) and when we finally came home from the hospital, his poo was the normal yellow and seedy stuff.  It continued that way for some time like it was supposed to, but eventually he began to space out his bowel movements to once every 3 to5 days and then it was more like once every 5 to 7 days.  It was great for those of us changing his diapers and we didn't have concern as he didn't seem to be bothered by not going real often and additionally, our pediatrician once told us with Matthew (who waited 13 days once between bms!) that it was completely normal for breastfed babies to go that long between bm's because breastmilk is so perfectly designed for baby's body that they use it with high efficiency and there is virtually no waste for their body to get rid of!  I thought that was a pretty awesome explanation and a true testament to the miracle of life!  Although he was still exclusively breastfed, sometime around 3 months, his poop started to change... it was no longer yellow and seedy, instead it was more black (or possibly a super dark green) and it was the most foul smelling thing I'd ever smelled in my life and when the child passed gas... it was almost embarrassing how he could clear a room in 5 seconds flat (all while smiling and cooing like nothing was happening). 

I grew up on a dairy farm and have another child... being around (and sometimes after a day on the farm - even covered in) poop has never been a problem for me so don't think I'm overstating the grossness of this stuff.  Additionally, it was shiny and sticky - almost looking like meconium.  When this first started, he would fill an entire diaper with the stuff, but when we switched to formula, his output changed.  The best way I can describe it is no more than a tablespoon worth of poo once every 3 to 5 days and more recently, he has had severe constipation.  Last weekend, he had four very small bowel movements, each time screaming out in pain for between one and two hours and having multiple episodes of straining, complete with a red face, neck and chest before he was able to complete the job.  It was bad enough that the first time we went through it last weekend, I was in tears (and I'm generally pretty no-nonsense about that sort of stuff).  Fortunately I knew what to expect the next three times and Dustin was home to help support and comfort Luke through the while experience.

How we have responded to Luke's Pooping Problems...

  • We have had some success with just offering him one to two ounces of water per day in addition to his normal bottles - this has gotten him going more often and has seemed to give him some relief from straining, which is absolutely heartwrenching to witness
  • We are seeing a GI specialist later this month to check his anatomy and discuss potential for other issues... specifically, I have been bothered by the suggestion of Shwachman-Diamond Syndrome by our hematologist and it's something I want to discuss in detail with the folks in GI.  As far as symptoms go, Luke has the neutropenia and he also has what I think they describe as "greasy" stools, which are an indication of malabsorption.  That said, he is growing and appears to be thriving, so I'm not freaking out at this point about him potentially having SDS, but I do want to have a serious conversation about what we need to do to test for it and hopefully rule it out as a concern.
  • After reading the article below, I did order some USP Tincture of Iodine so we can do the iodine skin test as well as a bottle of Nascent Iodine to try in case it shows a deficiency.  Even if Luke doesn't need it, while I was researching it's effectiveness, I learned that it can really improve energy levels in adults, something that I'd be willing to try on myself!

The blog post below was copied and pasted from http://singofthemercies.com/our-journey-with-constipation/ because her page was coming up dark and I couldn't read it very well.... It's long, but discusses some homeopathic remedies to constipation...

It all started when Seth was 4 months old. I got the flu and my best friend offered to take Seth for the day. I had some frozen milk, so I reluctantly took her up on it and sent him on his way. At the time, he was having 3-4 baby bowel movements a day (yellow mustard kind). The next day, he had nothing, and it would continue that way for days at a time. He wouldn’t have a poopy diaper for 8-10 days, and when he did, it was like little rabbit pellets.

I tried everything natural that I could come up with: Epsom salt baths, prunes, prune juice, apple juice, LB extract (from the herbal store), Baby move, essential oils (two different companies), calcium/magnesium, leg exercises, etc. I would try each one for a week hoping for some change, but nothing seemed to help. I even did several together AND take things for me, so he would get it through the milk! I got super regular, but it didn’t seem to help him.

