Thursday morning I was kind of dreading the meeting with Maia's team of doctors and nurses. Mainly because this past week has not been very good for lil Miss Maia. It's been a hard week for her... she had a exploratory lapartomy on Saturday to find out where and why blood was coming out of her dialysis catheter, which put her dialysis on hold to give her tummy some time to recover. So she's been swollen and puffy the last several days. Then Wednesday the pediatric surgeon had to access a vein in her neck so that a central line (special IV that connects to a large vein close to the heart) could be put in. Maia's PICC line had come out a couple of days ago and she really had no other place for any sort of IV that has multiple ports to carry larger volumes of fluid for a longer period of time. That's twice in one week Maia has had to go down to the operating room for something! So I know these things will be discussed among other things. As always, we're hoping for the best!
This week's meeting ended up better than I expected... it was short, and a little sweeter than last week's. I think because they all know that we understand how seriously sick Maia is, there was no need to keep emphasizing that fact. We discussed this past week's events, including the exploratory laparotomy to stop the bleeding in her abdomen. The surgeon was able find the source of the bleeding and stop it right away, and this was the best result they could ask for. We also talked about having to get access for a central line. This needed to be done surgically since the other pathways from her arms and legs had already been used. This operation was also successful, and they believe that they'll be able to use this central line for a long time, as long as she needs it. Maia also started the peritoneal dialysis again. Her cycles last for 1 hour and she is receiving about half the fluids as before, mainly because they don't want to put too much pressure on her abdomen and the incision, which is still healing. Also, her kidneys continue to make urine, and the volume is slowly starting to increase, along with help from some Lasix, a diuretic. Unfortunately, these procedures are setbacks in her recovery. Although Maia seems to be able to tolerate anything and everything that's been done to her, I'm not sure how that all plays into her overall prognosis. I do know one thing, Maia continues to fight every day! Overall, everyone is pleased to see Maia tolerate all these procedures and take baby steps in the right direction. Eventually, all these baby steps will add up. The analogy the doctor used today was to picture Maia's recovery as flights of stairs going up to the top of a tall building. As she continues taking steps upward, her setbacks take her back down an entire floor. So some of the progress that she's made is wiped away and she must start over again. But when you look at Maia, she doesn't seem to mind. She finds the strength to continue on, which impresses everyone, including us! It seems like every time the doctors are unsure of how she'll recover from each setback, she finds the strength to show them all that she's a fighter that refuses to back down!
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| Maia with her otter friend. She looks annoyed that I'm taking her pic again! |
This week's meeting ended up better than I expected... it was short, and a little sweeter than last week's. I think because they all know that we understand how seriously sick Maia is, there was no need to keep emphasizing that fact. We discussed this past week's events, including the exploratory laparotomy to stop the bleeding in her abdomen. The surgeon was able find the source of the bleeding and stop it right away, and this was the best result they could ask for. We also talked about having to get access for a central line. This needed to be done surgically since the other pathways from her arms and legs had already been used. This operation was also successful, and they believe that they'll be able to use this central line for a long time, as long as she needs it. Maia also started the peritoneal dialysis again. Her cycles last for 1 hour and she is receiving about half the fluids as before, mainly because they don't want to put too much pressure on her abdomen and the incision, which is still healing. Also, her kidneys continue to make urine, and the volume is slowly starting to increase, along with help from some Lasix, a diuretic. Unfortunately, these procedures are setbacks in her recovery. Although Maia seems to be able to tolerate anything and everything that's been done to her, I'm not sure how that all plays into her overall prognosis. I do know one thing, Maia continues to fight every day! Overall, everyone is pleased to see Maia tolerate all these procedures and take baby steps in the right direction. Eventually, all these baby steps will add up. The analogy the doctor used today was to picture Maia's recovery as flights of stairs going up to the top of a tall building. As she continues taking steps upward, her setbacks take her back down an entire floor. So some of the progress that she's made is wiped away and she must start over again. But when you look at Maia, she doesn't seem to mind. She finds the strength to continue on, which impresses everyone, including us! It seems like every time the doctors are unsure of how she'll recover from each setback, she finds the strength to show them all that she's a fighter that refuses to back down!
Go Maia!! Praying for your sweet baby girl!
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