Long Day

Today was a very long day.  Scarlett had her Pulmonologist follow-up visit at Cincinnati Children's Hospital.  I am exhausted.  I packed her medical supplies and loaded up her wheelchair last night before bed.  I also made sure her van had a full tank of gas and had all of our back-up supplies stocked in the trunk.  I woke up early this morning to get her morning respiratory treatments done which took about an hour and a half.  I then had to load her in her wheelchair and into her van.  That took about another hour.  I had to make sure I was equipped for any medical emergency that might arise.  It's very stressful to take her anywhere.  I'm worried about germs and I'm worried that she will get a mucus plug that I won't be able to clear.

Here she is riding in her van.  She loves looking out the windows.  Grandpa drove us to the hospital so I could tend to her in the backseat.  There is no way I could drive, suction her, watch her monitors and keep an eye on her facial cues all at the same time.

Here she is waiting to get a chest x-ray.

Here she is again waiting to see her Pulmonologist.  As you can see there was a lot of waiting today...  The entire trip took about 4 and 1/2 hours.  We have two more visits next week that I expect to take even longer.  There will be needles involved as well so I'm not looking forward to her getting poked.

She was such a good girl today!  I'm so proud of her.  She didn't cry once.  The Pulmonologist said she looked good and wants to see us back in three months.  We try to make all of our appointments during the spring and summer when there aren't as many germs out there.  I'm praying that she didn't pick up anything while we were at the hospital. 


After we got home from the hospital I had to sanitize everything, charge machines, change circuits, give her a bath and then do another respiratory treatment.  I wonder if she's tired too?  Ha...