Challenging Week

Mireya was not feeling her best earlier this week.  Her energy level was low and all she wanted to do was rest. I took her temperature and it was at 99.3.  Not high enough for major concern, but something to keep an eye on.  I made a few decisions over the last week, allowing Mireya to participate in some group based activities. I want to believe she didn't pick up anything as a result.   Regret and guilt all wrapped in one...sounds a bit harsh, but the last time I 'decided' to let Mireya do something similar, we were presented with fever and a hospital stay.  Isolation really is no fun and over the last few months with the highs and lows of her counts, I've been so cautious about what we do and where we do it.  It's hard, but times like these I wish we could just live in the bubble, protecting her from all the things that 'could' potentially wreck havoc on her body, but that is not reality.  Some things I can control, others I cannot.  My name is Venus Bolton and I have a daughter that is immune suppressed and fighting to get well. Is there a club for this?  Yes, it's called LIFE...ok enough sarcasim and self-doubt. 

Later in the day, Mireya started complaining and crying because her head and stomach were hurting.  When I checked her temperature, it was up a bit 100.2 just below the threshold that would require us to go to hospital. I called Hemoc to make them aware of what was going on.  The Nursing staff was going to speak with the Docs and let me know if she should come in.  They called back within about 15 minutes and her fever had risen to 101.3.  There was no question at that point, we needed to pack a bag and head down to the ER.   I gave her a dose of Tylenol and posted a quick message on our Facebook page and Community Group to solicit prayers as we journeyed down the road.

When we arrived, we went through the cursory regimen.  Counts, checks, IV fluids and medical history and happenings.  When Mireya's temperature was taken, she did not have a fever. That fever was no match for the power of prayer and the practical/physical application of good ole' Tylenol.  A winning combination of spiritual and physical/practical applications working together for the good (trust me Tylenol has never reacted so quickly to a high fever on its own). Her counts came back really low, which was very disappointing after last weeks increase.  She would need platelets, but the additional test did not show anything of concern and we were scheduled to be discharged. The attending Nurse checked Reya's temperature before we left and it was 102, which concerned me.  I pushed the issue and challenged the call, but we were still discharged.  The general census amongst the staff was we should be covered overnight since we received the IV antibiotic and had an appointment in clinic the following morning. I didn't necessarily agree but after 6 hours of sitting in limbo, going home was a welcome option and we would deal with whatever else came in the morning.

Mireya's fever persisted overnight and she also began to have tremors as the fever spiked.  She had a low grade fever when we arrived at clinic but it quickly increased 101.8 shortly thereafter.  Reya's medical team was concerned particularly with the presence of tremors.  Tremors can be associated with infection.  There was also question as to why she was released the night before? Mireya needed a platelet transfusion, but we would have to wait until her fever subsided because one of the signs of problems during transfusion is an elevated temperature.  It would be difficult to determine if Reya was having a reaction or issue due to the transfusion because of her fever.  So we waited for the fever to go down and then administered the platelets without issue.  The decision was made to have Mireya admitted so she could be monitored more closely.

Day 3 and Mireya is doing better.  Weight loss has been a concern, but her appetite and energy level have started to return. The Nutritional Specialist visited with us and has added some additional snack options to help boost her weight.  A strain of bacteria was found in her bloodwork yesterday, as a result she was placed on a more powerful antibiotic. Reya's fever has diminished, but we want to watch the progression of the bacteria on her lab to determine if she will need IV or oral meds when she is able to go home.  We are hoping that will be tomorrow.  Reya's counts continue to be suspect, but some of that is to be expected as her body fights through this infection.  The hospital Pharmacy administered Tacrilimus to Mireya the first day we were here and the level was not very high.  We brought our capsule based Tac to the hosptial for Pharmacy clearance and approval and after just one dose of that prescription, her Tac level was up to 10.  That theory remains intact.  We'll wait out the day and hope Mireya continues to progress without issue so we can go home.

Child Life (we love Child Life), the staff, along with the Hospital's Education Program and ASK Outreach have been so wonderful to us.  The activities, resources and familiar faces truly make our time here more enjoyable and bearable.  Seeing Mireya's smile return has been priceless.  Thank you for your thoughts, prayers and messages/posts of love. It is truly uplifting.  Words will never express our gratitude and how much we appreciate your support and encouragement.  We are thankful to have loving, caring and thoughtful friends/family cheering us on and praying us through.  God Bless you all!