Wednesday morning Karlee was still a little lethargic, but after lunch she seems to perk up a little. Wednesday afternoon Ryley and Dad drove up around 1pm. We found Karlee and Mom in the Edward's Sunshine room playing Bingo. Karlee was having a great time with her dauber, but was still pretty tired and was definitely lacking energy. Kelly from Child Life took Ryley in the other room and got him set up making a crown while the Bingo was going on. Karlee ended up winning 2 games and getting a ballerina Barbie and a Littlest Pet Shop set. Ryley got to play for one of the other kids who was recently diagnosed and was going to get his central line put in.
After Bingo we went back to the room to let Karlee rest and to get another dose of antibiotics. Once that was done it was supper time and we once again managed to be in the unit on pizza night. Since Karlee was feeling pretty good we got to eat in the play room and chat with other parents. Dad always enjoys hearing that we are not alone and there are other parents who have gone through this and other parents who are going through it. It seems like there is always at least one little tidbit of advice in every conversation. Shortly after pizza they discharged us and we headed home.
Thursday was a normal day around here. Ryley had his first day of school and is enjoying grade 2 better than grade 1 already. His teacher is really nice and he seems to have a good class so far. Mom did her bus run and took Karlee without incident. Karlee was a little tired after doing the bus run and spent the rest of the day laying on the couch relaxing. Thursday night Dad had a Beaver leader meeting while the rest of the family stayed home and went to bed.
Friday around lunch time we noticed that Karlee was even more lethargic then she had been and she was starting to get warm. Dad and Ryley monitored her temperature while Mom did her bus run. When Mom got back we decided it was probably time to call the clinic and talk to a primary care nurse. JoJo was on holidays so we spoke to one of the other nurses and after they conferred with Dr. Singh they decided that we should probably come up and see what was going on. So once again we loaded the car up with everything we would need to have Mom and Karlee stay the night and started the long drive, in rush hour, to the Children's Hospital.
When we got there they directed us to the unit as they were getting ready to close down the clinic for the day (and the weekend). Of course by the time we got there her fever had again gone down. They did a relatively quick CBC using her port and before long they had decided that we could go home since Karlee was on oral antibiotics and her counts were good. Karlee really wanted to stop at McDonald's on the way home. She had been telling all the nurses that she wasn't going home when they discharged us; she was going to McDonald's. We stopped at the Glenmore Landing McDonald's so we could sit outside and try and minimize Karlee's exposure to other people and specifically other people's germs.
Saturday we did a bunch of cleaning and work around the house and yard. Karlee had a little bit of a fever in the morning, but it come down and we thought we were out of the woods. Again in the afternoon her fever started to go up again and she started to develop a little diarrhea. This time we called the hospital and had Dr. Singh paged. He called us right back and talked about everything that had been happening with Karlee all day. He decided we should come up and get a dose of IV antibiotics and then we could go home. We left home just after 6 and dropped Ryley off at Grandma's for a little entertaining.
We got to the hospital right around 7pm; right at shift change. We saw the doctor very quickly and she reiterated Dr. Singh's plan after examining her. The nurse came in around 8 to access her port and draw some blood for a CBC and a culture. They accessed her port fine, but it would not return any blood. At this point we were a little concerned as Karlee's port had always functioned normally and had never caused any issues. They assured us that this was not unusual and re-accessing it normally resolved the issue. They had another nurse come in and access her, but we still had the same problem. They had one more nurse try and then a couple nurses tried adjusting it to see if they could get it working. They did get a tiny amount of blood back so they knew they had the correct spot. The port would let them put saline and meds in, but wouldn't allow anything out. Finally they decided that the port was not going to work tonight. They called for the lab to come down and take blood from an axillary point (a needle in her arm). Karlee was not overly excited about this after being poked 3 times in her port, but was once again a trooper and let them take the blood. Rather quickly we got the results back and her counts were still good. They gave her the antibiotics and fluids through her port. Around 11:30pm they let us go home with Karlee's port still accessed. She had to come back Sunday afternoon for another dose of antibiotics and to see if her port had started working.
Sunday morning Dad and Ryley went to the wave pool for a little swim. Ryley enjoyed himself as always and got to burn off a little steam. Carlynn offered to take Ryley Sunday afternoon while we went back to the hospital so he got to have a play date with Christian.
When we got back to the hospital they still couldn't draw any blood from her port. They did a great job of getting her antibiotics into her in a very short time frame. We are hoping the IV antibiotics with put a stop to the diarrhea that is still occurring from the oral ones. They put some TPA into her port to help dissolve a clot if there was one. This seemed to be the most likely issue so they started down that path. We were out of the hospital within 2 hours today. We have to go back tomorrow to see if we can get the port working again.
If the TPA doesn't work they will probably have to take an x-ray and see if they can see where the issue is. There is also the option of putting some dye in the port and following its path to see if there are any blockages or issues. Hopefully we will be able to get this resolved tomorrow so she finish her last procedures and chemotherapy injections of the induction phase on Tuesday.
We are planning on heading back to the hospital earlier on Monday so we can miss the majority of the traffic for the Labour Day Classic. Go Stamps Go!!!
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