A LOT has happened over the last few days.... and its complicated to get into, and was a terrifying experience so I will most likely forget some of the details, so please bare with me and my rambling explanation. Yale is in the CCU. He is on a venitlator with loads of support medicine. and I don't think he'll be coming off of anything until he gets a new heart...in fact I bet he'll be placed on ecmo at some point... but the doctors assure me that its not in the pages yet, but it could happen. On Monday Yale was fine and we were on 4d. We found out that Yale was going to get a picc line placed in. A picc is sort of like a permanent IV. except it goes all the way up through the arm and to the heart. Through a picc line they can give meds as well as do blood work and it can stay in for as long as they need it to. It was great in theory to stop torturing Yale with his constant need for blood work, and difficulty getting an IV in. I took him down to get his picc, but it didn't go so well... the only way I can describe what happened was that they got the guide wire in, and that irritated his heart and he went into extreme bradycardia (slow heart rate) think 1 beat per minute... so basically an arrest. He had no access so all his lines were thrown in quickly and luckily after three rounds of epi (adrenaline) they got his heart going.
Dr Benson came to tell me that all this happened and that they couldn't get his blood pressure up and that they were basically "sharpening the knives" to put him on ecmo. Luckily, he stablized and is not needing ecmo right now.
His sats are low and his ventilator settings are high. Of course Yale has pulled through worse situations, but he is sicker now, and is definitely getting worn out.
Its really hard to see him swollen on a ventilator and paralyzed on medication. To think that just two days ago we were watching chicken little together and I was rocking him to sleep and now he's so sick.... its really hard to think about, and its really starting to hit me now.
I'm trying to stay positive, but I really thinkwe're in it for the long haul now. this is going to only get worse before it gets better.... as things always do with Yale. I can't wait for the day they tell me they have a heart for him... and the day they say we can go home and Yale no longer suffers from a sick heart and wierd circulation. The day I can leave my child with a baby sitter because I don't need someone who is trained in the signs of heart failure. One day he'll have a whole heart and although we are just trading one set of problems for another... I'm sick and tired of being the mom to a hypoplastic left heart baby.... and I want to be the mother of a transplant baby... and I can't wait for the day that happens...
Also...I got into the Ronald McDonald house today after only 6 days on the list.... at least that worry is over... and I can focus now on supporting Yale through these tough times. I can tell that I am getting weaker through all of this so I can only imagine how hard it is on him. He's the one going through it all...I'm just the watcher. And so now that Yale is in the CCU I'll try and keep the updates daily.... I just hope I can see him open his eyes again and look at me... I'd love for him to be breathing on his own... but I'm starting to lose hope.