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
Subscribe to:
Post Comments (Atom)
Kaiden once faced the trach option when they could not get him off the vent. So, I know you are making a tough decision right now, but it sounds like it is exactly what our little buddy needs. My thoughts and prayers are with you as he undergoes the next part of this journey. Please let me know when the surgery is and we will be happy to take vigil during that time. We love you all.
ReplyDeleteI am so sorry to hear you are going through this. I couldn't imagine having my child go through this. You are in our prayers and in our thoughts! I pray James in not in pain and has happy thoughts!!
ReplyDeleteTracey
As you know my thoughts & prayers are always with you all. Sorry I am not there with you. I will definately be praying even harder tomorrow, that this is what he needs - that he has a quick recovery, and you can take him home. Home to hold him & love on him all you want. May God bless you all.
ReplyDeleteI love & miss you,
Aunt Lou-Lou
My sister has a child who has just been diagnosed with Vici Syndrome. Her daughter is 13 months old, and she would love to get in touch with you as a resource. If you could contact her she would greatly appreciate it. Her name is Kristi her email is: kristiet13@yahoo.com Thank you so much!!
ReplyDeleteHi, I made a profile at Facebook for families with children with Vici syndroom. The type our children have is a variant. We are from the Netherlands in Europe.
ReplyDeleteYou can find us at Vici syndroom. My nam is Marijke Ruiten, I am a mother of 2 children with Vici Variant syndrome.