This week was almost exactly 4 weeks from the last stay at Seattle Children's and our week off of clinic appts......soooooo, Summer decided it was time to go have a slumber party there again! I think she thinks we get to log our "frequent flyer" miles and cash them in for a Hawaiian vacation....ha ha....no such luck! Her IV was looking a little thin and we were worried it was going to break, so I took her in to get it checked out. Sure enough, it was about to break, so we had to admit her to the "fix-it shop" for a repair job. I was sent home to get some things and had to head back at 3:00...took Summer in, signed paperwork, and got her going.
The IV team came in and repaired the line. Fortunately, it was something they could repair without doing surgery (at least on her...surgery was for her line (: ) It was just like re-wiring and patching a bike tire. The IV nurse cut off the bad end of the tube attached to the clamp and end cap, added a new piece of tubing with a new cap and clamp, and then added a rubber sleeve with glue under it. The glue needed to dry for a minimum of 24 hours without using the line to run TPN, so we got to camp out. Summer cannot go more than 4 hours at a time off the TPN, so they hooked up a temporary IV in her foot and ran the nutrition that way.
This is the old piece of IV line they cut off...the skinny part was connected to the rest of the tube that goes into Summer's chest and straight to her heart. It was stretched thin just above the thicker part of the tube with the clamp (used whenever we hook or unhook her TPN tubing to the end cap)
Here's the new, longer line...tape is our friend! The tube goes in her chest where the blue circle is...that is a special patch that has medication that lasts for 7 days..keeping the germs away. We switch it out, scrub her chest with the same solution, and re-tape it all. At the end of the line is the cap we attach all the tubing we change each day for her TPN. On her tummy you can see her lovely "tire tracks" as the docs call it. Her gut surgery left this lovely scar the exact width her tiny abdomen was when whe was just under 3 pounds. It is supposed to look like a pencil line when she is older....for now it is pretty hideous! My hubby is grateful for it :) Maybe she will decided never to wear a bikini! :)
She was admitted Tues evening and got her own room since she had a stuffy nose. We were in the newest room in the entire hospital...just finished 2 weeks ago...it used to be the Home Care Nurses office :) Tom met me at the hospital to visit, then we left about 9 PM. I hate leaving her there, but the nurses love her and I never sleep well. There is also that issue of a husband who leaves at 5:45 AM for work, and other kids that go to school, sigh.... Life with Summer is at times complicated....we are definitely learning the art of flexibility!!
The next morning I went back to the hospital and spent the day there....watching glue dry. It was nice being there under non emergency curcumstances...quiet....relaxing day :) But, I was still anxious to get her home. The 24 hour mark was 6:00 PM and the doc said as long as the IV team ok'd it, we could go. Just after 6, the IV team checked the line...no leaks :) So, we waited until about 8:00 PM for all the check-out rigmarole to be finished.
Summer's chunky everything...so cute
I am thankful every day for the little things. So grateful Summer's brain is looking good, her eyesight is good, she can hear well, and that she progresses every day. She is so special....even her nurse told me, when I arrived Wed. morning and her whole body lit up with one of her huge smiles, that he knew she was a very special and calm spirit. I am so happy to have her as part of our family :)
Napping in the sunshine
Enjoying a bunny snack :)
More cute conversations from Summer....why not?