A Bump in the Road

Last Update 8:30pm
He's out of the procedure and he came out fine. They found that it was a blood clot. Its not great news but the neurosurgeon said it was better than him having an infection in his brain. Isaac will also still remain inactive on the transplant list because his blood cultures came out positive just today. So, they'll treat with antibiotics again and we'll go from there. We're just hoping that the episodes he's been having are coming from the infection that he has going on rather than from his heart. Again, thanks for your prayers.


Update
They took him for surgery at almost 7pm. If this abcess is pus or blood and not a mass, then the procedure should take 1 to 2 hours. Hopefully its not a mass that they have to cut in and biopsy then it would take several hours. Please keep praying for him.

In addition to the blood cultures and genetic testing, an MRI of his brain was also ordered. His MRI was done this morning and they called us in for a conult. It turns out that they found an abcess on the back part of his brain. They are telling us that it could most likely be one of two things. One is either pus, which would turn out to be a bacterial or fungal infection or two a blood hemorhage. Either way, both are treatable. So today, neurosurgeons are scheduling a sort of biopsy. They'll go into his skull, drain out the liquid and test to see what it is. Because we were so scared when they called this morning to tell us that something "abnormal" was found, we didn't get to ask if maybe this situation was causing his episodes or how that abcess got there in the first place. Another bad part is that since it's still not known if the abcess is an infection, he is listed as inactive on the transplant list. I assume that if its a hemorhage, than he'll be put back on and readjusted on his anticoagulants to fix that. We are still waiting for the neurosurgeon to come tell us when they will do surgery today, so I'll try to update as I get information. Thanks everyone for all your prayers. God Bless you all!



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Rollercoaster!

Agghhh....we want to scream. Isaac had a few Bradycardia episodes two days ago. His heart rate dropped, his pressures dropped, and he started to swell again. And it seems that when he swells, his CO2 and lactates go up. Our doctors are still trying to figure out what's wrong. We think that because Isaac had been awake more, moving around, and coughing up through the vent tube, of course he's causing more secretions and needing more suctioning. I think some of the nurses just didn't realize that they needed to suction him more often. So his lungs have showed to be a little more saturated. He had just started his feeds a few days ago and was on almost full feeds when the episode happened. So they stopped his feeds and added a few more drips to his already growing medication. They don't even know what's wrong with him yet. They've drawn some blood for genetic testing to see if maybe something is causing the high lactates, but we won't get the results for a few days. The worst part is that he is also on a drip to keep him sedated. They think that the agitation of him waking up and moving around caused these episodes. Right!!!?? They don't even know what else to tell us. More cultures were drawn a few days ago and some bacteria was found that is growing in his lungs. So here we go again with another antibiotic. Thankfully, this will not affect his status on the transplant list. They'll just treat and still keep him active. I don't even know what to say anymore. We just keep going downhill with little hope of getting back up. I wish his heart would get here...especially now. Not to say that it would totally fix him...but at least it would hopefully fix all his heart issues. Now we just have to wait and see if anything else is going on with him. He can't seem to recover well enough for them to extubate. We're just waiting to see if any of the tests show anything else going on. Please keep praying. Oh, but I almost forgot to post something very important. Last week, Isaac was baptized. Originally, we had thought to wait until we got home, but we finally just decided to get it done.



So, Eli is still here and because Isaac is in CVICU, it hasn't caused any real major issues. We try to keep him occupied and so here he is playing one of our computer games (memory). He's very good at it and who would've thought a three year old to know even how to use a laptop....




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