Thursday, February 21, 2019

Lucy versus Iron

I'm going to try to condense a lot of stuff over the last week into a little bit because it's exhausting otherwise. So way back in August, at Lucy's two year check, she had her hemoglobin tested because that's what you do at two. It was a little low, like 10.7 and the target is at least 11. Honestly, I didn't think anything about it, I'm really low all the time and I just assumed she was too. No big. Her doctor thought it was something to correct so she gave us this horrible liquid iron supplement that she for damn sure wasn't taking on its own and anything I mixed it in she would throw up a few minutes later. She couldn't handle it. I, admittedly, gave up and said .3 is not a big deal.

Fast forward to last Monday at her 2.5 year check up and I had forgotten all about the August stuff. Well, the doctor wasn't happy that I never came back for another blood check so she said we had to do it that day. Not a big deal. Lucy doesn't cry or care about finger pokes, so that's fine. We do that and it turns out, she's 10.9 and honestly, I don't think it's a big deal. Doctor gives me the option of seeing a specialist and I said no, I'm sure she's fine.

Fast forward to Friday when the blood smear came back and turns out, it says she has "normochromic, normocytic, hypoproliferative anemia" and I get a call from a scheduler within minutes telling me she has an appointment for Tuesday with a hematologist oncologist.

Slow the damn train.

This went from being a little low in iron to seeing an oncologist?

On Tuesday we went to that appointment. It's kind of surreal to sit in a children's cancer center and people give you sad smiles when they walk by. It's a real testament to my mental health medication because without it I'm certain I'd be a crying mess. With them I'm fully numb and I don't really feel anything. I know people say they'd give anything to not feel anything in certain circumstances, but having that feeling myself, I don't like it. I'd rather have some kind of an emotion running through me because this feels cold.
I will say, for as much as I don't like this hospital/health system, they do a really good job with making it feel kind of alright. Lucy had a good time playing with the toys in the waiting area.

Even Matt played awhile with her while I sat in the sunshine holding all of our stuff including notes I had, copies of her lab work and reports, and just thought about how some parents sit here having no idea their entire lives will change based on what one person says.
Lucy's appointment went a little differently. We had a great nurse and she did all of Lucy's intake stuff and had her go pick out a book to keep and that made her infinitely happy.

We had kind of a granola-crunchy doctor who really was nice. I can't say that she wasn't. We went through health history, went through family health history, talked about why we were there, etc. Eventually she stopped us and told us basically to change her diet. She hands me a checklist of items saying she needs 1-2 from each area and that would get her the daily requirement of nutrients, specifically iron. I tell her she already does. Lucy is the BEST eater. She eats a lot of iron rich foods, she gets a lot of vitamin D and C, she gets yogurt and things good for her gut, if ever there was a kid you could show as someone with a great diet, it's Lucy. Truly. Her diet is not to blame for low iron.

Then she goes into telling me about natural microbiomes and how kids who are delivered via c-section don't get this and then when you don't breastfeed you're screwing them up even more, and I had to interrupt her and say I had no choice. She was an emergency c-section and I was in ICU for a bunch of days and my pituitary gland is shot so my milk never came in anyways so yeah.... not my fault. But she keeps hammering all of that home. She handed me a LOT of handouts, all of which I don't need because we are already doing all of those things.

At this point I'm getting really frustrated. I ask her what this blood smear report means and she blows it off completely, tells me she's not worried, she's not worried why I'm here, though the fact her MCV count (I have no idea what that is) is decreasing is worrisome but "it's probably fine". She does a quick exam and tells me it sounds like Lucy has a wheeze indicative of asthma. She says her ears have fluid and asks if she has a speech delay, which she does. She tells me that this kind of fluid is indicative of hearing loss so we should have a hearing test done right away.

Annoying because her doctor didn't see/hear either of those things and now I'm pissed off. She made me feel like I'm a bad mom not getting her county services for her speech delay but this could be because she can't full hear us? Are you kidding me? So now I have to call and get both of those things checked out. 
We end up doing some more lab work that day and she had to have blood drawn from her arm and Lucy cried SO hard and I felt like the worst mom in the world. I feel guilty because I always think my AFE caused all of this and I don't even know what we're dealing with.

At the end of the day we're getting a letter but her hemoglobin is in the 10.2-10.9 range which is normal for that health system but low for ours, so I don't know where we go there. Her vitamin D levels should be at least 50 and she's in the low 20s, so that's not good. We're supposed to get some kind of supplement for that. I don't feel like we got any answers. I don't really have gut feelings anymore so I feel stuck on what to do next but I am so worried there is something wrong with her and we're all missing it. I'm so scared she's going to end up with cancer or something and I won't be able to help her. I am forever questioning why this was all put on our plate.

1 comment:

Shooting Stars Mag said...

I'm so sorry, Sara. That doctor at the hospital might be smart, but she sounds like she was really mean and seriously, none of that is your fault! Sheesh. I don't understand doctors sometimes. I hope that things get better for Lucy though!!