Today I was putting Katlyn for a much needed nap when I noticed one of Katlyn's doctors and a nurse at her window looking in. They stood there for a sec and then barged in. It was obvious that I was putting my little angel for a nap, but it was obvious they didn't care. Why they didn't care? They were coming to give us some fantastic news. Katlyn's t-cell function test results came back today and was an all time high of 28,000. YEAH!!!! The doctor told us that we could go back to Canada, we could stay at the Children's Inn, whatever we wanted. So here we are tonight with our little sweetie at the Children's Inn. We are in our glory and Katlyn, although very sleepy, is too.
So now we are faced with a decison of wheather we should stay here until the end of the month when her research blood is drawn, or go back to Canada for two and half weeks and come back. The thing is the government will be sending a special private aircraft to pick Katlyn up, and we don't want to put her in danger by sticking her on a commercial flight so soon afterwards. So we are checking to see if it is possible for the next research blood to be drawn in Canada, as a one time exception. I'm sure we will be able to id that is even an option, but there are rules and we need to find out if this is one of them.
Regardless, right now we are very happy. We have our little girl at the Children's Inn with us, and it feels really great. She had spent two nights here but the doctors felt it was in Katlyn's best interests to stay in the postive pressure room at the hospital because of her numbers. However after the results came back today they felt comfortable allowing her to come here. While Katlyn is here we don't allow her to go in any of the common areas. She is only in our room, which we have thourghouly cleaned from top to bottom. Besides that she goes outside and she will now make daily visits to the clinical centre, across the street.
It's hard to say right now when we will be coming back to Canada. Based on her numbers, she is ready to go now. However, we just want to make sure that first and foremost we put Katlyn's interests first.
She is doing great though. We still do have a long road ahead of us, but Katlyn is getting better and that's the most important thing. When we get back to Canada, Katlyn will be back at the IWK until she her ready clinically and we have a place safe enough for her to live. We have so much work to do, but we will get there.
Thursday, October 11, 2007
Monday, October 8, 2007
Happy Thanksgiving
This weekend has been incredible. Yesterday was the Talladega Nascar race so Johnathan and I got the huge idea that we would clean our room at the Children's Inn from top to bottom and bring Katlyn over. She had a blast. It was so amazing. It was really nice to feel normal for the day. We had no worries really, it was actually pretty easy. As soon as Katlyn came in the room she pulled her socks off and took off, running back and forth. It was funny. She seems to like it here. I also cooked Katlyn's supper for the first time ever. I made chicken, potaoes and vegatbles. I was so nervous. I really think I washed my handss like 50 times. I knew her chicken was done cooking at a certain point, but I still cooked it for a little longer, just to make sure.
It was so nice for us to all be eating supper at the same time. It was so special. When it came time to bring Katlyn back to the hospital we didn't want to very badly. It felt so strange. It almost felt as though we had done something wrong and were only able to visitation with Katlyn. It was not a pleasant feeling.
This morning I discussed the idea of Katlyn spending the night with us at the Children's Inn, and the doctor was in favour of the idea. She said she felt very comfortable with us taking Katlyn and she knew that we were careful enough that she would be safe. So we were allowed to bring Katlyn to the Children's Inn again today.
We didn't have a nice turkey dinner and yes we are still not home, but today was so great. I don't know how I could come close to describing it. Basically we feel a little normal. We feel as though we had some privacy for once and weren't under a microscope all day. It was so nice to have our little girl running around playing and getting into everything. What joy!!!!!!!!
Now she's asleep and we are going to join her shortly. It's so nice to be able to sleep in the room all three of us together for once. A little bit of normalcy goes a long way. We will have to take her back early in the morning to meet with the doctors. We don't know if this will be a regular thing, or just a one shot deal. It's so great though and we know that someday soon, things will be normal. Katlyn is doing very well right now and she is going to get a little better everyday.
Happy Thanksgiving to Everyone.
It was so nice for us to all be eating supper at the same time. It was so special. When it came time to bring Katlyn back to the hospital we didn't want to very badly. It felt so strange. It almost felt as though we had done something wrong and were only able to visitation with Katlyn. It was not a pleasant feeling.
This morning I discussed the idea of Katlyn spending the night with us at the Children's Inn, and the doctor was in favour of the idea. She said she felt very comfortable with us taking Katlyn and she knew that we were careful enough that she would be safe. So we were allowed to bring Katlyn to the Children's Inn again today.
