Long day...

We had a pretty rough day today. We had to be at the hospital at 7:45 this morning for Maggie's upper GI and small bowel follow through. We were late due to the breathing treatment Maggie had to endure first. The last time Maggie had this procedure she was pretty traumatized for awhile. It didn't go much better today, maybe even worse.

With this cough/cold thing Maggie has, she is very quick to cough and then throw up. She did this when they were trying to shove the "chocolate milk" down her throat. She was continually coughing up, throwing up, and the technicians would tell her to calm down. When they were finished with the first part, they were kind enough to give us our own room so that I could shove the rest of the liquid down her throat. Maggie's gag reflux was going high gear and ended up projecting all that had been drank up onto everything, my face, hair, tv, couch, clothes, & coat. The way it was going, I was very worried.

We managed to get about half of the drink down through a syringe. She was so tired from waking up earlier and crying, that she half moaned with her eyes closed. She eventually wouldn't let me do anymore and we let it at that, while Maggie slept for the remainder of our 45 minute wait.

Throughout our waiting time, we were able to also do physical therapy with Nancy. Ever since Maggie got sick with pneumonia, she has lost the confidence to walk. She can do it and will do so when she feels good, but she insists upon holding our hand for everything. We have also had very unsuccessful therapy appointments where Maggie will even tell you that she "cries" at therapy. I'm hoping things will turn around soon and that once she is feeling 100%, she will gain the courage to walk again.

The procedure ended up taking about 4 hours, which is quite ridiculous. I even asked the doctor if it wasn't a bit backwards that a child with chronic diarrhea takes so long to pass things through her intestines? The doctor thought the same thing and would never know that we were dealing with chronic diarrhea, but instead constipation. She said her preliminary analysis shows that Maggie's intestines have indeed healed some. They are not back to looking like a healthy person's intestines, but they are not as smooth as glass either. We will hear more about that in the next few days from her GI specialist, as well as whether he might think about weaning her off TPN. I don't see this diarrhea problem ending until she is all done with treatment, so I guess it's how well can we maintain it?

After being at the hospital for 4 1/2 hours, we then ventured over to the hemoc clinic to check Maggie's oxygen saturation. We have not noticed any improvements in the last few days and we both discussed this morning that we would probably be admitted today. Her sats did not improve, as we had thought. She is still running around 87-88% (normal is 94-100%). Dr. French decided not to change anything (although we are going to 2 breathing treatments a day, versus 3), and he is referring us to a pulmonologist. They are going to look into seeing what might be causing this, as it is obvious that Maggie is not sick. This sends a little wave of worry through me as we go to another specialist. I'm hoping that Maggie's breathing problem isn't a long term issue and that it can resolve itself quickly.

So, now, this leaves us at home (surprising to both of us) and waiting for an answer or healing. Maggie fell asleep with a pen in her hand on the way home from the hospital and has been sleeping for 3 hours now. If that doesn't give you a little idea of how our day went.

Please pray for Maggie. Pray for her airways to heal, for her respiratory rate to lower, her oxygen saturation to be within the normal range, and to be cured of cancer. Please also continue to pray for the other children fighting this disease, especially baby Lincoln.