It's Only Wednesday, But Clouds Have Lifted

It's been a long week. And it's Wednesday. 

Sunday night the sitter texted that her kids were under the weather. The girls went to Nana's Monday, however Nora complained of a hurting ear and Hannah had goopy eyes. Tim took them to the Ped; Nora had a minor ear infection and Hannah has some viral cold. Great. 

Tuesday they weren’t too bad/no fevers, we sent them to the sitter. Both were exhausted at the end of the day; not much rest and being sick. They were both asleep by 7:15pm - !! 

Today they both woke up coughing and snotty so I stayed home. Barely fevers, 99˚ or 100˚.

Around 10am I received a call from Children’s that there’d been a G.I. cancellation with Dr. Kaul and if we wanted to get in today - ! This is the appointment I’ve been yearning for, which wasn’t supposed to be until Oct 28th! YES! 

Nana graciously came and sat with Nora while I took Hannah [Thank You again, Nana!].

Dr. Kaul was amazing. The first thing he did was coo over Hannah. Big points! A very eye-opening appointment with lots of clarity. He asked how often she’s getting speech therapy. “Once a month with Help Me Grow, once a month with this center.” He gave me a crazy look. He was shocked speech wasn’t being more aggressive - !! He literally paged our speech therapist while we were there [she never showed up]. So he’s going to push that. 

Then he asked how often we change Hannah’s g-tube. “Uhh... the cardiac team did during her heart repair.” Apparently these things need to be change every 3-4 months and no one told us - !! Dr. Kaul was clearly annoyed because the surgical team had released us when Hannah was younger, but failed to really manage us - clearly!

We discussed the blenderized diet. Dr. Kaul wants us to do a mid-way adjustment with what is essentially a pre-packaged smoothie. We'll see how Hannah does with that, and if she's good, we'll get our own recipe to make at home. [side note: our insurance does not cover a blender for medical purposes, however Nana's 30% Kohls coupon comes to the rescue!] 

Dr. Kaul is the first professional who actually asked to HOLD Hannah! He snuggled her and baby-talked her - it was amazing and glorious - now that's a professional I want helping my baby!

While we were there, Gerry, the assistant, was kind enough to actually swap out Hannah's tube with a new one! We CAN do this at home, however, Tim nor I can stomach it [heeyy-oohh!]. We can bring her in, or Nana said she can do it too [she was a nurse at St. Joseph Home]. 

Gerry asked, “So you use a new feeding tube every week?” “Um, NOOO!” I was super animated. She said our insurance covered an entirely new KIT of tube/button/etc per WEEK - WHAT?? Additionally, these infant smoothies are covered, too. * cue head explosion *

Talk about inter-hospital mis-communication! The GI surgical team let us free to go home and never followed back to manage us. Thank God I got referred back to the Thomas Center GI team to get us back on track. 

The last cloud to blow away for the week was a snafu with a physical therapy bill - we don't typically GET therapy bills. I was freaking out about the out-of-pocket. Thankfully the statement was wrong and all Hannah’s therapies ARE covered so I had a huge sigh of relief. 

Now if these girls would just get rid of their colds... : )