Evan’s still doing it in his own time. Prayers for Zealen.

Posted on September 30, 2012 by Sarah 1 Comment

 

Here is the sweet baby Zealen we mentioned the other day.  Z’s previous procedures went so well, and now he is very sick and needs all the prayers you can give.  Have a prayer chain?  Add him to it.  Since that post, he has really struggled.     Eventually he will need a heart transplant but currently he is too sick to even be listed.  Please pray for his body to stabilize, for healing, and for him to get to a place where he can await a new heart.  Z’s motto is “Just Keep Swimming…”  and we want this cutie pie to get better.  I would love for he and Evan to be friends someday.  He has a mighty huge road ahead of him but nothing is impossible!  His parents are a young couple and they have acted far beyond their years with the grace with which they have shown throughout all of their ordeals. If you want to follow along, his parents have a FB page for him: http://www.facebook.com/ZealensCarePage 

We were hoping that we would be home by now, but during an xray on Friday they saw some extra post op fluid around Evan’s left lung. They changed his medications a little giving him more diuretics to pee off the fluid. That worked very well…we couldn’t change his little diapers fast enough for a couple days. Just to be extra cautious the cardiologists decided to hold us here for the weekend. We were pretty disappointed but we understand their hesitation and don’t disagree. Another xray is scheduled for Monday morning and if that looks good then we’ll get to go home. I suspect that it will be fine, his oxygen saturation looks great, lungs sound good, and he’s back to the weight he was before surgery. Tonight should be our last night sleeping in the hospital for a very long time. I can hardly believe that it’s going to be nearly a year and a half until we have to come back for another surgery. By then Evan will need a backpack for his chest tubes and one of those bubble enclosures that he can’t climb out of.

Other than that there has not been a lot going on. Evan has been in really great spirits most of the time. He is teething again so he can get pretty fussy if you don’t keep the meds coming. How many babies do you know that get Oxycodone for teething? There are some benefits to teething and having surgery at the same time. Evan has been crawling all over the place and pulling himself up to stand over and over. He’s so proud when he pulls himself up. The folks over at PhysioKids are not going to believe how much progress he’s made.

We’ll need to be extra careful with him over the next six weeks because his new incision, under his left arm, is much more tender than a chest wound because they had to go through muscle. Also we’ll likely be going home with supplemental sodium for him because his levels have been a little low. One more week of IV antibiotics and the PICC line can come out of his leg and we’ll have our wireless baby back!

Here are some pictures from the last few days here. Be sure to read the captions at the bottom of the slideshow pictures for some explanation on some of them.