Some good, some not so good

I'm not afraid to admit it, I slept in today. By sleeping in I mean that I stayed in bed until 10 am and tossed and turned. I finally decided to get out of bed and go to the hospital to find out what I was up against today. When I got there, mind you Aaron had been there for a few hours, the docs were all in there. One never knows if this is a good thing or a bad thing. This time, they were just rounding...so, nothing bad was happening. They were going down on some of his sedation and vent settings again. Good news. They were going to pull out his chest tubes. Good news. We'll try to extubate tomorrow. Good news!

He had an ECHO today to look at how his function of the heart was. Mostly, everything looked good. The bad news is that his new pulmonary valve has moderate to severe leakage; it was originally mild. No one knows what all of this means. They don't think they'll have to replace it again during this hospitalization...at this point anyways. The other concern is that the pacer is doing all of the work for his heart. They are going to give him a few more days to be extubated, to come down on some of the sedatives, and to let him wake up. The hope is that his heart can figure it out and start doing the work on its own. If not, we may be looking at another surgery to get a pacemaker placed. We've been given 50/50 odds. Uggh! Poor Nathan. This little guy is having such a hard time; not to mention mom and dad are too. We pray that over the next few days he can be extubated and stay that way. We pray that his heart will wake up and start pacing itself. We pray that this leaky valve doesn't mean he has to have another OHS and be replaced now. For the time being, we continue to wait.

Slow progress

Last night, Aaron and I went to bed furious. We felt like no progress had been made for the day. The day before he had failed being extubated (having the breathing tube taken out so that he can breathe on his own). Yet, they felt like they could just keep turning up his sedation medications and not backing down on his ventilator settings yesterday. I just couldn't understand why they want to extubate him in a few days, but not work towards helping him to be successful at it. So, our goal today was to go in and force them to come up with a plan. We need to wean the vent settings if he can tolerate it, we need to start backing off all of the sedation meds so that he can breathe when the tube is taken out.

After a night of no sleep and steam coming out of my ears, we went in for doctor rounds. Luckily, we had a new doctor on. She listened to all of our concerns and worries. She didn't completely agree with everything, but she did say that we could start working on the vent and slooooowly start turning down the sedation meds.

So, the progress for today:

• Decreased the Fentanyl drip by 1mcg/kg
• Decreased the pacer from a rate of 100 to a rate of 90
• Turned the vent settings down- O2 to 30% from 40%, respiratory rate down from 18 to 15, peep down from 8 to 6
• Increased feeds from 2mls to 4mls an hour
• They are going to clamp the chest tubes tonight and, if the x-ray looks good in the morning, they will pull the tubes out tomorrow.

We feel a lot better about today. I'm not expecting to make huge changes everyday, just snail-paced changes. I just want to see progress. I know that is unrealistic, but one can hope.

The morning of the first surgery.

This is my first blog post in years believe it or not, and I dare to call myself a "computer scientist". Here goes nothing...

-Aaron

This trip to fix Nathan in Minnesota has been a lot tougher than I thought it would be. Nathan has already been through more than any kid his age should have to suffer through. I thought this would be a piece of cake, after all he was doing externally great when we came here. Nothing but smiles and laughs. It's been a test of faith and suffering, but our boy is still here. He's alive under all of the meds and he's a fighter. This is the story of the day of his first surgery in Minnesota (3rd overall). I'm going back in the past a couple of weeks but it seemed like a good place to start.

Minnesota Day 3.

The morning of the big surgery started bright and early at 5AM. Nathan was allowed "only clear fluids" so we gave him his first cup of apple juice ever the morning before surgery and he drank it up like it was the best thing he ever tasted. They gave us this yellow disinfectant soap that we had to rub on him to prepare him for surgery so we stripped off his clothes and put him in the sink for a quick bath in yellow water. We dressed him up in a big white abominable snowman outfit and I tickled his tummy with nibbles one last time. He laughed hard so I did it over and over until he was sick of it and I was biting back tears.We took a couple of pictures with him even though we didn't feel much like smiling. 

