Surgery Number 3...

First off, I have to apologize for not updating sooner, but it's been just a little crazy around here... On top of everything going on with James, Joseph has been here the last 2 weeks and keeping him occupied is a FULL time job...

About two weeks ago (Wednesday will actually be 2 weeks), James had an "acute episode" that the doctors are still unable to explain... Nobody knows what caused everything to happen... All we know is that all of a sudden he was coughing up bloody mucus. The doctor came in to check what I had suctioned out of his mouth and James just started desatting. His oxygen level was in the 60s and they couldn't get it back up. He was turning blue and totally limp... One doc came in and asked if I wanted him back on the ventilator, I told her yes because his Dad was not here and I had to at least try til Joe could make it back to Denver. Right before they put the ET tube in to put him on the ventilator, they hooked a syringe up to his G tube to empty his stomach contents... BLOOD was all the doctor pulled out... It only took 2 tries and they had the tube back in and he was back on the ventilator... The difference this time was that he wasn't breathing on his own AT ALL! The ventilator was taking all the breaths for him, where last time he was breathing over the ventilator within 30 minutes.

We really thought that it was the end... By time Joe got here the xrays showed what the docs thought was blood, completely filling both lungs. They were still suctioning blood from deep down. As the days have passed, James has improved, but not enough to come off the ventilator... They were trying pressure support trials like they did last time, it shows what he is capable of doing on his own before they take the ET tube out... James failed... He has not shown enough improvement that makes the docs believe he'll be able to sustain breathing on his own. He does take breaths OVER the machine, but the machine is still doing a lot of the work for him... SOOOO what does this mean???

Surgery #3!!! They are going to do a tracheostomy so that James will have a permanent (although it can be removed if needed) ventilator... With this we are hoping that we will be able to get to a point that it is safe to transfer James home. We'll also be able to HOLD him!!! My arms have been empty for WAY too long!!! Of course the doctors have told us that this is the last option... If James can't stay stable or improve once on this, there really isn't much more they can do... So, we are praying like mad and keeping everything crossed that we can... We do know that this can be another strain on his heart, but cardiology and pulmonology are very optimistic about having this surgery done.

I will TRY MY HARDEST to let everyone know when his surgery will be... We'd like to try to set up a prayer vigil for during his surgery.

On a side note... THANK YOU TO EVERYONE WHO IS FOLLOWING JAMES ON FACEBOOK!!! It brings tears to my eyes to think of all the love and support our little angel has... He has touched the lives of so many people and a million thank yous will never ever be enough!!!

Love,
Nichole

Sacred Silence

Sacred silence, Holy Ocean, gentle water, washing over me; Help me listen, Holy Spirit. Come and speak to me...

God my Father, Christ my brother, Holy Spirit, sanctifying me; Lord, I'm sorry, please forgive me. Come and set me free.

Holy Mary, Gentle mother, God's pure vessel, praying for me; Saints and Angels, all in heaven, come and be with me...

We sang this song at Mass this past Sunday, and it was like somebody was speaking the words in my heart... How do you make the decision that somebody's life isn't worth trying for? That they have given up? That YOU should give up on them?

God, I'm sorry, for every wrong decision I've made in the care for James... Please guide us and be with us so we will know when the time is right, when you have chosen to take James home...

The Plan (For now anyway)...

Six weeks!!! This is our longest stay to date at Childrens. Unfortunately there's not much new to report... James is doing about the same... Still over loading on fluid, docs are trying to get him balanced, but every time they do, it seems another problem arises... This week it's his kidneys... Numbers are high, which means his kidneys are "dry" or dehydrated, even though his lungs are filled with fluid... So, now we are cutting back on the diuretics, which means, maybe he'll get more fluid on his lungs... But if we don't and his kidneys get too dry, that's a whole new bag of worms...

His red blood cell levels were low again today, if they stay low tomorrow, he will be getting another blood transfusion... Anybody A+???

I wish I knew the answer to just get him where he needs to be... I think the more the docs "try" new things to understand his little body, the more he gets behind on recovery... They have also talked to us about maybe this being his new "well" and that he won't get better than this to be able to go home...

So they left Joe and I with the decision of trying to get through this and staying in the PICU, or, putting him in a room upstairs and keeping him comfortable until he can no longer fight...

As of now, Joe and I have decided that he still has too much fight in him to give up... So we have told the docs we want to give him his own time to recover... He may take a little longer than the average baby, but I think the more we push him on their timeline, the more he regresses... So we came up with a plan today with the new docs that took over (residents change every month) and I hope they continue to listen to our wishes as to indicators that James is ready to try new things... So far, so good, but today was only the first day... We'll see how it goes... Wish us luck...

Love to all,
Nichole