Thursday, September 25, 2014
Day +55 we have been discharged from the IWK. Katlyn is doing extremely well for starters. And because of how careful we are with keeping her safe we have been allowed to go home and isolate her at home. She is not permitted to have any visitors at all until she is at least +100 days. This is incredible! ! Katlyns primary physicians at the IWK are extremely careful so to let her go home is quite reassuring.
Day +53 Katlyn is doing extremely well. Her rash is almost gone completely now and she has been feeling pretty good. She was discharged from Saint Justines on Thursday and we were blessed enough to be able to spend the weekend at home!! It was amazing but extremely hard to leave. Katlyn spent a lot of time sleeping but she looks much healthier than when we first got her home. Each day she slept until noon, with wakeups for medicine. She also spent hours each day in the bathtub. So now marks the next chapter in this journey. We arrived at the IWK today. It's unclear how long Katlyn will spend here, but we just want to make sure we do what's best for Katlyn.
Monday, September 15, 2014
So this morning when Katlyn's neutrophils reached 6000, I was a little nervous. There I was standing at the nurses station questioning the jump. I mean, to me it was unbelievable. And then to my amazement the nurses started to sing and clap along to this song. This might be my favorite song now. The nurses at Saint Justines are amazing!!!
Day +45 Katlyn is doing amazing. She has been in great spirits and tries very very hard everyday to get stronger. We barely have to say much about the drinking. We just have to bring it to her and she has no problem drinking between 2.5-3 litres a day. Her magnesium level is starting to come up a bit, which is great news since we give Katlyn 750 mg of magnesium a day, and its very rough on her stomach. We are working on her sodium as well. Since she is drinking so much, she flushes too much salt so we have been putting extra salt on everything we can. Today Katlyn's neutrophils are at 6000! Which is incredible. This number really took us by surprise. Wow! Her platelets remain stable but her hemoglobin continues to fall. So far she has only needed 2 transfusions, but she is close to needing one again. The gvh rash seems to be under control. In addition to the cream we started her on prednisone orally and it seems to be doing the trick. We have been taking Katlyn outside for little outings as often as she will let us. She tires easily, but today I am bribing her with a Klondike chocolate chip ice cream sandwich.
Day +43 Katlyn seems to be a little more like her old self everyday. She is joking more and laughing more. Her little body is very tired because she has been through a lot, but she is a little firecracker. Katlyns counts and everything is going well. She is starting to eat like a champ again and she seems to drink 2.5 litres with little difficulty. Her new immune system seems to be functioning, and because of its foreign surrounding it has caused a little graft versus host disease or gvhd. This is where the new immune system is trying to fight against Katlyn. She developed a stage 1 gvh skin rash on Wednesday. We started to apply some cream to it yesterday and hopefully it starts to get better soon. There are no signs that the gvhd is anywhere else, and I pray to God this resolves quickly and we never have to deal with gvhd again. Please continue to pray.
Day +39 So I am going to start this post of with the best news of the day!!! Katlyn's chimerism results indicate that her cells are 100% donor. This is amazing. This is confirmation that Katlyn has successfully engrafted. Wow. what a great day. In other news Katlyn was disconnected from IV hydration yesterday morning and she is still off. Yesterday she drank more that 2.5 litres for the day. What a little champ. Her sodium is a little low so we have been putting extra salt everywhere to make up for it. As you flush your body, you also flush sodium which is not good. She is low but just below the normal level. Her magnesium also is a little low, so she will start to take magnesium supplements three times a day instead of two. She is doing amazing!! What a great day.
Day +37 Katlyn seems happy and very well today. She is smiling and eating and drinking with no pressure. The test to see if she is hydrated enough is usually preformed first thing in the morning after Katlyn hasn't drank all night, so this may not be a true reading. The doctor is ordering one to be done in the am and another in the afternoon to see if it makes a difference. Meanwhile our goal is to get Katlyn to drink 2.5 litres. She is able to come and go today from hospital until 8pm so we are going to take her for a drive for a bit to get away from the hospital.
Day +36 Katlyn is doing very well medically. Everything is going in the right direction. At this point the only thing that is holding her in the hospital is the hydration. It is so important for her to drink so much because of all the medications she is on. If her kidneys are not properly flushed than it can cause kidney damage.
Day + 32 So Katlyn is starting to come around again. She is not longer dehydrated but she is still hooked up to her IV. She continues to drink like a champ. Its not the fact that she wasn't drinking enough that made her dehydrated. It's because the terrible nausea made her vomit and she lost too much fluid and wasn't able to catch up. However, the nausea seems to have stopped bothering her as much. We just need to give Katlyn some Zofran regularly, but she isn't really needing anything else. Whereas before, we couldn't give her enough. On Friday night and Saturday morning we had decided to try Ativan to see if it would help Katlyn with the nausea. She had a terrible reaction to the medicine. It caused her to feel quite depressed. So after a day of crying and feeling terrible, she was pretty tuckered out. No more Ativan for Katlyn ever!!! Her weight is starting come back up, which is great. She has lost quite a bit of weight. We expected this, but its nice to see her asking for food again, rather than having to pressure her to eat. She actual woke up around 4:30 am today and asked me I she could have a snack. Of course I quickly got her her snack and she went back to bed. Today her neutrophils are at 800. They do fluctuate, which we are all too familiar with. However, they have not gone below 500. Katlyn's platelets are pretty stable now, but today her hemoglobin is low and she is going to need a transfusion. Katlyn is doing extremely well. She might not go home as soon as we initially thought, but she will go home when it is time for her to go home, and it is safe. Thank you all for your continued positive thoughts and prayers.
Day +30 I hate to post any bad news but Katlyn needs prayers. She is dehydrated today and had to be hooked up to iv. She has a lot of nausea and it's interfering with her being able to eat properly and now, because of vomiting yesterday, she is dehydrated. Please pray.