Poor B... more surgery on the horizon?

So, if we're not friends on Facebook, you may not know this but Brice was admitted to the hospital for 24 hours for post-op dehydration.

We landed back in the ER on Monday --- the kid endured another IV and was awarded an overnight stay in room 509. Thankfully, this was the turning point for him. He received  one dose of decadron on Monday night and another dose Tuesday morning. By the time we left the hospital, he was eating like normal and almost drinking like normal. He still refuses to take any and all medication by mouth... which is further complicating a new issue we've discovered...

While in the ER, after being told Brice was being admitted (but before being taken to a floor), our GI called. Drum roll please........................... Brice has an insane yeast overgrowth in his small intestine (found in the duodenal aspirate). The high end of normal is 10^5 and he is 4x10^7

 Today, he started a two week course of Diflucan. But the real kicker from his most recent EGD is that he has active reflux esophagitis. Technically, he should not have this because he takes 20mg of Nexium twice daily - that is a high dose for a child - and somehow, it's not enough. We don't really have the option of putting him on a higher dose. Our GI mentioned the very, very real possibility of a Nissen Fundoplication. He said we want to try to avoid this at all costs (which George and I feel the same about) but if he is still symptomatic after we treat the yeast, Brice will likely need a nissen.

I don't really know which direction I want to go on this. I really don't want him to have to endure another surgical procedure - and this one is more significant than a T&A. But at the same time, I don't want him to suffer from esophagitis. Not to mention, if that is left untreated, it raises his risk for a condition known as Barrett's Esophagus (essentially, the esophageal tissue changes to something similar to intestinal tissue). With Barrett's Esophagus, there is a risk of esophageal adenocarcinoma (yes, cancer).

If Brice were to have the Nissen, he would no longer have to take anti-reflux medications. No more Nexium eliminates the risk of bone density loss due to long-term PPI use - if he were to continue on Nexium, he would have a bone scan at 5.

We just want to feel confident in whatever decision we have to make. But with that said, I am not sure we will be able to. If we go one way, we run the risk of X and if we go the other way, we run the risk of Y. I really don't think this will be an easy decision to make. I can tell you this much, our decision will be very much driven by Brice's needs and not other people's opinions. At the end of the day, we want him happy, healthy and thriving - not in pain.

I also spoke to our GI, this morning about the vocal nodules and lymphoid hyperplasia (in the biopsied nasal tissue) --- he said both are likely due to GERD. I feel like reflux is out biggest enemy yet. I am ready to win the battle. We follow-up with GI on November 11 --- more to come then :)

Inside of...

... less than two weeks...

Mr. Brice has endured the following:

four IV's
two OR visits
two intubations/extubations for anesthesia

two ER visits

two bouts with dehydration
several bags of fluid

one colonoscopy

one upper endoscopy

one tonsillectomy

one adenoidectomy

one nasal endoscopy

one bronchoscopy

one laryngoscopy

lots of Zofran, Motrin and pain meds

and even more love, hugs, kisses and snuggles

On Thursday, October 13, Brice had the colonscopy & upper endoscopy (with a duodenal aspirate). His GI scheduled these procedures because of some belly/poop issues involving blood. Thankfully, upon visual (endoscopic) evaluation, everything looks as it should. We will have the biopsy and aspirate results back on Monday. Everything seemed okay. We took him to Chick Fil A for lunch and Target for a new toy. He played with Pierce and even went to his cousin's 7th birthday party. And then 8:30pm hit and HOLY PUKEFEST FOLKS... always a joy having lots of vomit, the consistency of pudding, on your shoulder, down your shirt, into your bra... lovely, just lovely (and yes, you can thank me later for that stomach-turning visual... and thank me even more for not giving you a far worse visual). And he continued to vomit until the poor kid was vomiting bile... 8 times inside of 2 hours. I took him into the ER. They ran bloodwork, started an IV, took an abdominal x-ray and administered Zofran (I swear, this drug is like a miracle worker - maybe I should write their manufacturer a letter - it's saved my life more times than I can think of... well maybe not my life, because that seems a tad extreme, but my sanity). His bloodwork showed dehydration and the x-ray was consistent with a person having a colonoscopy (not sure what that means). The doctors concurred (ER and GI on call) that the vomiting was likely due to the procedures.... or so we thought...

On Saturday, we took the boys to the pumpkin patch at Brice's school. Instead of carving their pumpkins, we decided they could paint them. So imagine this... we're en route to Target... to purchase said paint... Pierce starts coughing... I ask if my little buddy is okay... he looks confused... and then it happens... PROJECTILE VOMIT... undigested hotdog chunks and all (oh yes, people, you're getting another visual because I had the pleasure of cleaning it up... you're welcome). We went to a Halloween party at our neighbor's home... and Pierce puked again... the next morning, he puked again... all over the couch. Seriously, I don't know if I've ever experienced that much vomit in my life - and I've experienced a lot from other people (hey, it was our younger 20s - no kids, lots of time to experience all that NOLA has to offer). But I digress... obviously, a virus thought out home was a lovely place to visit.

And then Monday happened... that evening the virus decided to slam both George & I straight into the floor. I thought there was some unwritten rule somewhere that both parents could never, should never, ever be sick simultaneously... our ship was slowly sinking... it was a rough 24 hours. [total side note: George puked in the kitchen sink - no worries it's stainless and I scrubbed it - but the noise that it made scared the bejeezum out of Pierce - there I sat, on the couch, with one screaming kid, the other one crying, trying my hardest not to puke myself... oh the memories]

Fast forward a couple days... Wednesday, October 19, Brice had the T&A and other scopes. The doctor took a nasal biopsy to look at the cilia (for a few reasons - will discuss once we get results). His adenoids were VERY bumpy/rocky looking - consistent with being chronically infected/inflammed. He has bilateral nodules on his larynx and a broken blood vessel. The nodules are a tad confusing because those usually are a result of chronic vocal abuse. ENT told us to mention it to ST but even she was confused by it - especially since he doesn't have a raspy/hoarse voice (common with nodules).

Of course, in true Brice fashion, he wouldn't take his pain medicine by mouth. The (less than brilliant) recovery nurse suggested that he take a 30-45 minute nap and then maybe he would be willing... ummm no. I should have asked where I could send her a thank you note. Because of that and us having to wait 45ish minutes for an IV dose of morphine, the poor kid's pain was out of control. The morphine dose had NO effect on him. We had to hold him down and try to force his other pain med down orally. He slept on and off for hours... refused to eat or drink. At 3:30pm, our nurse said that if he didn't turn the corner within the hour, he would be moved to the floor because the short stay unit closed at 6pm. George and I took Brice on a walk and made a game out of drinking (you have to take a sip when we reach the window/door/hallway)... and it worked! He consumed 4oz of apple juice and 2 oz of ice cream - we were discharged exactly one hour later!! Brice did very well Wednesday evening - he tried to eat a mini powdered donut and a piece of pizza. Thursday was a decent day until 3pm. Friday morning, we thought we were going to have to head back to the hospital. My older sister saved the day with a smoothie - I was able to sneak his meds into the smoothie and life seemed okay. Saturday was MISERABLE - we reluctantly landed in the ER around 2:30pm.

When the nurse was doing his IV, she mentioned that with the way he presented and the fact that he was post-op, he was going to be admitted. The doctor was FABULOUS and it didn't hurt that she was the momma of a redhead - she could totally commiserate with the strong will they have! He was given a bolus, steroids, morphine and then they started a dextrose drip. He had a small bout with vomiting (well it came up and he forced it back down) so they give him some Zofran. Around 6pm, she and I discussed our options... 1) she could admit him or 2) we could stay another hour for a little more in fluids and another morphine dose. We decided to go with option 2 because it's always much nicer to sleep in your own bed on your own couch.

