One Week At Home!

Another CaringBridge update

Grandma & Ella

It's been a week now that Ella has been home!  What a wonderful (and stressful) week!  Her coo's and alertness have increased daily!  She has so much more to take in.  She watches the dogs, they lick her hands.  She loves going outside!  She adores being in her Ergo carrier.  She's getting used to the car seat, now that we have the adjustments made correctly for her size.  She sleeps really well in her Nap Nanny (and to think I almost didn't get one).

Our days are busy.  Monday morning we saw the eye doctor at 8am (and will for many Monday mornings to come).  She did really well on the trip to/from and at the eye doctor.  She had a good report too.  We have learned that we can request to be taken straight back to a room to limit her exposure at all of our doctors offices. 

Nurse Jacqueline had to come later that morning to draw weekly bloodwork. I also had multiple phone calls with the infusion pharmacist, infusion dietician, and several others.  

Tuesday we had THREE appointments.  Actually, I left Grandma & Ella alone Tuesday morning because I had an appointment for Ella that it was medically recommended she NOT attend. It was at the WIC office.  Because of Ella's condition, the fact that she's not permitted breastmilk and requires a special, very expensive, formula she is eligible for government assistance for her formula through WIC.  This was a humbling experience for me, as until Ella was born and I was advised to apply for medicade (which I was able to do without going to DSS personally) I have never experienced a government assistance office.  We are now officially part of the 47% (I won't get political here).  

I'm glad we were exempt from bringing Ella to the appointment.  If I had to bring Ella I would have foregone the benefit, no doubt.  There had to be between 2 - 3 dozen children in the waiting room at any given time. I was impressed with how well behaved they all were.  The average appointment is 2 hours, most of that time spent in the waiting room.  When I finally got home I went straight for the shower and to dress in clean clothes before I got near Ella (or touched anything in the house).  I even disinfected the things I brought with me to the appointment, my steering wheel and driver seat of the car.  

It's true, I am officially a germ-a-phobe!

At 1:30 Tuesday we had our first office appointment with Dr. R, our GI doctor.  It went really well.  Dr. R was thrilled with how good her bloodwork was!  Everything seems to be reading in the normal range, or very close to normal.  So going home without Omegaven (or Lipids) does not seem to be hurting us at this point.  

Fortunately/unfortunately Ella, who had been stooling 2 - 3 times a day (which is acceptable), had 5 stools from midnight until noon, just prior to our appointment.  Because of this an increase to her feeding amount was not considered.  We believe she may have bacterial overgrowth (BO) which is something that she had in the hospital and will have fairly regularly due to her short bowel condition.  We are on antibiotics for that now (I had to find a compounding pharmacy after our appointment to get the Rx made up specially).  I am happy to report that in the subsequent 24 hours since the appointment she's only had 1 stool (from which I had to take a sample and send off via FedEx)!!

We were supposed to meet the OT at the house around 3:15pm but I had warned her we might be cutting it close due to our appointment with Dr. R.  We ended up rescheduling for later this week since I had to get to the compounding pharmacy and have her Rx made up before they closed at 5pm.

Every day at 4pm I take Ella off of her fluids.  This only takes about 5 - 10 minutes to get her disconnected and capped off.  At this point she is FREE until I hang her fluids again at 8pm.  

Supplies laid out to hang Ella's fluids

Hanging her fluids is the worst part of my day.  It's getting better but it is extremely anxiety inducing for me (I struggle with anxiety as it is).  The last two  nights I've gotten the process done within an hour.  I say it all of the time, I just can't believe that they make non-medically trained people do these procedures.  Risks to Ella with her line/fluids is infection.  The other risk with priming the pump, getting all of the air out of the line before attaching to Ella is air embolism.  Priming the pump is absolutely the worst part of the process for me, flicking the filter and scrutinizing every centimeter of the line, over and over again.  I absolutely hate it!

I did talk to the infusion pharmacist and Dr. R about priming the line and how much anxiety I had over it, how it can't be healthy for ME to go through that every night (indefinitely).  They made me feel a little better about the priming process, as the pump will alarm if there is air in the line (once it's on the patient).  Dr. R said she's seen anesthesiologists have significant air bubbles in syringes and administer to the patient (that makes you feel warm & fuzzy, huh), so she told me not to worry about the little air bubbles, it would take a lot of air to create an embolism.  She could also tell that I am more than thorough (OCD) about priming the line.  

Because of her medical conditions/needs, I worry a lot.  I worry about her line pulling (displacing from her chest).  I worry about infection.  I worry about her G-tube coming out.  While her home healthcare nurse is nice, after the incident Friday (both with the filter/air in line & with the missing backflow valve causing blood in her line) and the dressing change she did on Saturday (not to my standards) I don't have full confidence in her, which only piles on to my anxiety.  I've requested a new nurse.

She's still not a fan of baths.  

I'm practicing some deep breathing for dealing with my anxiety.  I have Xanax for when it gets really bad.  And some nights I'll have a glass of wine after I get her fluids hung.  If there is ever time/energy I will dig out my yoga video.

Grandma is a good nursing assistant.  She keeps Ella while I have to do/prepare her nurse procedures.  She brings her to me and keeps her quiet (usually) when it's time to detach/flush/attach the line.  

And when we are not being nurses, we are being mom & grandma.  Ella is doing better on her own, in the swing, on the playmat, for periods of time but she still prefers to be held.  We are working on that every day.  We are constantly doing laundry, making formula, warming bottles, changing diapers, keeping things tidy, feeding the dogs, there is always something to do.  

Grandma and I seem to have a pretty good routine in place and very good communication.  I am so appreciative of everything my mom is doing for us!  I didn't anticipate needing so much support... but with Ella's medical needs, it's just something I can't do without help.

Today we had NO appointments!!!  Grandma went to Target & the grocery.  We have been busy with the things I mentioned above, but it's nice because there is a little more time in between to relax or get on the computer.  Tomorrow, Nurse Tammy is coming to visit and we'll also meet our Physical Therapist for the first time.  

Now, it's almost time to take Ella off her fluids...