St. Mary's admitted us right away and took us down to the first floor where the OR is located. We had a private room but we could see others in their rooms looking nervous, waiting along with us. The nurse was thankfully friendly. She had things to do to prepare Nathan but he had just fallen asleep in his stroller so she let him rest until she couldn't wait any longer. They took him out of his snowman outfit and put him in a really cute surgery outfit that was white and had colored letters of the alphabet all over it. To help take my mind off things I took some pictures of him rolling around on the surgery bed, playing with his feet and giggling. They finally came in the room to take him. Two men came, one young the other older. The older man was probably in his 70's and his name was Dr. Oliver. We later found out he was the oldest living survivor of Cystic Fibrosis in the world. Both doctors were both extremely nice to us. The younger doctor asked us if we'd like to say goodbye so I picked Nathan up from the bed and turned around to the corner of the room. I held him, whispered I love you in his ear and cried. I turned and gave him to Jessica and she did the same but with more composure. She handed him off to the young doctor and they walked away with him out of the room and down the hall. They asked us if we wanted to follow and be there when they put him to sleep. We didn't.

Jessica and I got about 5 minutes alone together before being moved upstairs to the 5th floor waiting area. I don't know if any of you have ever waited to hear how someone is doing during a major surgery but every minute feels like an hour. Time drags on and you hope to hear something from the communicator, anything really, you just want to make sure the person you love is still there. We got periodic updates, once every couple of hours starting at 7:30AM. At some point, I think it was around 4 PM, Jessica got this terrible feeling like we'd lost him for a moment. She couldn't even talk the feeling was so strong. I rubbed her shoulders and told her he was fine and he'd make it out of there soon.

The surgery finally finished around 5:30PM. Technically speaking the surgery was a success. They replaced both the tricuspid and the pulmonary valves. They used this core matrix membrane stuff on the leaflets of his tricuspid valve that's supposed to act as a scaffold for the living tissue surrounding it. Over time the membrane will become living tissue if the experiment works. This amazing procedure has only been tried on 4 other people ever! Only time will tell how successful it is. Unfortunately Nathan was unable to come off bypass after the surgery. His heart couldn't squeeze strong enough to support a good blood pressure so they brought him back to the room on ECMO where we waited and watched over the next couple of days to see what he could do. This is where we end for this post, but will continue to write about the other days at a later time (it's a lot to write all at one time) ;)

An introduction

I guess I should start by saying why we are putting this blog together. I imagine it is like most people who start a blog. We wanted a way to be able to speak about our life, most particularly in regards to our sick child, without blocking up social networks like Facebook.

Nathan, our second son born on May 31, 2013, was born with Ebstein's Anomaly. Here is a basic picture of it https://umm.edu/~/media/ADAM/Images/en/22703.ashx. Since birth, he has been in and out of the hospital. Currently, he is almost 9 months old and has had 4 open heart surgeries (OHS) and 3 cardiac catheter procedures. He has been in the hospital for over 90 days total. He continues to fight for his life. We aren't starting this blog to get a huge following; we don't expect anyone to even care. However, we need somewhere that will allow us to vent about the bad times and cheer on the good days.

Right now, I'm sitting in a hotel in Rochester, MN outside the Mayo Clinic. My son is in there after his third and fourth OHS. It is cold and negative something degrees outside. The snow lines everything out doors. I should mention, we are from Arizona. Where it is sunny and warm and snow is just a strange figment of some crazed person's imagination. We hate it here, but are here to give our son a fighting chance at some semblance of a normal life. He is in the hospital on a machine that is supporting his breathing, a ventilator. He is on so many sedation medications that it would put an adult in a coma for the rest of their lives; this may be a slight exaggeration. He isn't tolerating getting fed through a tube that is sitting in his stomach. He hadn't pooed in ten days, but finally did and, lets just say, it wasn't pretty. So, I guess that leads us into our first blog, which is a boring start but a start nonetheless...

We had a boring and frustrating day. They're "diuresing" Nathan, which means they're making him pee. Everything is tough right now. He is on a pacemaker that is helping his heart to beat at the right rhythm. However, this also encourages his heart to be lazy. Thus, his heart doesn't want to do any work. When they turned off the pacer, his heart essentially gave up and his blood pressure bottomed out. Meanwhile, they keep turning up the medications that put him to sleep. Making it even harder for his heart to do what it needs to. In addition, they aren't turning down his breathing machine settings, which, again, makes him not want to work. I tried to talk to the doctor about all of this, and he blew me off. I had to step away from the hospital today. I felt like if I stayed there, I would go off on someone. Grrr!

In addition, our two Ebstein's family friends got to leave today. Looks like it is just us now. I'm thrilled they got to leave and sad that we have to stay. Tomorrow is a new day, right? Keep up the faith, right? So easy to say, and such a struggle to accept.