Daily Status UpDade - Thursday, 8/28/14

Just a quick post this morning to let you all know that things are about the same with Dade as they were on Monday.  We're still watching the clot, and his head is still swollen, though I think it's accurate to say that it hasn't gotten any worse since the clot was discovered.  He's had a pretty eventful day already, but he's calmed down and squeaking on his ventilator as I'm writing.  He's had an echocardiogram this morning to further evaluate the clot, so we'll get results from that later.  For now, the plan is to keep giving him blood thinner injections to stop the clot's growth and help his body absorb it.

Dade may also be relieved of a couple of his IV lines today.  One of the lines inserted in an umbilical artery when he was born has seemingly given up the ghost and isn't giving blood for labs anymore.  That means heel sticks to get blood, and he is NOT a fan.  I can't say that I blame the little guy, though!

I'll update again later today, but again, just wanted to let everyone know where things are this morning since it's been a few days since you've heard from us!

Daily Status UpDade - Monday, 8/25/14

In true Dade fashion, today has been eventful.  He's had some swelling of his head over the weekend, and it's worse today.  We now know why. After a head/neck/chest ultrasound this morning, Dr. Anderson saw that Dade has a blood clot in his superior vena cava which is just as serious as it sounds.  This is a vessel that flows directly to the heart and in which one of his cannulas was inserted. Clots are actually fairly commonplace with ECMO because the cannulas are inserted into the vessels, but that doesn't make it any less serious.  The clot isn't fully blocking the vessel, but it is slowing the flow through that region of his body - hence the swelling in his head.  Dade has had a long, crappy day with plenty of poking and prodding, but he's done well through it, and is sleeping well now. After consulting with the CH hematologist, Dr. Anderson has put Dade on a new blood thinner to keep the clot from expanding. His body should absorb the clot, but there are other options if it doesn't.  It may take several days for us to see results from the new blood thinner (i.e. reduction of swelling) that show if the clot is being absorbed.  In the meantime, our new prayer target is that the clot doesn't move.  Please, please pray that it doesn't move. 

Room With a View, Please!

Some of you may have noticed on Facebook the other day when one of my best friends mentioned "Lord, give us a room with a view."  This is our prayer! I don't dream about getting him home just yet. If I've learned anything, its that this road is long, bumpy, full of steep hills and full of baby steps.  Of course its my goal to get him in his room in our house and I can't wait, but the next step is a room with a view.  I LOVE downtown Birmingham and the skyline, but that isn't why Im desperate to see out.  The NICU here has special rooms that CDH babies are admitted to in case they were to need the ECMO circuits.  They are shaped differently so that all the equipment will fit.  Due to their need for minimal stimulation, they also have no windows.  The room stays dark and quiet and can suck the life out of you.  It feels MUCH better with the ECMO circuit gone though.  When Dade had his circuit, he also had two nurses in here at all times, an ECMO specialist and an RN to tend to his needs.  Now, we are down to one nurse and we have added a recliner so now DJ and I sit here together, comfortably.  We look like two old folks cuddled up watching tv, accept for we are watching Dade and all of his monitors.

Before the rooms were full on this unit, I would walk into an empty room, with a view, and pray for God to just get us to one of those rooms.  To me, THAT is progress.  It means that we are off of ECMO, the machine is history, and that our son is making strides to get out of these rooms and into a different type of room...with a view! Let that be your prayer with us, please.

Stuck Between a Rock...and a Rock

Yes, I know the phrase is "Stuck between a rock and a hard place." It is also used in a different way than I am referring to it tonight. Usually, it means that you're in a difficult situation with no way out.  In my situation, I see it as a benefit.  I am stuck between a rock...THE Rock, Jesus, and another Rock, DJ.  When we say that this has been the hardest, scariest, and  most exhausting month of our life, its no understatement.  However, I have strength from the Lord and from my amazing husband, DJ.  DJ has driven me around for the last month, taken care of me at every point of the day or night, held my hand as we heard our son cry a tiny cry before being taken to the NICU, makes me eat when all I'm doing is worrying, makes me laugh so hard my stitches may or may not heal, is my breast pumping drill sergeant,  has arranged to be out of work to be with me and Dade to meet our needs, and loves me more today than yesterday.  I am blessed beyond measure.  Dade has the best father there is and I have the best partner for this imaginable!

