Update: We had an amazing Christmas! Matthew wanted to be ready, so on Tuesday night, he WALKED for the first time in 5 weeks to the Play Room ..... obviously weak and wobbly, but all on his own. His mission?.......so he could pick out his overdue prizes of finding Jack, Child Lifes Elf on a Shelf and turn his prizes into gifts for his family. :) I along with a few of his Nurses were with full on smiles and filled with glee and excitement. Wednesday, the day of surgery to biopsy his lung and replace his double port came. The surgeon, Dr. Guner, said the biopsy went well but that he ended up taking a sample of his lung on the outside because we wasnt comfortable with possibly not keeping him stable by going in and deflating and reflating his lung but believes he got what was needed. This meant no continued incubation and PICU. Yay!!! Matthews port however was not so great. Dr. Guner came out in the midst of the procedure to let us know that it was a mess. Full of goo, puss and if not still with infection, it definitaely was at one point. He then explained that he was not going to be putting in another central line with risks of infecting the new line. Instead, an additional drain was made to allow it to clear and will once clear, go back in. This caused the procedure to take longer than expected but we are happy as it and recovery went better than the last. The rest of the day was a a hussel to get to San Pedro where Matthews brothers were, pick up dinner and back to the hospital to eat all together for Christmas Eve. Thursday, Matthew woke to a mini tree decorated for him, and presents. We didnt bring them all so that he wouldnt tire and we could still have space in his room. Matthew and his brothers were extremely loved this Christmas ...... by many. Oh, the excitement they had was truly priceless. Later Christmas day, his aunt, uncle and cousins came by for a quick visit and deliver a few more presents. Matthew is showing great spirit and often will push himself to participate in visitations. He is in a lot of pain and the surgical spots and drainage tubes make it complicated to assist him physically but it is all being managed well. Most recently, (late last night) we were told that preliminary cultures from his port site have come back with a positive infection. The infection requires him to be moved into a Pressurized room with controlled air??? The nurse told us because the infection that came back positive was Tuberculosis. Tuberculosis!??! Well a strain of Tuberculosis. The Oncologist do not know much about this strain, especially since he came back from his port site but all precautions are being made and taken seriously. Matthews antibiotics were changed and one of the anti-fungal stopped with no answers to our million questions as each person directs us to Infectious Disease but they have not yet come by today ...... this is the latest. We sit and wait. Below are some pictures that I was hoping to have been able to post earlier in the week.
Posted on: Fri, 26 Dec 2014 23:05:46 +0000
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