I mentioned it to two different doctors (same practice, different appointments/months), and they both said it was normal for some kids and I shouldn’t worry about it because he was exclusively breastfed. I didn’t believe them.  After 5 months, I finally resorted to using about 1/2 of a Pedia-Lax glycerin suppository every couple of days, just to give him some relief. They were supposed to take 15 minutes to work, but he would have a messy diaper within 5 minutes. I researched Hashimotos, obstructive bowel, etc. so I finally asked the doctor to give me a referral to a GI doctor. It took 6 MORE weeks.

Meanwhile, over the next month, on one Friday night, he couldn’t sleep. ALL NIGHT! He kept waking up, straining, and crying. SOMETHING wasn’t right. The next day, Saturday, I spent the whole day researching on the internet and in my books, crying out to God for an answer. Finally, I found something else to try.
According to the University of Michigan Health System, constipation is a symptom  of iodine deficiency. Once an iodine deficiency is definitively diagnosed, it is  often suggested that an individual incorporate more iodine-rich foods into the  diet or add iodized salt to meals, says the American Thyroid Association.
Read more: http://www.livestrong.com/article/493441-iodine-constipation/#ixzz2VSj0JMgg
Huh, I thought. I know that kiddos with Ds can have thyroid problems, so maybe he’s deficient in iodine!
I had some bottles of Nascent Iodine (after the Japanese Nuclear fallout threat, and Alaska being possibly in danger due to the wind currents), so I thought, what can it hurt. I’ll try an iodine skin test to see how he does. So, I put two drops of nascent iodine on the back of his wrist. I also put some of it on me. I could practically watch his absorb. Mine stayed for hours. The next day, HE HAD A MESSY DIAPER!! (Here’s an article on the effectiveness of nascent iodine. And btw, I got the nascent iodine on sale, but I can’t remember exactly where I ordered it, but the amazon link is the exact type I have and use.)

I thought to myself that maybe it was just because it had been a few days. Maybe the suppositories are helping his colon remember what it is supposed to do, so I waited again for a few days. I put it on again on Wednesday night. Thursday, he had THREE messy diapers! After that, I put a drop on the back of his wrist daily, and every day, he would have a poopy diaper!! I was SO excited that I had solved it!! (My husband was SO proud of me!! :D )

Finally, the appointment with the GI came. I took the iodine with me and told the gal that I had figured out what the problem was. She completely dismissed it and said it was just a fluke that his body had just figured out how to have a bowel movement again. (Honestly, that’s exactly what she told me!) WHAT?!?!! I did SIX MONTHS of different things to try to help his bowels “wake up” to no avail. I even used the scientific method to test my theory, stopping treatment – NO bowel movement. Start treatment – BOWEL MOVEMENT! HELLO!!! She also told me that I was wasting my money giving him ANY vitamins, because they weren’t doing any good. “People never used to take vitamins, and were fine.” she said. WHAT?!?! SERIOUSLY?!? People also used to work in the soil IN THE SUNSHINE, eat fresh-cut organic food, fresh grass-fed meat, AND work their tails off too!! It isn’t like it WAS all those years ago, AND people STILL died of all kinds of diseases! YOU, my supremely “educated” doctor, are an IDIOT!

Oh, well, bringing my blood pressure back down now….

She did check his little bottom and said everything looked fine physically (which is what I really wanted to know anyway) and sent us on our way. Oh yeah, btw, when we got the bill, it was for $786!!! For 10 minutes of being berated by this gal!! Yeah, I’m still not over it…her name is Dr. Claire Wilson, btw. NEVER go to her!! She wasn’t even the GI I was supposed to see! Gaaa….

Anyway, my naturopath was impressed with my sleuthing. I have since taken him off of the iodine after he started taking his multivitamin, zinc, and selenium. I slowly quit applying it, and he hasn’t had a problem since. Usually he goes 2-3x a day, but he definitely goes at least once a day. And HE is a happy little boy!

And that, my friends, is my story. I SURELY hope it helps your child with Down syndrome. PLEASE let me know if it does!