Today was another rough day... no medicine and nothing by mouth. We told him that we would go to Chuck E Cheese if he would drink something (you know we were desperate!). We bought him a special cup while there and he took a few sips. When we got home, he drank a small bit more - maybe a total of 2 ounces. Around 5pm, we were preparing to head back into the ER and this time, knowingly, to be admitted. But somehow, I was FINALLY able to convince him to drink something... and he took in 6 ounces!! He still isn't eating and as I type this, he no longer wants to drink, but hey, we're seeing minor progress. Hopefully it continues!

Inroducing Miss Grace

{only 5 weeks late on this post}

My best friend, Holly, gave birth to her rainbow baby,

Grace Gillian

on 

August 24

She is one of the most beautiful babies I have ever laid eyes on

Within a couple hours of her birth, during her bath, one of the nurses noticed that Grace was breathing rapidly. They took her to the nursery to evaluate her and then she spent the next 11 days in the NICU. After a few scary moments, one dose of surfactant, many sticks, pokes and prods, Grace told the NICU it was time for her to go home because she didn't belong there.

Grace is home and capturing everyone's heart. She is so easy and so loveable. Now, I just need to find some time to hop on a plane up the East Coast to go snuggle, love and kiss this sweet baby girl. Isn't she stunning?

Choo... Choo... Someone's THREE!

I remember that morning, December 27, 2007 when I I held the first pregnancy test up to the light in the strangest way because I was certain I could see the faintest line if I held it just like so... and then taking another test and after what seemed like hours that word popped up "pregnant."...

I remember anxiously calling my doctor and getting bloodwork... I also remember that sick feeling when they called back and said things didn't look so good...

I remember impatiently waiting for the next 2 days to go by and getting another beta done and my hcg level being 39 (it had tripled!)...

I remember the first time I fell in love with you...

I remember the days you lived within my womb...

I remember seeing you for the first time at 6 weeks - a little teeny, tiny sak - we couldn't see your heart beating yet...

I remember seeing your heart beating and I remember hearing it beating for the first time...

I remember at 15w2d pregnant, finding out that you were a boy and not being able to control my tears of pure happiness...

I remember your first moments of movement that I could actually feel - it felt like 3 little knocks. I wasn't sure if I was really feeling you but then you did it again and I knew it was you...

I remember waking up at 2:45am on August 28 to a very odd feeling - upon going to the bathroom I realized my membranes had ruptured and I will always remember the way your daddy flew out of bed when I told him...

I remember driving to the hospital because I am a control freak like that...

I remember waddling with a towel between my legs through the parking garage... through the hospital... to the elevators... into Labor & Delivery...

I remember having to pee in a bedpan... and on the 4th time, coming down too quickly causing your daddy to spill my pee everywhere...

I remember reading all of the well wishes pouring in from our friends and family... and then

I remember them saying it was time to have a baby...

I remember going into the OR... and more importantly, at 10:11 am on August 28

I remember your first cry

I remember the first time I saw you

I remember the first time I fell in love with you all over again

I cannot believe that my baby is already three (well 3 years and 1 month ;) )










Baby boy... I mean BIG boy - I love you so much. Happy 3rd Birthday!

Appointments Galore!

So I 110% dropped the ball this morning... I forgot about Pierce's neurology appointment... and it was written in my planner :( I am a bit frazzled at the moment and I am sick on top of it all. I think I need to invest in something like this:

source

 We had a nice break from running the doctor circuit but it's about to start back up --- here is a glimpse:

Fri Sept 30 --- 9:30 --- Pulmonology (Pierce)
Mon Oct 3 --- 9:00 --- Pediatrician (Brice - 3 year well-visit {super late!})
Wed Oct 12 --- 9:15 --- GI (Brice)
Wed Oct 12 --- 11:00 --- Neurology (Pierce)
Tues Oct 18 --- 9:15 --- Orthopedics (Pierce)
Wed Oct 19 --- Tosillectomy, Adenoidectomy, Bronchoscopy, Laryngoscopy (Brice)
Mon Oct 31 --- 9:45 --- ENT (Pierce)
Wed Nov 16 --- 1:45 --- ENT (Brice - post.op)
Thur Nov 17 --- 10:30 --- Swallow Study (Pierce)
Tues Dec 13 --- 10:00 --- Immunology (Brice & Pierce)
Mon Dec 19 --- 10:30 --- GI (Pierce)
Tues Dec 20 --- 8:30 --- Genetics (Pierce & Brice)
Tues Dec 20 --- 3:30 --- Opthamology (Pierce)
(And Pierce will have his 2 year well-visit at some point after December 18)

And in between all of those doctor appointments/procedures/surgeries, we have several birthday parties, 1 wedding, a cute little red-head's Pumpkin Palooza at school, a USMC Boot Camp graduation, an engagement party, some Black Friday shopping, a much-needed trip to Baltimore to kiss and love on a sweet new(-ish) baby, a wild little blonde's 2nd birthday and the holidays! Fingers crossed that I make it to January 1, 2012 all in one piece ;)

Pertussis, Maybe?

The last 36ish hours have been strange. It all started off after Brice's shot yesterday. He didn't walk from the moment he got it until 24ish hours later (that would be today) in the ER... to fill in those hours, here is a brief synopsis. Brice gets a shot --- I assumed it was antibiotics --- Brice asked me to carry him because he hurt --- we went home --- Brice and I went to the pharmacy to pick up the boys antibiotics --- Brice peed on himself in the car --- we snuggle on the couch --- Brice pees on both of us --- we go to bed --- Brice wakes up screaming/crying that he is peeing... he wasn't so I raced him to the bathroom --- Brice wakes up this morning and wants to be held because he is still hurting --- Brice spend his morning on the couch... not moving... asking for help to sit up --- we get Brice dressed so go visit G's dad and then my mom --- Brice pees on the couch (yay for leather) --- I send an SOS to other moms on FB --- I call our immunologist and she recommends taking him into the ER for a chest x-ray, scans and bloodwork --- we go to Children's, get triaged (Brice FINALLY WALKS after they made me leave the triage room) and wait in the super packed waiting room --- I page our immunologist (because she is awesome like that and gave me her pager #) --- I tell her it's packed and she said she was happy to hear that he walked --- I explained that I was okay with leaving but his cough was changing (yet again) but becoming less frequent (!)... he gets into these coughing fits where he is coughing so much that between coughs he makes this strange, almost exaggerated sound upon inspiration - it sounds like he is gasping for air --- she mentions the possibility of pertussis but I don't think much of it --- we all go to my mom's --- I run to the store and while I am sitting in Hobby Lobby's parking lot I decide to google pertussis sound clips --- sure enough, that is EXACTLY how my kiddo sounds --- I page her again --- we talk about pertussis at length --- basically, at this point there isn't much more that we can do but ride the wave --- we have him (and Pierce) on antibiotics --- it's more of a concern in kids younger than a year (but primarily younger than 6 months) and elderly that have waning immunity --- I am super concerned about other people we've been in contact with --- we will be taking him to the pediatrician on Monday to get swabbed and it takes about a week or so to get the results.

Okay - so a few other things - our immunologist's husband is a pediatrician (what an awesome team!). He is fairly certain that Brice received a shot of Decadron (steroids) versus antibiotics (Rocephin). He thinks that is what caused Brice to not want to walk - well the pain involved with the steroid shot. As for the incontinence, we are thinking that is somehow tied into the pain. He is back to using the toilet successfully and his temperament has changed, for the better, this evening. We are keeping everything crossed that he continues up this slope! If you don't mind, keep the kid in your prayers - specifically, that he does not have pertussis. Thanks!

Now I am off to finish watching LSU win - Geaux Tigers!

Welcome Lung Season

So Brice had croup on Monday. He was fever free on Wednesday and Thursday. We sent him to school yesterday, but an hour after I dropped him off, his teacher called and said that he was crying a lot. When I picked him up she stated that he was not acting like himself. Last night, his cough (which sounded less barky) was much more frequent. He would have moments in between coughs where he was gasping for breath. He couldn't sleep and was very miserable. We gave him a breathing treatment and eventually he was able to fall asleep.

