Don't worry, nothing too serious, but just wanted to give you an update. Dominic has continued to have issues with his sodium levels which is frustrating to be sure, we are trying to figure out how much to be feeding him now that he has a g-tube. He got to the point where his sodium levels dropped dangerously low and he was becoming dehydrated. To rectify the problem we have added more fluids and also have tested his sodium levels more often (this requires getting blood from the veins in his head since they are not succeeding in his arms and legs, poor baby). We are hoping to get that all under control before I take him home. The most stressful issue right now is that the weaning off of the narcotics is not going too well resulting in hours, and I do mean hours , of him screaming and again, being inconsolable. He hardly sleeps and again, I cannot console him, nobody can. The nurses will take him for a time, but they end up bringing him back again, you can tell it wears on them too. Last night I just lay with him and prayed while he screamed, trying to offer it up, I am not doing too well with that lately, I am tired. I am trying to figure out how we as a family will take care of him when he is home. This weaning process is going to have to go a lot slower than I imagined and I am not sure how the children, or how Mark and I will handle the stress. He will need a lot of around the clock care when he is home with his pic line (I am getting trained in on how to work with that) and his feeding/sodium levels. I guess I am feeling a bit overwhelmed about it all.
I have a plane ticket home on Monday evening and then we will have appointments at Children's the next morning to make sure he is stable. If he is not stable he will need to be admitted, at least we will be close to home.
Again, I am desperately missing the baby I once knew. I know I shouldn't "go there" emotionally and that if I look at the big picture I can see the surgery had to be done, but if I could live in an imaginary world I never would have handed off my baby to them, I would have kept him exactly the way he was. The day we handed him off to them for his surgery I thought I would faint, my legs were like two wet noodles and so weak. I was so afraid that we would lose the child we knew, I was so afraid that somehow, with what they would do to the brain, that it would damage it somehow or drastically change his personality. I am still hopeful that after Dominic is fully weaned off of the meds that he may come back completely, but I worry about how the children will handle this huge change. There is definitely a sense of mourning already for the children because his face has changed, but to not have his sweet personality there is just so difficult. I ask for prayers for our family as we all go through this transition. Can you little children especially pray that we can get the icky medicine out of Dominic so he can be happy again? You are his little prayer army and I know God hears your prayers.
I was struck by the meditation for the year of faith today. It spoke about David and his attitude towards suffering, something to learn from for sure.
"Refusing his bodyguard' request for revenge, David gladly accepts rocks and insults as just punishments from God. What dependence on the Lord! Whether in good times or bad, whether appearing as the most active of agents or passive of penitents, David interprets each moment as an opportunity to accept everything from God in faith as a priceless gift.
Fr. Lawrence Donohoo, Magnificat Year of Faith
As always, thank you for the prayers!