Wednesday, January 23, 2008

1-23-08

Our latest update continues with good news for Joseph. He had his second biopsy yesterday and the result is that there is no rejection happening. We are very excited about that. He also has his anti-rejection meds just about set to the levels they want him to be on. This is a major step to being able to come home. The only big thing left to address for him is that he has a tube draining fluid from his abdomen and it doesn't seem to want to stop. The doctors are looking at ways to aggressively treat this problem. Today they started a new medication and gave him some IV albumin (to help with the protein deficiency in his body). They are hoping to be able to try clamping off the tube for a couple of days just to see what his body does. We are hopeful that this will be resolved soon and Joseph will be able to come home. He is in better spirits than over the weekend but he is still pretty homesick. However, he has gotten really good at bossing the nurses around and telling them what to do and how to do it. We are hoping that this weekend they will also let him out of his room to walk around and get some exercise. If they get the anti-rejection meds at the right point this will happen and this will help his attitude also.

Something else that we have learned about is a way to email Joseph. He will not get it directly and it takes about a day to get the message to him but if you go to Primary Children's website ( http://intermountainhealthcare.org/xp/public/primary/ ) there is a link to email a patient. He would really love to hear from everyone, especially his friends. You can also email him at his own email address stickboyjoe@hotmail.com but he can only check that if the COW(computer on wheels) is in his room and that varies depending upon which patients want it. He has had it the last two days so his turn is about over for a while. They only have one COW at Primary Childrens and several patients who are interested in it.

I think that about sums up what is happening on the hospital front. We appreciate all the love and support and prayers from friends and family. This is an amazing but very difficult journey for our family and you make a huge difference in our lives.

Love, Wendy

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