Cloth Diapering Options / New Lukie Pics

I've shared before that we've begun cloth diapering recently and up until now, I've mostly fixated on Bumgenius (referred to as BGs from here on out) 4.0 All in Ones (AIOs) and have been pretty successful at building a stash large enough for both boys.  Over the last few weeks, I've gotten a bit adventurous and have branched out to try some other brands.  Initially, I chose a few Tots Bots AIOs called Easy Fits and was pleased with their more trim design than the BGs.  We've been putting Matthew in a disposable overnight because he's a pretty heavy wetter as we just couldn't figure out how to keep him in cloth overnight without leaks... in an attempt to find a solution, I purchased a few Goodmama's online (which I haven't received yet) and since they don't have a built in laminate / waterproof outer, I made my first stop in to Mama Birds, a local cloth diapering store yesterday to purchase a few fitted covers to use on top of them.  While I was there, I picked up three Grovia brand one size AIOs and we're just finally trying one on Luke this morning after multiple washes yesterday.  I like the prints, but even more, I LOVE the super trim design... I've been eye-ing them online for a while, but without being able to see, touch, twist and check them out, it's been hard for me to jump in at $23 a pop for something I wasn't sure I'd like!  They are much more narrow than the BGs between the legs and as such, they don't have that super bulky look and feel.  I hope we're also satisfied with their absorbency.. if so, I can see me de-stashing some of our original BGs and buying more of the Grovias and Tots Bots in their place. 

There are some pics mixed in below of Luke wearing one of his Grovia's with a cute owl print!  I can't believe our sweet little munchkin will be six months old in a few short weeks! 

I think I've posted this same pose a hundred times over, but I can't help it... it just never gets old!

"Seriously Mom, please stop dressing me up and taking photos!"

Luke has been chewing on his fingers, toys, etc a lot lately... I think he's finally teething!

Luke was smiling for daddy this morning....

He hasn't quite rolled over on his own yet, but he's working on it!

I just love all of Luke's new hair... it's been getting really thick on top lately...

Matthew sharing his tractors with Luke

A momma can never have too many photos of her little one's feet!

Luke keeping a close on Matthew's tractor

06 June 2013

Learning to Golf

Matthew LOVES to play outside, in fact, some evenings we find it near impossible to get him inside so we can prepare and eat dinner after getting home from work.  Tonight he willingly came inside to eat, however was ready to head back out following dinner for some playtime.  Although it seemed to have rained buckets full all day, he wasn't deterred and we spent some precious mommy / Matthew time "mowing" and "golfing" while Dustin cuddled and fed Luke indoors.

My videos are totally ameteur and un-edited, but I thought they were worth sharing... his golf swing is pretty hilarious! 

In all seriousness though, I really hope introducing these kinds of toys now will help him to develop an interest in learning to golf as he grows older!  (I wouldn't mind if he took up mowing too!)

What is Neutropenia?

A friend shared this link about Neutropenia and I wanted to publish it for Luke's followers.


Luke has cyclic neutropenia, which is how we are explaining the up and down bounce in his white blood cell count / absolute neutrophil count.  Fortunately, Luke has been anti-symptomatic at this point and he hasn't encountered any odd rashes or infections yet that have been concerning.  We are monitoring his WBC and ANC with a monthly blood draw for now.  Hopefully it's something he outgrows, but it can be life-threatening and is very serious if an infection occurs.  We will continue to learn and pray that Luke doesn't develop anything serious.

This article sums it up nicely: Guidelines for Diagnosis and Treatment of SDS

A note to self: I discovered this comment on a thread about neutropenia recently and wanted to have this info to review next time I get fired up and motivated to start using supplements....

Vitamin C, Vitamin D, and Vitamin B12 will help bring up the white blood cells & strengthen the immune system. Baby DhA will also help. My son had low WBC at his 12 month check up, and he was back within normal range two months later. I use Rainbow Light Infant Multivitamin Powder, Infant Vitamin D drops, Nordic Baby DHA, Infant probiotics. If she is bottlefed, you may want to see a naturopath & get an infant enzyme, she may not be digesting her food to get the vitamins from her food...