First thing this morning, he said "mom, I need to go to the doctor." Our ST came at 8am and I scheduled a pedi appointment for 1:30pm. He started feeling warm so I took his temp --- 101.3* --- after taking his temp, ST stated that Pierce felt a little warm --- his temp was 100.7* --- yay ;(

The pedi examined Brice and spent a good bit of time listening to his chest... his bout with croup moved into this chest. He now has bronchitis. She could hear crackling sounds throughout his lungs but no focal spot. She gave him a shot in the hopes that if this is a pneumonia trying to occur, maybe it will won't happen. He also has an ear infection (right ear) and is on azithromycin for 5 days. While there, I mentioned that Pierce had a fever this morning and I could hear him coughing during his nap. She listened to his chest and examined him --- he also has bronchitis and is on azithromycin for 5 days. If Brice gets any worse over the weekend, she said to take him into the ER and if he isn't any better by Monday, she is ordering a chest x-ray.

I spoke with our immunologist about our appointment. We are just to keep track of everything. For now, we are still scheduled to see them in December. If infections start happening more frequently, we will be seen sooner. IVIG talks happened (very briefly mentioned but still) and possible prophylactic antibiotics again. Thankfully, if we do wind up on the ER, she is on call this weekend!

Here is to hoping my boys feel better quickly - especially Brice because he is FLAT MISERABLE. It breaks my heart that I can't do anything more to make him feel any better. I am really hoping that he makes some progress over night! I am also hoping that lung season is a little less eventful!

Have a great weekend!

"If..."

• If I were to get pregnant again I would be VERY wealthy considering I can't get pregnant (seeing as how I have no uterus)
• If I could have any job in the world I would continue staying at home but actively pursuing custom designs, party/event planning and photography or being a surgeon (ha! talk about two different jobs!)
• If I had a day to myself I would have brunch at Court of Two Sisters, sleep, get a facial, sleep, get a manicure, sleep, get a pedicure, sleep, shop, sleep, have dinner with a margarita (with Patron) and sleep some more ;)
• If I could get married all over again I would do it the way I originally wanted to (but the husband vetoed me)... elope.
• If I could live anywhere in the US I would probably stay right here - NOLA just doesn't leave your blood and doesn't let you leave her easily.
• If Brice were a girl he would have been named Ellie and if Pierce were a girl he would have been named Fiona or Lillian (I, again, got vetoed on Fiona because of our last name). But if I could re-name Pierce (a boy name) it would be Barrett (guess what - another veto - I am surprised I got away with Pierce Benedicto!)
• If I could have any talent in the world I would be supermom - I swear, some moms do it all... I just don't have that trait - I get done what I can and the rest, eventually, falls into place - I wish I could say my house was spotless 100% of the time but it isn't!
• If you met me in real life you would definitely want to be my friend ;) haha - how arrogant but in reality, I am fairly easy to get along with
• If I could go back to school and get a different degree I would go to med school and specialize in pediatrics, specifically, neonatology.
• If money were not an object I would have absolutely no medical debt/student loans, new but practical/reasonable vehicles, and a live-in chef and personal trainer!
• If I could meet one celebrity ugh I have no clue - maybe Chelsea Handler because she says everything I would like to say to people but am too nice to say...
• If I could only shop at one store for the rest of my life if I had to pay and it was the only place I could shop for every facet of my life... Target (<-- what a total mom answer) --- but if money were no object, Saks.
• If we get another pet I would get a handler to take care of our pets... seriously, we are at our limits with two boxers, two cats and three turtles - no other living, breathing non-two-legged beings are allowed
• If I could go on a trip, RIGHT NOW, I'd want to go to Ireland.
• If I had to chose between a house cleaner and a personal chef, I'd pick the personal chef (remember my answer above about money not being an object!)
• If I had the option of plastic surgery I'd get the girls' lifted because breastfeeding did NO justice to me and a tummy tuck because pregnancy, well it was pregnancy...

(The "If..." post was found on Heather's blog )

all over the place...

Blah... I suckity-suck at blogging again... I mean, I've pulled out the laptop several times to blog but then something takes away my attention... oh well...

Both boys look like they've responded to the Pneumovax23 vaccine:
BRICE


Pierce


We follow-up in December for more labwork - fingers crossed their levels remain stable! If not, IVIG talks will resume. But for now, we are loving the fact that things are looking positive!

A very cute little redhead that made me a mommy had a birthday on August 28 --- we had a blast! Brice's party will have a post of it's own :)

Speaking of Brice, he saw ENT today and is scheduled to have a tonsillectomy, adenoidectomy, bronchoscopy and laryngoscopy in mid-October. Our ENT said that Brice's history has way too much substantial evidence in support of the above surgeries/procedures, He is fairly confident that Brice stands to benefit quite a bit from having his tonsils removed. Given B's history with pneumonias, bronchiolitis, wheezing, croup, etc, he wants to scope his airway/lungs to make sure everything's ok. He doesn't anticipate seeing anything off per say but since Brice will be under general anesthesia, he said he may as well do it now.

We were in the ER last night with Brice... he has a pretty nasty case of croup :( Poor kiddo is in quite a bit of pain and his cough makes my lungs hurt. He started with a low fever (100*) on Sunday evening. I gave him a dose of Motrin to prep for a nighttime spike... 12:15am = 103*... 6:45am = 102.3*... 11:45am = 102*... 5:45pm = 102.3* --- between his Motrin doses, he would stay in the 101s --- in the ER, around 11pm, he was 103.8*. They did a chest x-ray (and included his neck in the field) --- no focal pneumonia (!) but it did show some viral patchiness in his lungs and steeples sign (consistent with croup). They administered a dose or OraPred (oral steroids) and gave an Rx for two more doses. Today was rough on him... any time he coughs, he cries. He sounds like he is wheezing but apparently it is stridor since croup is upper respiratory. He is hoarse but fever free as we speak :)

Pierce had a GI appt today - some other doctors on his case were marginally concerned about his lack of weight gain but his GI isn't. Pierce had a swallow study on August 23 --- it showed pooling in his valleculae - the good news is that he clears it with a swallow... the not so good news is that it puts him at a much higher risk for aspirating. The speech pathologist noted that he has inadequate tongue base retraction. Dr. A said this is unfortunately something he can't fix and that will never fix itself. Pierce will eventually learn to accommodate this issue on his own - he will probably eat slower, etc. We have a follow-up swallow study in November and Dr. A plans on repeating swallow studies every 3-4 months for awhile. For now, we are thickening and fortifying his feeds (5oz coconut milk + 1 scoop of Neocate, Jr + 1tbsp oatmeal). He is not allowed to drink out of straws as it presents liquid at a greater force of speed and really ups his chance of aspirating.

Overall, Pierce is doing VERY well. He climbs non-stop and has an amazing amount of energy for someone that is barely 24lbs and 32" tall! We are amazed at his ever-expanding vocabulary. Lately, he gives the BEST squeeze hugs and big open-mouthed wet, sloppy kisses!!

Brice started school --- another post of it's own --- he goes two days a week from 8:45-2:45 and L-O-V-E-S it!! I have days where I just stare at him and think "you're not a toddler anymore - you really are a little kid" - how has time gone by so quickly?! It's very bittersweet - I love the kid he is becoming but I dearly miss the baby/toddler he once was.

As crazy and chaotic as things are lately, I am really enjoying life. I am happy and learning how to fully embrace being perfectly imperfect. It's tough but I have a great group of guys in my life - from the daddy down to the littlest man... life is good.

