We had a big meeting today with the entire team taking care of Casey – GI, pulmonary, palliative, ICU, nursing, surgery, etc. We asked a friend of ours to sit with Casey so that we could both participate in the meeting (Thanks, JH). There were about 15 people in a conference room going over our …
Vibration Vest and More
The respiratory team has Casey using a special kind of vest that hooks up to some air pumps that vibrate her chest quickly from all sides. This is suppose to help her lung heal, and she seems to be tolerating it pretty well. With as much as she hates vibrations riding in the car, we …
More details
Things have been crazy here, but we’ll try to give as many details as we have right now. We brought Casey back to the hospital on Thursday because her GI bleeding had returned and her pain was not manageable, even with our greatly increased medications. The only thing that relieves her pain is turning off …
Back in the Hospital
Casey is back in the hospital. We are not sure how long, or what all we will need to do. She is comfortable right now. She had a pretty good night. We expect to talk with the doctors this morning to get a plan in place. As we get more information we will post. We …
Home – For Now
After a very tough week we are finally home. We have a TON of appointments we have to coordinate over the next couple of weeks. Casey was finally able to get some food down and her pain under control (and no more bleeding) enough for them to let us fight the rest of the battle …
Some Progress
Casey had a much more comfortable night (lots of drugs) and we have started her back feeding. The plan is to slowly increase food and decrease what she is getting through IV. We haven’t suctioned any more blood in a while, so at least the acute areas seem to be doing better. Hopefully today we …
Tough Day
Last night and today have been trying. Casey isn’t responding well to her food and pain medications, so we have been working continously with her doctors to find the right balance of everything. Her blood work and xrays still look fine, but she has been very upset, and her heart rate and oxygen levels are …
Scope done
Casey did great today – the only hiccup in the procedure is she lost her first tooth during intubation, but it was already very loose. They found a lot during the scope that we still have to discuss with surgery. The fundoplication from when she was 1 month old has failed and her g-tube placement …
In the hospital
We are at Dell Children’s Hospital – Casey has been admitted due to some bleeding either in her throat or stomach. She has an endoscopy scheduled for 10:30am – they will have to intubate. After we have those results, we will figure out next steps. Surgery sounds likely, but the specifics depend on what they …