05 June 2013

Open Heart Surgery - Facility / Surgeon Stats

This information was provided to me by a subsidiary of our health insurance company who employs a congenital heart disease nurse case manager who is offered to us as we seek care for Luke's heart defect.  She did some research and provided these stats as we pursue our decision on where and who will perform Luke's surgery.

Below is the information provided to us from the facilities you requested. 
Note:  the number by each surgeon's name is the number of surgeries performed last year.

Children's Hospital of Boston:
Sitaram Emani 330
Pedro del Nido 253
Frank Pigula 253
Christopher Baird 94 (2012 was the 1st year Dr Baird was the primary surgeon at BCH)
Open case volume:  933
Discharge mortality:  3 (complex CHD conditions)

Number of years affiliated with current program:  1
Career total number of years managing CHD patients:  1
Career total number of CHD surgical procedures performed as Primary Surgeon:  94
Number of CHD surgeries performed last year:  94

Children's Hospital of Philadelphia:
Thomas Spray 332
J William Gaynor 194
Peter Gruber 172
Open case volume:  528
Disharge Mortality:  3 (complex CHD conditions)

University of Michigan Hospitals
Jennifer Hirsch 258
Richard Onye 226
Edward Bove 207
Open case volume:  521
Discharge mortality:  3 (complex CHD conditions)

Nationwide Children's Hospital:
Alistair Philips 222
Patrick McConnell 180
Mark Galantowicz 153
Open case volume:  212
Discharge mortality:  1 (complex CHD conditions)

Monitoring for signs of pulmonary hypertension

As we continue to weigh the options for Luke's open heart surgery, are are still monitoring him for specific symptoms that we can clinically observe as related to pulmonary hypertension, they include:
  • Poor appetite
  • Poor growth
  • Nausea
  • Vomiting
  • Lethargy
  • Sweating
  • Tachypnea (unusually fast breathing)
  • Tachycardia (rapid heart beat)
As of now, we aren't seeing any of these signs, however his feedings have seemed a bit off over the past week.  Beginning tomorrow, I'm going to track his intake for a few days so I can validate his true appetite.. with multiple people feeding him - myself, Dustin and his sitters, it's hard to gauge sometimes how much he's actually consuming.  We have held off from starting rice cereal although he's now 5 1/2 months due to him not having a lot of neck strength and also due to the suggestion of his pediatrician.  We started Matthew on cereal at 4 months and Dustin and I had a brief discussion this morning about attempting to start with Luke over the weekend.  I'm not seeing any of the other signs listed above although his hands did turn purple for maybe 5 minutes following his bath one night last week... I'm wondering if that could have been because of him moving from a sitting position in the bathtub to laying on his back as I dressed him afterwards?

As we sort through information on pediatric heart centers, other items we're looking into:
  • Patient volume and success rate for the facilities as well as the specific cardiothoracic surgeons at Boston, CHOP, U of M as well as Nationwide Childrens.
    • I think we'd like to continue following with our initial cardiologist at Cleveland Clinic for Luke, however we will likely pursue surgery elsewhere based on other centers having a higher volume of this particular operation as well as a larger peds cardiac ICU for recovery.
  • Requesting that we more closely monitor Luke's heart function / pulmonary distress to detect potential hypertension sooner rather than later (following his recent heart cath, we were moved from every 6 weeks to every 12 weeks for appointments - I think I would be more comfortable if we were to go back to every 6 weeks)
  • Luke's neurologist is sending me studies / reports on the risk of neurodevelopmental delays associated with OHS and the use of the brain heart bypass machine
  • With him now being diagnosed with tracheomalacia (instead of laryngomalacia as indicated by the first ENT in Cleveland), we need to make sure he has a brochial scope prior to his actual OHS to validate that his airway can support him being intubated and more importantly that he extubates without difficulty (also to verify his potential needs for CPAP to stint open the airway as an intermediate step between intubation and extubation)
We've been learning a lot lately, but fortunately we are not in an emergency situation with Luke and have the luxury of time to get comfortable with the details.  Also, we've been sorting through the ambiguity and seem to be getting to a place where we are asking the right questions and learning a lot about the process along the way.  I have also recently been hooked up with a local mom who has a child that had OHS at Boston and am interested in meeting with her to learn about their experience.

