Bradley, a recent PA graduate, is working with orthopaedic surgeon on hip and knee surgeries at Northwestern University and is super thoughtful to all family and friends. He was kind to share a note he came across that I wrote him a few years ago after our summer together at Camp Mah-Kee-Nac in Lenox, MA. During daily rounds with Halia, we listen everyday in the Halia’s room as the doctors talk to each other and then share with us. After time, we are able to follow Halia’s situation. It’s not normal to spend seven months in the hospital, but it’s day to day and it never seems like seven months.…

October 31, Halia goes into OR and the cardiologist will have plastic surgeon in as well.  They might take plastic sheet off, close sternum and change temporary pacemaker wires.  They’ve never dealt with this virus before.  She’s now on a NG tube and feeding better.  She was kicking her feet and smiling which was nice.  You could see she was in pain when she sneezed.  God, I hope she doesn’t sneeze.  It’s makes me heartbroken.  Her rash is better.  We stay on top of the changing to help.  I love changing her.  Anytime with her is a blessed moment.  On a work note, we finally hire my seasonal assistant.  His…

October 26, the weekly OR visit reveals she has the same infection.  She’s to be in the hospital for a few more weeks.  It is what it is, and disappointing, but we’ve heard this news over and over that we go with the flow.  We are there everyday except the day of OR as they say she is sedated and no need to come down.  I miss spending every nights, but my back and hip are hurting bad from all the sitting with the commuting, some sitting at hospital, sitting while doing the courts and the 3-tiered fold out sofa bed.  I’ve ordered a mattress to put over the hospital…

October 4, if the chest area looks improved, they will go to OR and do the pacemaker.  October 6, the doctors said the bacteria is slowly growing and she will be in the hospital another 6 and hope the temporary pacemaker will last.  If not, they might use some drugs and try another temporary pacemaker.  It’s not what we expected to hear, but she’s happy and smiling.  Antibiotics are messing with her poop and she has terrible diaper rash.  She loves her stuffed animals with pacifier.  She’s playing with her musical touch toys.  Daddy has got her another couple of toys.

September 25, she’s out of surgery and looks good.  She’ll be back in the OR to check the area for growth and reapply the vacuum.  Hopefully in two weeks the cultures are still negative and the new cultures too.  At that point, if appropriate, they go into OR and put a permanent pacemaker in.  October 1, Halia goes into OR at 12.  Can’t eat until after, so lots of crying, and I’m heartbroken as always.  Chest looks good, but tissue needs to look better, so they might go to the other side for next week pacemaker plan.  Halia absolutely doesn’t want to be under anesthesia.  She fights it, and they…

September 21st, we see a bubble at one of her incisions and we are headed to Miami for a more in-depth check of the fluid.  Bradley is enjoying the Laver Cup in Chicago with former college teammate Riley. I year ago I could have stayed longer in Prague due to hurricane and actually seen the first Laver Cup myself. Now, I’m walking to the hospital cafeteria and I get a text and call from Jose and he’s asking me if Deso is going to play in pro league.  Yes, he’s probably just waited to the last second to sign up. I open my email, as I’m always on the job…

September 12 we finally get to bring our angel back home.  We are being trained by home health care to treat Halina with her antibiotics.  She has a blood clot, so we also must give her a shot twice a day.  All treatments must be within the hour of the scheduled time.  We never miss a time.  Nastya is amazing with taking care of the pick line.  I’m a little slower at getting comfortable, but I can do it.  I help with the shots and we make a good team.  We want our angel home for good, so we video our nurse and face time when we are to do…

September 1, Halia is in Miami with an infection where her pacemaker is.  She is on 3 antibiotics while they figure it out.  Hopefully it can be treated orally.  Worst case scenario is they must open her back up and put new hardware in.  September 4, I made it to Miami as tomorrow is the big day with doctors.  Winds and rain were strong at 40 mph and shaking the car.  Hoping Halia doesn’t get opened up again, but that’s what I’m expecting.  September 5 the wound doctor, surgeon and the infectious disease doctor will get together and check out the wound.  They still don’t know what bacteria she has.  …

August 28, the pediatric cardiologist and infectious disease doctor think there might be an infection and so we are off to Miami.  Halia has an infection right where the pacemaker is and hopefully it’s only on the surface and can be treated orally so we can go home.  Today we had bloodwork, ultrasound, CT scan, x-rays, plastic surgeon, echo cardiogram and Halia is going to be so tired.  She was not a happy camper with any of this.  She has an infection between the skin and the muscle near where the pacemaker is.  The CT scan hopefully will show if it is going any deeper than the muscle tissue.  They’re…

Mid-August and so wonderful to have our angel home.  She’s a little thing.  She’s not eating much as she has a little stomach, thrush in the mouth from antibiotics and is teething early.  Can’t give her any teething Orajel as she’s too young.  Ordered some Dentinox from Europe.  I tried a little “old school” and gave her a “touch” of rum on the gums. Poor thing.  She’s also a little out of sorts we think, being away from “normal” hospital lights and activity and still possibly traumatized from all she’s been through.  Nastya is amazing with taking care of her with breastfeeding and pumping.  She jumps up to take care…