- We've decided to get a second opinion on the timing of his open heart surgery. We have been very happy with the intellect of our cardiologist at The Clinic and she's explained things to us in a way that makes sense, is logical and we appreciate her conservative nature and ability to educate us while not talking down to us. That said, since your heart is one of your most important major organs, we feel we owe Luke the due diligence to validate we are on the right track with the decision to hold off on surgery until the little guy is 18 to 24 months old. We are going to see a cardiologist at Nationwide Children's in Columbus and at the same time are going to attempt to see a highly recommended ENT there as well. I'm not sure how I feel about the one we're seeing in Cleveland and since this other guy seems to be pretty awesome, we're going to try him out and see if he can give us a better understanding of what's going on with Luke's breathing.
- We talked about our recent visit with the hematologist this week and our decision to monitor his blood counts for a while in an attempt to figure out why his absolute neutrophil count (ANC) is so low. On the bright side, the hematologist called me last night to share that the CBC that she completed on him on Wednesday came back a little better this week than it was last week. If you remember, his ANC should be 1500 and it's been 500 a few times and was as low as 300 the day of his heart cath... yesterday it was up to 900... the highest it's ever been. We will continue to monitor. In addition, the hematologist suggested there could be some GI issues related to how Luke is absorbing fats and she indicated she had thoughts (although she admitted they might be a stretch) that he could have a pancreatic issue. The pediatrician and I agreed yesterday to run some additional blood labs and to do a stool sample and if any of them come back abnormal that we'll follow up with gastroenterology.
- In addition, I've noticed recently that Luke has maybe been over-using his right hand lately... he holds his right fist up like Superman and stares and stares and stares at it and also this week one of his physical therapists made a comment about it too. I remembered when Matthew was smaller and I inquired about when he might declare right or left handedness and the answer was that it shouldn't happen before he's 2 - if so it could indicate a neurological issue. So I asked again yesterday about Luke. Our pediatrician indicated that he wanted to talk with one of his neurologists to see if it was something he thought he'd want to see us because of... we are awaiting a response to that issue.
I guess those are the highlights... our checkup lasted an hour and 45 minutes. I continue to appreciate the amount of time our doctors give us.. I know they all have lots of patients vying for their time and the attention they give us helps me to feel confident that we're with the right caregivers! I have to end with this... I made the comment to our pediatrician that while we're seeing all of these various specialists it's hard to believe there is anything major "wrong" with Luke because of all the things I wrote about earlier this week... the good color, he's growing, he's happy and cooing, sleeping, etc. and he looked at me and responded with something along the lines of "if he looks like he's thriving, he's probably thriving". While he didn't say it, I think he was thinking "rest easy mama... slow down and enjoy". He did make a comment about how sometimes when you see a lot of specialists, in a way you open up a can of worms because sometimes they can get pretty far out in left field, reaching and grasping for rare diagnoses and at that point once the suggestion has been made, you owe yourself the due diligence of validating or ruling out their concerns, which just continues the downward spiral of more appointments. It can be overwhelming and since we've never done this before and only have the knowledge we've acquired over the last few months, we're still learning. It makes me think back to when I was a little girl and I could rely on my mom to tell me yes or no to a simple question or when I was a teenager to tell me which dress looked best and on and on. I wish someone would just tell me what to do and that I could trust them enough to say okay, do it and move on. It's tough stuff being an adult and it's even tougher now that we have kids. I hope I will be the kind of mom whose kids have that same kind of confidence that I had (and still have) in my mom.
We also had a visit from our Help Me Grow coordinator yesterday as well as a physical therapy session AND I stocked up at the grocery store, made a pork roast and mashed potatoes for dinner, did two loads of laundry and even accomplished some much needed cleaning!