Answers on Thursday {hopefully}

We followed up with immunology today... Before I dive into the specifics, I want to explain a few things. I have had some friends and family tell me that they are so lost in the medical lingo but they try to keep up with the boys. I am going to try and break it down for you :)

• Immunodeficiency - as with many other things, can be of varying degrees, can be short-term (transient) or long-term (chronic, life-long)... without getting too specific, basically on some level, their immune system appears to not be working like it should be. 
• Their immune systems did not respond to one of the normal childhood vaccines, PCV-7 specifically. This vaccination offers protection against ear infections, sinusitis, pneumonia, meningitis and blood infections. It is given in 4 doses - at 2 months, 4 months, 6 months and 12-15 months. Once you've completed the 4 dose series, you can receive PCV-13 (protection against an additional 6 strains of pneumococcal bacteria). According to immunology, after 3 doses, a child should have adequate protection. Pierce and Brice both received 4 doses of PCV-7 and Brice received 1 dose of PCV-13.
  They each had bloodwork to look at their titers (antibodies in the blood reflective of past exposure to an antigen - or something that the body did not recognize as being a part of itself). The test looked at 14 different pneumococcal strains (the most common strains). Pierce showed protection against 2/14 and Brice was 1/14. Even without the respective 4 and 5 vaccines they each received, their levels should have been higher given their past history with infections.
• IVIG - this is a type of therapy that can be used for many different health conditions, one of which is immunodeficiency. IVIG = Intravenous Immunoglobulin is basically IV infusion of antibodies. I explained the process a little more HERE

Okay, I hope that clarified things a little more :) Now onto updates ---

• Brice --- presently on a prophylactic dose of 250mg Amoxicillan once a day (for headaches, tender sinuses upon palpation , purple under eyes). His Memory B Cell function came back low (labs are in the car but I will post when I can). On a scale of 8-19, he was a 4 and his IgM memory was a 9 (scale of 10-19). If his titers come back low, he will start IVIG.
• Pierce --- presently on a prophylactic dose of 480mg Amoxicillan once a day (poor Pierce starts with fever no more than 2 days after he completes a course of antibiotics - previous courses include 10 days of Omnicef, 3 weeks of Augmentin). His Memory B Cell function came back low. On a scale of 8-19, he was a 2 and his IgM memory was a 4 (scale of 10-19). If his titers come back low, he will start IVIG.

About Memory B Cell functioning, as I previously mentioned,  it's experimental. It is something that Children's Immunology is doing research on. They have a general threshold set (8-19) but it is not age-specific (that is what they're still researching). Since memory b cell functioning is reliant upon previous exposure to a microbe, the theory is that it is going to be lower for younger individuals. But it's a catch 22 because both the boys have a rather extensive history of infection. Those results are not for diagnostic purposes but they will be used, with all of their other labs, infection history and clinical findings, as support for insurance authorization for IVIG.

Brice also had bloodwork to check for some of the more common food allergens. He showed a slight issue with wheat but not as a "true" allergy. Given his GI issues, the gameplan is to treat this empirically. We will remove wheat/gluten for a 3 week trial - if we see improvement with his stool and belly pains, we know it's real. If we don't, then we re-introduce wheat/gluten. His level could be the beginning of an issue or it could be nothing.

And because my memory stinks lately and I use my blog for referencing at doctor appointments...
Brice - 92.5cm ( 23rd% ) and 13.6kg ( 34th% )
Pierce - 80.6cm ( 19th% ) and 10.6kg ( 12th% )

Check back on Thursday for our update - have a Happy Tuesday!

I am in for it...

... why do you ask? Oh my boys are such a mess (figuratively and literally)... here are a few examples of words I've recently heard and actions I've recently witnessed:

(1) Brice wanted to go play in his room... of course, little brother wanted to do the same... Brice wanted nothing to do with that ---
Brice: You can't play in my room. Get out.
Pierce: starts crying
Mommy: Brice that isn't very nice.
Brice: attempting to close his door NO mom! Don't talk to me!
Mommy: Are you almost 3 or 16 and wait, don't you have a penis? I thought only girls were mouthy like this Brice if you can't speak nicely to mommy or share, you're going to sir in time-out until you're ready to do both
Brice: NO mom! I don't want to share! I don't want Pierce in my room! Stop talking to me.
Pierce: continues crying
Mommy: Brice, it's time to go sit in time-out...
Brice: Noooooo mom, I'm going to share and be nice. I don't want to sit in time-out.
Mommy: I am glad you want to share and be nice but you still have to go to time-out
Brice: crying and reluctantly walking to time-out
Pierce: tears stop, walks into Brice's room and happily plays

(2) I put Pierce down for his nap shortly before George came home for lunch. We could hear Pierce talking (loudly) and playing. I asked George to put Brice down for his nap while I checked on Pierce. Upon opening his door, I found him standing on the edge of his bed, diaper-less, watching himself pee onto the floor. Seriously. [side-note: he's really moving towards wanting to potty-train; he has a horrific yeast-related diaper rash that had him in so much pain Thursday afternoon, he could barely walk. I put him in the tub for some relief but before I put him in, he peed in the toilet! He said pee-pee, put the toilet seat on the toilet, climbed on the step-stool, I sat him down and he PEED! I was SO excited!]

(3) Yesterday (Friday), I went into get him up from his nap and oh poop... there was poop EVERYwhere. He took his diaper off (duh) and pooped - either on the floor and transferred it to the bed or vice versa. I was so grossed out. He had it all over his legs, the sheet, his bed, blanket and pillow. I took his shirt off and put him in the tub... cleaned his room... and snuggled on the couch with him afterward. [side-note: I may or may not have taken a picture of said disaster... and I may or may not have sent it to my husband saying "why me?"]

I think I have provided enough evidence as to why I am in for it...

stickers, tummies & blog changes

The boys (unexpectedly) had their blood work done today. They both were having their pneumococcal titers checked from their June 28th vaccination with Pneumovax23 and their memory b cell function tested. Brice was also having a food allergy panel done. They both did great... well Brice had a massive meltdown over having to wear a band-aid after the fact... and it only got worse when he was given the option of choosing stickers. OH.MY.GOODNESS. I was sweating by the time we walked out... he was so upset that he didn't realize he was saying no to the Toy Story stickers he ultimately wanted.... but then, he wanted the WHOLE roll. I explained to him that he could have a few and the rest had to stay for other kids having blood work too... while he is normally a great share, today, he had no desire to do so. He l.o.s.t. it... the woman that drew his blood said he could have the entire roll... to which I 110% refused. He was not being rewarded with an entire roll of stickers for not wanting to share and for having a meltdown over not wanting to share. Finally, he took one of each type on the roll and we left.

Speaking of food allergies... the boys have a new tummy doctor (aka GI specialist). As much as loved our GI doctor in Baton Rouge (and will forever be thankful to him for stabilizing Pierce as a teeny babe), I just couldn't make the 1+ hour trip any longer. So back to the new tummy doctor... while I can't say that I was overly impressed, I can say that I think I am going like having him on our team.

Dr. K had lots of things to say about Brice and I honestly cannot remember each one because holy gees did my kiddos bring out the crazy for the first half of our appointment. These are the things that I do remember: (1) We're reducing Brice's Nexium intake from 20mg twice daily to 20mg once daily; (2) He's curious if some of Brice's belly issues could be related to food allergies or sensitivities; (3) He reviewed Brice's EGD biopdy report from March --- Brice did not have any evidence of esophagitis but that could have been masked by him being on Prevacid --- Brice had duodenitis; (4) If Brice's belly pain gets worse (especially to the point we were at a few months ago) he wants to do another EGD and a 24 hour pH probe study; (5) the duodenitis could be the culprit for his belly pain... actually visceral hypersensitivity could be. Dr. K said that once the inflammation from the duodenitis subsided, the nerve endings may not have properly healed and could be hyper-sensitive now... so anything moving through the duodenum (part of your intestines), in essence, could cause pain. If this were the case and if his pain were to get worse and if it were to start interfering with his day-to-day activity, they would treat the visceral hypersensitivity. Dr. K did give me a fair warning that the treatment for it is "old-school" anti-depression medications. He wants to see Brice again in two months.

