Alex and Maddy

Alex and Maddy

Sunday, April 30, 2017

Waiting Game

All is going well here. Alex is feeling better overall. He is still nauseous and feels cruddy off and on, but such a huge improvement from earlier in the week. He has not had a fever since Thursday and his vitals all look good. I am not really sure what the week holds. When you have multiple doctors involved sometimes they all give you info that is slightly different. So I will update with what I know, but please keep in mind that a lot is "what ifs" right now, not set in stone so it may change.

Tomorrow Alex will have a repeat echo to look at a valve that enters the right atrium of the heart. That is where they think there may be a pocket of yeast. If they still see it, then later tomorrow or Tuesday he will be sedated for a trans-esophageal echo so they can get a better look. If they do decide it is yeast they will treat more aggressively and for a much longer time.  This is where it gets a little sketchy. Some of the doctors are saying if that it is yeast we can not replace his port. Others feel like we can replace the port. There is also some discussion that at some point he may need a heart cath to try and remove it.If they determine it is not yeast then the hope is to replace his port towards the end of the week.  At this point, Alex knows NONE of this. I did not want him to sit and stress about it all weekend. I will sit him down tomorrow morning because he will know something is up when he is having another echo. We will hopefully know more tomorrow.

As for my mom...I've had lots of questions. We had a great day on Friday. She stayed with the kids so I could run home and pack up some more clothes and do laundry. She was craving Chinese food so I told her I would bring some back with me. We had dinner, talked, laughed (boy did we laugh) and settled down to go to sleep. Shortly after we went to sleep she got extremely nauseous and started to vomit. She continued to vomit off and on ALL night. By 5:00 AM it was clear that we needed to do something. I asked our nurse how I could get my mom next door to the adult hospital. The security guard was kind enough to drive her over and our nurse rode with her to make sure she got into the ER safely. (Have I mentioned how incredible our hospital is?).  We really thought it was food poisoning based on how sick she was/the timing. Her labs do not look like she is "sick". Her initial testing looked like she might have a back up of stool but they gave her something and despite being on phenergan and zofran around the clock she is still nauseous. She is currently in their observation unit, but since she still cannot keep anything down they are planning on admitting and consulting GI. I have walked over a few times and checked on her. (It is literally across the street). She sounds SO much better today, but clearly cannot discharge her until she can eat and drink.

Thank you to everyone who has offered support in so many different ways. We are so blessed to call you all family and friends! Please pray for Mom to feel better and for clear cut answers tomorrow, but mostly for my boy's health both physically and emotionally as we go through this week.

Ali

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