 If you are about our age or older, you may remember Paula Abdul's hit song "Opposites Attract." She was so right! DJ and I have some personality traits that are similar, but the best/biggest difference is that we process information completely different...hence the fact that I am a Social Worker and he is an Engineer.  Anyway, from Day 1, April 16, when we met with Dr. Anderson, I knew this difference would be in our favor.  I cried the whole entire meeting that we were learning about Dade's diagnosis and what the long road would look like.  DJ took notes and was just taking in all the information he could.  I was a wreck immediately.  He consoled me and held me until the next day when all of the information he had gathered finally sunk in and effected him.  We have been on different time tables for most of this journey so far.  It has allowed us to be strong for each other at the time that it really sinks in with either one of us.  Such a blessing. DJ is NEVER one to draw attention to himself, but I just had to share his strength and love every day through this! We haven't been apart more than a few hours since July 22.  Most folks would be a little sick of their spouse, but I truly don't know how we will go back to work and how life will be with this "new normal." It has only made us stronger as a couple and as parents.  

Daily Status UpDade - Friday, 8/22/14

First thing's first: thank you, Almighty God for your healing touch and for your unending, unconditional love.  Thank you for the incredible doctors, nurses, and practitioners that are caring for Dade as if he were their own, and for the skills with which you have blessed them.  Secondly, thanks to all of you for your prayers on Dade's behalf!  While we are still far from out of the woods, we have nothing but praises for today!

As I'm writing this, Dade is approximately 28 1/2 hours off of ECMO, and about 8 hours from having his cannulas removed.  He's doing great!  His blood gasses have bounced around a bit, but everything seems to be settling down, and it hasn't been anything unexpected.  The little guy is a chunker today. He has some fluid to rid himself of after coming off the ECMO machine, but he'll get it done!  Again, I have no illusions that we don't have some rocky spots still to cross ahead of us, but I think I just may get some sleep tonight.  With life post-ECMO comes a new set of challenges, goals, and obstacles, but we'll celebrate a little now, and face those head-on as we get to them. Tara and I are so proud of Dade and how he's kicked some tail the last few days, and are elated to have him off ECMO and doing so well!

We love you all and thank you from the bottoms of our hearts for your continued prayer and support! 

Daily Status UpDade - Thursday, 8/21/14

As of about 5:30 pm, Dade is off the ECMO machine!  The measure of how he's doing off of the machine is the concentration of carbon dioxide (CO2) in his blood stream.  The nurse just checked his first blood gas after coming off. So far so good!  I'll update here as we go along.  No news is good news, so if there are a few gaps, that will be why.

Update, 7:45p: Dade's last 2 blood gas checks show his CO2 in the desired range.  Dr. Anderson came by and told us that if he holds up tonight, Dade will have his cannulas removed tomorrow.  Leaving them in feels like a safety blanket, but they could allow air or a clot to travel to his brain or heart if not taken out.  They're staying in tonight just because of Dade's prior happenings when he came off ECMO the first time.

Update, 9:15p: Last couple of blood gas checks have been good!  Hanging in there like a champ.  He was a little sweaty, so the nurses changed his bedding and pulled off a couple of blankets to help Dade cool down. Seems a good bit more comfortable!

Daily Status UpDade - Wednesday, 8/20/14

Before I jump into today's update, I need to clear something up from yesterday's post.  When I said that they were testing Dade to see how he did on his own, I failed to make clear that he is still on the ECMO machine, but is just receiving minimal assistance from it.  They've turned it down as low as they can without taking him off, and were watching to see how he did with his CO2.  Mrs. Williams, if you're reading, please don't count off!  I promise I'll be more clear next time :) 

That brings me to today's big news: Dade has done a great job holding his CO2 levels, so barring anything crazy tonight, he's coming off of ECMO tomorrow!  They'll remove the ECMO machine, and will turn up his settings on the ventilator.  They'll also leave in his cannulas (tubes in his neck where the machine connects) just in case he needs to go back on.  It's simultaneously exciting and terrifying. We've been trying to get back to this point for almost 3 weeks, and of course want him off of it as soon as possible, but things didn't go so well last time.  However, Dade is 3 weeks stronger now, and isn't 2 days past a major surgery where his insides were literally rearranged, so we're claiming that it will be different this round.  That doesn't mean we won't have some rocky days after this - we absolutely will - but we're praying for God to keep Dade off the machine! Another thing to note is that his room will go into virtual lockdown for awhile as he goes back under Minimal Stimulation orders to keep him from getting riled up.  That will change once he's more stable, but until then, his room will be a very quiet, very calm cave as the nurses put it.  Tara and I won't even be able to interact with him much while he's stabilizing. That also means that Dade can't have visitors for a little while.  Again, we're not sure how long that will last, but we'll let you know when that embargo has been lifted.  The way we see it though, we'll give him any amount of time he needs without stimulation so that we can have much, much more time with him later.

I'll update tomorrow as I can, but please understand that tomorrow is a big, big day in this whole process, and that the next several days will be critical for Dade. We may be a little hard to come by as a result.

We love you all!