As far as Pierce goes, he is in a pretty stable place GI-wise. I explained to Dr. K that pulmonology wanted us to get another swallow study and I really didn't think Pierce needed to undergo another swallow study (aka pharyngogram or MBSS - modified Barium Swallow Study or VFSS - Video Fluoroscopic Swallow Study) My two reasons are: (1) I am just not convinced that his recent choking episodes were related to anything mechanical - I am of the opinion it's more of an ENT issue (while he was sick) and (2) my poor kiddo has been exposed to SO much radiation in his short 19 months of life that if we can avoid it we need to. While he respected my desire to avoid the MBSS he thinks it's necessary. Due to Pierce's mito diagnosis, he wants a baseline study, if in the event we were to see issues arise in the future. The hospital will be calling me at some point this week to schedule the MBSS and we follow-up with Dr. K in two months.

And... I've made a few more changes to my blog! I moved my blog roll from the sidebar:

to a page at the top (We like to read):

and I also added a few buttons as well :)

I am off to stuff and address 80 birthday invitations for my ALMOST 3 year old redhead... have a great night!

Anonymous

So as you can see, I have re-designed my blog. While cleaning up my blog, I noticed this lovely little comment.

Normally, I wouldn't address this kind of thing but tonight, it unnerved me.

Dear Mr./Mrs. Anonymous,

(1) Use proper English.

(2) ANY day you would like to put your BIG kid panties on and come out from hiding under the guise of anonymity, that would be great. I mean seriously, what a fabulous way to sling mud... you lack courage and in reality, you're the pathetic one.

(3) You are MORE than welcome to accompany me to any one of the numerous doctor appointments we have each month... you can hold either or both of my children down while they have 6+ vials of blood drawn with a vein that collapses necessitating yet another poke with a needle... you can deal with their great amounts of anxiety over the sight of a mere scale in a doctor office because they know that means they are about to get poked and prodded... seriously, any day you want to walk in my shoes, I am more than happy to take them off so you can fill them.

(4) You are the reason anonymous commenting is no longer allowed on my blog.

(5) You are no longer welcome here... do you see that X in the upper right corner of your screen, click it now.

Sincerely,
Laura

one more kiss!

I need to start blogging on a more consistent basis... not for you (sorry, just being honest) but for me. I initially wanted this blog to be a place for me to remember those moments... the ones that I want to remember for forever. It's turned into more of a place for me to document my children's health issues (which has come in handy more times than not) and from time-to-time, I get to document about those moments. My hope is to start blogging about anything and everything - whether it's about Brice's first day in Pre-K3 (coming SO soon!! September 6th to be exact!), Pierce CONSTANTLY wanting to "pee-pee", a picture of my boy's artistic renderings... on my walls, their medical issues or just my thoughts - I need to challenge myself to my blogging at least three times a week - hold me to it, people, hold me to it!

Today is my mom's birthday! We are celebrating with dinner and a cake here at our home this evening. Both the boys called her this morning to wish her a "Happy Birthday" but she didn't answer! So what did this momma do... pulled out the (cell-phone) camera of course and posted videos to Facebook (seriously, THANK YOU technology!).

Aren't they cute?

And my latest update on the boys... it looks like we're heading in the direction of IVIG therapy for both of them. Pierce has been living on antibiotics for weeks now (he did 12 days of Omnicef and is taking 3 weeks of Augmentin). Brice is about to start antibiotics as well for a sinus infection.

This is what our daily meds list looks like (minus whatever antibiotic Brice is about to start...)

They are both having blood work on Monday, August 2, to check their titer levels (post Pneumovax23) and to check their memory B cell functioning. The latter test is experimental but it can indicate if they have difficulty making cells necessary to recognize and fight off a microbe on repeat exposure. If Pierce's titers come back low, that will be enough to justify (to insurance - they need certain labs to approve IVIG since it is extremely costly) starting his IVIG course for 18-24 months. If Brice's titers come back low OR within an acceptable range but his memory B cell function is low, he will begin IVIG as well.

At our hospital, IVIG therapy is administered once a month, on Wednesdays only. It is a short stay admission to the hospital (typically about a half day so long as the infusion is uneventful). An IV will be placed and the infusion typically takes a couple of hours. Every 6 months, they will have blood work to look at their levels - IgG but specifically IgM and IgA. If at any point during treatment, their IgM or IgA level starts to decline they will be given the definitive diagnosis of CVID (Common Variable ImmunoDeficiency) or hypogammaglobulinemia. If that doesn't happen, once the course of IVIG is completed, they will have blood work 6 months after to check their levels. If everything looks good, they will still be followed because they are technically not out of the woods. At any point, their levels could drop off which would mean true CVID (as opposed to transient of childhood). If they do have CVID, they will get IVIG for the balance of their lives... that statement is a bit daunting.

Deep down inside, I strongly feel as though they will both be candidates for IVIG Therapy. I am thankful to know that we will most likely have an answer in about 3 weeks (versus in September!). I remain hopeful that if they do go in this direction, that it's just transient and not true CVID. Only time will tell... and for some reason, I just can't buy into the quote of "this too shall pass" because, what if it doesn't.

It's not fair for them. I feel like my body failed them. I know in reality that I haven't failed them. But if they have this... at what point during their development did something go wrong? I've felt like this for quite some time with Pierce's mitochondrial diagnosis. And while he is on the mild end of the spectrum, we have no assurity that it will always be like this. It can change at any moment... and that scares me. I feel like I am constantly questioning every off thing he does - Why is his appetite suppressed? Is he falling more than usual for a toddler? For himself? Why is he sleeping more than usual? Are any of these symptomatic of regression? And  now, the thought of him having a compromised immune system on top of it... that just sucks. It's bad enough that he will be on a list of medicines for the rest of his life, but to think he may need IVIG forever too... I despise that too. But then I look at them... and I see their happy, smiling faces. I see them playing with one another. I see Pierce becoming more of a toddler daily and Brice becoming less of one. I see so much love and happiness. And that makes every single moment I worry and stress so completely worth it. I would be lying if I said I wished things, medically speaking, weren't different. It's a lot to take in but I still get to fulfill requests of "one more kiss " (actually 8 more kisses) and "one BIG kiss"... I still get to kiss them good night, every night And those moments are some of the moments I want to remember forever.

Updates

Sorry for not updating lately... to be honest, I just haven't felt like it. I feel like every time I post something it's like throwing a rock onto the not-so-good news side of my proverbial life scale... but I've come to accept that it is just the way it is right now. I also realized that I need to blog before I forget. My past posts have come in handy in terms of remembering 6+ months ago when I've needed to update a new doctor.

As much as the Type A in me wants to be all organized, this post will be somewhat all over the place...

June 13 --- Pierce's first appointment with Dr. Levine at Children's Hospital (New Orleans). I was very impressed and equally as happy to have him on our team of doctors. He seems extremely knowledgeable. I really liked when he said if he feels strongly that Pierce's health is going in X direction, he will let us know so that we can make an informed decision in a non-stressful environment (vs landing in the ER, being admitted and having to make a big decision for his health). Pierce's lungs looked good - no evidence of any lung disease. He gave us a prescription for Xopenex to use prn for wheezing episodes/night-time coughing. We follow-up with him in September - aka "lung season" - and if we ever feel as though a visit is warranted, his doors are open. He also wanted Pierce to undergo another modified barium swallow study due to choking and aspirating episodes. We scheduled a GI appointment with Dr. Keith at Children's for late July. {{After I typed this, I felt as though I've previously blogged about this but I can't remember}}


June 24 --- Pierce's 18 month well-visit; he was finally put on antibiotics - 12 days of Omnicef. His sinus infection started to clear up and magically his choking episodes started going away --- my mommy brain is telling me it's not truly a mechanical issue. I think it's either (a) his adenoids are/were swollen or (b) when he's sick he becomes weak (normal for anyone) but maybe it's affecting his suck/swallow/breathe function. I plan on discussing my theories with Dr. Keith.

