Saturday, June 14, 2014

A Glimmer of Hope

Alisha and I have cried a lot today. It is an awful feeling to know that your son will die, but to be unable to hold him, make him laugh, or explain to him (or yourself) why this is all happening. We have alternated between sobbing uncontrollably to speaking very openly and candidly about his condition. There is still a glimmer of hope, but as of now it is just a twinkle.

The good signs are that since the last blog post, Roscoe has been more tolerant of touch than he was yesterday. His oxygen came back up to the low 90's and aside from one large drop down to 10 which lasted 7-8 minutes, he has been stable. His heart rate stayed high (160-170) for most of the day because he was on albuterol (which is used for asthma) to expand his breathing system. A side effect of albuterol is an increased heart rate.

Alisha and I had a very hard discussion about whether we wanted to turn off his paralytic drugs. On one hand, the paralytic drugs were keeping him immobilized to minimize the chance of triggering his pulmonary hypertension. On the other hand, if he is going to go, then we want to be able to say goodbye to him face to face, with his eyes looking knowingly back into ours. We had a hard time making the decision, but we finally settled on turning off the paralytics. I went downstairs to inform the doctors. The doctors had told me that once we headed down this road, we wouldn't go back and re-paralyze him. If Roscoe didn't tolerate it, then that would be the end.

When I got to the room, I didn't find the doctor, but I talked to one of his regular nurses (Rena). Before I could tell her what we had decided, she told me that she didn't think Roscoe was ready. She told us that when Roscoe was ready, he would let us know. The fact that his oxygen was doing better and that he recovered (albeit very slowly) after suctioning the mucus from his lungs told her that he still had fight left in him. God was watching.

I didn't tell the doctor what we had decided, and so now having doubts I went outside to tell Alisha. We said that we wished we didn't have to make a decision like this about our son. We figured that we'd really regret it if we did pull the trigger, and then wondered if he would have lived on. We went and got lunch, then came back to our room to eat it. We prayed sorrowfully.

Then the room phone rang a few minutes later. It was the doctor that I had missed earlier. The doctor said that he didn't know what we had decided about the paralytics, but he had made the decision to start weaning Roscoe off of them. We never had to make the decision.

The doctor said that it was a combination of factors, good and bad, which led him to his conclusion. The bad signs were that Roscoe had developed a bedsore on the back of his head and had stopped receiving feedings. The good signs were that Roscoe's oxygenation had stayed high for the past several hours and that he was seeming more tolerant of being touched. I dont think it was a coincidence that this happened, since this blog has been viewed thousands of times today and people all over the world have prayed unanimously in support of Roscoe.

The doctor restarted feedings and reduced the paralytics by 40%. When I went to see Roscoe 30 minutes ago, he tolerated some adjustments and let me hold his hand (still lifeless). I even saw his shoulder twitch a few times and his tongue move once in his mouth, as a sign that his nerve endings were returning to function. The doctor also discontinued the albuterol treatments every two hours, so Roscoe's heart rate came back down to the 120-130 range. It will undoubtedly climb again, but I was happy to see such numbers.

Alisha and I will be staying here at the hospital overnight again, hopefully posting more good news. The situation is still very terrifying, because if Roscoe's cold is subsiding he still needs to recover from surgeries, painkillers, pulmonary hypertension flare ups, and any damage that all of this has done to his heart or brain.

We are at a loss of words for what to say to all of you for your words and prayers of support, and we are at a loss of what to say to God for what we hope is a response. Roscoe is still very much in danger and may not survive, but we have a glimmer of hope.


  1. He had to make a similar decision about His Son, with no one to call on to save Him. So, He understands what you're going through and He knows your strength and faith, and your love for your son. We all love you and we're praying, praying, praying...

  2. We'll take a twinkle!
    We are continuing to pray. We are so glad that God removed such a hard decision from you. Even if you had to make the decision, I have no doubt that it was backed with prayers and tears and you should have no regrets.
    You are wonderful parents.
    Love you three!

  3. I am so thankful that Roscoe has one of his favorite nurses taking care of him. Trying to find any positive in this is virtually impossible with the overwhelming heartache that is being felt. A second doesn't go by that you and Roscoe are not being prayed for.
    I love you all,

  4. Well said Rachelle!! I know God understands this all far better than we do. I will trust in his will to be done. Love you all!!

  5. Yes, we'll take that twinkle and run with it! I am also he has Rena there! Please everyone, continue to pray for precious Roscoe and for Shaun and Alisha. Thank you.

  6. I am so thankful that decision has been taken from you.Where there is life there is hope,candle continues to burn brightly for you in Ireland.May God wrap you all safely in his arms tonight & give you the comfort of his warm care & love.Continue your fight Roscoe you are loved dearly by all & thank you for your twinkle today x x x

  7. This news is enough to make me smile. :) Positive, healing thoughts and energy being sent your way from Vero Beach, Fl. Much love, strong health and happiness to your gorgeous baby boy! Hugs to you both as well.

  8. Praying for you and your family!

  9. You are all being lifted up through thoughts and prayers. God is with you through your darkest hour.
    Your constant faith is my strength. I love you.

  10. Prayers for the Lord's healing, strength, blessings and wonders on this little one's behalf -- and that of his family. Of such, surely, is the kingdom of Heaven!

  11. My husband and I just went through a similar situation with our son. In fact he just came home yesterday the 13th from being n the hospital since April 14. We too had to deal with the paralytics being turned off without our input. HANG ON TO THAT GLIMMER or TWINKLE of HOPE!!!! God does marvelous things. The doctor had me call my husband to the hospital because things were so close to the end. We had to wait and pray his heart and kidneys would come through. We were about 12 hours from dialysis if he made it that long. We talked to him, sang to him and touched him as much as possible. The doctors didn't think he was going to make it. Please dont give up. God has a plan and whatever it is it will be great. After being in ICU, on the regular floor, and in rehab we are home. He has very few residual effects, nothing we cant handle. They are so mild time will more than likely take care of them. A book that might help you get through this is Big George author unknown. Amaxon, Barnes and Noble and I'm sure other places will have it. Its very short and can be read in one sitting. It really will help you see your situation through a different set of eyes and will show you God has a plan, even if it isn't what you want. He has great plans for Roscoe. Through this trying time, try to find the work of the Lord, its there. I will certainly keep you in my prayers. Dana Johnson and I are good friends.If there is ever anything mi could do, even if its just a visit or to talk in the phone please don't hesitate to let me know or Dana and she can get in touch with me. With good all things are possible.

    Brothers and Sisters in Christ,
    Amy Ham