Day 3

Some day when I look back, I will laugh at how today went. However, at this time it is not quite funny yet. We went to the clinic this morning and fairly immediately Maggie had a blow out on a blanket on the floor. No big deal, it happens quite frequently for us, so I cleaned it up.

I ordered breakfast for Maggie, though she was still on her tube feed, I wanted to get some things just in case. Yesterday Maggie had cran-grape juice for the first time and downed it like she was dying of thirst. Today I decided to order her some of the juice and some milk as well. After Maggie had about half a glass, she ended up throwing up. It wasn't too bad and I managed to clean it up by myself- remade the bed, changed Maggie's clothes, wiped up the floor etc. Not more than the other half of glass of juice later, I was in the process of changing another poopy diaper of Maggie's when she began to throw up. This time it was very forceful and I was unable to do it all myself. While calling for the nurse outside the door, I tried to calm a crying Maggie, and then after a sneeze, out came the feeding tube. It didn't come out entirely so I started shoving it back down her nose and into her throat, all the while Maggie crying and throwing up.

It was such a mess and the only way to calm her was to hold her naked little body while the nurse wiped up the vomit from her back and head. While holding her I felt the tiniest bit of warm and sure enough, she had urinated on me. A minute or two later out came diarrhea all over me and the floor. It was truly a comedy of errors. We had such a wonderful nurse who while I held Maggie, she cleaned me up, Maggie up, and the floor. I then managed to put outfit number 3 on her.

After settling Maggie down, we layed down to feed and go to sleep. Being that the nurse is going in and out of the room, construction is occurring on the floor below, and beeping machines are continually going off, Maggie ended up unable to sleep. As we sat up I noticed that Maggie's dress was all wet. When I tried to figure out if her diaper had leaked, I noticed that her feeding tube had opened up and all of her stomach contents were slowly leaking onto the bed and Maggie. So, I taped up her tubing and cleaned her up once again with outfit number 4.

Throughout the next several hours we managed to urinate on the bed 2 more times and on me through a leaky diaper. I eventually called Andy who was working at home and asked him to come bring more diapers and clothes for the both of us. It was a very overwhelming day.

Now, onto Maggie's results. They have found blood in Maggie's urine 2 days now, which means that the Cytoxan might be harming her bladder. It could also be related to the bladder infection Maggie has, but because they aren't sure exactly what it is, they are going to play it safe and give Maggie extra boluses of Mesna, the medicine that coats and protects the bladder. For the next 3 days Maggie will receive constant IV fluids and Mesna boluses versus 4 hours of Mesna. This means that we are carrying two backpacks for Maggie now as she is continuously hooked up to two different types of IV liquids.

Maggie's urine cultures came back that she has the bacteria E-Coli. Therefore they continued the antibiotic, Rocephin today until tomorrow and will then send Maggie home on an oral medicine, most likely Amoxicillin. Hopefully all of this will then take care of her bladder infection.

Maggie has had many dirty diapers today and because of it her diaper area has become red and irritated. It is hurting her when we wipe her. This is not abnormal as skin breakdown in the diaper area is one of the most common things while on chemotherapy, but on the other hand, it has been a source of infections for many children. We will pay very special attention to this area and try to keep cream on it to heal it. However, please pray that her skin will recover quickly from the rash.

I'm not sure that you all wanted to read the days events, but for Andy and me, this blog is also our journal and sometimes we use it to look back on to see when certain things happened and what we might expect in the future since we are on many of the same medicines throughout Maggie's treatment. We also hope to read this one day and remember what our life was like during the most difficult time of our lives. Our other plan is to one day share with Maggie all that she accomplished. We pray that she will not remember any of what she is currently going through, but we would like her to be able to share her story with others one day when she is older. So, if things appear graphic, mundane, or you question why we might post something, it is because of the above.

We do appreciate each of you following along with us throughout our journey. It is comforting to know that we have a support system that spans the country. And it is all the more comforting to know that there are millions of prayers going up for Maggie daily for her complete healing. Thank you for those prayers.