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.
Hey there,
ReplyDeleteI keep checking your blog waiting for updates. And wow some of your comments today really spoke to my heart, the parts about feeling guilty, like I failed, about the possibility of a lifetime of IVIG etc etc. I will tell you that when we started IVIG when Sam was 13months I was TERRIFIED at the very least. The infusion center where we were going at the time, was in Boston Children's Hospital and that is what they did all day every day. They were amazing, and Sam LOVES to go there. Unfortunately having kiddos that are sickly, means they are often poked and prodded, so for us the IVIG has been a God send. Yes he still gets an IV at least once a month, but beyond that we are SO SO SO MUCH better. He spent so much time in the hospital and sick at home until the IVIG. It has made such a tremendous impact on our lives. Even looking at your list of meds for your kiddos, we have cut our list more than in half since IVIG, not all at once, and we keep playing with things, but it is definitely a much less daunting task. Praying that IVIG is a smooth transition for you and your family. There are MANY MANY options out there, as far as treatment goes, we now do ours at a local hospital on a pedi unit, and therefore there is tons of actities, and a schedule that fits our lives. Depending on the maker of your IVIG, there is some awesome resources out there....OVERHYDRATE them on the days of infusions! That is the best advice I can give. It seems to help with IV access, as well as with side effects. I am so thankful for IVIG, and although I am still often disappointed that we are still doing this (we were thinking transient hypogam in the beginning but our trial off didn't go so well), it is so much better than the alternative...
~Danielle (www.weberfamilylife2.blogspot.com)