We busted out! 

On a shocking note, we were given the green light to GO HOME this afternoon! Wesley’s body has responded incredibly well to the chemo treatments and today we were allowed to leave! Yay!! 

But not without a crazy, rough morning. 

Today I learned something. Something about myself. Wesley was scheduled to have a lumbar puncture this morning, with a chemo injection into the spinal fluid. Some of you may not know, but OHSU (Doernbecher) is a medical school and teaching hospital. We are rounded on daily by the attending doc, fellow, resident and med students. This morning I had a gut feeling to request no resident do the procedure. I had this vision of the LP gone wrong, Wesley needing multiple attempts and a spinal fluid leak causing a spinal headache or worse. I’m all for teaching but just not this week, it’s been too hard of a week, I just wanted to reduce any chance of further complications if I could prevent them. But I felt bad speaking up and making this request. I felt bad being “that parent”. So guess what, I didn’t speak up. I didn’t speak up, I didn’t ask, instead I kissed him after he was sedated and left the procedure room. A short time later the attending came back to my room and let me know there had been some complications and Wesley ended up with 2 pokes and significant swelling and that we would need an ultrasound of the swollen area. I cried. I was mad at myself. I didn’t speak up and make the silly ‘no resident request’ and my poor baby would now have to tolerate more pain in his little body because of me. Because I felt bad asking a simple request and didn’t want the attending doc to be upset or annoyed with me.

What I learned about me is I need to put aside my people pleasing desire and speak up when my gut tells me to.  And it doesn’t matter what other healthcare providers think of me, as long as what I am doing or requesting is to benefit my child.

Wesley does have a spinal headache (we got some good meds for it) but he was still cleared to go home. His back is swollen and tender but he will be fine. I am so mad at myself for not speaking up, but I know I can’t go back in time and change what is. 

But we get to GO HOME!!! Now we get to learn how to live our new reality…NG tube, PICC line, multiple appts a week, chemo, nausea, fear of germs or infections making their way into our house and into Wesley’s body, fear of being hospitalized at any moment, and now new fear of not doing the right thing as the parent. 

Thank you all for your prayers! What initially was “prepare to stay several weeks” turned into “minimum 2 weeks” turned into 9 days! While the cancer did not miraculously go away, I feel like getting out of that place today was still a miracle. Continue praying for Wesley and for this journey, pray for no infections in his body and no fevers that could lead to more days in the hospital. At this point he has zero white blood cells and zero immune system. Any little virus or bacteria could be devastating for him. Pray for David and I as we navigate this new norm, and that we can provide the best care and comfort to our little guy!