I get asked this quite a lot...

 I get asked this quite a lot.  

How have the hospitals changed since the pandemic?  Have they changed?  What is it like when you go there?

So- here is what I know for us in the Omaha, Nebraska area:

It has altered some depending on the severity and CDC guidelines throughout the pandemic, yet one of the biggest changes upon entering is that everyone gets screened and temperature checks and must wear a mask.  Not only are you screened upon entering- or even outside before parking, you are "screened" again at whatever department you go to.

Once inside and screened social distancing is still adhered to and we have been put into a room much quicker than usual.  (Many times we do get put into a room anyhow as Emily is immune suppressed) Also only one adult has been allowed most of the entire time with the pediatric patient and no siblings.  

Then procedures are pretty much the same, however; the staff all wear masks, eye shields and sometimes gloves and gowns depending on the situation.  There are some other changes as well, but if you are not someone who frequents a hospital you may not even notice that these things are out of the norm.

 I did take a few pics of our view as we entered one of the facilities we frequent.  At this hospital everyone parks and enters at the same location- doctors and all.  We are all in a line for screening and then you go to your designated appointments/areas where you are asked similar questions, but no temp check.

So there's the answer.  Some things are similar, the halls and waiting rooms are a bit more sparse than usual, yet some aspects are quite different and perhaps even better for all as part of the reason one goes to a clinic or hospital is because they are sick. 

This past Sunday Emily's visit to the ER made me think of another topic I will cover soon.

Transitions

 

We have an interesting series of challenges upon us.  It is new.  It is uncomfortable.  And it will happen anyway.  These obstacles are overall a good thing, however; they don't change the fact that they are unfamiliar territory for all of us as a family.  My hope is that by sharing our path we can help others along the way as we have always tried to do.

So what are these new transitions?  Transitions of care in so many areas of Emily's life due to the fact that she will be turning...18... this July!  Such a blessing.  We are beyond excited for her.  She will turn 18, which is 9 years past her life expectancy.  She will be a senior in high school.  She will also need to transition from pediatric to adult care depending on the doctors and hospitals over these next few years.  School and jobs will look different also.  Every stage has its place and many kids turning of age have their own journeys as they go off to their lives after high school.  For a special needs child with a rare genetic life limiting disease it looks even different.  One of the first transitions is starting very soon where we need to say so long to our pediatric home health nurse of the past almost 8 years and do our cares at the hospital where she can still stay with the pediatrics until she is older and we find a good adult care home health agency.  We are in no hurry for this transition, but it will come up first and quickly.

It is difficult to explain the bond one builds with our care team, especially when most have been in Emily's life anywhere from 5-14 years of her very extreme medical life.  We are excited to still be able to see our friends, like Sansa at Children's to help Emily through her pokies and labs every three weeks still.

Here are a few resources for other parents making similar transitions for their special needs child:

https://kidshealth.org/en/parents/adult-care.html 

From Nemours Children's hospital

file:///Users/admin/Downloads/AlongtheWay_YoungAdultFinal.pdf

Nebraska resources

http://www.vr.nebraska.gov/resources/pdfs/DDTransitionBooklet.pdf

                                We will share more as we go about this adventure of transitioning.-

COVID CRUSHERs

" Just give me the dang shot already!"

Emily has been saying this nearly every single day since the vaccines first rolled out and initially due to her age (17) the Pfizer vaccine was not being offered and then she was lower on the list after our current Governor of Nebraska initially denounced the disabled community.  

We are thankful that the Pfizer vaccine became offered in our area and that partly because of us advocate momma bears out there the Governor and DHHS overturned their initial announcement.  As the COVID vaccine opens up around the country for 16 year olds on up, we are also appreciative of those choosing to get vaccinated to help protect themselves and others.  Others like Emily with immune compromised systems.

Taylor-Jo has been put on two different research lists to hopefully make the cuts to test the vaccine for 8-12 year olds.  She was sad she wasn't able to get the vaccine for her sister and now is hoping she can get it.

I was vaccinated along with Emily from our old friends at Community Pharmacy (Thanks so much Kyle and Robin).  They have been working tirelessly at so many centers to protect and serve during this pandemic.  We love the name- COVID CRUSHERs and the T-shirts!  #gretnastrong

Joe got his first Pfizer vaccine yesterday and we are one step closer to cautiously, yet more safely getting back out there in the world.  Step by step.  Masks on, slow steps with advisement of Emily's doctors to get some much needed interaction.

We know all the things about why or why not to get the vaccine and we all have choices, yet Emily's plea is to consider kids like her and those unable to get the vaccine yet- do it for her, for them, for yourself.