Post-op Day Eight
Caleigh remained in the MSICU on Tuesday. She started to feel better and took a couple of naps. They increased her Valium dose that day and in the evening she actually slept from 10 to 3:30. The antibiotic, Vancomycin, was starting to work again. Caleigh's fever continued on despite Tylenol and Toradol. Her oxygen need fluctuated from 4 liters to 1 and overnight they were able to wean her from the cannula. Caleigh's respiratory rate was still extremely high and she continued to breathe fast and shallow.
Post-op Day Nine
I had spent the night at the apartment and did some much needed laundry before coming up this morning. Caleigh was still in the ICU and plans were being made to move her to the floor this afternoon.
We packed up and made it to a room about 1pm. It's quiet, peaceful and not overshadowed by fear and dimmed lights. Caleigh's respiratory rate continues to be a problem, but she hasn't needed the oxygen since last night. Her fevers continue on despite Tylenol every 4 hours. She's feeling pretty miserable.
After seeing her belly and watching the fevers and respiratory rate increase the surgeons decided to go ahead and do a CT of her abdomen with IV contrast. The idea was that there was some kind of abscess. This is a pocket of infection in the abdomen. They've been talking about the possibility for about five days, but with the fluid and swelling after surgery they wouldn't have been able to see much if they had done it earlier. There are two types of abscess in that abdomen. One is a honeycomb type that needs a very long duration of IV antibiotics and another that is a specific pocket of fluid that can be drained surgically. Either answer isn't the best news.
Caleigh has stooled 6 times since surgery and she is passing gas well. These are all great signs that her intestines are waking up. The fevers could be something going on with her intestines, but all signs point to an abscess right now. She remains on TPN and Lipids with nothing by g-button.
We went down to the CT about 7pm this evening. The new CAT scan machine took 0.6 seconds to get the shot. It took more prep to get her on the table and inject contrast than the actual test. We felt that it was very anticlimactic for how much it must cost. At 10pm tonight the results for the CT are in, but we haven't talked to the surgery fellow on service.
The good news this evening... Caleigh has been asleep for two hours now.
On Tuesday, I was able to go out to lunch with a good friend. We sat in the sunshine, I got a good intro on how to speak with a Boston accent and laughed a lot. It felt good. Caleigh had a sweet friend come by today that gave Noel her very own vintage American Girl hospital gown. We got some great hospital tips from a CHB pro and yummy brownies to go with it. Everyone has been so incredibly kind.
Bundles of mail have been rolling in everyday. Caleigh opened a few cards on Tuesday but got tired pretty quick. She smiled and smiled and loved every second of it. It was so wonderful to see her read along and feel everyone's love and support. We'll try to open a bit each and everyday which means the support and fun continues throughout our entire stay.
If you missed the latest US Pediatric Hospital Rankings this week here's the link. Again, Boston Children's Hospital is #1. The hospital has been buzzing this week. They are also number one in GI and GI Surgery amongst many other specialties that Caleigh sees here. We're proud to have been guided to such a wonderful place for Caleigh's care. At some point I'll write about how this surgery and time inpatient has been for Eric and I, but overall the experience so far has been very different and in a positive way.
Details for mailing a letter, card or package to Caleigh. You can read more about sending mail to a patient on Boston Children's website.
CALEIGH A. GRAY
7 SOUTH / 10 SOUTH
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVENUE
BOSTON, MA 02115