My Poor Baby

 

Back at Children's - Sunday morning Michael started running a low fever and had a minor cough so we decided to start treating it with Tylenol and keeping him home so that he wouldn't get any worse. Tuesday his fever spiked to 103, he started shivering then turned purple on his hands and feet and then he passed out. I called the ambulance and on the way to Children's his fever spiked higher to 104.9. Once we were in the ER he slept comfortably on my chest but again started to feel hot. At this point his fever had gone up to 105.3. There was originally talk from the paramedics that he may have had a seizure from the fever at home because we had described the shivering. The doctors and cardiologist at Children's feel confident that it was not a seizure and that this little guy was just really sick. I agree.

We were admitted shortly after we arrived so that they could monitor Michaels rhythm for the night. The next morning lo and behold - I got sick. Jaron came to switch me and it snowballed from there. I got worse - then Michael got worse. He is still having episodes where his fever spikes to 104-105 and then his limbs turn purple and they don't know why. The x-rays show signs of bacterial pneumonia so he is being treated with antibiotic and fluids. He can only drink apple juice and water (and that with the antibiotic you can only imagine how sore is bum is). He's been trying crackers and snacks but he is so exhausted he hasn't stayed awake long enough to finish a whole lot.

Michael is also not too fond of his crib. Because he is so tall we need to put the rail to the top and then bring down the plastic curtain. It's a pretty sad cage - lol. Every time Jaron has tried laying him down he cries so the whole time he's been in Jarons arms in a pretty interesting recliner. They're not too bad if you don't have to stay sitting in them for 48 hrs straight. Jaron can let you know that once you reach 48 hrs you'd rather sit anywhere but there.

We've had some amazing family and friends helping us this week. Jarons mom and brother and sister have gone to relieve him of his duties (if Michael permits) and they've been supplying him lunches. My mom also stayed the night last night so Jaron could sleep at home which was a dream come true for him lol. It was pretty funny watching him lay down. He's still not out of be this morning.

Michaels Cardiologist went by the room with an update. His echo was good and his heart is the same as last month so there is no worry right now about this effecting his heart. His left lung is the thing giving him his troubles. His left lung is what is holding the bacterial pneumonia and is also barely able to pump any air. He is on heated high flow oxygen and doesn't seem to mind until his nose is being wiped. They are expecting to keep him for the next couple days to see if his left lung improves. I have yet to see my baby except over Skype on our phones. He hugs the phone and gives it kisses when he sees my face. I love this little man and cannot wait to be able to hold him and comfort him. I miss my baby so much.

Thank you for everyone's help and support through this week. It is not my favorite time but it's definitely not the worst of times. Heart Hugs and Kisses from you Cardiac baby and Fam. We love you all.

Echos and Updates

I've been meaning to write an update on Michaels last Cardiology update and now I have two updates to write because I took so long to get the first one done. Michaels last Cardiology visit went pretty good for the most part but he refused to sit still for his Echo so they weren't able to get very good pictures of his heart. They even tried giving him the anxiety sedation which doesn't put him to sleep but made him act a little drunk. I felt bad for laughing at him so hard but he really enjoyed it. They got a few of the things they needed so that they were at least able to give us a little information. His heart looks ok, but not great. They are still watching the gradient through his mitral valve (the pressure build up of the blood that is trying to flow through it) and it seems pretty stable as it was the same as last time. They are also keeping an eye on the scar tissue build up from his open heart where they fixed his arch. The scar tissue built up on the inside and is borderline obstructive.  We may have to have that fixed or ballooned again in the future if it becomes a problem. They also decided that he is doing well enough that we can try taking him off his heart meds which is HUGE for me! That is four alarms I get to disable on my phone. He's almost weened off his last one and then in July they'll be sending us a heart monitor to see how he's doing off the meds.

Mike has a few new tricks up his sleeve that have me rolling on the floor. When he gets REALLY upset - he goes into downward facing dog. haha it cracks me up. He's also been climbing up and over everything he can. This includes Zoey and our dining room chairs. He is a little dare devil that loves to get into mischief.

 

He's also getting some pretty big curls. This kid is freaking adorable!