I hate posting with no real update, but its 4 AM and instead of WebMD-ing for the 7698th time today, I’m going to write.
We had 2 doctor appointments yesterday. The allergist in the morning and pediatrician (again) in the afternoon. Her allergy testing went as fine as allergy testing a 9 month old can go. No allergies were detected, which is awesome news! As soon as he said that I started thinking about all the bread and chocolate I would eat. Then he ripped those cupcake dreams right out of my hand and said to still keep the dairy, soy, and gluten from our diets because even if it’s not an allergy she can still be lactose intolerance or have celiac’s disease.
Then we went to the pediatrician for the 9th+ time in just 2 months. I’m pretty sure I’m there more than some of the staff. So now Rae’s digestive issues have gone beyond the realm of her being uncomfortable and switched to indicating there’s some sort of infection going on. She’s almost never had “normal” digestion, but recently it’s started to show all the warning signs my GI said to tell him about if it occurs. The day before yesterday I got ahold of my GI and he said it sounded like an infection, but we’ll wait it out 1-2 weeks to see what happens and then do more testing (I’m no doctor, but why would we wait if she has an infection??).
Warning-poop talk. Then yesterday morning she passed something that looked like those first newborn meconium/black mucus diapers. If your a mom, you know what I’m talking about. If not, Google it. It’s disgusting. Everything I read (on WebMD. I can’t stop) said to contact my doctor immediately since this can indicate she’s passing blood or a serious intestinal problem, so they got me in. They calculated her weight gain over the past 2 months, she’s up 12 ounces. Which sounded great to me until she looks at the math she’d written out and said “We’ve got to figure this out. We don’t have any time to mess around,” which is probably the most terrifying thing I’ve ever heard.
With Rae’s white blood count being even higher during the retest and with everything else going on she said we needed to admit Rae to Children’s hospital. She goes out to make the call and comes back probably 20 mins later and said the hospital wouldn’t approve Rae’s admittance since she “wasn’t sick enough”.
Now this is where I can feel a nervous breakdown coming on. She’s too sick to wait a few weeks to get appointments for testing done, but she’s not sick enough to be admitted to the hospital to get testing done right away? What else is there to do at this point? Wait until she gets even worse? I just cannot fathom how her doctor, who knows all her results and all her history can say “I REALLY think she needs to be admitted and get this figured out now” and they say no. I understand the hospital would potentially expose her to more, and obviously I don’t want that. I just feel so helpless and frustrated for Rae.
And I’m sad for Little S and that every time we walk out the door he says “Raelyn’s doctor now?” I feel like I’m not being here for him because I am 100% consumed with Rae and her doctor appointments and every move she makes. Every time she cries I wonder what could possibly be hurting her. I can’t snuggle with her at naptime without crying and wondering when this will get figured out. I hate that I’m missing her grow up because I’m searching for answers.
All my doctors are putting their heads together today to come up with our next step and see if she can get testing done at Children’s today or tomorrow. Please pray for a clear and simple diagnosis soon, for peace and patience for me and for poor Raelyn. She’s been through test after test to no avail and I am just so distraught for her and what her tiny little body has endured.