Wednesday, August 19, 2015

Jude's heart and Emily's heart

Well after my major meltdown on Sunday I went back to work on Monday and I wasn't feeling that great. I attributed it to the meltdown and good cry. However yesterday morning I got up and felt like a semi had smacked me..........I was sick. ARGH! I had no time for it and I was just irritated. So I worked as hard as I could in the morning and went home around 1pm and slept as long as I could. I had some antibiotics on hand which I know is terrible but they are helping. So the family had to fend for themselves last night as I laid in bed recovering watching my favorite movie "Gone With The Wind". Mike was very proud he was able to order he and Emily Chinese food without my help. However...........Mike got food poisoning and is now home recovering...not even kidding. I am back at work and feel some better but I just sound like I am talking into a fan. 

Jude is doing okay. I heard his alarms go off throughout the night so I know he was having oxygen issues. He also keeps continuing to have the heart dips that I talked about in my prior blog. Despite my new medical education I cannot figure out what that could be other than a weakening of the heart. Charlotte did experience the heart issue a few times yesterday. I experienced it a few times last night but today Charlotte has not seen it happen. So I did call hospice just to let them know what I am seeing and we are all a bit baffled. For my medically educated readers here is an example. Jude has two situations he can have issues the first being Jude trying to clear phlegm and his oxygen and heart rate will drop. That one is pretty self explanatory however the other situation is when Jude is calm his oxygen will stay level but his heart rate will drop drastically even down to 30's - 40's. He will soon recover but it is something new and we are all a bit perplexed. I am wondering if this is a situation like a preemie would experience. Since the lungs are so damaged is his heart having issues properly pumping blood? 

Emily is doing fairly well since her boyfriend left. I know she feels very lonely and is trying to connect with her friends. She did start back training for miss teen in November. She is working out and connecting with her interview teacher. I believe starting back to school will really help her. 

Sunday we are having a come and go event for Jude's birthday. Some people have requested to see him and so we wanted to set something up. If you didn't get an invite and would like to attend it's not because I intentionally left you off. I have sick head, lol. So if you anyone would like to see him we are hosting the come and go event from 2-5 on Sunday. We have a few requests. 

1. Please don't come see him if you have been ill. 
2. Please don't judge my house because it's dirty and a mess.  
3. Please wash your hands before touching Jude. 
4. If you are bringing children please remember to explain to them that Jude is very ill and needs lots of medical equipment. Please watch them around his tubes and lines. Please also let them know Jude needs a calm environment. Loud noises upset him and can send him into seizures. 

With that being said don't let that scare you. We made it come and go so he wouldn't get overwhelmed and we are very good at controlling the house. If you want to see Jude he would love to see you. He does not need gifts just a hello. 


Reagan Leigh said...

Mitochondrial disease causes a weakening of the heart (along with all other muscles/organs over time)! Hoping Jude has a happy birthday sigh minimal health issues!! Poor boy deserves some good days! :)

Brenda said...

Praying Jude has a good birthday with lots of smiles! Hoping everyone else in your family gets better! When it rains it pours. I'm surprised that you and Mike aren't sick more that you are. Little rest and lots of stress add up after a while. Take care Hapy Birthday sweet Jude!