Author: William

We got to go for our first walk outside with Evan today. We put the two med pumps that he’s still on with us in the bottom of the stroller and went out for a 15-20 minute walk in the huge courtyard. Evan was asleep before we ever even made it outside and never opened his eyes while we were out there. Let’s be honest though, the walk was not for Evan, it was for mom and dad. It felt so amazing to do something ‘normal’ with him, and more than that it gave us a sense that the end of our hospital stay was drawing near. Let’s hope that’s true.

Here are a few pictures before, during, and after our little adventure. Oh, I got him a new outfit for the occasion. 🙂

 

 

Since reloading the phenobarbital and continuing the maintenance dose Evan has not had any more seizures. This afternoon he was removed from the EEG and we gave him a nice bath to get all the wax and adhesive off of him. He was awake and alert for a very long time today, from about 10:30am until 4:00pm. Lots of looking around, making faces, smiling, and best of all zero crying…which was made up for by the two kids on either side of us screaming most of the day. Seeing him alert, moving around, making faces, it’s the most wonderful thing in the world.

Here’s a few pictures from throughout the day.

 

The doctor’s restarted Evan’s feeding yesterday afternoon, and recently increased him to 6 mL/hour. They will keep increasing him every 8 hours until he’s at his goal intake of 22 mL per hour and then they’ll switch to 44 every 2 hours, and then 65 every three. This will take several days to get him there but they want to make sure that he is handling it well.

As far as the seizures go, he’s had 3 non-clinical seizures since yesterday afternoon. One at 9:30pm, one at 4:00am, and one at 9:30am this morning. A non-clinical seizure is a seizure in which there are no outwards signs like twitching, loss of body control, non responsiveness, etc. Sarah was holding him at 9:30pm last night and did not notice anything out of the ordinary, it was only after the neurologists reviewed the information from the EEG that they know he had the 3 seizures. They gave another dose and are continuing the maintenance doses of phenobarbital and will continue monitoring him on the EEG. Since they gave the extra dose at 11:00am he has not had another episode as of this post. Typically seizures only last a little while (days to weeks) after a stroke so they will continue the non-seizure medication and reevaluate him at a later time. Research is on-going in the neurology community to see what length of time is best but right now they just don’t know.

The CT scan is still scheduled for next week to take a look at the other side of his brain to see if there is indeed something there indicating another stroke at a different time.

He’s sleeping a little bit more as the phenobarbital is also a sedative but when he’s awake he’s very active and alert. The neurologists came by to examine him a couple times today and they do not see any  signs of any long term effects. In fact they were very pleased to see how active he was and all of the movement he was making.

That’s all for now. Thanks for being on this journey with us.

 

As you read yesterday things went really crazy really fast. Evan is now stable and relatively happy back in the PCTU. The echo, x-rays, blood gases, and cultures are not pointing to NEC which is great. Because he had some symptoms and because the doctors take NEC very seriously they are treating him with IV antibiotics and putting a hold on any feedings by mouth for at least a week. He will get nutrition through his IV but nothing can go into his stomach so he’ll be pretty irritable for the first 2-3 days. This will give his stomach and intestines time to calm down and heal if there was anything going on with them.

When he was moved to the PCTU he was under a lot of stress so he was sedated and intubated (put back on the ventilator). Additionally, the femoral arterial and central lines that had been removed for us to go to the floor were put back in so they would have access for delivering medications and fluids. His feeding tube (that daddy worked so hard to put in the night before) was replaced with a similar tube for removing gas from his stomach. He went back on Milrinone, was given potassium, and some other things. Through the course of only a couple hours his pH and lactate were brought back into the normal range and he’s been doing well since. His ventilator settings were reduced through the night and by 9AM they did a sprint and removed him from the ventilator. One of his femoral lines and the tube in his stomach for gas was also removed.

Dr. Mackie came by this morning and discussed another possibility with us that they are investigating. It’s called coronary ischemia and essentially means that there was not an adequate amount of blood being supplied by the coronary arteries to the heart. This possibility was brought to light during the echocardiogram done yesterday. Also during this echo they noticed a difference in his ventricular function (the beat of the ventricle) in comparison to the echo done a week ago. This could just be due to the stress he was under yesterday or because of the pacing being supplied by the pacemaker.  They are still investigating whether or not this is an issue and what they might be able to do about it. They are monitoring it by testing the cardiac enzyme troponin. These levels are currently elevated but not at a remarkable level.

Since he’s unable to eat for at least a week and it’s going to take time for him to work back up to feeding once he’s allowed to eat again I suspect we’ll be here at least 2 more weeks. We don’t know what that means for us. We don’t expect them to keep us in the PCTU for that whole time if he’s stable, but I don’t really want to go back to general care unless they learn what happened and do something about it. We could go to moderate care or to the Holden NICU.

We appreciate everyone’s concerns and your thoughts and prayers during this difficult time.

 

 

Just talked to Dr. Devaney and Evan is out of surgery. Everything went great. I was expecting them to put in the dual chamber pacemaker and just use one lead and only pace the ventricle but apparently they put in a single chamber pacemaker. When he has his second surgery in a few months they will put in a 2nd lead and change out the pacemaker from a single to a dual chamber. Sooooo…. that got me thinking, do they re-use pacemkakers? Insurance is going to buy Evan two pacemakers? I want the old one to use as a keychain. Sound good? 😀

Kicker… there’s no bed available in the pediatric cardiac ICU so they’ve got Evan just hanging out in the OR waiting for a bed to become available so we cannot see him yet. 🙁 Knowing he’s ok is enough for me right now but if this takes more than an hour or two then I am going to start going through cute baby withdrawal.

Thanks to everyone for all the kind words, thoughts, and prayers over the course of this whole thing. Your support on Facebook, this website, and over the phone have really helped us get through this. From the bottom of our hearts, thank you.