Quiet Progression

Today continues to be another good day. They are continuing to wean his medications and high flow down. He is still very sleepy and has a very high heart rate, but everthing else is great! We continue to hold our breath as each day passes with no significant setbacks.
Thanks for your love and support-
Greg & Heidi

Pictures of the Week

Sorry, just had to post a few pictures. My older two kiddos are in Texas visiting their cousins. They were so excited, they got to fly there and everything! Thanks Lance and Aimee.

The other ones are of Cannon's day at the hospital. He loved being with Ethan and playing doctor. However, he was getting a little to confident by the end of the day and getting into things he shouldn't! But come on, what 3 year old would not try to have a hay day with all the stuff in Ethan's room!

Ethan is continuing to have good days. He is still quite sleepy. But he needs it. Physical therapy started coming in and working with him today. It was fun but overwhelming at the same time. He is so weak, but it will get better. The doctor today said "Everyday I just keep peeking in his room expecting to see problems. . . and they are not happening. I think he is REALLY getting better." Obviously that tells you how sick and fragile he WAS. Ethan has come so far. But it also reminds me how sick and fragile he IS. I express my gratitude everyday for his progress and pray that it will continue. I am all too well aware that with Ethan we can never let our guard down.

Love-
Heidi

Good Day at the Hospital

Today was the perfect day to let Cannon hang out with me ALL day at the hospital! It was perfect because Ethan SLEPT ALL DAY (and all last night too)! Thus I could play games and hang out with him the whole time. It seems the worst of Ethan's withdrawls are over. He sleeps and just wakes up for his assessments or when we move him. He looks around (looks stoned) gives a half smile and goes back to sleep. Seems those high doses of methadone and ativan are working.

The other beautiful thing is that at the exact time he finally started relaxing and sleeping, his FEVER went away. Whoohoo! So, we cannot help but think that this whole time it has been a withdrawl fever. It makes sense, because the fever came on a few days after he was reintubated through the nose. And as mentioned before, once his ET tube was out of his mouth he was soooo much happier, took his paci, and could self soothe. So with in a 36 hour period his Fentanyl was cut from 10mcg/kilo to 5mcg/kilo, and his Versed drip was turned off. Plus his IV PRN meds (morphine, ativan, etc...) were only given 1-2 times per shift instead of 15 times a shift. So basically that is when the withdrawls first started (and so did the fever)! Of course I could say all this and tomorrow his fever could be back for some unknown reason. But for now it is gone and we are thinking it was a withdrawl fever. My insurance is just glad they tested everything else under the sun 20 times over to make sure it was nothing else!!!

Just a side note to mention my love/hate relationship with insurance. Love them cause we have a five million dollar a person benefit that includes transplants, but hate them cause I have to fight them over everything, and they end up paying, but it is just a pain! The other week when I was losing it with a "customer service" rep, she said "Well, I am sorry you hate that we keep bothering you, but if your CLAIMS WEREN'T SO HIGH we wouldn't have to bother you". I quickly replied, "Well okay then, take all my time you need, I love having the 5 million dollar baby that I can't hold and have to watch suffer day after day" She was quiet for a minute, quickly got to the point, and hung up! (Did I mention this call was during the time when Ethan was so critical we weren't sure if he was going to pull through). So much for "Customer Service" rep!

All is Well

Ethan is doing well today! Not much has changed. They are taking it real slow. The good news is that he has taken a few 1-2 hour naps last night and today. The withdrawls are not easy on him, nor are his fevers. But overall he looks great. He is down four pounds from two weeks ago! That is how much swelling/edema he had on his little body. He is back to being a peanut!
Much love-
Heidi

Ethan's Voice!

(You may need to pause the music to hear) For 5 plus weeks all I wanted was to hear his voice. This is all we have heard for the last 24 hours, literally. He can't sleep! Poor guy.

Hematoma

The good new is it is not a blood clot! The final verdict is its a hematoma (a collection of blood outside the vessel). So the bad news is why does he have it? Right now they are not worried about it unless it gets bigger. It bothers me a little because he is not wanting to turn his head as much to that side. So in time the body will absorb it, or it will get bigger and we will investigate more.
The other bad news is he had a really bad night. He decided to stop peeing well last night and still isn't peeing the greatest. So they have stopped his feeds to reduce intake and are started on TPN tonight. He started struggling with breathing last night and they thought his lungs were getting too wet. His breathing seems to be better, but he is still VERY uncomfortable today. They are just laying low and keeping a close eye on him. They don't want to do too much in case it is something that will pass on its own. I hope it will, and soon, because there are no smiles today and I don't like that!
Love-
Heidi

Fragile

Ethan is doing well and still giving smiles in between withdrawl episodes. Every time he grins I just want to pick him up and go about normal life like nothing is wrong with him. Then I realize I am on a hospital floor entitled the Pediatric Cardiothoracic Intensive Care Unit. So as quickly as the smiles can come, they can disappear. And suddenly he is shaking, crying, tachycardic (really high heart rate), and inconsolable. Love narcotic withdrawls (not). Not to mention his fever was hanging between 102-103 most of the day which only makes him MORE uncomfortable!

My mom came down this afternoon so I could go to church with Greg. I was saying goodbye to my little man when he smiled and turned his head away like "mom, don't look at me like that". Totally cute moment, except. . . that is when I noticed a blue bulge on his neck in between some skin rolls. So after running tests no one will answer my worries of is it a blood clot or not. They seem to be avoiding me and hoping I will not beg for an answer til tomorrow. That means they want the VIP radiologist to read the scan! Which in turn makes me more worried!

I would think with Ethan's progress this past week that I could finally let down my guard and enjoy him, but I can't. It almost gets harder. With every smile I get more attached and that much more sick when "issues" or "unknowns" arise. I really need to get my emotions in check. We have definitely seen him through a rough period of his life. Getting through these two surgeries is HUGE. But it is apparent Ethan is not in this mortality for a boring and predictable experience!!! He plans on keeping things action packed it seems. Guess I should welcome the grey hairs that are coming with open arms! It is better than what Ethan is doing to Greg. . . balding and grey hairs :)

Thanks for reading my rant-
Heidi