We didn't have a nice turkey dinner and yes we are still not home, but today was so great. I don't know how I could come close to describing it. Basically we feel a little normal. We feel as though we had some privacy for once and weren't under a microscope all day. It was so nice to have our little girl running around playing and getting into everything. What joy!!!!!!!!
Now she's asleep and we are going to join her shortly. It's so nice to be able to sleep in the room all three of us together for once. A little bit of normalcy goes a long way. We will have to take her back early in the morning to meet with the doctors. We don't know if this will be a regular thing, or just a one shot deal. It's so great though and we know that someday soon, things will be normal. Katlyn is doing very well right now and she is going to get a little better everyday.
Happy Thanksgiving to Everyone.
Saturday, October 6, 2007
I know probably a lot of you have been waiting for on an update about if we're back in Canada or not. And for those of you who know we're not, you're waiting to hear why. It's actually rather complicated, but here goes. Katlyn's t-cell proliferation test came back and was 8,000, and she needed to be 10,000 in order to be discharged. We were extremely upset about the decision about not going home. You see, on one hand we have been told that there is a lot of probability of error with such test and they don't even necessarily know what this test means because it's not a commonly done test. On the other hand we have been told that we are unable to leave three times because of this test alone. Because Katlyn's t-cell function was so close to 10,000, we felt it wasn't enough to keep her here. Actually a lot of people were in agreement. Katlyn will not be literally going home. She will still be in isolation at the IWK in Halifax, N.S..
Now here's where it gets tricky. Because the doctors taking care of Katlyn are the ones who set up the protocol and all the guidelines for discharge, officially they have to stand by that. It does make sense. Where would they draw the line. What if the next child was say 7,000. They set those numbers up for a reason and they should stand by them. So we are still at the National Institute of Health. For how long? Who really knows. We know that they would like to keep Katlyn here to monitor her progress for as long as they can. We know that we are going to base our decisions about when we leave on Katlyn and what's best for her. If being here is the safest thing, then we'll have to stay here. Ultimately we would like to get Katlyn out of the hospital altogether. A hospital is not the best environment for an immune compromised child. At this time however, we don't have a safe place set up. Our hands are kind of tied right now. We are looking at the possibility of living with my mother, but we are still unsure if that's the best plan. We need to look at the cost of preparing the house, and if it's at all doable first of all, and if the fund raised dollars are going to be able to cover it. If it's a large costs it's doubtful that they will because there just isn't that much. We have been going at this for over a year now and to tell the truth, it has been a huge financial stress for us. Other than that we might have look at finding an apartment that will be safe enough for Katlyn to live. We have to make the smartest move for Katlyn. We have come to far to make any silly decisions. Besides that we will need to look for a new source of income. We have so much to do before Katlyn will be able to officially go home.
At this time I would like to thank my friend Sandy who is busy right now trying to organize a fundraising even for Katlyn. She seems really busy at it and I'm sure it's going to turn out to be a huge success. She's planning on having a raffle. Also a big thanks goes out to Duane from Duane's furniture in Woodstock, N.B., for donating a very nice wooden rocking chair for the event.
Katlyn is doing very well as usual. She is loving the time she gets exploring the outdoor. Today was a hot day so we waited until this evening before going out and it was great fun. Katlyn ran around with her little flashlights. I think this outing gave Katyln a new perspective on things a bit. Also when we came back I was undressing Katlyn from her dirty clothes and getting her ready for a bath. I asked her if she had fun and she immediately gripped on to me tightly, giving me one of the biggest hugs ever. She just kept saying "thank you, thank you." Then when Johnathan came in she blew some kisses his way again saying "thank you, thank you." It was so cute!!!
So tomorrow is a big day for us because we are going to begin potty training Katlyn. It seems like she's ready and we are able to devote our time 100% right now, so it's seems perfect. Hopefully she won't give us too hard a time. It's hard to say, but I think that a little girl who knows how to call 911 several times and program the hospital bed so that if get out of it the alarm will go off, is definitely smart enough. We love you Katlyn.
