Anguish and Hope..

I used to wonder how I could feel such utter anguish and hope at the same time...thinking somehow that these two emotions were incompatible with each other. With all the time I have had to contemplate and pray as I hold baby Isaac at the hospital, I think I have learned something new...
Hope and anguish need each other..with out the other, both of them hold little purpose. I have hope in my faith in Jesus Christ, but without the desperate despair I feel for my sinful nature, I can not truly cling to the hope that only comes from dependence on Him. I can not fully feel the joy and amazement that I feel whenever I think of the grace extended to me everyday despite my failures.
Anguish without hope is an unbearable thing to watch and to experience. There is nothing that separates us from the love of God. Nothing. Is His arm too short? How sad it would be to believe in a God that was just really good. Our God is not just really good...he is God. Our minds can not comprehend the fullness of His being.
And so, tonight I can be okay with the coexistence of anguish and hope. My heart aches for Isaac. He is no better today than he was yesterday. The herpes outbreak on his hand may explain a lot of the pain. Now, we must wait while it takes it's course of healing..usually about a week. Until then, we will not know how much pain will still exist..how much neuro-irritability will remain..or what God will ask of us as time goes on.
I started out the day feeling encouraged that maybe the herpes could explain things. I didn't have a lot of others share in that theory. But, I still think it is the case.

The pain and palliative care people came back..they seem to come in groups of three. Today it was the director of the program, another doctor and a social worker. While beginning by reminding you that this is not hospice care but pain management care, they then proceed to talk about end of life decisions yet again.
It bothers me that as I have sat at the hospital alone for the most part...barely able to even be in the same room with my husband because he is home with the kids for the 5 days we have been here...that they would not ask if we should set up a care conference where both of us could be there before asking for incredibly major decisions to be made. I am really uncomfortable with these three "professionals" overwhelming me with discussion yet again about the possibility that Isaac's body is rejecting feedings and that we need to have a written directive because he has a "bad brain." Yes, pain team, I do realize that if he needs to be resuscitated today that the staff would have to do whatever it took to try and save him because we haven't written a directive. The fact is..if that happened and we had something written, it would say "Do everything you can...we don't even know him enough yet to make a decision like that..and what we do know of him does not lead us to believe that his life is meant to end today."
The question they keep asking is "what is your purpose here during the hospital?" Well, now...what might that be? Do you think the fact that the baby is stiff as a board screaming in my arms, might be a clue? What does anybody go to the hospital for? To figure out what is wrong with them and be treated for that illness or condition. On his board that lists goals for the day...it now doesn't change..it says comfort. Neuro-irribility is not a condition. It is simply a diagnosis of exclusion--when they can't find anything else to explain the pain. Never should we stop trying to figure out what might be causing him pain..would you want someone to stop looking for the source of extreme pain you are enduring? And I am not talking about endless tests and procedures--just always an awareness that we don't have answers yet.
And doctors,we didn't bring Isaac into the ER on Monday saying we wanted advice on how to humanely help him to die.
(Please understand..I don't want to misrepresent these people--they seem very compassionate and knowledgeable...as I said before, it is only my aching ears (literally and figuratively) and heart hearing this information. I have no objectivity in this matter and maybe I am not hearing what they are saying correctly..yet another reason to not be receiving this information alone without some else hearing the words.)
But this is what I do know....

Isaac's fight is not over...not in the least. I plastered pictures of him when he is happy and interacting with his family all over his room. Why are we here? This is why we are here...this little boy is lost right now and we want him back.

I am not one who says or imagines that life on a ventilator is worse than death. Not for a second. We have had two children who have been trach/vented and they both were so full of life it would be unimaginable for anyone to think how easily either one of them could have been placed on dnr/dri status so they would not have to "suffer." I hate the term "quality of life." I will not allow the use of that term to guilt me into making a decision that is not mine to make. But, speaking of "quality of life" If you have ever met Maisy or have even seen a picture---you could only wish to have the quality of life that this girl has been given.

God is still in control. Baby Evan required a ventilator for every breath. He died anyway. God hands were not tied because the ventilator was in place. Every breath is from him and I will not forget that. God is sovereign in all things...in suffering, in life and in death.

I believe that God will make it clear to me when decisions need to be made regarding Isaac and his future with us. I have no anxiety about that. I am not afraid of any the the options that may be set before us in the future. I trust that He will be there with us when we face tomorrow.

My traveling VISA

No, I am not traveling anywhere requiring a Visa although I wish I was heading off to visit Tyler in Kenya, but my visa card seems to be traveling. Last evening, my incredible friend Diane came to visit at the hospital. We were able to walk down the road and get some dinner that wasn't served on a hospital tray. It was so nice. I didn't want to carry a purse and so I slipped my visa into my pants pocket and got ready to tuck Isaac back in his bed to rest. And that is when he pooped..everywhere..and then screamed and arched so the poop was everywhere...always nice right before dinner. The nurse was going to throw all of his bedding in the wash while we left and so since my pants were covered, she took them along with...with my visa inside the pocket.
When we came back to the room, the nurse said that she found the visa and put it in my purse. Now, the fact that my purse is actually a converted diaper bag should have been a clue. But, I didn't think anything of it. Diane has a purse. So this morning, I realized that the nurse actually put my visa in Diane's purse and she lives at least an hour away! Did I mention that the hospital doesn't take discover and that my visa card is the only available source of funds I have at the hospital? I am glad that I have left overs from dinner last night...sesame chicken for breakfast? Not bad!

Did I mention that he looks good in Monkeys?

It has been another rough day for Isaac. But, something very interesting has occured. At midnight, Isaac's IV stopped working. His IV is in his left hand. When they removed all the tape and the board, I opened his fist and on his left hand was a rather awful looking rash. The left palm is the site of Isaac's previous herpes outbreak. I am waiting for the doctor to come and look at the site, but it could be a possibility that the herpes could have began this whole crisis in the first place. With every body part checked over, the one thing that was not looked at was the left hand because if was the site of the IV. This just maybe a piece of the puzzle we have been looking for. It is going to be a long night...
UPDATE--I am trying not to hyperventilate but my mind is now racing in several directions. The doctor said the rash is highly suspicious of herpes. And now I am not sure what to feel..

I am feeling a sense of relief because Herpes can be extremely painful and the pain begins even before the rash. This could explain what triggered this event.

I am feeling sadness because he is suffering so much and it was something that we could have been treating if the IV just hadn't been covering the rash. My heart is broken for this little guy.

I am feel angry that I had to face discussions regarding end of life decisions like "feeding for comfort" versus "feeding for nutrition" when he may actually have something treatable. I wish I did not have to hear that his body may be shutting down or that we should decide if we wanted him to be placed on DNR/DNI (Do not rescusitate/Do not intubate) status. They weren't wrong in bringing up these discussions but I was so not ready to have them yet.

I am feeling peace and hope that maybe this means we are going to be able to see the bright eyed little boy smiling back at us and radiating such simple beauty and that he can be free from the pain he has endured. My prayer has been that we would get a chance to get to know our little boy so much more and be able to share with him all the love we have to give him.

I have such a thankful heart tonight..maybe I am holding too much hope that this will explain things but right now my baby is getting a new IV placed and he is not screaming. That is a good sign...a very good sign. I just feel like celebrating! It is amazing how so many of our emotions can go exist at one time.