Other notes... if / when he is put under next time, in addition to the bronch that ENT wants to do, Luke's neurologist also wants to do an MRI.

02 June 2013

Open Heart Surgery - Different Opinions

I'd rather update on something other than doctor's appointments, but for now those are the kinds of things we've been dealing with.... so here goes...coming to you live from the home computer,  this week's medial wrap up....

Fluoroscopy Results
Luke does indeed have tracheomalacia and additionally he appears to have some level of laryngomalacia.  The tracheomalacia was diagnosed following a fluoroscopy on Thursday.  Hopefully it is something that he will grow out of as he gets older and since the severe narrowing of his trachea doesn't seem to be impending his ability to eat and grow, its something I think we can put to the back of our minds for now.

Heart Surgery Update
Last week, we also received some second opinions on the timing and location for Luke's open heart surgery to repair his AV Canal.  We haven't come to a decision yet on where or when we will do anything, but we have learned some new things to think about...

Boston initially suggested that we do surgery between 8-10 months, definitely before 12 months of age. Nationwide Children's in Columbus suggested 15 months and Cleveland Clinic is suggesting 18-24 months.  Obviously there is a wide disparity amongst their thoughts.  Some of the variables at play that are driving some of the different schools of thought include:
  • Potential for pulmonary hypertension.  Luke doesn't appear to be showing signs of this yet, however once it comes on it will negatively affect his lungs.  We want to do surgery before this starts...
  • Potential for neurodevelopmental delays. Since they will stop Luke's heart for the surgery and will place him on a lung heart bypass machine to breathe and pump his blood for him, there is a huge risk of oxygen not getting to his brain for a split or maybe even multiple seconds - hence the potential for brain damage and further delays.  Since we know that Luke is already pre-disposed to delays because of him having Down syndrome, this is an even greater concern.  There might be some benefit to him being older for the surgery as he may at that point be at a decreased risk for additional and substantial delays.  I need to learn more about  this....
  • Technical skill of the surgeon completing the procedure... the AV Canal is apparently pretty straightforward to repair, but they will also have to work on his mitral valve and if they are off even just one millimeter with the repair, Luke could end up with either a narrow mitral valve (which apparently his anatomy might already predisposed to) or a leaky mitral valve.  If he were to have a leaky valve, it could lead to a second and third follow up surgery to repair and could adversely affect his life expectancy.  
  • Follow up care... if we go to Boston, we need to be comfortable with the fact that if Luke were to need emergency surgical follow up care once home, it's unlikely that we would be able to get to Boston and we would have to make do with taking him to a center that doesn't know his history.  
  • Depending on the source you look at, Boston is #1, Columbus is #4 and Cleveland is #14.  Other centers such as Philly and U of Michigan also rank high.  
Fortunately we don't have to make all of the decisions today, but we will have to soon so we will continue to learn as much as we can so that we are doing the right thing for our family and baby Luke.

On a brighter note, here are some pics of the boys before we took off for Nationwide Children's on Thursday morning.

Matthew has always loved tractors, but what was once a love seems to be becoming a fascination for him!  All he talks about are tractors and he loves to tell us that they go "brrmm brrmm".  It used to be Dustin who waited for the Fastline to come in that mail, now it seems that Matthew is just as excited when it arrives!

Matthew continues to impress me with his love for baby Luke.  He kisses him multiple times each day... we are blessed for them to have such an awesome connection!  Luke continues to get better with his head, neck and trunk strength.  He sat in his Bumbo seat for close to 30 minutes that morning!!