This past week has been a lot different than the first couple of weeks we were down here. I think we've finally found a good balance for now. Monday, they added a new diuretic to her regimine. I think it is working. She has started getting rid of fluid on her own with this diuretic. Man does it make a difference in how she feels and acts when she is more comfortable. She has been full of smile and very chatty this past week. It has really been great to finally have some positive results from our stay down here. They have tweeked little stuff through the week, but they didnt do much because we don't want to rock the boat.
Her labs on Thursday did get us a few more PELD points so she is now up to 35. They also broadened tha age range of donor that she is able to accept. With these 2 things we are really hopeful that we will get a liver soon. All the doctors and nurses and of course I have been very pleased with how well she was doing this week. I even heard mention of possibly being able to go home this coming week. Last week, it was just the opposite. We were just resigned to being here until transplant happens so it is good to hear that they are reconsidering.
Sunday, September 25, 2011
Our latest staycation - week 1 & 2
We are back down at PCMC again. So far this has been our longest stay and there is a possibility that we will remain here until we get a liver transplant.
The kids started school on the 6th, and then I got word from the Liver Clinic coordinator that they felt that I needed to bring Alivia down. She just was struggling with eating enough and her abdomin was growing quite quickly. I was sad to have to leave the kids on their 1st day of school, but we do what we gotta do.
Wednesday, they did a paracenticis to remove some fluid from her abdomin. They removed about 320 mls. She did pretty good for a couple of days, but then it started coming back on. They also decided that she just needed some additional help nutritionally so they placed a PICC line on Wednesday as well. They then put her on TPN, an IV nutrient. Since she had a paracenticis, they put her on a couple of antibiotics just in case there was any infection in the fluid. The cultures came back negative so they took her off the one antibiotic after a couple of days. That night she ended up getting a fever so there was something else going on. They put her back on that antibiotic and the fever went a way. Turns out there was infection in the PICC, which as long as she was on the antibiotic she was fine because it was treating the PICC line. On Tuesday, the pulled the PICC because there was a possible backup offer and they didn't want the infected PICC in place just in case the offer went through. It did not though.
During this time, we were on several different combination of fluid to try to find a good balance to try to keep the fluid off. It just was not working so they decided to do another paracenticis Tuesday evening. They did it right in the room and I was able to stay and watch. it was quite interesting. They drew almost 500 mls of fluid off this time. Unfortunately, it only lasted about a day before it started filling up again.
She had another fever again after they took her off the antibiotic again so they had to put her back on it. Saturday, the did one more paracenticis. I got to participate in this one. I was in charge of administering the sweeties (sugar water) during the procedure. Every time she started fussing, I got to squirt some in her mouth. It wasn't a big job, but hey, I got to participate.
My husband and kids were able to come down and visit over the weekend. Alivia was so happy to get to see them. I was too. It has been hard being away from them for so long.
The kids started school on the 6th, and then I got word from the Liver Clinic coordinator that they felt that I needed to bring Alivia down. She just was struggling with eating enough and her abdomin was growing quite quickly. I was sad to have to leave the kids on their 1st day of school, but we do what we gotta do.
Wednesday, they did a paracenticis to remove some fluid from her abdomin. They removed about 320 mls. She did pretty good for a couple of days, but then it started coming back on. They also decided that she just needed some additional help nutritionally so they placed a PICC line on Wednesday as well. They then put her on TPN, an IV nutrient. Since she had a paracenticis, they put her on a couple of antibiotics just in case there was any infection in the fluid. The cultures came back negative so they took her off the one antibiotic after a couple of days. That night she ended up getting a fever so there was something else going on. They put her back on that antibiotic and the fever went a way. Turns out there was infection in the PICC, which as long as she was on the antibiotic she was fine because it was treating the PICC line. On Tuesday, the pulled the PICC because there was a possible backup offer and they didn't want the infected PICC in place just in case the offer went through. It did not though.
During this time, we were on several different combination of fluid to try to find a good balance to try to keep the fluid off. It just was not working so they decided to do another paracenticis Tuesday evening. They did it right in the room and I was able to stay and watch. it was quite interesting. They drew almost 500 mls of fluid off this time. Unfortunately, it only lasted about a day before it started filling up again.
She had another fever again after they took her off the antibiotic again so they had to put her back on it. Saturday, the did one more paracenticis. I got to participate in this one. I was in charge of administering the sweeties (sugar water) during the procedure. Every time she started fussing, I got to squirt some in her mouth. It wasn't a big job, but hey, I got to participate.
My husband and kids were able to come down and visit over the weekend. Alivia was so happy to get to see them. I was too. It has been hard being away from them for so long.
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