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 :)