Daily Hope: Friday, February 6

Hope: day 61

Hope had a pretty rough day today. The attending doctor looked at her follow-up KUB x-ray from last night and thought that it looked as thought the gas wasn't moving as well as it should so they consulted with the surgeons who had worked on her intestines and they decided to perform an upper GI, only in reverse. Since she has a nice little "port" (what Aunt Em refers to as her nubbin) that goes straight to her intestines they were able to put the dye in via her ostomy site and imaged it running in reverse, tricky. They were looking to see if she had any scar tissue that might be forming from the previous surgery and possibly blocking or slowing things down. The great news was there was no signs of that or any other trouble.

Hope is so adventuresome. All her previous procedures and tests were performed at her bedside because she was on the jet ventilator and wasn't stable enough to travel. Today, however, she got to ride in a transport isolette and took the elevators all the way from the 3rd floor to the 1st floor where the radiology department is She was wide awake for the trip and was just laying back, taking it all in, like the good little adventurer she is. She tolerated the travel and tests very well. There was lots of big equipment in the room where they did the imaging so Hope felt OVERLY small on the very big table the put her on, but thankfully Peggy (Hope's favorite RT) was there and held her hand to keep her company while they ran the tests. A big THANK YOU to Peggy for making her feel better.

They stopped Hope's feeds while they were waiting for the surgeons, radiology and while running the tests, so she resumed feeds at 5pm tonight. They didn't weigh her because of all the other adventures. They also didn't want to take her CPAP mask off because she was having a lot of "episodes" today. She de-satted and dropped her heartrate SEVERAL times today (scarring Mommy & Daddy) and a couple of times she needed some stimulation and oxygen to help her remember to breathe again. The doctor things she may have outgrown her caffeine dose so that will be increased later today and another dose starting tomorrow.

Hope didn't seem like she felt good today, which made Mommy, Daddy & the Grandparents worry. But hopefully tomorrow she will perk back up.

Other good news is that the blood cultures from yesterday hadn't come back with any growth today, but Hope will get an additional antibiotic today just to be on the safe side.

Hope's Great-Grandpa Holtz is sympathizing with Hope tonight as he is now spending the night in the hospital as well. He passed out earlier today and had to be taken to the hospital. The doctors said his heart is beating irregularly (the top is beating faster than the bottom). Hope is praying that Great-Grandpa's doctors will take as good care of him as Hope's doctors have taken of her, and if they do she's sure he'll be healthy and back home soon. So please say an extra prayer for Hope's Great-Grandpa Holtz.