Posts tagged ‘#skateboarder’

November 2, 2013

Day +156

It is hard to believe, but it has been over five months since Sebby’s BMT. He has enjoyed quite a bit of home life with a few short hospital stays. Mostly, he is battling the CMV virus. His doctors have been switching meds around in an effort to curtail it. Today he underwent another lung biopsy as well as once again enduring a bone marrow biopsy. He hates the lung biopsy more, I think. It will be days of dealing with a drain tube, which is very uncomfortable. But the doctors need to know what type of nodule is in his lung in order to treat it effectively. He initially went in the hospital this week to get infusions to fight the CMV. Preliminary tests show the levels to be reducing. We should have more definite results on Monday. While there, a CT scan showed Sebby to have a lung nodule and pneumonia in one lung. So here we are. These are pretty typical side effects of a bone marrow transplant. They have to be taken seriously and addressed immediately in order to prevent the situation from deteriorating. PCH doctors are good about getting the right diagnosis and the right medicine for the situation. Hopefully, he will be on the appropriate meds before I finish this blog page. Our warrior is still fighting!

Recently, Sebby was able to stand on his skateboard and coast a bit. His friend, Danny Green was hanging out with him and they both thought it would be a good place to start. I think so too!


August 6, 2013

Day 75: Home!

Today was full of joy. Sebby was able to come home! After glancing in each room to see the bed changes, he allowed himself to free fall face-first onto his new Sleep America bed. Flipping over to lay flat and test how the new mattress will work with his lumbar situation, he continued in that position while announcing that he wanted to go eat somewhere (translation: the new bed is going to be great for him!) His auntie Chantel reserved a private room at a nearby restaurant and made him wear a mask. It was the finale to an exit ceremony that took most of the day. See the link on my facebook for the touching goodbye from the hospital staff. WordPress is not working with my .mov file today. . .

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Home health care is coming at 6:00 tonight and his mother is busy lining up around the clock medications and IVs. The rest of us are doing whatever needs to be done. He goes back to the transplant clinic tomorrow and continues with three visits per week. Many of us, and especially Sebby, have been working very hard to get to this point. Saturday the house was cleaned above and beyond hospital standards. I would like to give a very special thank you to Mary and Dara Petruske for their extreme amount of help sterilizing every single item Sebastian owns. You ladies are the best! I now see the value of minimalism décor.

There is much work and caution ahead. Small incidents such as a slight fever can put him back in the hospital. He has to stay away from people, plants, pets and etc. for a year at least. But we can do that because he can do that. It is as I said to him today, “You did it. You did it, Sebby!” It was hard not to cry, but I made it. I am so very, very proud. He has been super brave through many harsh obstacles. His odds of survival were 50%. And he did it!