Chase Started Soccer This Weekend
Chase had a full weekend, starting with a visit to the zoo on Friday afternoon, for the first time in a couple of months (this used to be one of his favorite past times). He didn’t make the long walk like he normally would, but rode in a wagon and at least got out in the sunshine and fresh air. More importantly, he actually got out and played soccer on Saturday. He really didn’t want to at first and resisted the idea. The more we talked through it with him, we understood that his apprehension was related to the fear that his port access would be removed which meant he’d have to get the needle again after the game. Once we explained to him that he was going to have to do this anyway, for sanitary reasons, and that he might as well enjoy a bit of freedom, he agreed and had a great time. He actually did fairly well for his first soccer game ever, blocked several shots and scored a goal (despite the fact that he’s no where near as fast as usual and he gets winded pretty easily). Nevertheless, he had a lot of fun socializing with some Cranbrook classmates and that was the most important thing so that he can get comfortable with easing into school.
We’re planning to start this week with a two-hour school schedule and hopefully get to a complete ½ day by the end of the week. Although he still resists at first when being dropped off for school, his teachers say he’s fine within minutes and seems to be enjoying himself. Hopefully, more familiarity with others through his soccer experience will make him even more comfortable. He agreed to continue on the team and he’s actually already asking when basketball will start again – another great sign!
The biggest accomplishment of the weekend was the fact that his needle change for the catheter access was by far the smoothest yet. Auntie Cathy (the Nurse Practitioner) came down again to visit over the weekend and take care of this duty so that Chase could get over his apprehension of the needle. As usual, he put up some resistance at first, but this time we hardly heard a peep during the re-insertion. We’re praying that one more “easy” experience with someone he knows / trusts and Chase’s apprehensions will subside enough that we can actually have a visiting nurse take care of the catheter needles going forward. That will be a huge milestone and the point at which our choice of this type of catheter will pay off – we’re almost there.
Despite the positive progress, there were several concerns over the weekend with Chase that we’re going to have to monitor very closely. First of all, Carol noticed a slight nose-bleed after the soccer game (this is not been a common occurrence with him, so any unusual behavior raises concern). Secondly, he complained of a headache when he woke up in the middle of the night on Saturday – the first in several weeks, since his recovery from the surgery (although he seemed to be over this on Sun morning when he woke up). He also mentioned a stomach ache on Sun morning, followed by a slight bout with diarrhea and later had cramps in his right leg. We’re praying that some of these symptoms were just due to the fact that he had more physical activity over the weekend than he’s had in a long while. After being massaged a bit on his upper thigh Sun night, his pain seemed to subside, so we’re thinking it was just a sore muscle, but it’s hard to know for sure.
Based upon these concerns, we chose not to increase Chase’s dose of ANP over the weekend and we’ll wait to see how he’s feeling tomorrow to determine whether to go up to 300 ml. We’re so close to his ultimate target dose, that we don’t think it’s a huge hurry and would prefer to make sure everything’s fine before taking another step. If we confirm that he’s ok tomorrow morning, he’ll increase again by 10 ml per day throughout this coming week and should probably max out at around 350 ml. We’re really looking forward to getting to stability with his dosage so that we can get over any concern about his ability to tolerate the treatments (although it’s really been smooth sailing for the most part thus far). This will also make things a lot easier with programming the pump, changing the IV bags, etc. since we can develop a detailed plan based upon his ongoing daily dosage.
Overall, we’re still feeling that the progress Chase is making is tremendous and we believe we’re on the right track for his full recovery. He’s very close to achieving a fairly stable routine, which will be a huge accomplishment / milestone for the whole family. Thanks to all for the ongoing prayers and support. They mean the world to us through this process – although we’re trying to keep a positive “front”, behind the scenes, it’s quite stressful staying on top of all aspects of his treatment plan, physical and social well-being, etc, in addition to our own mental and emotional stability. It’s been extremely trying at times and feels like a roller-coaster ride. This is a big challenge for our faith and we’re trying to use all the affirmations and prayers we can to stay focused on the best result for Chase and our whole family. Thanks again for keeping us all in your prayers!
Love,
John & Carol Sammut
Chase & Barbara Ann
We’re planning to start this week with a two-hour school schedule and hopefully get to a complete ½ day by the end of the week. Although he still resists at first when being dropped off for school, his teachers say he’s fine within minutes and seems to be enjoying himself. Hopefully, more familiarity with others through his soccer experience will make him even more comfortable. He agreed to continue on the team and he’s actually already asking when basketball will start again – another great sign!
The biggest accomplishment of the weekend was the fact that his needle change for the catheter access was by far the smoothest yet. Auntie Cathy (the Nurse Practitioner) came down again to visit over the weekend and take care of this duty so that Chase could get over his apprehension of the needle. As usual, he put up some resistance at first, but this time we hardly heard a peep during the re-insertion. We’re praying that one more “easy” experience with someone he knows / trusts and Chase’s apprehensions will subside enough that we can actually have a visiting nurse take care of the catheter needles going forward. That will be a huge milestone and the point at which our choice of this type of catheter will pay off – we’re almost there.
Despite the positive progress, there were several concerns over the weekend with Chase that we’re going to have to monitor very closely. First of all, Carol noticed a slight nose-bleed after the soccer game (this is not been a common occurrence with him, so any unusual behavior raises concern). Secondly, he complained of a headache when he woke up in the middle of the night on Saturday – the first in several weeks, since his recovery from the surgery (although he seemed to be over this on Sun morning when he woke up). He also mentioned a stomach ache on Sun morning, followed by a slight bout with diarrhea and later had cramps in his right leg. We’re praying that some of these symptoms were just due to the fact that he had more physical activity over the weekend than he’s had in a long while. After being massaged a bit on his upper thigh Sun night, his pain seemed to subside, so we’re thinking it was just a sore muscle, but it’s hard to know for sure.
Based upon these concerns, we chose not to increase Chase’s dose of ANP over the weekend and we’ll wait to see how he’s feeling tomorrow to determine whether to go up to 300 ml. We’re so close to his ultimate target dose, that we don’t think it’s a huge hurry and would prefer to make sure everything’s fine before taking another step. If we confirm that he’s ok tomorrow morning, he’ll increase again by 10 ml per day throughout this coming week and should probably max out at around 350 ml. We’re really looking forward to getting to stability with his dosage so that we can get over any concern about his ability to tolerate the treatments (although it’s really been smooth sailing for the most part thus far). This will also make things a lot easier with programming the pump, changing the IV bags, etc. since we can develop a detailed plan based upon his ongoing daily dosage.
Overall, we’re still feeling that the progress Chase is making is tremendous and we believe we’re on the right track for his full recovery. He’s very close to achieving a fairly stable routine, which will be a huge accomplishment / milestone for the whole family. Thanks to all for the ongoing prayers and support. They mean the world to us through this process – although we’re trying to keep a positive “front”, behind the scenes, it’s quite stressful staying on top of all aspects of his treatment plan, physical and social well-being, etc, in addition to our own mental and emotional stability. It’s been extremely trying at times and feels like a roller-coaster ride. This is a big challenge for our faith and we’re trying to use all the affirmations and prayers we can to stay focused on the best result for Chase and our whole family. Thanks again for keeping us all in your prayers!
Love,
John & Carol Sammut
Chase & Barbara Ann
posted by John & Carol Sammut at 7:56 PM
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