A tiny glimpse...

First, you can tell it's been awhile since I blogged... I had no clue that Blogger made a bajillion changes to it's format... oh well, bare with me if I screw anything up.

So I owe a few dozen updates to those who actually still come here to read... but today I am exhausted. I did want to share this with you. I contacted the Beads of Courage program to see if the boys were eligible. CHNOLA only offers BOC to oncology patients but we are eligible for the Beads From A Distance program. I am really excited because I feel as though this will give the boys something more tangible to express all that they've been through... and it's quite a bit for their 2 and 3.5 years of existence. I had a tally form with various categories and sub-categories to complete. They will each receive a certain bead for each thing they've been through... here is what I was able to tally for each of them:

Pierce

• 1 inpatient admit
• 8 nights in the hospital
• 1 NG tube
• 21 x-rays
• 4 times of being NPO
• 2 IV antibiotics
• 1 time on isolation
• 8 IVs
• 24 pokes for bloodwork
• 2 echocardiograms
• 2 EKGs
• 5 swallow studies
• 2 upper GI series
• 4 ER visits
• 1 ambulance ride
• 1 muscle biopsy
• 2 brain MRIs
• 1 ABR
• 2 brain CTs
• 1 upper EGD
• 1 lower EGD
• 1 sleep study
• 1 EEG
• 1 upper airway fluoroscopy
• 2 cardiology visits
• 10 GI visits
• 4 opthamology visits
• 9 genetics visits
• 7 ENT visits
• 4 neurology visits
• 6 orthopedic visits
• 5 immunology visits
• 4 pulmonology visits
• 2 IVIG infusions (well 1 is this coming Wednesday)
• 1 surgery
• 1 trip to AL for ortho consult
• 17 trips to Baton Rouge (1 hour away from NOLA)
• approximately 94 therapy sessions (speech and physical)

Brice

•  5 IVIG infusions (1 this coming Wednesday)
• 12 IVs
• 13 ENT visits
• 6 immunology visits
• 10 GI visits
• 3 pediatric surgeon visits
• 1 pulmonology visit
• 1 genetics visit
• 7 x-rays
• 3 hearing tests
• 15 pokes for bloodwork
• 3 surgeries
• 7 ER trips
• 2 inpatient admits
• 5 nights in the hospital
• 2 upper EGD
• 2 lower EGD
• 1 bronchoscopy
• 1 laryngoscopy
• 1 nasal endoscopy
• 1 NG tube
• 1 brain MRI
• 1 ophthalmology visit
• 2 urology visits
• 3 ultrasounds (1 abdominal, 2 renal)
• 2 foley catheters
• 2 upper GI series
• 1 swallow study
• 1 nuclear gastric study
• 21 trips to BR
• approximately 88 Speech Therapy sessions

After seeing all of this, it made me realize why the last 3.5 years have flown by... the sad thing is that this doesn't even encompass what seems like the hundreds of times we've been in the pediatrician's office for sick visits, well visits and childhood immunizations.

That's it for today --- if you have the ability, I really encourage (and would more than appreciate) you to make a donation the Beads of Courage program. You can do so here!

A post coming tomorrow about our scary day with Pierce yesterday... off to go release some stress while working out :)

It's been awhile, yes?

It would take me hours upon hours of typing to fill you in on the last few months... quite frankly, I just don't have the time - I am racing against the clock as it is with nap time about to end. Here is the Clif's Notes version:

• Brice had a Nissen Fundoplication on December 27. The surgery took less time than expected. His recovery was AMAZING! We were initially told to prepare for 4-7 days in the hospital post-op. Guess who was released at a whopping 48 hours post-op --- I was shocked with how well he did. But I do have to admit that my baby broke my heart when we were initially in recovery. He was crying saying he wanted his mama and I kept reassuring him that I was holding him and I was his mommy, but it didn't matter. He was very out of it. The first 24 hours were rough because he was NPO and had an NG tube suctioning his stomach out. A small dose of Ativ@n, some IV M0rphine and Tor@dol took us through those first 24 hours beautifully. Once the boy was able to get some food in his belly, life was good again. He and I played in the play room and took a few walks. The LSU Golden Girls visited us and even gave Brice a gift! He actually received a few gifts while we were admitted from various groups visiting the hospital. On Day 2, once he proved he could tolerate breakfast and lunch, we were discharged! He wasn't overly concerned about his incision sites except during bath time. I received very strict orders, from Brice, to not touch his "boo-boos" - which I had no intentions of! Tomorrow is his post-op visit. You know what the best part is - I haven't hear "mommy my tummy hurts" in almost 2 weeks! After hearing it multiple times a day for 1 entire year, it is amazing what this surgery did for him!! Dr. Hansbrough was an amazing surgeon, who completed his surgery in an hour less than we expected and her bedside manner is superb. Again, Our Lady of the Lake, completely exceeded my expectations, treated my sweet boy like a prince and overall, did a fantastic job!
• Christmas was SO SO SO much fun - but I will do another post on that :) Being able to experience the magic of the Christmas season through our children is so heart-warming. I LOVED it this year! 
• While I was in the hospital with Brice, we received some not so good news from their immunologist... Pierce's pneumococcal titers are non-existent again. He went from having 2 out of 14 (May 2011) to 11 out of 14 (August 2011) - this was after receiving the Pneumovax23 vaccine.... right back down to 2 out of 14 (December 2011). Brice's titers decreased as well but not as drastically - Brice had 3 out of 14 (June 2011) and went up to 13 out of 14 (August 2011) - post Pneumovax23 and went down to 8 out of 14 (December 2011). Brice has also had frequent infections since the Pneumovax vaccine - croup, bronchitis, right ear infection, croup and a sinus infection. Pierce has (thankfully) stayed relatively healthy - he's only had bronchitis. Oh, well, they both had Hand Foot & Mouth in early November but that doesn't really count towards the infections that matter. so................. where do we go from here....

They've both been labeled as immunodeficient. Pierce is called IgG3 Deficiency with Specific Antibody Deficiency and Brice is called IgG3 Deficiency with probable poorly functioning antibodies. They've both displayed really poor Memory B cell function, too.

Brice will be starting IVIG infusion therapy at Children's sometime in February (early-mid). We have to wait on insurance approval and then a spot to open up (or eventually, he'll just get squeezed into the schedule). He will be admitted to Children's once a month for about a half day where he will receive donor antibodies (via blood product) through an IV. This treatment will definitely last for 12 months. If his immune system seems to be responding, they will continue for another 12 months. If he isn't responding, I am unsure of what the course of action is. Either way, he will come off of the IVIG treatment and have bloodwork at 6 months after the final infusion. By then, his immune system will have cleansed itself of all donor antibodies and should be producing antibodies on it's own. If his levels are down again, they will resume IVIG therapy with no true end date in mind. Since Pierce has stayed relatively healthy on his own (yay!), they will not start IVIG on him just yet. If he starts getting sick more frequently, they will begin treatment on him as well. We will not know if this is transient (something they will outgrow) until they are 6 years old. They will be followed every 4-6 months, while not on IVIG, until then to see how their immune systems are/are not responding.

That's kind of it for now - just in a wait and see mode until we can begin IVIG... More details to come as I get them

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!