I have been wrestling with what to write about Hodges. The poor little thing has had a very, very rough go. The past four days have been so many extreme ups and downs. Several times if it had not been for intense intervention Hodges would have died. Finally yesterday morning, Hodges had to be intubated. It was either that or let him go. Rich and I were at home and Rich's mom was at the hospital so we decided with intubation, to give us more time to assess Hodges and make the best overall decision for him. Before Hodges even was sick the past month we had noticed he was weaker in several different ways. So we knew this sickness was going to be more challenging then any we had ever faced. Our top priority right now is Hodges' quality of life. As Rich and I started to discuss what is best for Hodges long and short term, we right away called Dr. Swoboda. As we brought her up to date on everything and asked her for her opinion, she began to cry and said "I am coming, I want to be there". We never would have expected her to come and to say the least we are grateful and anxious for her arrival. I think Rich and I have a pretty good idea of where Hodges is but to have her who sees SMA children daily come and help us sort out what clinically is going on and likely for Hodges future is such a relief! Im not sure when she is going to arrive for sure, but probably Monday or Tuesday. For now, Hodges is mostly sedated. We have tried to sedate him just as needed so we could see those beautiful blue eyes and have some interaction with him, but mostly he has not tolerated that so we are left with him sedated. He is on a lot of oxygen through the vent and still when moved he is desating pretty fast and when awakened his heart rate is going really high. He has also had a temperature through out most of the day.
I do not think I can even begin to articulate how tough all of this is. I thought going through it once with Jacobsen would prepare me and I would be ready for all the talks we have had today. I was wrong. This is my child. I can not even put into words the anguish our hearts are feeling. I want him here, I want him to continue to be our smiling little boy who has brought so much joy to our lives that I will forever be a different person because of the amazing gift of being his mother. But we also do not want him in pain, and for every day to be such a struggle. We are still praying for a miracle and asking that God guide us every step of the way in making decisions.
I will update as I can. Thank you to everyone who has stopped and prayed for Hodges and our family. Thank you so much for all the messages, texts, and phone calls! We are so grateful for such and amazing support team of friends and family!
Psalm 17:6-7
I call on you, O God, for you will answer me; give ear to me and hear my prayer.
Show the wonder of your great love, you who save by your right hand those who take refuge in you from their foes.
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