“We feel as though we are battling for Lexxi’s life”

Hi all
We are waiting on test results to determine if Lexxis brain shunt is blocked or if she has a shunt infection. I think she is just over the reaction to the drug they gave her yesterday nite. So the improvement we are seeing is because that is getting out of her system. She has been diagnosed positive for another respiratory virus similar to pneumonia but they are also wondering about her head…shunt infection , shunt blockage or shunt disconnection…Today we had a lot of diagnostics done chest and skull X-rays, bloodwork, EKG, MRI along w several teams examinations.
Today was particularly hard as by the time were admitted and settled on the floor it was 3 am. Lexx was then wide awake and not wanting to sleep till 430. Mum and I only had 2-3 hours of sleep each until we laid down at 7 pm tonite…
Lexx has had multiple doses of IV Benadryl to control the tongue swelling and is finally on the up swing we think.
Looking back on this last couple days…we discovered that the drug she had this adverse reaction to is the drug they would have used in her heart catheter at sick kids to prevent infection. Had she had the heart procedure last wed, this drug and this virus I don’t think she would have survived. We may have lost her. . We are so blessed and grateful to know that she is severely allergic.
Side note this is the second time she has reacted to this drug after the last time she went through allergy testing and it confirmed she is not allergic. Well, that’s why they used the drug again and thought it was safe! In fact the emerg doc that administered it was coincidentally her allergy specialist covering an emerg shift and was shocked that she had a reaction again contrary to the report he gave us regarding the allergy which was discussed just before administration this time. The test was inaccurate!
We feel as though we are battling for Lexxi’s life…why such a battle…?!
God is good so grateful that we found this out prior to the heart procedure. Thank GOD it was postponed from last wed to may 21 st. Now we know not to ever use this drug again even though the medical team are still advising it (crazy) as I said battling and advocating for her life.
Mum and I are absolutely exhausted and still fighting a bug ourselves. We managed to come home and rest for a couple hours while Paul is with Lexxi now at the hospital.
When we left her at 6 pm tonite she was happy sitting up and playing in her bed. It looks like we have turned a corner…
We will keep you posted and update you further as we know. In the meantime they are trying another antibiotic and hoping and praying she will not react!
Thanks again for all your support and prayers. Without my faith in God I would not have gotten through this time. It has been the most difficult stay and advocation to date.

Lots of luv,
Nic, Paul, Liv And Lexxi