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 :)

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 :)

staphylococcus aureus

Dr. A (GI doctor) called late yesterday afternoon. He received the results of the duodenum aspirate he performed on Brice. Dr. A said it's normal to find bacteria in the intestinal tract. But Brice has a staphylococcus aureus infection - the results showed a level over 350,000 (Dr. A said he wouldn't bat an eye at a level of 1000 - at times even 100,000 if the patient was asymptomatic). Brice was prescribed Sulfamethoxazole (2tsp twice daily) for the next two weeks. We have a follow-up scheduled for April 15.

If Brice is still complaining of belly pain after this dose of antibiotics, Dr. A plans on performing another endoscopy to confirm that the staph aureus infection was taken care of.

He is on a low-sugar diet for the next two weeks because this bacterium thrives on sugar (this is in addition to the low-acid diet he is presently on for GERD).

I have been trying to keep a list of questions to ask Dr. A at our next appointment. Hopefully I can get some answers then... :)

If you have some sort of magical way to get medicine in to your child, please share with me... just to let you know what we've tried:

• using a standard syringe (5mL)
• using a smaller syringe (1mL)
• using a medicine cup
• using a medicine spoon
• mixing it into applesauce
• mixing it into water
• administering small amounts over the course of 30 minutes
• pinning him down, waiting for him to scream and administering
• telling him his tummy will continue to hurt if he doesn't take his medicine
• telling him he may have to go to the hospital if he doesn't take it
•  promising toys, crayons, stickers, etc

NOTHING is working... if we get it into his mouth 90% of the time, he spits it back out (the other 10% of the time - it's because we've pinned him down and depressed the syringe at just the right time). I'm kind of at wits end with this and at the moment I cannot pin him down. I've somehow injured my left shoulder --- can't reach behind myself, can't pull my pants up, can't put my hair in a ponytail but I can reach in front of myself and I can still pink the kids up - thankfully! The pain is in my actual shoulder (think almost socket area but more towards the middle-front of my arm). It's VERY sharp and radiates down my arm all the while bringing me to tears (and I have a pretty high threshold for pain - I mean heck, I didn't take any pain medication after my c-sections!)

Thoughts? Advice? Contractual & payment terms for taking my place during medicine administration times ;)  ha! I hope you have a great weekend!