Welcome back to Billy's Page #29 {there have been  This counter provided for free from HTMLcounter.com!  visits to this page}

     Thurs. 25 Dec. 2003  ( 727-898-7451 Room # 276 )

    7:30 pm...Welcome back to Billy's Page, I hope you all are having a wonderful Christmas. Billy was admitted to All Childrens Hospital this morning around 10:00. He has had sever pain in his leg for a few days now, and this morning his temp. rose to 102°. Billy was started on antibiotics , and blood cultures were done to see where the infection is , and or what is causing his fever. Billy will also be getting another transfusion of red blood as his Hemoglobin was quite low @ 7.6 . Billy did have some time this morning with everyone to open some gift's , but became too ill. Alicia and I rushed him to the Hospital , as per his Dr's orders , and I cried the whole way there, and tried to hide it from Billy. Billy doesn't like to see "Daddy" cry. It is getting harder and harder each time Billy has to be admitted to the Hospital.
    I stayed with Billy all day as Alicia entertained her Family at home . We had a wonderful dinner planned and although Billy and I missed the Family gathering , Everyone came to the Hospital afterwards and brought us our dinner as well !! They are all there as I update Billy's Page , and Alicia has joined them as well . Uncle Fern said he would stay with Billy tonight and give Alicia a much needed rest . The "gang" will all be leaving tomorrow, and once again we'll go back to "missing them" *wink*.

    Billy will have to remain in the Hospital for at least 4 days , or until the cause of his fever is found . Thank you all for your continued support, thoughts, and Prayers.
     Fri. 26 Dec 2003
    Hello , and welcome back to Billy's Page. We hope everyone had a wonderful Christmas , surrounded by those you Love. It is just about 7pm (est) , I just returned home from the Hospital where I spent the day with Billy. Alicia is there with him now , and will spend the night with him as she usually does . Billy's fever has been around 102° all day , and he is on heavy doses of antibiotics. Billy's surgeon along with Billy's Hemo/Onc Dr. came in to talk with me this afternoon and informed me that Billy's fever is most likely caused by bleeding that is going on around the prosthesis in his leg , and due to his low platelet counts the bleeding is slow to stop. There is a very prominent infection due to this bleeding , thus the antibiotics. Billy's leg is swollen , and VERY hot to the touch. We were informed that if the antibiotics do not calm the infection , Billy's leg will have to be opened up to clean the area's around the knee and femur. This is not very good new's considering we are so close to his BMT. We were also informed that Billy will be kept in the Hospital for 7-14 days because of the severity of this infection.

    Ama, Apa, Juani , Guaydia, Jorge, and Fernando all came to see Billy at the Hospital before they left for Home. Billy was so happy that they had all come for Christmas, as was Alicia and I . The emotions were high as they all said good-bye and left the room. I want to take a moment to thank everyone (collectively) for the many cards and gifts Billy has received over the past few weeks, and Alicia and I would like to thank you ALL once again, for your continued thoughts, and Prayers. Your strength is Our strength , Thank you. Please continue to Pray for Billy.
     Sun. 28 Dec 2003
    Hello , and welcome back to Billy's Page. Billy has had a rough couple of days after being admitted to ACH on Christmas day. Billy remains on heavy doses of antibiotics (vancomycin & cefepime). Billy still can't move his leg, but it seems as though his fever is coming under control. Today , and most of yesterday his temp. has been around 99°-100°. The swelling has gone down some as well , and the Dr's are somewhat optimistic that the antibiotics will do the job. Billy's WBC has gone down from 4.56 on Friday , to 1.84 today. This also indicates that the antibiotics are working. Billy's platelets are on the decline once again from 48. on Friday to 28. today. Although his Hemoglobin count is in the low end @ 11.9, it is still above his normal range. RBC are @ 3.68 , up from 2.48 on Thursday. Today Billy's ANC was at 1200 which is in a fairly "good" range to help with this infection.

