9.20.17 Cecostomy 10

No good news at this point. Aimee is sobbing, even after more morphine. With the first dose she was able to tolerate 60 mls of food over an hour and then 30 more an hour later (for reference, she normalling gets 290mls in a "meal"). Since we had to stop that feed, she hasn't stopped crying, moaning, jerking her arms around. Fever is back, flushed skin, soaring hear rate, and dropping oxygen. We're praying that she will calm enough/wear herself out enough to sleep soon.

9.20.17 Cecostomy 9

Still an upset, distressed girl. We've backed off on pushing feeds, re-upped IV fluids, and added morphine. 

9.20.17 Cecostomy 8

Aimee woke up distressed and crying a couple hous ago. Hoping the pain medication and an enima will help her relax enough to tolerate a small feeding. 

Blood pressure is better, fever is gone, and oxygen/breathing are normal. Heart rate is better. Hoping that trying to put food in her stomach again doesn't cause any of those issues to return. 

9.19.17 Cecostomy 7

More of a rough evening as we gave Aimee another small feed. She showed distress with a high heartrate, flushed skin, and currently a low grade fever. Her stomach is a bit distended and she just isn't digesting well yet. Hoping with a good rest tonight that she will tolerate a feeding in the morning without pain. For now we have added a pain medication through her IV. 

9.19.17 Cecostomy 6

One little 60 ml feed down. Took until this late in the day to get it sorted out with nutrition... even though we brought the formula ourselves, but still thankful for good progress! 

We spoke with the anesthesiologist. He said that the brain disorder specialist was actually wrong and our original guess was accurate. Aimee is not resistant, but very sensitive to anesthetic. Thankfully he used the monitor rather than just taking the specialist's word for it. Aimee needed very little anesthesia and I'm sure this is why her recovery has gone so well. He did say that for the spine surgery there will be a full eeg monitor on her brain, which will also allow them to ensure the correct amount of anesthetic. 

9.19.17 Cecostomy 5

Aimee had a pretty great night. A little low on oxygen compared to her normal and really low bloodpressures, which caused some stirring in the middle of the night with a risk assessment team. This is a tiny higher this morning. She also has not yet urinated on her own and when I have cathed her, there has not been much urine at all. They have added a larger dose of IV fluids and she has really perked up this morning. Amazing what hydration can do. We are hoping that at some point today we will be able to start her on slow doses of fluids through her g-tube. She does not seem to be having any pain, so once we learn about the care of the c-tube, maintain a good blood pressure, finish antibiotics, and get her tolerating normal feedings, we can take her home.

9.18.17 Cecostomy 4

We're keeping track of that anesthesiologist's name, because that was the beat experience Aimee has ever had with anesthesia. He did research ahead of time and talked with a brain disorders specialist. Basically they feel that Aimee may be more resistant to anesthetic, so they put a monitor on her head during the procedure to ensure that she was getting enough. How brilliant (and a bit terrifying to think that this was not done in the past...).

Aimee is now settled in her room. She has had no pain medication and she is calmly alert. Really incredible. The incision spots look great. The surgeon had a bit of trouble seeing, but he persisted and did not have to open her up as a consequence. We will let Aimee rest tonight and hopefully her gut will be awake enough to take her medications this evening. Hoping to start feeding her again tomorrow. Her oxygen and breathing are still a bit off, but she is doing so well. What an amazing girl Aimee is!