June 28 --- Pierce received the Pneumovax23 Valent vaccine; Brice saw the same immunologist. We discussed his history and his previous immunology visit in September 2009. Brice had bloodwork to look at his immunoglobulin levels and titers. Brice also received the Pneumovax23 Valent vaccine.

July 5-8 --- Pierce started with fever the day after he completed a 12-day course of Omnicef

July 11 --- Pierce started with fever (again)

July 13 --- Pierce's fever climbed to over 104 with Motrin and Tylenol rotation getting it into the 103s. His heart rate was in the 140-150s and his respiratory rate was in the low 60s. We spoke with the pediatrician on call and she suggested that we take him into the ER given his medical history of mito diseaseand possible hypogammaglobulinemia. So off to Children's we went... 4 hours later + 1 chest x-ray + blood cultures = possibly something bacterial starting to occur but most likely viral

July 15 --- (today) Pierce STILL has fever. I spoke with his immunologist and she suggested that we go into the pedi to rule out strep and ear infections. Either way, she wants him on a 3 week course of antibiotics. She mentioned that it looks like he will ultimately end up needing IVIG therapy. We really won't know more until early September. Both the boys have repeat bloodwork to check their titers on August 23. It takes approximately 2 weeks to receive those results back. And speaking of titers, I received Brice's pneumococcal titers back today... {drum roll please}

They are non-existent --- seriously, what the heck?! His IgG3 level was low and his IGE level was high - allergy testing will most probably be tacked onto his August 23 follow-up.

So it appears as though both of my children do not respond to protein-conjugated vaccines. Fingers crossed that their immune systems will mount a lovely response to Pneumovax23. Come on August 23... and more importantly, come on 2 weeks post August 23.

I really just want answers. If one or both need IVIG therapy, I just want to get to that point. I just want something concrete... something that doesn't involve such lengthy wait times.

That's all for now because Pierce has a doctor appointment in about an hour...

{fear}

[this is the post in which so many of you will see that I am really not as strong as you think I am]

This weekend, I read a post on Band Back Together and it was like a light bulb went off in my head... definitely a defining moment for me.

I spoke with my psychologist today and she confirmed what I already knew... I am suffering from PTSD, anxiety and panic attacks.

Here is where I attempt to become transparent... Any time Pierce sleeps longer than he should or later than he should, I internally freak out. Recently, Pierce slept until just after 7am (not normal for him). While most parents would gladly welcome an additional hour of sleep, I laid awake from 6am on.  By the time 7am rolled around, I was in a full blown panic attack - heart racing and pounding, feeling like my sternum would give way at any moment and my chest would rip open. I laid there thinking those thoughts... you see, after you've watched your child turn blue and stop breathing, after you've watched your child turn blue and go limp countless times, after you've watched your child choke on things he likely shouldn't... your thought process changes - at least for me it has. I lay there thinking "what if I open his door and he is blue"... "what if I open his door and he is dead" - (as I type these words, my heart is pounding). And while I've been reassured that because of what I've been through, those thoughts are normal (for the circumstance) - what I say next, isn't normal. It takes me minutes - at times a couple, sometimes almost 10 minutes - to gather enough strength and courage to open his door... because I have this image of my blue baby stuck in my head... I am afraid that when I open his door, that's what I will find. And that fear paralyzes me.

Tonight I told George that I needed to tell him something but I was afraid that he would think I was absolutely crazy (because really, how normal is that thought process?) I was so hesitant in sharing with him, but I reluctantly did. I started talking and explaining the fear that paralyzes me... that puts me into a panic attack... I began to say "I don't want to open his door because what-if... what-if" as I was biting my lower lip because I didn't want to cry... I just flat couldn't get the words out... he looked at me and said "you don't need to say anything else, I feel the same way. I have the same fear." And as good (I know, maybe not the right choice of wording) as it felt to be validated, it felt that bad, knowing that he feels the same way - because it's a horrible way to feel. He explained that's why he checks on Pierce 3, 5, 10 times a night (we both check on the boys several times a night). Now with that said, his fear isn't as extensive as mine. He doesn't become so scared that he won't open the door... but he still fears the worst. He also said that it's becoming less of a big concern and more of a smaller one... his biggest worry with Pierce as of late, is him choking - we've been dealing with it much more than we'd like - let's just say, performing the Heimlich 3 times in 7 days aren't the greatest of odds.

I hugged George. I thanked him for not thinking I was crazy. My heart was hurting that he carries the same fear as I do. I thanked God for truly giving me my perfect soul mate.

I hate this fear. I hate the unknown - I am such a control freak and I feel as though know I have such little control over all of this... and I don't like it... not one tiny bit. But I do as I have to... I put my brave face on. During our crisis moments, I am grace under fire. I run on adrenaline. I do what I have to take care of my baby... to advocate on his behalf. And it's tough because to look at him, Pierce looks like your normal 17 month old - his insides just don't match his outsides. But I have my moments, where it all breaks down... and when fear creeps in like a thief in the night... I try not to let it steal anything, but clearly, sometimes it does.

bumper cars - missed memo?

I apparently missed the memo that I would be involved in a game of bumpers cars yesterday...

Pierce had an appointment with pulmonology at Children's. He had a clear (!) chest x-ray with NO sign of lung disease. He still has a residual cough (mainly at night) from his upper respiratory infection. Dr. L thinks it's one of two things: (1) he's had multiple lung infections and he wheezes from time to time (especially when he's sick) - so the night-time cough could be an asthma-like cough or (2) with viral (respiratory) infections you can experience asthma like symptoms for 4-5 weeks after the infection subsides... so for now, he will receive a breathing treatment at night, before bed. Dr. L wants to see us back in September when "lung season" begins. I am imagining that we will be on a 2-4 times a year checkup pattern with him. He stated that if he ever sees a problem cropping up that he will let us know how he thinks it will play out ahead of time so that we can make a decision in a non-stressful environment. He reminded me (in a kind, not fear-mongering way) of the down sides of mitochondrial disease (ie G-tubes, serious breathing difficulties, etc). He seems to be very intelligent (you can tell he knows that he is but he reels himself in avoiding arrogance) - he was the Director of ICU at Children's for 25+ years. Long story short - I REALLY like him and I am glad to have him on Pierce's team.

On our way home, literally about 1 mile from our house, we were rear-ended --- seriously, being in a car accident with my child had always ranked in my top 5 mommy fears. With this accident, I knew it was going to happen when I looked in my rear view mirror. Poor Pierce was sound asleep - the scream my baby let out on impact was horrifying. When I knew the impact was inevitable, I kept thinking "I am going to get out of this car and give that person a piece of my mind... how could he hit me? And with my baby in the car? What part of stopping couldn't he understand?!" --- and after Pierce screamed all I thought was "How quickly can I get out of my seatbelt and get him out of his carseat?" It took a good 10 minutes to console him and it broke this mama's heart. A state trooper came out and wrote a report.

Pierce seems to be having some anxiety with getting into his carseat. It has happened four times now - he freaks out and doesn't want to get into his seat. I am a little sore. I must have clenched my teeth because my jaw hurts in addition to my neck, shoulders and lower back.

I filed a claim this morning. At first the (at-fault) driver's insurance company did not want to replace both carseats but one simple statement changed their mind: "... that's fine. I would like a written statement from your company accepting full liability and responsibility in the even that Brice's carseat were to fail us in the future." Carseat safety is a huge thing to me - I refuse to take any risks with my children's lives.

At the end of the day, I am so thankful that our car was significantly damaged and that my baby and I were not seriously injured.