    Billy has been very upset the past few day's, and has been down on himself. He is worried (understandably so) about what may need to be done if the infection persists. Also , Billy is so close to his BMT that anything that may effect his condition negatively, will also have an effect on his BMT negatively. I went "ballistic" yesterday when Billy was moved to a room with another child . Not because he was moved , but because he was put in a room with a child who had the flu. Billy has been treated in ACH for 16 months , and the staff should have known better. Billy CAN NOT risk the chance of getting more sick than he already is, and the flu would devastate him physically. Billy was moved BACK to his own room after my very VOCAL objection, Dr. B. reprimanded the staff , and assured Alicia and I that Billy's care will NOT be compromised again. We would Love for Billy to have a room mate with who he can talk with, and play with rather than be alone with no one, other than Alicia and myself. It is sometimes unbearable and lonely for Billy , especially for a 14 day Hospital stay in a room by himself. Sure , Billy has his play station, gameboy, and a TV in his room; and Alicia and or I are with him 24/7, it's just not enough. BUT............. the health of these children are the most important thing to consider, not room availability.
     Mon. 29 Dec 2003  77° ( 727-898-7451 Room # 260 B )
    Welcome back to Billy's Page. Billy's fever has been kept under control the past few days, and it seems as though the antibiotics are doing their job(fingers crossed). His platelet counts are now down to 23. from 48. on Christmas. His WBC are also down which is good in a sense that it shows his infection is being suppressed. Yes, Billy was moved again................No, not to a room with a "Flu" *wink*. He is in with another Boy his age who has T cell leukemia. We are glad Billy has a room mate , but Billy did have a very un-pleasant day. Billy has been thinking too much about what "might" happen to him in the "negative" sense. He had an emotional moment today as he was having a conversation with a "child Life" staff member. The Child Life team at ACH are there for the children to talk to when they need an outlet of sorts. They get the kids together for group sessions, and play time gatherings. Billy was feeling depressed this afternoon, and had alot on his mind and kind of "over flowed" with emotion at one point. Billy is not one to keep things bottled up inside, but he knows he is in a "Big Time" battle for his Life.

    Mati , the transplant coordinator at ACH contacted Alicia and informed us that the 25 year old (male) match is in fact a 8/10 match, and the 27 year old (female) is also an 8/10 not a 6/6. This is great news, now we have to hope that at least one of these donor's will go through with the process. Billy's BMT is now tentatively scheduled for the end of January , or the beginning of February due to his present situation.

    Billy's surgeon, Dr. Letson, came to see him again this evening and said he was happy to see that Billy's fever is down , and that the swelling in his leg is also down. He said that alot has gone on inside his leg over the past 5 days and that it will take some time for him to get the muscles to overcome it. His leg will be weak for some time.
     Tues. 30 Dec 2003  75°
    Hello, and welcome back to Billy's Page. Billy had a fairly good day today. His platelet count continues to drop again, and is at 22., Hemoglobin is down to 10.8, WBC @ 2.35, RBC @ 3.38. We were told that Billy will have to remain on antibiotics for another 14 days..........................BUT, he will be able to go home tomorrow and continue at home !! Billy's fever is under control , and no new bacteria are growing in the tests that were done so, Dr.B said he see's no reason why Billy can't finish at home. Of course Billy is all for it, and we get to celebrate New Years together, at home. Billy will most likely need another transfusion of platelets by the end of the week, unless we can get it done before he leaves the Hospital tomorrow,*wink*.

    Billy's Friend Jared, from next door, came to visit with him today and they battled it out with Madden 2004 !! Billy was sooooooooooooo glad to see him.

