Two years ago I never thought a doctor's phone call would leave me just as excited as having a baby! Ok, maybe not quite that much, but enough to get me bouncing off the walls!
Earlier today our immunologist called us to inform us that Cole was finally accepted into a study regarding his IL-10 receptors. Since gi brought it up last spring, immunology has been looking and trying to get Cole evaluated by a researcher looking at IL-10. Since this particular study is newer, from what we've been told, it has been a bit of a challenge moving ahead. Either way, after months of waiting, that is behind us, and as soon as the special blood collection tubes arrive here at Children's Hospital we will be forging ahead.
Why did we need to consent to another research study? According to our doctor, CD-16 and Cole's nk deficiency are completely separate issues from his gi issues, which the IL-10 could be related to, thus the need to delve further into this particular sequencing and in a totally different study.
Unlike our last genetic testing which took almost two months for answers, results will be available after two weeks of not only Cole's sample, but mine and Nick's as well. As much as I am bubbling over like a bottle of champagne, I am also anxiously awaiting answers. I can't even explain how incredible it would be to have more information to shape Cole's treatment as well as to help direct our sails. Instead of drifting without a map, we could chart a stronger course towards our goal of keeping Cole healthy and happy.
I know there may not be a final answer in all of this for some time, and for now, while we often feel backed into a corner, left with very few options, new answers may just be around the bend. The work from this study can change where we are, be eye-opening, giving Cole's physicians missing pieces of a puzzle so they can finally see what it is they have been trying to construct. Honestly, I cannot express how hopeful I am for what lies ahead, instead I'll just keep doing the happy dance in the kitchen for today. Just so incredibly excited!
Showing posts with label Children's Hospital. Show all posts
Showing posts with label Children's Hospital. Show all posts
Monday, October 8, 2012
Friday, February 24, 2012
Deep Breathing
Experts say that deep breathing is one of the best exercises for staying calm and relieving stress. Sure, it works, but so does driving down the Thruway with the radio blaring. Which happened to be the best medicine for me Wednesday morning.
It had been a long night with Paige, her fever had continued to spike over 104 even with medicine. Initially when I called the doctor we were told to go to Children's, but she would have to contact them first to let them know we were on our way. Before we could get out the door, the nurse called us back, telling us Children's did not want her there spreading whatever infection she had and that we needed to give the antibiotic time to work. Even though we were not going, we needed to watch her closely, so I settled in the recliner with my book ready for the night shift.
High temperatures are frightening. Even after popping her in tub, her temperature only fell a few tenths of degrees. In between each bout of sweats as the fever broke and before its inevitable rise she would talk in her sleep. This would have been much funnier had I not been so worried about her. The last time it happened, she sat straight up, looked at me and told me she "couldn't write anymore, there was something on her eraser!" Then she proceeded to lay right back down, snuggling Pooh Bear as tight as could be. Not long after, the chills set in, and after the last fresh tub, set of jammies, and bedding for the night at about 4, it seemed she was finally on the mend. Once I knew she was ok, I allowed myself to shut my eyes, hoping for a few hours before the little man called for me.
To say I was looking forward to a nap not long after I awoke the next morning was an understatement! Still, I was pretty happy that after three days she was actually asking to eat. I didn't care what she wanted, I would make anything. After polishing off two plain pink pancakes she scurried off to play with her sister.
Balance was returning to our house when the phone rang. It was our immunologist. I was caught off guard. Shouldn't examining the specimen and running tests take longer? I knew she would be calling, but in my mind I was prepared for a call in the afternoon. Without hesitation, I was informed that due to the biopsy findings the game had changed. The presence of a granuloma in addition to his other labs meant that Cole matched criteria for a disease they were not looking at before.
CGD, or Chronic Granulomatous Disease is now the illness they are considering. Our physician explained that CGD is another rare primary immunodeficiency disease that would require a lifetime of medication and limits to activities as well as a possible bone marrow transplant. Luckily, the test for this disease could be done here in Buffalo. We would need to go to Children's for a test sometime this morning or wait until Monday since the expert would need two consecutive days to work with the live cells. If we went today, we would know by the end of the week. Needless to say, running on adrenaline and caffeine I packed up the baby and off we went.
On my way, my head was just spinning with a million what ifs. The happy chatter from my little man only made my thoughts race faster. How could any of this be? Honestly, in this moment I could feel the anger pumping its way through my veins in a way I have never felt in my life. Maybe it was the lack of sleep over the past week, since it seems I've been able to divert this feeling for some time. Logically I know, CGD may not be what he has, but I still couldn't stop the feeling of fury as I thought of what his future might be if this test comes back as a positive.
My red passion melted quickly with a good song and the giggling drifting through the car from the back seat. I'm convinced he was laughing at my singing ability or lack thereof by the way. The more I thought about it, I realized and understood that I was not angry, just absolutely terrified of what may lie ahead. Not just all the medical stuff, but afraid of the heartbreak that could hit everyone we love. While valid, these are not places I wanted to let my mind to inhabit.
As I arrived at the hospital and held my precious child in my arms I vowed that no matter what I was feeling, each day would be cheerful, not just for Cole, but for the girls and Nick and I as well. We would be optimistic and trust that all of this is happening for a reason. I've even gone back to reminding myself daily not to dwell on what I cannot change, to lessen the risk of being consumed by worry so I am not gasping for breath like a fish out of water. Instead, I will not look too far down the road when I don't have to, just take things one day at a time, one moment at a time, one breath at a time so I can stay in the eye of this storm.
Don't worry, as we wait, I am practicing my deep breathing in between belting out some silly songs as all the kids giggle.
