I'm going stir CRaZY! I am glad to be back at the Ronald to visit and I am glad to be back with our wonderful NB team at MSKCC, but being cooped up avoiding the cold weather and the flu is making me nuts. The weather is too cold to stroll around with Clayton and we aren't going to museums or anything because we don't want him in crowds of people where he is at risk of getting the flu...again. Two reasons: one, last time he had the flu he had a fiberal seizure; two, getting the flu would likely postpone scans yet again. We don't want that!
As for this past week, it wasn't wasted. We did something we needed to do that we could not do at home. It gave us valuable information that the doctors need to help treat Clayton's respiratory episodes and to help us prevent them from occurring in the future. So it was necessary time spent even though it was unexpected. We now will be treating Clayton for asthma and can more confidently say that one doctor's suspicion seems correct that while most kids grow out of croup, Clayton's back could be causing him to grow into it. It was a very important thing to rule out other culprits though. A number of doctors suspected tracheomalaysia because it can be common with certain gene mutations. The day before, one of the doctors at MSKCC was just saying he felt that would probably be what they would find. Meanwhile, our awesome primary Dr. Kushner, commented how "George Clayton Ladd always scares him", but he had two images of him in his head: one where he was running the other way in the clinic to go play and the other where the doctors were scared to death of how 3f8 might affect his breathing and yet he sailed right through it. He said Clayton scared him, but never failed to surprise him. That's my baby-man! I know it might sound weird for a doctor to say a patient scares him, but Clayton is a very complicated child; his medical issues are complex and involve a lot of balancing. Even in the world of pediatric cancer, Clayton is not a typical patient. Thank God for the amazing doctors we have found.
So obviously, we got to see the NB team and got answers to some outstanding questions and we got to see Dr. La Quaglia as well...and we drew blood for HAMA and didn't have to pay to ship it for a change. So we did get stuff accomplished this past week.
Back to Thursday though, things were scary after the procedure, but we made it. Ironically, the procedure that told us what was going on in his airway also irritated it. Therefore, Clayton sounded horse and croup-like all afternoon; which of course meant I was a wreck and worried that it might become so irritated he couldn't breathe. Thank God it didn't. Meanwhile, the weekend is allowing time for Clayton's airway to recoup after the procedure before his sedation for scans this coming week. Fear has had me checking Clayton's stats though every night. We have an O2 stat reader I use and then I check his temperature and be sure to give him his "puffs". I'm trying to get him use to taking his "puffs" every day. I desperately hope this inhaler works as a preventative. I did find some other parents though whose older children suffer from recurrent croup. For these kids their croup episodes are triggered by viral, asthma or allergy related issues. So even though Clayton's immune system is stronger this far put from chemo, because of his resistors health it is critical we guard him against any viral infections. So we are still on germ patrol! These parents also all suggested seeing an allergist to identify any particular allergy that might trigger croup as well as getting rid of carpet in our house (eventually). So lots of tips and things to help us going forward. At least I know we aren't alone dealing with this severe recurrent croup. Sometimes it amazes me though that one child can be given so many challenges; and yet I know there are some children with even more challenges than Clayton. It's hard to think about...
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