I posted this to Facebook on Tuesday.
Thank you for all the prayers. Henley is doing ok - blood cultures have been repeated and will continue to repeat every 24 hours.
~~~LONG POST~~~
Here's a little background as to what happened yesterday. First, she slept for a solid 6 hours during the night and had to be woke up for feeding. Very unusual for her. Second, she had blood that had backed up into both lines. This isn't ideal, but a call to the on-call doctor resulted in them telling me to re-flush both lines. I checked in with them again a couple hours later because her behavior continued to be unlike her. She was foggy acting, only nursed for 5 mins and hadn't smiled in an hour and half. The on-call told me it was probably because she was just tired and had a really long week - being anemic again didn't make sense because she had a red cell transfusion on Friday.
My intuition told me it was more than that. I went with the on-call's thoughts for about 30 mins and then she started to feel warm to me. Took her temp and it was 100.1 - this technically doesn't meet "fever protocol" but we immediately decided to take her to the hospital and call the on call dr yet again to notify them.
Once in the "ED" (emergency department) - they did labs and decided based on her behavior they would do blood cultures too. Those culture results take time to come back - usually 24 hours + They did IV fluids and she officially reached "fever protocol" and so they they did IV antibiotics. She seemed to pep up a little bit after fluids, nursed and we were sent home. The next couple hours she acted fairly normal. We were told we could give her tylenol and she fell asleep. I grabbed a much needed shower and went to bed too (I have been fighting a terrible cough and am still worn out from last week).
About 10 minutes after I climbed into bed Kyle's phone rang and it was the hospital telling us that Henley's blood culture was growing a bacteria and she needed to be brought to the hospital and admitted directly to the 4th floor ASAP.
It was really upsetting, but we quickly grabbed what I needed and I took her in.
Since getting her last night, additional cultures have confirmed there is a blood infection. Her team is optimistic that we can get this under control and continue on the current timeline of transplant - BUT there are not guarantees and things will be evaluated on a daily basis. She's continuing to get IV meds - a different kind than was given in ED. Her lab work doesn't look great. She's still very anemic and close to needing another transfusion of red cells and her platelets hit new all time lows everytime they are checked. I feel like it won't be long before she starts getting platelets transfused daily.
Here's a few more bits of info/educational stuff based on dr conversations we have had --
A blood infection has really been our greatest fear for months. Neutrophils are responsible for attacking bacteria and she doesn't have many of those and the ones she has are known not to functional normally in SDS patients.
Red blood cell transfusions should last awhile - sometimes up to 120 days... in the past Henley's red cell transfusions have gotten us by for awhile.
Platelets can sometimes need to be transfused multiple times a day. They are very short lived in the blood stream and it appears Henley's body is making very very few of these right now. Her doctors also suspect the ones she is making don't function normally.
On a spiritual note when we got to the hospital room last night Henley started waving - smiling and then clapping her hands. She was looking at "someone" that I couldn't see. At one point she was laying on her back in the crib holding her unicorn and just smiling and waving like crazy at the ceiling. I managed to grab a couple pictures and prayed it was angels that were responding quickly to all the prayers being sent up.
Thank you for being our prayer warriors. Thank you for helping us through this difficult journey. We have been told we are here, inpatient for the "duration" - likely til June.
I’ve had lots of requests for our mailing address and from some people asking if we have a Go Fund Me page. We do have a youcaring page
that was set up by my cousin for us. Kyle and I have struggled to express how others can support us. We know we need help- but it’s hard to figure out exactly what to say sometimes. We are especially grateful for prayers, because we need strength, patience and continued faith right now more than anything.