Now here's where it gets tricky. Because the doctors taking care of Katlyn are the ones who set up the protocol and all the guidelines for discharge, officially they have to stand by that. It does make sense. Where would they draw the line. What if the next child was say 7,000. They set those numbers up for a reason and they should stand by them. So we are still at the National Institute of Health. For how long? Who really knows. We know that they would like to keep Katlyn here to monitor her progress for as long as they can. We know that we are going to base our decisions about when we leave on Katlyn and what's best for her. If being here is the safest thing, then we'll have to stay here. Ultimately we would like to get Katlyn out of the hospital altogether. A hospital is not the best environment for an immune compromised child. At this time however, we don't have a safe place set up. Our hands are kind of tied right now. We are looking at the possibility of living with my mother, but we are still unsure if that's the best plan. We need to look at the cost of preparing the house, and if it's at all doable first of all, and if the fund raised dollars are going to be able to cover it. If it's a large costs it's doubtful that they will because there just isn't that much. We have been going at this for over a year now and to tell the truth, it has been a huge financial stress for us. Other than that we might have look at finding an apartment that will be safe enough for Katlyn to live. We have to make the smartest move for Katlyn. We have come to far to make any silly decisions. Besides that we will need to look for a new source of income. We have so much to do before Katlyn will be able to officially go home.
At this time I would like to thank my friend Sandy who is busy right now trying to organize a fundraising even for Katlyn. She seems really busy at it and I'm sure it's going to turn out to be a huge success. She's planning on having a raffle. Also a big thanks goes out to Duane from Duane's furniture in Woodstock, N.B., for donating a very nice wooden rocking chair for the event.
Katlyn is doing very well as usual. She is loving the time she gets exploring the outdoor. Today was a hot day so we waited until this evening before going out and it was great fun. Katlyn ran around with her little flashlights. I think this outing gave Katyln a new perspective on things a bit. Also when we came back I was undressing Katlyn from her dirty clothes and getting her ready for a bath. I asked her if she had fun and she immediately gripped on to me tightly, giving me one of the biggest hugs ever. She just kept saying "thank you, thank you." Then when Johnathan came in she blew some kisses his way again saying "thank you, thank you." It was so cute!!!
So tomorrow is a big day for us because we are going to begin potty training Katlyn. It seems like she's ready and we are able to devote our time 100% right now, so it's seems perfect. Hopefully she won't give us too hard a time. It's hard to say, but I think that a little girl who knows how to call 911 several times and program the hospital bed so that if get out of it the alarm will go off, is definitely smart enough. We love you Katlyn.
Wednesday, October 3, 2007
Here's a link of my interview with CBC information this morning in Moncton. Enjoy!
http://www.cbc.ca/informationmorningmoncton/media/kaytlynOct03.ram
http://www.cbc.ca/informationmorningmoncton/media/kaytlynOct03.ram
Monday, October 1, 2007
Day 131 Post Transplant
Today was a pretty wonderful day. Katlyn's neautrophils went up a bit on their own and her lympocytes also increased a bit. She was able to go outside, so of course that is where we spent most of our day. It was an adventure. Katlyn was the most excited I have ever seen her when I told her she could go outside. It seems as though every time we go outdoors, she gets more and more comfortable out there. Today she was all over the place exploring. She was hammering things with her sticks and now has a new found love for rocks. She played and played with rocks forever. She counted them, then counted them again. She scraped them along the walkway, so that she was drawing a little picture. She had so much fun. I think we spent about 5 hours out there today.
Tomorrow is IVIG day and that means it is going to not only prevent Katlyn from going outside, but also keep her very close to her IV pole, restricting her mobility and freedom.
So Wednesday we'll find out what Katlyn's t-cell function is and then we'll go from there. She is doing great though. I really think the gene therapy is working. Someday soon Katlyn is going to be able to lead a normal life.
I would also like to thank everyone that comes on here and reads Katlyn's blog and keeps us in their prayers. Having a sick child is a very stressful and heartbreaking situation to be in. Some days I find I have lows, whereas other days I have this happy buzz. It really is a rollar coaster we are riding on. But thank you to everyone who does continue to supprt us through this very difficult time. We really do need all of the help and support we can get, and we do appreciate every bit of it.
Thank you all.
Tomorrow is IVIG day and that means it is going to not only prevent Katlyn from going outside, but also keep her very close to her IV pole, restricting her mobility and freedom.
So Wednesday we'll find out what Katlyn's t-cell function is and then we'll go from there. She is doing great though. I really think the gene therapy is working. Someday soon Katlyn is going to be able to lead a normal life.
I would also like to thank everyone that comes on here and reads Katlyn's blog and keeps us in their prayers. Having a sick child is a very stressful and heartbreaking situation to be in. Some days I find I have lows, whereas other days I have this happy buzz. It really is a rollar coaster we are riding on. But thank you to everyone who does continue to supprt us through this very difficult time. We really do need all of the help and support we can get, and we do appreciate every bit of it.
Thank you all.
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