Oh crud. We've got clots again. Yesterday afternoon it was just a few small ones in some of his diapers. Then right before bed, I saw a larger one- which was still not that big. Then a few moments ago at 1 am or so I changed him before he overflowed his diaper and there was the biggest one yet (yet just meaning this time around, not compared to before the surgery). I would say it was thumb-sized. So now we'll have to call them in the morning and see what they say. We'll probably do labs to check his hemoglobin; it was 9.1 Thursday noonish; down from where it had been holding around the 10.3 mark. That is not necessarily abnormal though after his procedure. For that matter the clots might not be unexpected either. I say that because no one can say for sure right now if they're a result of the procedure or having urine going through his bladder again. I suspect the doctor will want to see what things look like through the weekend. It could stop today or tomorrow...who knows.
All this means that we will either be postponing our trip home until Monday or altogether. Oh yea, we were planning on flying out of here at 7 this evening and heading for home, then flying back up here on July 1st. We hadn't really told anyone we were doing that for sure hoping we wouldn't jinx it. That didn't work. Anyhow, we may still get to come home for a bit; unfortunately, we just don't know yet.
I'll let everyone know how the day goes.
**updated**
So Clayton woke up and had another larger clot this morning. We spoke to the nurse practitioner who spoke with Dr.La Quaglia, and he gave us the OK to go home. Their hope is that the clots he passed over the past twelve hours or so are just his bladder working itself out in the midst of all the changes. Remember, he hasn't had urine going through his bladder since June 1st. Hopefully they are right. George flew up here and got in around 1 pm, then we scooted off to the hospital for a dressing change for one of Clayton's tubes. Thankfully, as the day progressed, we did not see many clots and the few we did see we're smaller in size. Then it was back to RMH to pack a few things and head home.
Which brings us to: are we coming home and when? YES! We were suppose to fly out of here at 7 pm, but our flight got canceled due to bad weather, so they rescheduled us on a flight tomorrow evening. I won't lie, I didn't mind a bit because I am more comfortable being close to MSKCC while we keep an eye on the clots for another day. If we need something, I like having them close. We'll let you know if we actually get to come home tomorrow! If so, it is only for a week.
On an unrelated note, I spoke with our neighbor at RMH who is from Greece (not our roommates from the hospital though) and she gave me a few pointers. Her son is 14 and they have been doing this for 5 years. They had a couple years of treatment in Greece, and then they have been treated here for two and a half years. During that time they only spent 6 weeks at home! Crazy! Anyhow, the point to this is that one of her biggest pointers was "no sugar". There was a bit of a language barrier in our conversation, but I know I caught that. I have heard about the relationship between neuroblastoma and sugar before, but to hear it from a mother whose child has relapsed- maybe more than once- it really struck me. What have the past five years taught her that made her say that of all things? Maybe that is another one of those things that I need to act on now, not later. No one has stressed it to us yet; so far the main concern has just been keeping weight on him. Regardless, it had me doing some research and I think that after that, our family will be jumping on the organic- paleo diet- sugar free band wagon. There seem to be too many benefits in regards to cancer not to. The fact is we have to change his diet so we might as well make it our lifestyle as a family. We need him to be healthy and he needs us to be healthy too. Just thought I'd share this in case any of our family wants to jump on that band wagon with us...hint, hint...
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