Exciting presents and scaring Mama

This beautiful fabric is such a wonderful gift! Her paternal grandmother sent this fabric along with some fabric for a  quilt I’m making for Alex. I am thrilled! Other than a single picture on her dresser, Bella had nothing from her family. Now we are going to make her a quilt. It will be so special because it’s from her Grannie Annie! Grannie Annie also sent an early birthday present for Bell – new pink sheets!

Outside time and playing with her sisters

I know I mention how much Bella loves Alex every single week – but she does!  Here she is helping him in therapy.  She would love nothing more than to touch him all day, every day!

 

Joy and Bella both had appointments at Texas Children’s.  Bella had pulmonology and Joy had ENT.  Bella’s doc walked in and asked when are we going to decannulate.  Like, really.  As in let’s schedule a date.  As in the child who hasn’t slept without a vent since the very beginning of 2009.  That kid?  The one who hasn’t had any sleep studies or any weaning protocols?  Yep, that one.  I started to cry and then pulled myself together very quickly.  He seriously believes she can do this.  I went into stressed out handle everything mom mode and started discussing things with the doctor.  My nurse started discussing things with the doctor.  He won’t listen.  He thinks she can do it.   Fortunately for me, Joy’s ENT is also Bella’s ENT.  We spent Joy’s appointment talking a great deal about Bella!  He cautioned me that my pulmonologist tends to get a little enthusiastic.  He reminded me that this was my decision to make.  Not at all how I felt coming out of pulmonology.  I came up with a plan.  Since Dr Lungs hasn’t done any weaning protocols on Bella (believe me I looked up TONS on the internet), let’s try some on our own.  My nurses were totally on my side.  No one feels she was ready to decannulate.  (He was seriously talking about doing it immediately – the very next week.   Pull the trach and see how she does.)  I am not a “let’s run to the hospital and see if we fail” kind of mom.  I want to know how everything will play out before we think about going downtown.  After three and a half years of living with Bella, my children are so scarred, that they panic if I even mention going down town for an appointment.  They were not thrilled by this news.  They were such things would go horribly wrong and she would be stuck down there.  There were a lot of tears!  (Did anyone mention that it’s the week before school starts – only the busiest time of the summer getting everyone ready)

So my plan.  Let’s start an intense weaning protocol – the doctor can be happy, she is progressing towards decannulation, and I’m happy, it’s happening on my turf and under my guidance.  The first thing I did was put her on CPAP.  She completely failed the first hour.  It was so scary, but we were patient and stood by her bedside with O2 and lots of worry.  Apnea alarms, desats, the whole thing, but she rallied, and did great the rest of the night.  The rest of the week, she was on CPAP and did great.

Next came the trach trials.  Miserable failure.  We are still working on those.  Somehow we are trying to figure out how to get over the first 4 hours – those are the worst!  She is so tired and just can’t keep her sats up, so her heart rate goes up, then her breathing rate, then it all plummets again.  It’s scary how low a breathing rate can go.  It’s a vicious cycle. 

But we are taking steps, and they are big steps.  We are tentatively scheduled for the end of September.  We shall see.  Bella has to show me BEFOREHAND that she is ready for this.  I am not OK with a decannulation failure.  Dr Lungs is OK with that.  I am not.  We have had enough surgeries and my other kids don’t need any unnecessary prolonged hospital stays just to satisfy a doctor.  So that is stressing me out major.

Later the next week…..Taking Bella out!  If she is going to be a “normal little girl,” then let’s see it.  Let’s test her out and see how she does.  So we took her to a play place at the mall. (read germ city)  She loved it!  The girl that gets so easily overwhelmed loved it!  Go figure!

I’m still freaking out, but trying, trying, trying to make steps before RSV and flu hit the area.  It makes me worry what her first illness post-trach will look like.  I guess we’ll just have to see.

Can you imagine a Bella without a trach or a suction machine?  Amazing to think about!  Let’s just get there safely.