    I want to send out a "Special Hello" to Taylor "Tay" Lee. Thank you for your entry in Billy's Guest book, and Billy is really looking forward to the magazines !! Also Thank you to Lori & Trevor for the card and Gift *wink*.
     Wed. 31 Dec 2003  77°  Home !
    Hello and welcome back to Billy's Page. Billy was released to us this afternoon to continue his antibiotics at home. Billy had a very difficult time prior to his release from the Hospital though. For those of you who are new to Billy's Page , Billy has what is called a "medi-port" in his upper right chest. This device is implanted under the skin , and connected to a main artery. It is the size of a quarter (coin) and about 1/4 of an inch thick. When Billy needs to receive medicines, and or drugs to treat his cancer, this medi-port needs to be accessed. This is done by placing a numbing cream on his skin directly on the area of the medi-port to numb the skin. A needle about 3/4 to 1 inch in length with a catheter attached is inserted through his skin into the medi-port. This process can be VERY painful at times , and VERY uncomfortable to say the least. Billy's medi-port was accessed when he was admitted on Christmas day, today marked the limit (7 days) that this catheter can be inserted, and would need to be replaced. This required the needle to be removed, and another new one be inserted that will last for the next 7 days Billy will be treated at Home by Alicia and myself. During the process of replacing the needle with a new one the nurse performing the task was unable to find the diaphragm of the medi-port while inserting the needle. Yes, they had to try 4 times to find the access point of the medi-port. Stick this long curved needle into Billy's chest 4 times before they got it right. Billy was "SCREAMING" that he wanted his "regular" nurse to do it right. They got a hold of the nurse who usually accesses his medi-port, and she came right away to help. She actually cried when she arrived and saw the state Billy was in. Billy's chest was "black and blue" from all the failed attempts, and Chris got it right the very 1st time (as usual). Billy's leg surgery wasn't as painful as the experience he had today, Alicia commented that she has NEVER seen Billy in this state of mind, and in so much agony. I was at home with the home health aid nurse getting instructions on how we were to administer the next 7 days of antibiotics. We have a pump used to infuse the antibiotics via IV. We were taught long ago how to set up and administer Billy's meds. if he were to be infused at home, so it was all clear to us when the nurse went over the procedure. Alicia and I will give Billy his scheduled antibiotics every 8 hours for the next 7 days. Each infusion takes about 2 hours to complete at which time we will flush his catheter with saline, and add heprin to avoid clotting between doses. So....................we get to play Dr. for the next week *wink*, this way Billy can be home with us, instead of in the Hospital for the next week or so.

    We had a nice dinner at home this evening, and we are awaiting the "ball to drop" to ring in what we hope will be a Year that brings a cure to Our Son, Your Friend, Billy. Please continue to channel your thoughts and Prayers to Billy, and know that your strength is his strength, your Hope is Our Hope.
    Click Click for photo to see a photo of Billy taken about an hour ago !
     Fri. 2 Jan. 2004  79°
    Hello, and welcome back to Billy's Page. Alicia, Billy, and I welcomed in 2004 as we gave each other a great big hug, and shared a tear or two *wink*. Although Billy's leg is still very weak, he manages to keep it in a comfortable position. He can walk with the use of his crutches, but only very short distances. His fever is all but gone, and he is in very good spirits. Alicia and I are doing a Great job of administering Billy's antibiotics every 8 hours (6am, 2pm, 10pm). Billy's home care nurse, Gene, did a great job in teaching us all we need to know. He was very Professional, and personable, Billy took a liking to him right away,Thank you Gene ! Uncle Juani and Aunte Guaydia are coming up from Miami this afternoon, and will be staying the weekend with us, another surprise for Billy *wink*.
     Sun. 4 Jan. 2004  80°   "GO PACKERS"
    Hello, and welcome back to Billy's Page. Uncle Juani & Aunte Guaydia just left, and are heading back to Miami. We all had a wonderful time, and Billy really enjoyed their visit. Although Billy spent most of the time hooked up to the pump, he still managed some quality gaming ! We still have 4 more days of antibiotics to go, and so far Billy has handled Dr. Bill and Dr. Alicia with no major difficulties,*wink*.

    Tomorrow will be back to school (tele-class's) for Billy, which should ease some of the boredom of the past few weeks. Billy is also scheduled to have his blood counts checked on Wed., lets hope for good counts (fingers crossed).

     Thank you Barb and Tim (NJ) for requesting the Special Masses for Healing for Billy under the Special patronage of Our Lady of Lourdes celebrated at the Shrine of Our Lady of Lourdes in France, and at the National Shrine of Our lady of the Snows in Belleville, Illinois. We received your Beautiful card today, Thank you.
    Please click on "next" below to continue your Journey *wink*


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