The H Word (Again)

Another CB Post

It was an interesting week.  Grandma was wonderful to come spend days with Ella while I worked.  She kept me up to date on what was happening, as Ella has a busy schedule in NICU most days.  

Thursday Ella had a colonoscopy to investigate the source of the bleeding (the last that we had seen was Tuesday AM).  The procedure was scheduled sometime between 12:30 - 1:30 (depending on who I talked to) but I had been told the GI doctor runs early. I cleared my schedule so I could be there to talk with the doctor.  Shortly before 8:30am Thursday, just before rounds made it to us, the GI doctor shows up.  I had assumed he was rounding himself but no, he was ready to do the procedure!  Talk about early! 

Her colon looked good.  Pathology reports came back and everything looked fine.  This is great news but it doesn't give us answers.  How do we get out of this cycle of feeding/not feeding/feeding/not feeding?  Not feeding a hungry baby for days at a time is not pleasant for anyone. 

So, Ella started back up at 18ml/3hrs (this is just over 1/2 ounce) on Thursday afternoon and has been doing well with it.  She fusses briefly when she finishes because she want's more.  But she is generally happier and sleeping better.  When Grandma got here Tuesday afternoon, she said "what fussy baby"?

Well the doctors are using the H word again.  Home.  They just started talking about it yesterday.  The plan is to send her home on the TPN (IV fluids) and for us to work with the GI specialist as an outpatient on balancing out her feedings.  I'm happy with this plan.  However it does sound like it will be a few weeks before she'll be able to come home, because apparently we have to reapply for FDA approval for the use of Omegaven (which we already have FDA approval on as an inpatient) as an outpatient.  Who knew?  They said they would get the paperwork started Monday.

Since it will still be a few weeks before she comes home (if ALL goes RIGHT), I am pushing for working on increasing her feeding amount, in a careful manner.  The doctor on yesterday (very conservative about her feeding amounts) is not open to increasing her feedings.  He asked me why I wanted to increase them?  Um... she's hungry.  The goal is to increase her feedings and reduce her TPN which is both sustaining her but also poisoning her.    

There's really no obvious answer about her feedings.  I wish there was.  I just don't want to sit tight for the next few weeks until we are discharged to keep trying.  

I know it sounds like I'm always pushing back but it's not like that.  I inquire and request discussion and consideration to my concerns.  I do get frustrated but that usually boils down to a lack of control over things, frustration is natural - especially in someone who always likes to have a plan.  I have let the breast milk issue go at this time, even though the GI doctor told me this afternoon that it would be fine to start her oral care with breast milk back up because they would have seen evidence of an allergy in the colonoscopy results if that was a problem.

I have a lot to learn about and put in place to get her home.  There is only one local home health care agency that works with the Omegaven.  I have to figure out whether we will still have Medicade coverage or whether it ends when we leave NICU.  I know my own insurance pays for "skill" visits from home health care (specific purpose for visits) while my nurses tell me I'll need private nursing at home for a while, and that Medicade should cover it.  There will be medical equipment necessary (and the way my mind works, I think about what happens in the event of a power outage?), fluids that will need to be changed daily (how do I store it, how frequently do I receive a shipment/delivery?) and of course, learning how it all works.  It's a lot to learn, my new nursing education, but I'm ready.

I've also accepted that once we are home, we will likely be in and out of the hospital for a while.  Babies with SBS at home on TPN rarely go home and stay home.  The most common reason for readmittance is infection (due to the central line for her TPN).  AND, we are going to be going home as RSV season begins, another big reason for hospitalization of preemies (micropreemies).  I discussed this with the nurses and this basically means isolation, which I already expected.  We can handle it.  It will just be difficult to keep from introducing her to everyone who wants to meet her.  In a perfect world we'd be out socializing and on play dates.  But being HOME together will be more than good enough!

We didn't get to go for our little walk outside this weekend.  I was prepared with everything we needed today (finally) but three nurses were unexpectedly out sick leaving them short handed.  Maybe next weekend. We had a nice time hanging out together this weekend indoors.