Sammy with his new friend Keegan hanging out in the infusion center at Children's
Hospital. Everyone was so wonderful as always. They gave us hugs and Sam was so
happy to see all of them. But BEYOND EXCITED to meet Keegan!!!
Hmmm, I know it has taken forever to get this post up but it has been nuts. (sorry Tiff)
Let's start with the positive: Sammy has met a new friend and I have too. We met Keegan, his mom Laura, and his Dad Bobby. It felt like we had know each other forever. It is amazing how having a chronically ill child instantly bonds you with people that are in your shoes. Sammy woke up this morning and was begging to go to Keegan's house and play again. WE are hoping to get together next week! WE can't wait.
Now on to the other not so fun stuff, essentially Dr B wants to wait and see what happens with Sam's IgG levels and basically see if he continues to get sick. I can't tell you how disappointed and frustrated I am with this decision. I was stressing out and anxious about yesterday's appointments thinking yes we are going to have to restart, and that was just anxiety producing, but now I am more anxious as we "wait" to see how sick he gets! His blood work will be back in 7-10 days and I guess we will start to form some type of plan at that point. Whether it is we wait and see how he does or restart IVIG because they are low I don't know. I was getting to the point of acceptance and thinking that it wouldn't be so bad, and I wouldn't so scared of him getting sick if we did it again. And now well now we just wait....
His GI doctor was pretty disappointed that we didn't call him with this last bleeding episode and to be honest I am feeling horribly guilty that I didn't. I wish that I would have now. But when we got the second opinion from the other GI I just called her right away this time. But essentially what he is saying is that the next time he bleeds that I need to call him and he will admit him to Children's that same day, they will do a bunch of cultures and blood work, wait for the cultures to come back and then do colonoscopy/endoscopy, and possibly more invasive surgeries depending on what those show. So again we wait.... He had lost weight again which is discouraging he is now 29lb 10oz at 3yrs old!!
Miss Sophia on the other hand the doctor was thrilled with! She gained nearly two pounds since the last visit. So she is now 21lb 11oz at 18months. We will continue the periactin and pediasure the way it is for about six more weeks, and then start to wean her down.