Recently I received a phone call from Dr. Lynch (Ryder's new Doctor). This was not out of the ordinary. She calls me every Tuesday/Newsday to let me know how Ryder's brain scan looked from the day before. This then allows me to relay the info back to Beth Anne in a loving hubandly manner. The news though was not what we were looking to hear. Ryder's ventricles have increased in size again. His doctors' only assumption is that since he's growing so much (6lbs 9.4oz/huge) his body is producing more fluid and therefore, requires an increasing amount to be drawn from his VAD. That being said, they also think that the best option now is to not wait any longer, but to move forward with the next surgery.
This surgery will take place on Monday the 26th and will be at Cooks with all the same great doctors and nurses. (We are so thankful Sarah can be with him again!) The goal this time will be to remove the temporary VAD and implant a permanent shunt (see below) that's permanent and will be permanently in his body and will permanently replace the natural function in his brain that absorbs/drains spinal fluid for him, permanently (Please feel the weight of the word permanent. Feel it yet? Beth Anne and I feel it too).
Though this is a huge deal in our world, to the doctors it is not. They are confident in Ryder's progress thus far (they know he can handle it), and they are confident in what they can do for him. Once completed, the next step in the process will be to get Ryder recovered, eating entirely on his own (no tube) and then home to his cool new room.
So, please join us in prayer. Pray all the things that the Holy Spirit leads you to pray. A special request I ask for Beth Anne and me is prayer for faith. Its becoming increasingly difficult to push on. We know we have to though. We have begun to realize that God must be being glorified more in our struggle to press on than He would have been through healing Ryder without these surgeries. Please pray that we will be refreshed and that we will be strong parents for our sweet little boy. We love you all.
Cute picture of Beth Anne and Ryder! We are praying everyday.
ReplyDeleteI know I have said it before..but I know this is scary and not what you had planned. Each day drags on in the hospital and you feel like you will never get home and be "normal". Even though, yes, this is "permanent" this time, worries, fears, and exhaustion will not be. God willing, there will be a time down the road where this will still be a vivid, life-changing memory, but it will start to be more and more distant. You will never forget about the "permanent" patches that God provided through medicine and doctors, but in our case, seeing a normal, healthy, sweet, energetic, fun-loving, imaginative, smart 3-year old makes you ever more thankful for those "permanent" patches- whether a shunt, or for us, all of the "permanent" chest and back scars, the "permanent" stitches in her heart, or the "permanent" metal wires used to close her breastbone (she will set off metal detectors for life and it gives a weird x-ray :) ).
ReplyDeleteI know you know this- but you are not alone. I pray for peace, for wisdom, for perserverance. God has given Ryder his parents for a reason- and this time will forever be one of your testimonies of God's grace.
Blessings- Laura
Sweet Ryder, we love you so much big guy! Henry put a little something in the mail to help you feel better. He kept saying "This is for Baby Ryyyyyder!"
ReplyDeleteBA &Jerm, we love you guys too and are praying that you'll be given comfort and peace throughout this whole thing they call parenthood. We miss you guys and will see you in a few months.