Thursday, August 7, 2014

Okay I am a bit more calm.

We are home and I am more calm. Sometimes my emotions get the better of me so I will take a step back and try this again. When the nurse called from the ER I understand the full test had not been completed in regards to reviewing the organism that was growing in Jude's vile. Therefore they had to react based on their best educated guess. In medical terms they needed to get Jude in the hospital stat to evaluate his situation. I think I was just completely beat down with the entire situation but still only wanted best for Jude. So let's go through the actual realistic good and bad.

The good news is that Jude is very smiley and he is reacting to everything I say to him which is awesome. He is going to the bathroom normally, he is darting his eyes at us, and when his o2 level drops we can easily bring it up with suction or oxygen. His heart rate is still extremely high at times but it dips up and down. That's good because it isn't consistently staying high. So see there are really GOOD things about his situation! When I post you hear the negatives because I am stressed, but there ARE positives.

The not so great news. I have switched to Snow White mode so I won't say the craptacular news. Jude's heart rate is ranging between 140-196. He threw up again when we got home. His heart is not normal. I thought I would share a note I sent to one of Jude's doctor's tonight so you could better understand the situation at hand. Both the positives and the negatives and my thoughts process.

Title: Jude Ortiz..............AGAIN

"Believe it or not I got a call today at work that we needed to bring Jude back to the ER immediately. Once we got there we learned Jude's blood culture from last night had growth. However, it read under a microscope like bacteria from skin so they took another blood sample. The hospital will contact us if they see any growth within the vile within the next five days. I highly doubt they will because Jude looks good. In addition they said that Jude's EKG was irregular. They said he has tachycardia which we already knew. Jude's HR is running between 140-196. However, they also said the right side of his heart is not working correctly. They mentioned two issues but the only one I can remember is a conductive issue. I have noticed Jude's congestion has greatly increased and I am wondering if it's because his body isn't filtering correctly. I guess and speculate a lot, but I know something isn't right.

The good thing is that Jude is still smiling! The rest of his vitals are normal except his o2 dips sometimes. It's easy to bring up with oxygen and the heart rate goes up but comes down. All positives!!!  

The doctors keep saying this is a compound of various issues, but I am wondering it it's actually just one issue. I am wondering if the Baclofen can relax Jude's body to the point it is stressing it out. Maybe his heart is beating faster to send o2 to the rest of his body because of the muscle relaxer. I was told if he is stressing out this could actually cause the tone issue and I have noticed that he gasps for air like sleep apnea, but while awake. I know they think the tone is caused from the lack of Baclofen but could it be the exact opposite? I am wondering if the tone combined with Jude not getting enough oxygen is stressing his body and heart out.  This combined with his chronic lung disease is creating a possible serious complication with Jude and possible future heart failure. This could be reaching a bit.  

I have some experience with heart failure. I personally cared for my grandmother for 9 years and she had congestive heart failure we had to take care of. So I know the signs and also how quickly it can rear it's head.

Luckily they sent Jude home again (the best place for him)! We are still having to watch him carefully and now we have orders to see a cardiologist ASAP! I know this is long and drawn out but I am wondering if you have any thoughts. I know every doctor has his own specialty but I am so beat down! This Baclofen pump procedure has been very difficult on us. I know there are parents that hover around machines searching for answers, but rest assured we evaluate Jude as a whole.  

Signed Sleepless in Roanoke (lol),


I may get zero reply. They may reply "you are insane please go see a shrink" or they may just put this on record which is what I am wanting. I hope this sheds a little light on our current situation. I know it's hard reading and knowing exactly what is happening.

As I go to put Jude to bed his current stats are 93 o2 and 168 hr. He is pale, but happy. Just vomited but talking. He is our little mystery. I think Jude is just going to require closer monitoring. I don't think we will have any type of definitive answer regarding a particular disagnosis except that Jude isn't a normal child. So we will continue to take it a day at a time.

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