Wednesday, October 26, 2011

Ryder Johnson's Recent Adventure...

Care Conference:
UPDATE: I will give a better update tomorrow, I am super tired and need to go to lay down on my chair that turns into a "bed" for the 11th night in a row! We had our care conference today with all the teams of drs. We have decided to go a lymphatic mapping test and that will be tomorrow at 9am. They have NEVER done the test on a 10 week old before. They reassured us that it IS safe, they are just unsure of wether or not they can get good images. The test involves injecting a VERY small amount of radioactive dye in-between his toes to see what his lymphatic system looks like. The test can take up to 6 hours. Please pray that we can get the images we need from the test and that the test shows us something that can be FIXED and that nothing is missing in his lymphatic system. Tomorrow is going to be a LONG day. Thanks for all the support and I will keep updating tomorrow!

Lymphatic Mapping:
UPDATE: Sorry it has been a few days. Yesterday was pretty rough and I didn't feel like updating, sorry! SO yesterday our day started at 9am. We went over to OHSU to the basement, yes the basement, to the Nuclear Medicine department. There Ryder had a very long 7 hour test done. It started with injecting a small amount of radioactive dye between his toes and then having pictures taken ever 15 minutes to see where it traveled to. Well after 7 hours the results were not so good. THe dye NEVER LEFT HIS FEET. This could mean a few things, 1. He has no lymphatic channels in his lower legs, or 2. He has very small lymphatic channels in his lower legs that move VERY slowly. We are most likely going to repeat the test in a few years when he is bigger. SO not much information was given from that test. There is discussion now about doing the same test but injecting the dye in between his fingers to see the upper lymphatic system. We haven't decided anything about that yet.
He has been having daily xrays on his chest to watch for fluid accumulation. Today the xray looked better than yesterday's xray which is good. The hope is that the rate that the fluid is accumulating will be slower than the rate in which his body reabsorbs the fluid. I pray that with this new diet change that the fluid accumulation will decrease. Only time will tell.
We are beyond ready to go home and live a normal life again. Who knows how much longer we will be here, it could be a week or weeks we are unsure. It is all dependent upon how Ryder does over the next few days. We don't aways understand why Gods plan is the way it is and why he does what he does but we have to trust he will take care of everything. We have to have faith that he will help us understand and except his plan. God is good and he has shown us multiple times since we have been in the hospital that he is here and he hears our Prayers. So please, continue to pray! We thank you for all the love, support, and prayers. :) We love you all!!!
-The Johnson's

We are finally HOME! After two VERY long weeks we got to sleep in our own bed. I am so happy :) We feel so blessed that we are home as a family right now. We are still unsure if the fluid will continue to accumulate or not but for now it is a waiting game. We are continuing to pray and put or trust in God. We hope you will do the same. Monday we have an appt with our pediatrician, xray and bloodwork. I am NOT looking forward to blood work, I hate seeing my baby in pain. But we have to do it to keep him healthy! Last night was his first night in his crib. He did great, woke up at 2, 6, and 9:30... Yes we got to sleep in till 9:30am! I will continue to update because our journey is not over. Thank for you all the love!

1 comment:

  1. I'm so glad to hear that Ryder is doing well enough to go home. I can't imagine how hard this must be on YOU. As a mom, there's nothing worse that seeing your child hurting and not being able to do anything. If you ever need to vent or want to chat, feel free to get in touch. :-) I will be continuing to pray for you guys and hope he continues to do great!