Unbalanced

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Yesterday 9/5 your Abuelita and Tio Alex came to stay with you so your Dad and I could get away from the hospital. They said you had a really good day and hardly fussed at all. Of course your Abuelita held you for most of the day so I'm sure that helped.








Your Dad and I should have done a 100 different things but all we wanted to do was to spend some time with Brother. We didn't do much, lots of family hugs (missing you of course), some couch wrestling, playing in the backyard, and a nice family lunch together.



I felt completely unbalanced. Like when you have one foot on the dock and one foot in the boat and praying you don't fall in. I enjoyed being with Pierce so much and the few hours we had together flew by and seemed so inadequate.

At the same time I felt pulled to be with you.

Were you in pain, were you getting your meds? Did you need me? Does your brother need me more?

I'm faced with the impossible choice. To choose between my children.

No matter what I do. It just doesn't seem enough for either of you.


and this is why we strip him for pasta night!




Today is your 8 month-iversary. I made a sign for your bed and brought in donuts for the nurses to celebrate. This was of course not the way we planned spending the day but your here, and your going to get better and come home. We'll take it!


Your Aunt T stopped by and brought you a little gift.





Your nurse today was Rae. She was awesome. A real advocate for your pain control. Boy did you keep her running.




So the new plan.

You wound is not getting better despite all the treatments. Today in fact you coughed and bright red blood started seeping out of your wound. Scared the crap out of me!

Dr. Bailey had decided to turn your care over to the wound team and I'm grateful. Wounds is what they do and I'm hoping their treatments will help you finally turn the corner and start improving instead of progressively getting worse.

They have increased your calories to 27 Kcals. They have also added protein, zinc, and vitamin C to your feeds to help aid in wound healing.

They have switched your dressings from wet to dry to a wound vac. The are hoping by vacuuming away the drainage you will start to heal.

They are also going to start you on hyper baric oxygen treatments (yes like Michale Jackson!) but to do these treatments you need ear tubes placed so you are on the list to have the tubes placed tomorrow.

and then we wait

and see

and hope

to get back on sold ground again.