More Labs

[Before I go into the details of Pierce's labs, I want to welcome my new readers from Kelly's Korner --- and a special thank you to the moms who've reached out because they've been in my shoes before.]

I received a large portion of Pierce's most recent labs - we're still waiting on his CoEnzyme Q10 and Carnitine levels and Organic Acids (those are sent out of state).

Pierce had an upper respiratory infection that started 2.5 weeks ago but he has vastly improved since then. When the URI started he was hoarse, wheezing, sounded very junky, had tennis-ball green nasal discharge, a not-so-lovely cough and mid-grade fever that would come and go. On Memorial Day, I took him into the ER because he started sounding like a bullfrog while breathing - the ER doc heard lots of upper airway congestion but couldn't hear anything in his lower lungs. He said something could have been going on but because we were already doing 3-4 albuterol breathing treatments daily, he couldn't be certain.

He still has an occasional cough - nothing like what it once was or near as frequent - and we can still hear a bit of congestion when he's breathing. I was surprised when I saw his WBC (white blood cell) count...

(1st column = normal results --- 2nd column = abnormal/out of range results --- 3rd column = range)

His platelet count has been high on his last two sets of labs - in addition, his lymphocytes (lymphs) have been high and his neutrophils (segs) have been low  ---

6/7/2011

(1st column = normal results --- 2nd column = abnormal/out of range results --- 3rd column = range)

3/7/2011

(1st column = normal results --- 2nd column = abnormal/out of range results --- 3rd column = range)

Yesterday, I spoke with Dr. P (allergy/immunology). She informed me that platelets are an acute phase reactant - so a high level can indicate a reaction to infection or inflammation. Neutrophils guard against bacterial infections, and are found in the blood stream, which allows them to respond quickly to trauma and move to the site of infection or inflammation. A low neutrophil count can mean depleted or compromised immunity. Lymphocytes are T cells and B cells - they form part of the adaptive immune system, B cells create antibodies in blood which are used to kill foreign bodies, while T cells help in the activation of cells that will neutralize threats. Low neutrophils and high lymphocytes generally signal a viral infection - the elevated count is a result of the body's attempt to fight the infection. So something is definitely going on inside of him at the moment. The good thing is that his body is semi-responding the way it should - he just doesn't have the antibodies he should to fight off infections.

His neutrophils were low and lymphocytes were high in both March and June. His WBC count was normal in March and high in June. Dr. P plans on doing another CBC when she checks his titers after the Pneumovax23 vaccine. If his lymphocytes are still high, they will look deeper into it - whether it's his T-cells or B-cells, etc.

I also expressed my concern over the Pneumovax vaccine and his age (according to Merck, it's safety and effectiveness has not been established in the under 2 population). Dr. P reassured me. Early childhood vaccines are protein conjugated because that's what the immune system recognizes when it's still developing. Pneumovax is a polysaccharide vaccine - typically young children respond poorly to this. The hope is that since Pierce's immune system responded poorly to protein-conjugated vaccines that his body will mount a different (positive) response. I feel better knowing that he isn't going to have some sort of negative reaction to Pneumovax - the only negative reaction would be his immune system not responding to it and us having to move on to a different path.

For now, we are keeping things a bit more low-key until he receives the Pneumovax vaccine (even though it's not a guarantee then) - we are staying away from large crowds - especially lots of kids, any one sick or recently sick, etc. I am just so thankful that he hasn't been more sick than he has.

That's all for now - a mountain of laundry and two little crazies are calling for me :)

Have a wonderful weekend!

{four}

Four years...

1460 days...

35,040 hours...

2,102,400 minutes...

11 years together

one "surprise" wedding

3 pregnancies

one loss

2 births

2 sons

one death of a parent

5 four-legged furry animals

3 turtles

2 jobs

2 vacations

one major diagnosis

many hospital stays, surgeries, procedures, results

buckets of hope

steel beams of strength

hundreds of tears

ten thousand laughs

never-ending love

one promise of forever

June 9, 2007

the day I said

I do.

the day I said

I will hold you when you fall...

I will laugh with you and smile with you...

I will stand by you no matter what...

I will love you for the rest of my life...

I will honor you and cherish you...

all the days of my life.

titers and vials and more

Yesterday, my sweet little man had his quarterly follow-up with genetics. Since I don't feel like getting all fired up again, here's the annotated version:

After almost 45 minutes in waiting room with screaming toddler, our brazillant nurse crossed my path (not her best move) and I wanted to drop-kick her for her craptastic attitude... fast-forward another 45 minutes, doctor finally joins my terroristic toddler... he immediately apologizes for the "unacceptable wait time" (his words, my thoughts --- someone double booked his 9am slot - mind you, our appointment was scheduled for 3 months... sigh)... I express my dissatisfaction with his nurse... he acknowledges that "changing the system is hard, but he's diligently working on it."... we move on to the real reason for our visit - sweet Pierce. I tell him about our ST's concern with his decrease in words - he says we are probably seeing some regression but the positive thing is that he will progress back up. Mitochondrial disease has it's ups and downs - like a roller-coaster. I told him that we saw allergy/immunology and that Pierce's IgG levels came back low. We discussed Pierce's history of pneumonia, (several cases of) bronchiolitis, wheezing, neb'ing, etc... he thinks we need to add Pulmonology to our (ever-growing) list of specialists. He also said that Pierce is anemic - his levels aren't critically low. We are adding Poly-Vi-Sol to his daily regimen of medications/supplements. If that doesn't help, he may need elemental iron. We waited forever and a day for his labwork (due to miscommunication... again)... his left arm pooped out after {barely} two vials (I knew it would as soon as they stuck him because of the way his blood was flowing...)... his right arm was such a champ... 8 vials of blood later, one teal bandaid, one red bandaid one orange and one grape lollipop, two glittery Elmo stickers and we were FINALLY out of there... a whole 3 hours later.

Stats --- 23lbs 4oz (16th% weight) and 78.9cm (20th% height)

I received a phone call today from his allergist/immunologist team. they received his titers back... not so great news.

Pierce received his Prevnar (PCV7 - now it's PCV13) vaccine at 2 months, 4 months and 6 months of age; at 15 months, a child receives a Prevnar booster. A child's immune system is typically where it should be against the 14 most invasive strains after the first 3 Prevnar vaccines... Pierce's is not. 

They want to see at least 7 of these serotypes greater than 1.29 --- as you can see with Pierce, only 2 of his are... and just barely. Because of his low titers and low IgG levels, they are going to give Pierce a vaccine called Pneumovax 23. They said his body will (or should) mount a different response to this vaccine. Approximately 6 weeks after, his titers will be re-checked. If his levels are still low, we will discuss our next step (possibly close monitoring of his infection levels or straight on to IVIG). [side-note: I am slightly nervous about this vaccine seeing as how it has not been established in the under 2 population... Pneumovax23]

It's so hard seeing this sweet, smiley-faced boy that looks a-okay on the outside but really isn't on the inside... that's all for now... I feel depleted... but in 30 or so minutes, that sweet smiley-faced, blonde curly haired boy will be calling my name... and showering me with wet open-mouthed kisses... and that my friends replenishes my spirit.

{just breathe}

When it rains, it pours {at times}...

I am feeling very overwhelmed...

I know it's said to "count your blessings, not your problems" - but on some days, just thinking about that idea is tough...

As far as George, myself and the boys go, we're fine. But outside of that, my family (specifically my immediate family) could use all of the prayers, thoughts, wishes you have to offer. My heart is broken and heavy. For now, please respect our wishes that this stays a private matter.

Now onto other stuff...

