Good and bad (Day 3, Post #2)

 Yesterday ( Tuesday)  was a pretty good day.

I asked for a priesthood blessing for Ellie and an employee was able to come do that for her.  It immediately brought the spirit and carried peace to my heart.

We got a goodie bag of things to decorate her room as well as some gifts.  

We had lots of fun decorating her tree and opening her presents.  We painted our nails and got to enjoy her new blanket and new socks.

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We had a TON of specialists come in yesterday, I’m not sure I can remember all of them, but I will try.

Speech Therapy- I said we didn’t want services

Occupational Therapy- I said we didn’t want services

Physical Therapy- I said we didn’t want services.

Rainbow Kids- a team of pediatricians, nurses and Social Workers available to help with complex situations like end of life, conflicts with Dr’s, quality vs quantity of life, etc

Child life- brought the goodie bag listed above

Comprehensive Care- Drs and nurses trained to help kids/families that have complex medical needs

The person from finance that gave the beautiful blessing

2 separate visits from hematology/oncology

Pediatric Gynecology

Infectious Disease

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Hematology——-they do not see anything concerning with her blood when they look under microscope. They do not know why the sputum has blood in it.  They do not have an answer as to why her hemoglobin dropped so quickly from Mon night to Tues.

Gynecology——-this is new.  PCH has not previously had a pediatric gynecologist.  Ellie has had her estrogen, bone density and periods managed so far by endocrinology, which is not really their specialty.  So I am so happy that they now have a pediatric gynecologist.  We came up with a new plan to lower blood loss and increase bone health.  We are switching from an oral ( gtube) estrogen to the patch.  It is better for bone health.  For now we are switching types of progesterone to a different oral one and then outpatient we will follow- up and get a mirena  IUD to give ongoing Progesterone.  This will keep the lining of her uterus thin so she won’t have periods.

Infectious Disease——- they started her on avycaz, and unusual IV antibiotic that is a combo of 2 antibiotics.  As well as vancomycin.  They are hopeful once her cultures grow out that they can stop the Vanc.  We will probably have results Thursday the 24th.

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Last night ( Tues) during the night even on bipap she was have apnea ( taking no breaths) and then  her heart rate would drop for 90’s immediately into the 50’s.  The team doesn’t seem too worried about it.  I am pretty worried, but it has stopped today, so I guess we are ok.