It’s complicated - Hospital day 5

I spy bag

Wednesday 7/12 - update

Hi everyone, I’ve been wanting to send an update because everyday we get a new I spy clue! A great reminder that our ultimate physician is God.

“You made all the delicate, inner parts of my body and knit me together in my mother’s womb.”

‭‭Psalms‬ ‭139‬:‭13‬ ‭NLT‬‬

Julia’s last fever was Tuesday at 6 am (102.1). Finally, Julia has gone 24 hours fever free. Doctors have been trying to rely on data (blood test) and observation to determine what’s happening in her little body.

Don’t want this to be a complicated explanation but basically we have two issues at hand:

• Her blood tested positive for “COOMBS” an antibody sticking to her red blood cells. How was this introduced to her body? Likely from one of the blood/plasma transfusions or prolonged antibiotic induced. This will make any future transfusions more complicated as there has to be precautionary testing and the blood will take longer to make. A way a doctor explained to us; our blood has big RH jewelry pieces and small pieces of jewelry as well. The big jewelry as the “I spy items you see above” are no problem to match, however the little jewelry pieces are harder to match. Julia has received a medication IVIG to try to destroy these antibodies yet this is not an immediate process, doctor hopes this is a “TRANSIENT” antibody, as this medication can only be administered once in a long while. They supplemented with heavy dose of steroids to give her body the extra boost it needs to get rid of these foreign cells.

• A God Thing! Only He gets Glory because I for sure don’t know anything! But we’ve been praying for wisdom. I asked for a ‘feces’ test because I had a gut feeling, I just felt they had not looked at what’s coming out, since the source of fevers had not been answered and the above blood issue didn’t fully assure that the fever was a side effect of the Coombs issue. The feces study came back positive for ‘C-diff’ - she was on 24/7 IV medication a little too long, killing the good bacteria in her intestines, causing the fever and other symptoms. She is now being treated with a different IV and oral medication to help restore her intestines good bacteria.

The above issues have set back Julia’s consolidation phase. Today doctor confirmed we delayed a week, and pick up next week with this weak missed treatment.

If Julia remains fever free by 6:am, this will mark 48 hours fever free and we will get to go home tomorrow Thursday. our sunshine continues to be a fighter and God has surely given her the spirit of David to fight this giant. This morning the on call PD doctor came around 12:30am to explain the c-diff issue. Julia was ready to shut down for the night and she pointed with her finger at the door telling the doctor “no more business today” - rude, but funny I’m not going to lie! But this doctor instead of casting judgment, she gave us the shortest more inspiring speech I’ve heard a doctor tell us this far, I’m paraphrasing ; “she’s delighted to see Julia’s feisty little self, this is just a small bump in jujus journey, and she expects to see her grow down the road to be a young, lively and strong lady. For us parents to keep the goal ahead and not loose sight, Julia is resilient and strong, she could tell Julia will not give out an inch in this fight”

The power of words! It was refreshing and I needed to hear this. So thankful for Dr. Mandal’s bold words. This reinforced my hope.

Thanks friends for your time and prayers for our little sunshine! I know God is hearing and answering in many ways. Desperately need more of Him, and a lot less of myself!

“Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.”

‭‭Psalms‬ ‭139‬:‭14‬-‭16‬ ‭NLT‬‬

In God we Trust!