Yesterday, I spoke with one of Pierce's doctors (new to his team of doctors) - I was concerned that some cold-like symptoms were a result of his allergy skin testing (performed on Wednesday). She said that they were not. She was also happy to hear from me because she was going to call me. They did some bloodwork on Pierce on Wednesday - to look at his immunoglobulin levels (basically his immune function) - IgG, IgA, IgM, IgE, IgD (if you've read my blog for any length of time, then this will sound slightly familiar as we've {kinda, sorta} traveled this path with Brice). For Pierce, his:

• IgE levels were low - this is a good thing. IgE is related to allergens. If your body meets a particular offender (that you're allergic to), it will build IgE antibodies in response to it. Even with this finding, Pierce is still labeled as "Milk Allergy."
• IgA levels were normal
• IgM levels were normal
• IgG levels were low (not a good thing) - about 20 points below normal. "IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus)." source

We may be dealing with an immunodeficiency, specifically an IgG Deficiency (with the subclass undefined at this moment). We're in a wait-and-see boat at the moment... we're waiting to see what his blood titers look like. She anticipates having those results around the week of June 6th. Depending on those results, we may begin treatment soon. If those results buy us some time and he were to get pneumonia, treatment would begin immediately. If those results buy us some time and he doesn't get pneumonia, we will be watching him for any signs of infection over the next 2 months (ear infection, sinus, etc).

Treatment (IVIG) for this is with blood product (purified plasma) that has Ig antibodies in it. We are looking at once a month treatments for 1-2 years. From what I've gathered, it is done through IV infusion.

I spoke to his pediatrician yesterday about the results and she said the IVIG would probably be beneficial to him.

So we sit and wait...

But in the meantime, Brice will be seeing the same doctor. While reviewing Pierce's medical history and going over his family history, I mentioned Brice's bloodwork (if you didn't read the above link, Brice had similar testing done in August 2009 - his IgM levels were low, IgG and IgA levels were borderline low). She asked if his levels were ever re-tested and encouraged having his levels redrawn. Further into our conversation, I mentioned that Brice is presently being treated for pan-sinusitis (infection of all sinus cavities - it was incidentally noted during his May 6 brain MRI). She looked at me and said "he really needs to be seen again." The next available appointment was June 28.

Between now and June 28, Pierce has an eye specialist appointment, a genetics appointment (w/bloodwork), his 18 month well-visit (w/immunizations), an orthopedics appointment (w/x-rays) and Brice has a GI appointment.

{monday mumbles}

• Brice had a GI follow-up on Friday --- it was rather boring (which is NICE!) --- until Brice takes his Nexium, twice daily, for 2-3 weeks, we cannot assume that his pain isn't GERD related. We has taken it as prescribed since Friday :) {in addition to his $45 ear drops - 4 drops in his left ear (the one with the tube), twice daily - I about died when I had to pay for those... we follow-up with his ENT next week}... yay for not having to fight him! He has also been saying he's hungry, asking for food and actually consuming it too! I feel like we are beginning to make some progress and I am thrilled :) 
• I took the boys to the Audubon Zoo for their FIRST TIME ever - I know, crazy, right? We live in NOLA and I've never taken them (whoopsie)! We went with Jenni & her sweet boys - all 4 boys had so much fun! We went to every exhibit and spent a total of 5.5 hours at the Zoo. I enjoyed spending time with Jenni and not being rushed. It was awesome catching up with her! {cell phone pics to come}
• Our weekend was pretty relaxed... and I really enjoyed it! Saturday, we had breakfast with the EASTER BUNNY at Bravo's. I have to say for what we really got our money's worth. It only cost $10.95/adult and $5.95/child. They served a buffet of french toast, stuffed french toast, scrambled eggs, bacon, potatoes and fresh fruit (strawberries, raspberries, blueberries and pineapple). The kids were given a bag filled with candy and a plastic egg. The egg contained a free ride on the Easter Train at Lakeside Mall and one free appetizer ($12.99 value) and one free kids meal ($5.99 value) at Bravo's. They set up a little area to take pictures with the Easter Bunny and while he wasn't busy doing that, he was going from table-to-table taking pictures and visiting. 
• As of Friday, Mr. Pierce's tooth, that was fixed on Thursday, was back to it's jagged, chipped-self. We go back to the dentist tomorrow...
• We're hosting EASTER at our house this year - I am excited! I love to decorate - it's going to be fun!
• We have two new pets... TURTLES! They are named Nemo & Nemo 2 (I give you one, and only one, guess as to which of us named the turtles). Brice helps us feed them and he loves watching them... 
• In closing, I am going to leave you with two invitations I've recently designed for friends of mine:

finding words

It amazes me to have a child that has almost 40 words at {almost} 16 months old. Pierce is spontaneously acquiring more and more words! He says Bice (Brice), no (and he knows how to shake his head no), up, down, mommy, daddy, potty, poo-poo, Daisy, Duke, stop (top), Neo, kitty, duck, quack, moo, dog, uh-oh, night-night, go, out, bye, hop, PaPa, Elmo, woof-woof, ahh-ahh (monkey sound), boat, choo-choo, cat, bubbles, roar, yum-yum, ball, two, cat, blue, hello and hi. Pierce is able to communicate with us, with his brother, with his world. We don't have meltdowns, tantrums, confused looks because his parents have no idea what he is trying to communicate... once upon a time, with Brice, that's exactly what we had...

I remember it all clearly... I googled Early Intervention in hopes of finding out whether or not my babe was truly delayed with his speech. I was tired of people telling me "he's fine, don't worry," "boys talk later than girls," and "give him until he is 2 years old." My heart was telling me differently. I knew that he wasn't fine. And my brain fought my heart... hard. How could my baby not have words? We never used baby talk. We read books, we used descriptive adjectives, etc... why wasn't he talking? His peers were - some in two to three word sentences. I've prided myself on my intelligence. I maintained a 3.914 GPA while in college. I married a smart man. It hurt my brain in ways that I cannot even begin to describe. I felt like I failed him.

We had our initial meeting with Early Steps. He was approved to have an evaluation. Can he do this, that and the other... no, no and maybe. I remember feeling even worse after our evaluation. My irrational brain was in full overdrive... How have I failed my baby like this... when in reality, if I were to have listened to my rational brain, I would have known that they were attempting to establish a base and a ceiling. But I couldn't think straight... I really felt as though I failed him.

Brice had his third ear infection and we were referred to our ENT. Brice had a hearing test and he failed. After our ENT appointment I felt as though we had an answer for my baby not having any words. That certainly didn't make it sting any less when Early Steps called and confirmed that Brice was significantly delayed in communication and cognition. We had an answer and a plan of action. Brice received a PE tube in his left ear and had his maxillary and sub-lingual frenulums cut on April 13... one year ago today... my baby's body was given the physical opportunity to find his words. I can't thank Dr. Peltier enough.

In the early days of speech therapy, we were learning to use sign language to communicate. He learned signs rather quickly and we were grateful for having an opportunity to communicate his basic needs (milk, more, eat, etc). And then by his second birthday, he had a handful or words... not many, but enough to make me beam with pride. And slowly but surely, he really started to find his words. As days turned into months, he was able to piece two and three words together for sentences. He began to spontaneously acquire words. And then it hit us one day... Brice NEVER stopped talking! Some days, I find myself lost in thought while listening to Brice talk. I sit there and smile and think about how far he has come in one short year.

Brice had his one year reevaluation with Early Steps a little over a month ago... he no longer qualifies! She was beyond impressed with "his intelligence." I knew he wouldn't re-qualify and I was so happy because I know where he was one year ago... wordless. He still has a small articulation problem. We have three sessions left with our speech therapist. She believes that he will work through those in our last few sessions and will no longer need her help (note: we had considered continuing in private therapy with her). Our speech therapist is truly an amazing woman. She helped my baby find his words (in addition to helping my other baby as well) and for that, thank you doesn't seem to be enough.

My children have taught me so much and not just through this, but through every hurdle we've overcome with them. They've taught me that nothing is insurmountable. They've taught me how to hope when I thought hope was gone. They've taught me how to be more compassionate and less concerned about what others think. And most importantly, they've taught me how to love deeper than I ever thought was possible. And for that, I thank them.