Working on a Plan

The doctors just finished rounding on Gage.  His night was okay.  Jason stayed here with him through the night.  There were alarms going off about low oxygen, that were more annoying than alarming.  Other than that, just a usual sleepless night in the hospital.  The doctors have estimated that Gage has an extra 1 Liter of fluid hanging out in his little body.  Yesterday they started him on an IV dose of lasix.  This is twice as potent as his dose he takes by mouth.  Much to my disdain, it did not do a whole lot.  Instead of him being a negative fluid balance ( More  peed off than drank) he was positive 600 mL.  Which means, he drank more than he peed and that much more fluid is sitting in his little body.  You can still see it in his poor, puffy face.

The goal for today is, start him on another diuretic along with the lasix (in other words get him peeing) and continue his heavy IV doses of steroids.  For the steroids, he will get a total of 3 doses IV and then they will transition him to pill form that he will be on for at least 6 months.  Today, he receives his second of 3. We were hoping to be discharged tomorrow, but it doesn't look like that will happen with his fluid hanging on like it is.  I am fine staying until this little guy gets feeling better.

On a more positive note, the steroids are starting to work on his appetite.  Last night he was actually interested in eating.  Not a lot, but at least was asking for food.  This is more than he has done in the last 3 days.  Bites here and there, but at least SOMETHING.

Jason left this morning to head back to Oregon.  It is really hard when he leaves, but he really needs to be back this weekend.  This is prom weekend for Megan.  The only way she is allowed to go is if her dad goes as her chaperone.  So he really needs to be back to support her in that.

It has been really hard being apart from Megan.  If we had to do it over again, we would have never let her go home.  At the time we thought Gage would get his transplant and we would all return home shortly after the school year started.  She is a little head strong (not sure where she gets that 😉) and really wanted to go to school in Oregon,  The extra stress this has added for all parties involved, has not been worth it.  To Jason's brothers family who have let her stay there, to Jason who feels so pulled as to where he needs to be, to me not feeling like I'm a part of her life, and to her, who is tired of being alone and going back and forth between our house and her uncles.

I am so glad, that we have an end to this "living apart" in site.  So many times I think, we'll fix that when we are done with this.  However, the 17 months of not being home and not being together as a family is starting to take a toll.  I feel inadequate as a parent with the struggles that I see in our children who aren't sick.  Struggles for attention that is needed, issues at school, feeling left out and alone, wishing they had more of a social life, wishing they had less of a social life.  All daily life struggles that are still there, but aren't addressed at the time due to attention needing to be to the child who is sick.  We have some pretty amazing kids who have really shined when faced with the difficult circumstances we force them into.  BUT, sometimes, I feel we miss the goal by a long shot.  So here's to another month or 2 of pushing through until we can be "us, the Bingham FAMILY" again.