Not the darkest day, definitely not the brightest day.
Medical update 1st.
•Enteric tube terminates within stomach.
•Right upper quadrant Billary stent unchanged.
•no free air, previously noted right right lower quadrant pneumatosis nearly resolved.
•no abdominal calcifications
•no acute osseous abnormality
•lower chest normal
(Not good enough for meals or “home” airbnb)
?Labs are great! Jude’s liver numbers are the best they have been since he was 5 months old. So much to be grateful for. The GI cultures as of 12pm have came back clear & we are out of isolation. The social worker said I should have a more positive outlook, because I asked when do we get out of solitary confinement? She also asked ME the questions that trigger my tears…
Are you ok?
What are you doing to take care of you?
She also reminded me you can’t pour from an empty cup…
As much as those questions & feedback bring me bone chilling cringe during times when my Jude is hurting & or in pain, I caught myself wanting to be mad at her. All day I felt mad at myself for feeling annoyed, she was just doing her job(and looking out for me).
She asked me if an adult coloring book would help me relax, I said NO, an adult coloring book would not help me relax right now. I got teary eyed & asked her if I could go back to be with Jude. All day Thursday I couldn’t find the proper response to that simple question, Are you ok? In this moment of triumph.
Today at rounds when I was asked am I ok? I told them I am surving, but is any mother or caregiver thriving when their son had a NG shoved down their throat & the same day ordered to fast from food and water for 5-10 days? I was told I shouldn’t say “shoved down” Jude’s throat, I should say placed.
The social worker and the Chief of Jude’s transplant met with me in a private room today. To check in with me & tell me to fast from all food & water order is in place all throughout the weekend. We will not be talking out of the hospital until likely Wednesday. I broke down & said I am the ONE stuck in the room with Jude crying for food or water… so the chief changed Jude’s no food order to jello, popsicles, yogurt or ice cream. The social worker wants me to establish a better plan for replacing feeding tubes when & if needed. I agreed, this measurably could’ve done better.
I strongly believe Jude is 12 and has a ton of white coat ?resentment. I am confident holding him down to place the NG tube in does not help Long term. It diminishes any sense of power and control of body. This upcoming Monday I plan to work with Jude’s beloved child Therapist that has known him since kindergarten to help me advocate for Jude. Jude has an amazingly, amazing Child life specialist Lauren who is also going to help me. Lauren SEES JUDE & how phenomenal he does with bloodwork labs, she was allowed to go in with him when his PICC line was placed (I am not even re?day to vent about that). She said Jude did great for 90% of the PICC placement 10% of the time slight moaning of pain, during the brachial going into the heart. Big PICTURE, we are a team! Same destination to get my precious Jude to thrive with all that he faces & carries. This is a bump in the road that we will get through, a very hard, disappointing & slumpy part.
My medical treatment goals for Jude is to alleviate any unnecessary anxieties, stressors, fears, & Bad surprises. Anxiety is real. Anxiety amplifies pain.
On an upbeat & positive note,
Avery Torrey, Nicole Torrey, Reece Fairchild & my baby Zane will be coming up tomorrow! That will be the BeST medicine for Jude & some definite morale booster for me…
Thank you for all the love and support! It is carrying me through this muck stuff.
PS: the texts to Jude helps keep him so distracted & has been so nice to watch him feel connected!!! My heart thanks you!
