A full month has passed since my last post. (Those of you with blog addiction are surely aware of that.) So, Jack continues to make great strides. The last month has been very steady and it is truly amazing to see my kidney in action in his body. His muscle tone is significantly greater, he can jump, talk back (thanks again to steroids), and could potentially win a hot dog eating contest for toddlers.
His only medical intervention in the last 30 days has been from our home nurse who has come 3 x's a week to draw blood and change the dressing on his central line. (The central line is high maintenance and often the culprit for an infection but the advantage is that Jack doesn't feel a thing when the nurse draws blood). Since his labs have been so consistent and very favorable we are removing the central line this Friday which is a big milestone! Of course, the downside is that he will have a venal puncture 1 x per week which will dramatically change his relationship with his home care nurse. It's a quick poke to draw blood and Jack is a tough patient because he his veins are very small. Overall, very good news that lab frequency is spreading out and the the central line is coming out. The first thing we will do to celebrate is take a bath and go to the swimming pool (both of which are restricted with a line).
We are currently planning an exit strategy for the feeding tube that Jack has managed to keep in since December '07. He is interested in foods but not so interested in liquids. The kidney requires a certain amount of hydration (+25 oz / day) so the feeding tube acts as an insurance
policy to keep him hydrated as well as administer his meds. We are working with a nutritionist for support and hope to be down with this by September assuming he will take his meds orally. It is not uncommon for us to wake up 3-4 x's an evening to deal with a feeding tube related issue (i.e. kink in the line, tube has come out, leaked, or the pump is finished and the alarm needs to be turned off). This is by far our biggest stress and frustration right now. I remind myself how far we've come thus far and that I'm not the one with the tube in my nose and throat.
Sam + Harry+ Jack+ Gpa Joe(yes, those are my salad spinners)
