July 31st 2016
Hey everyone, its Alexx. It’s been a while since we have updated the blog, so here ya go!
Lets see..the last time I wrote was July 17th. Here is what has happened since then.
My mom turned 60! Not the greatest place to spend one’s birthday but in typical Aviva fashion she made the best of it. We do have a lot to celebrate after all! Our family came to visit and we enjoyed a home cooked meal and a delicious cheesecake. And she got blessed with a wonderful gift…getting moved to Acute Rehab!! It’s on the 8th floor of the main building of the hospital. She definitely had some growing pains in adjusting to the new staff and room. But she is loving the PT and OT she gets every day. Some days are better than others; good days and bad days. But overall the trajectory is moving forward and she is gaining strength.
Another event we celebrated was my parents 33rd wedding anniversary on July 24th. Their love grows stronger each and every day. It’s truly inspiring. Brooke, one of our favorite and kookiest techs/medical assistants and a genuinely awesome human being, brought them a few different soups from B+H for lunch. We had Matzoh ball soup, Borscht, and Mushroom Barley. Food for the soul. Then for dinner I was able to arrange a special meal for them at one of my moms favorite spots–the atrium on the 9th floor. They were served Ceaser salad, heirloom tomatoes, chicken, sea bass. And tiramisu for dessert. It was a nice escape for them.
Medically she still has a few issues to overcome.
1) BK virus: she still has a high number of copies in the urine which causes hematuria (blood in the urine); thankfully no evidence of the virus in the blood. Because the virus causes clots in the urine they want to keep the foley in and they are giving her a lot of fluids to flush it out. For now treatment is not indicated. We just need to wait for it to clear. Hopefully soon.
2) Mild AKI (acute kidney injury): Her creatinine (a measurement of renal function) has been slightly elevated above baseline. Her baseline was around 0.7 and now she’s hovering around 1.4. She needs to drink a lot of fluids and they are also helping her out with IV fluids. We aren’t totally sure what is causing it; it could be a few different factors. The medication, the BK virus. If it doesn’t improved they will consult nephrology.
3) Myelosuppresion: Her bone marrow still hasn’t recovered. It took a hit with all of the viruses and then the Foscarnet (which was treating the CMV) can also make the white cells drops. They gave her an injection to boost the white blood cells. She still needs platelet and blood transfusions every few days. Right now they want to watch and wait. If it doesn’t recover they will probably do a bone marrow biopsy to see what’s going on.
4) Immunosuppresion: She still has virtually no T cells. This is from the ATG and can take up to a year to recover. But we are hoping that someday soon we start to see them trending upwards
5) She’s off steroids!!! She finished the steroid taper about a week ago. They are monitoring the HLH labs and EBV virus closely to make sure it doesn’t come back, so far so good thank god.
She is doing well in rehab and we are told the tentative discharge date is August 10th which is exciting but scary. We need to make some adjustments to the house to make it more accessible for her, and will need a home health aide and visiting nurse. We are hoping to meet with the social worker this week to start planning for the transition home. She can’t wait to be in our house in Long Beach with the pooch. She hasn’t been home since March 17th. What a long journey it has been.
So today on this rainy day Mom, Dad, and me are enjoying each other’s company, doing crossword puzzles, and playing games. One day at a time, one foot in the front of the other.
And always….photo montage!!!
Love and light. Keep my momma in your prayers. Let’s get her through this next phase and bring her home!!!!