It had been a long night with Paige, her fever had continued to spike over 104 even with medicine. Initially when I called the doctor we were told to go to Children's, but she would have to contact them first to let them know we were on our way. Before we could get out the door, the nurse called us back, telling us Children's did not want her there spreading whatever infection she had and that we needed to give the antibiotic time to work. Even though we were not going, we needed to watch her closely, so I settled in the recliner with my book ready for the night shift.
High temperatures are frightening. Even after popping her in tub, her temperature only fell a few tenths of degrees. In between each bout of sweats as the fever broke and before its inevitable rise she would talk in her sleep. This would have been much funnier had I not been so worried about her. The last time it happened, she sat straight up, looked at me and told me she "couldn't write anymore, there was something on her eraser!" Then she proceeded to lay right back down, snuggling Pooh Bear as tight as could be. Not long after, the chills set in, and after the last fresh tub, set of jammies, and bedding for the night at about 4, it seemed she was finally on the mend. Once I knew she was ok, I allowed myself to shut my eyes, hoping for a few hours before the little man called for me.
To say I was looking forward to a nap not long after I awoke the next morning was an understatement! Still, I was pretty happy that after three days she was actually asking to eat. I didn't care what she wanted, I would make anything. After polishing off two plain pink pancakes she scurried off to play with her sister.
Balance was returning to our house when the phone rang. It was our immunologist. I was caught off guard. Shouldn't examining the specimen and running tests take longer? I knew she would be calling, but in my mind I was prepared for a call in the afternoon. Without hesitation, I was informed that due to the biopsy findings the game had changed. The presence of a granuloma in addition to his other labs meant that Cole matched criteria for a disease they were not looking at before.
CGD, or Chronic Granulomatous Disease is now the illness they are considering. Our physician explained that CGD is another rare primary immunodeficiency disease that would require a lifetime of medication and limits to activities as well as a possible bone marrow transplant. Luckily, the test for this disease could be done here in Buffalo. We would need to go to Children's for a test sometime this morning or wait until Monday since the expert would need two consecutive days to work with the live cells. If we went today, we would know by the end of the week. Needless to say, running on adrenaline and caffeine I packed up the baby and off we went.
On my way, my head was just spinning with a million what ifs. The happy chatter from my little man only made my thoughts race faster. How could any of this be? Honestly, in this moment I could feel the anger pumping its way through my veins in a way I have never felt in my life. Maybe it was the lack of sleep over the past week, since it seems I've been able to divert this feeling for some time. Logically I know, CGD may not be what he has, but I still couldn't stop the feeling of fury as I thought of what his future might be if this test comes back as a positive.
My red passion melted quickly with a good song and the giggling drifting through the car from the back seat. I'm convinced he was laughing at my singing ability or lack thereof by the way. The more I thought about it, I realized and understood that I was not angry, just absolutely terrified of what may lie ahead. Not just all the medical stuff, but afraid of the heartbreak that could hit everyone we love. While valid, these are not places I wanted to let my mind to inhabit.
As I arrived at the hospital and held my precious child in my arms I vowed that no matter what I was feeling, each day would be cheerful, not just for Cole, but for the girls and Nick and I as well. We would be optimistic and trust that all of this is happening for a reason. I've even gone back to reminding myself daily not to dwell on what I cannot change, to lessen the risk of being consumed by worry so I am not gasping for breath like a fish out of water. Instead, I will not look too far down the road when I don't have to, just take things one day at a time, one moment at a time, one breath at a time so I can stay in the eye of this storm.
Don't worry, as we wait, I am practicing my deep breathing in between belting out some silly songs as all the kids giggle.
Thursday, February 16, 2012
Take Two
Today is colonoscopy number two. After two days of prep and a morning without anything I am wishing Cole's OR time was earlier than it is.
At first I thought this time would be easier, especially since he will drink from a cup now and then, but he refused after the first two cups so we had to go back to the syringe. Poor kid is so used to medicine plungers he drinks better from that than a cup! At least when he was thirsty. I hope he's clean enough, after he regurgitated the last of the prep all over the two of us Nick declared his prep done while I whisked the baby to the tub.
Little guy is still sleeping peacefully. I hate to wake him, but he can drink this morning for another half hour and I want him to have something since he refused pretty much everything he could have yesterday. At least the girls were good with not eating near him or attempting to give him anything. Before dinner last night they left the pantry door open so Cole grabbed two sleeves of Ritz crackers, whining as he waddled over to me with them. When he handed them to me I thanked him and he gave me the most puzzled look I have ever seen! At least he can have some today.
Here's hoping today goes smoothly, I will update here briefly if I have a chance while I am at Children's. Once again, I cannot thank all of you enough for your love and support, as our road stretches longer than I would have imagined knowing you are all there brings me calm.
Oh, and for those of you that know about take one, I did remember to pack extra clothes for myself.
At first I thought this time would be easier, especially since he will drink from a cup now and then, but he refused after the first two cups so we had to go back to the syringe. Poor kid is so used to medicine plungers he drinks better from that than a cup! At least when he was thirsty. I hope he's clean enough, after he regurgitated the last of the prep all over the two of us Nick declared his prep done while I whisked the baby to the tub.
Little guy is still sleeping peacefully. I hate to wake him, but he can drink this morning for another half hour and I want him to have something since he refused pretty much everything he could have yesterday. At least the girls were good with not eating near him or attempting to give him anything. Before dinner last night they left the pantry door open so Cole grabbed two sleeves of Ritz crackers, whining as he waddled over to me with them. When he handed them to me I thanked him and he gave me the most puzzled look I have ever seen! At least he can have some today.
Here's hoping today goes smoothly, I will update here briefly if I have a chance while I am at Children's. Once again, I cannot thank all of you enough for your love and support, as our road stretches longer than I would have imagined knowing you are all there brings me calm.
Oh, and for those of you that know about take one, I did remember to pack extra clothes for myself.
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