One Month at Home

Friday marked ONE month at HOME for Ella!  

We continue to stay busy, every day.  I thought it might quiet down with fewer doctors appointments but not really.  I've actually spent much of the week on the phone with the doctors office (or trying to get them on the phone).  Let's just say that some doctors are juggling a lot of patients.  I leave messages that go unreturned.  I have to call the receptionist and insist she doesn't transfer me into voicemail (AGAIN).  I've also learned that I get results MUCH faster when I call the doctor-on-call on a Saturday than when I try to get a hold of the nurse during the week.

ELLA

Ella is doing great!  She's actually growing a little too fast at this point.  Her TPN is supposed to be reduced by 25%!!!   Of course there was a mix up in communication between the doctors office and infusion company so this change hasn't happened yet (because I wasn't involved trying to get it facilitated).  I had to talk to the on-call doctor today for another reason and it happened to be OUR doctor so I mentioned that Ella's TPN hadn't been adjusted yet - so she should have that handled (administratively) Monday.

For nearly a week her fussiness improved because her gassiness improved.  We started her on daily Immodium which helped a lot (for a while).  We were able to put her down during the day more frequently!  Grandma even said we had a 'different baby'.  When I mentioned not being able to put her down in my last post I had a lot of feedback about gadgets that might help.  We have the vibrating bouncy seat, the swing, the Ergo carrier, etc... we use all of that! With the exception of the carrier I consider being able to put her down in the bouncy seat, swing or anything where we are not holding/attached to Ella as successfully putting her down.

She did start getting gassy again mid-week.  Ella will have chronic problems with gassiness caused by a condition called Bacterial Overgrowth (BO).  This is due to Ella missing the valve between her colon and small intestine.  Bad bacteria in the colon are not supposed to make their way back into the small intestine but due to the missing valve (from her surgeries) the bacteria move into her small intestine and multiply causing gassiness, more frequent/looser/mucousy stools. 

I first called the doctors office when the symptoms started on Monday.  I talked to them Wednesday (after multiple calls) but it was focused on another necessary issue, getting Ella's bloodwork, we didn't get any feedback on her BO. By Thursday afternoon Ella was really fussy due to the BO.   Friday morning I called the doctor again.  It took 3 calls to finally get a call back(before the weekend and before the compounding pharmacy closed at 5pm for the weekend - the compounding pharmacy has to mix her antibiotic).  

ADMITTED

Wednesday we were admitted back to the hospital for the afternoon.  We needed bloodwork.  Her broviac (the line that is used to administer her TPN) also allows for blood to be drawn from it, it no longer was allowing blood draws.  It actually took about a week for me to get instruction from the doctors as to what to do to get blood drawn.  Wednesday morning it took over an hour of (MULTIPLE) phone calls with the doctors office & labs to TRY to track down our orders before I would take Ella to the hospital for bloodwork (we are on contact restriction, I didn't want to take her only to find out that the lab didn't have orders).  

Of course when we got to the hospital they didn't have our orders (after I was reassured by the doctors office that they just talked to them and they had the orders).  Thankfully by then I had a copy of the orders emailed to me so I was able to resolve that quickly.  

The Children's hospital area of the hospital attempted the draw through the line unsuccessfully.  We had to be admitted in order for the line team to work on her line.  It wasn't bad because they put us in a private room in the PICU and Ella slept for most of the day.  They tried several attempts using an anti-clotting medicine in her line but they were not successful.  This is not uncommon.  Apparently there can be a small flap that develops on the end of the line where pushing fluids through (such as her TPN) works fine but drawing blood out the 'flap' blocks the line.  

Since she can still get her TPN through the line I absolutely will not consider going back into the operating room to replace the line (and the surgeon agrees).  Unfortunately that means that for her bloodwork every 2 weeks we will have to go back to the Children's Hospital and she has to get STUCK.  This hurts mommy & Ella.

We got to the hospital before 11am Wednesday and got home just before 7pm... just trying to get a blood draw.  It was a long day.  BUT... it was ONLY for the day!!  

NURSING

I'm way behind updating you on our nursing adventures.  The home health company did confirm that I have coverage for over 100 nursing visits so I FINALLY had a nurse coming out nightly without the daily battle (and many more unreturned phone calls) to make that happen.  

Because of many frustrations with my nursing experience with our home health company, my pediatrician referred (at my request) me to another home health company.  I visited them on Monday to get a preview of their pump/priming process and ask some questions.  I liked them a lot but did not like their pump for various reasons (much less user friendly).  I was disappointed because I was hoping that making a change might solve my problems.  

I left that appointment thinking - why wasn't anyone from our infusion/home health company concerned about why I was having such a hard time learning to administer Ella's TPN.  Shouldn't they want to try and figure out the problem and resolve it?  Could it have anything to do with how I was trained?   On the way home I called our infusion company asking them to send out one of THEIR nurses (they subcontract nursing so my nurse works for a different agency) to REteach me how to administer Ella's TPN.  The fact that I had such problems priming the line - I had to be missing something, a simple trick...  

I also spent some time over the next day or so researching pumps, youtube videos of priming the line and asked my SBS Facebook group for tips & tricks.  Between my research, the new nurse and my sister (visiting) on Thursday we finally figured out the 'trick' to priming the line without aggravation or anxiety. The infusion company nurse did see first hand the problem I continued to have and I think, had I not received a lot of feedback from my research, would not have been able to help me resolve the issue.  

But we figured out that it is the angle you hold the filter during priming and the need to immediately clamp the line as soon as the line is filled (as not to allow the fluid to empty and air to backfill the line).   I'm amazed that this isn't taught first hand.  But I am happy to report that we have tested this theory Friday and Saturday nights with success (and without a nurse here to do it for me).  Tonight, from start to finish it was 25 minutes!!  That's all.  With no anxiety!  

So finally I am able to administer her TPN myself without problem and I can call off the daily nurse visits (that I had to fight to get).

OTHER

My sister flew in Thursday and my dad also came for the weekend.  We tackled a somewhat big project.  We swapped out my Living Room and Family Room.  

The Family Room was a very small space but were we seemed to spend most of our time.  The Living Room is a much larger space that was rarely used and has recently ended up a storage space for lots of baby gear.  I arranged for an A/V company to move the TV (mounted to the wall).  We moved the rugs & furniture and took the opportunity to CLEAN, especially all of those spots that are impossible to get to normally.  It was a much bigger project than I anticipated.  All of the big stuff is done now but the little stuff is still not back in place.  

My sister has helped a lot with the nursing aspects of Ella's care this weekend; she's graduating from Nursing School in December!  She has helped with the resolution of the TPN administration and also helped me change out Ella's Mickey (g-tube) button for the first time (again, thanks to youtube education).  

I still have a lot left to do and less than 4 weeks left of my leave.  I know I won't get to all of the "nice to have" projects but I still have a few "must have" projects that must be done. This week's priority is (MUST BE) preparing/scheduling interviews for part time nanny help for when I start work again.