Care Conference #4

Monday morning we were eagerly anticipating the day ahead of us. It was the day of our scheduled conference that we had been looking forward to so much, because we would be discussing taking Lex home and getting any questions we had answered. We began to dream about what it would be like to have Lex at home again, caring for him by ourselves and getting back on the road that could slightly resemble "normal" if you glanced at it and didn't notice the seizures and other health issues that come along with the sweet package that is Lex. The thought of going home initially scared me to death but the more I thought of it the more excited I got. Especially since we had made the decision to move back to our hometown (at least temporarily). All of the extra support would be fantastic, and to be away from the medical staff seemed like it would be a dream come true! So, with all of this in mind, I'm sure you can imagine our frustration when the neurologist scheduled for this week came in to tell us that the care conference would not be happening that day. Not only would it not be that day, but we also should not be thinking of going home, at least not alone. If we were to go home we would need at least part-time support of a nurse, however home didn't seem to even be a realistic option to him. Instead he shared that he would prefer us to go to a low care facility. A place with medical staff at hand.Not a hospital, but not home either. Again, I initially was extremely upset. I let my emotions take me over and became so upset that I wasn't going to be able to care for my own child. I was mad-why did they think that a nurse could do a better job caring for my son than me? After all, Joe Mike and I can make his formula for the Ketogenic diet and feed him through his g-tube, we can check his ketones and do his heel sticks and we are the ones who administer the blow-by oxygen when he has a seizure..so 'why do we need a nurse' I thought to myself. I asked that same question today at the care conference, and I'll tell you the answer I got in a few. Today we found out (AGAIN) that Lex's prognosis based on the symptoms he has when compared to others with similiar symptoms (seizures with apnea) does not look good. The neurologist today said he didn't expect him to live past five years old and most definitely not ten. Ouch, that hurt. Bad. I wanted to cry, it wasn't the first time I had been told-not even the second but it doesn't matter how many times you hear it, it always is painful. Fortunately I remembered, before any tears formed, the wise advice I have been given to never put my hope in the doctors-always in God, ALWAYS!! When I take this attitude I remember that "with God all things are possible". And my Lex may possibly be a miracle, with God. Wait-scratch that-my Lex IS a miracle.
So, I guess you want to know what was decided?! Well, it seems that we will be having a nurse at home, potentially 24 hours a day. We will be given a detailed description and guideline of in which situations Lex should be brought back to the hospital and when his emergency meds should be administered. So back to the question that I posed to the doctors. When I asked them "why do we need a nurse?" the palliative care lady kindly looked at me and said "because you will eventually need to shower", the resident on the neurology team added "and go to the bathroom" and the resident pediatrician said "and SLEEP". It made me sad, but they were right. No matter how much help I have at home (family is awesome) it is going to be hard, especially at first as we're adjusting. But the neurologist made the best point of all. He said that we need to just be parents. Lex needs for us to just be parents. He will have someone to do all of the other things for him so that we don't have to be his doctor or nurse or therapist. Right you are Dr. B, right you are. So, after all I am actually very relieved and feeling at peace with this conclusion. It looks like if things continue as they are that we will be out of here sometime next week and on our way home to meet the newest addition to Lex's medical team. I have prayed continuously for peace always for Joe Mike and I over all things happening and I know you all have been praying for all of us also. I want to say so much more than just "thank you" to all of you, you're prayers are definitely heard and God does put them into effect, especially when it comes to giving us peace. God is doing something great in our lives and though it is hard and it's sad I am genuinely excited about it when I stop and think. The neurologist said today "Because of Lex your lives are going to be extremely difficult, there is going to be a lot of suffering, pain and struggle". It may not have been the nicest way to say it to us, but he was right. It will be so worth it though...Praise God that this isn't all that there is!! I am so thankful for my Savior and that I get to spend eternity with him and Lex will too..
"Yet what we suffer now is nothing compared to the glory he will reveal to us later."
~Romans 8:18