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Showing posts from December, 2012

12.30

It's a bit daunting to openly spill my heart to a world of people I probably don't know deeply. It's my hope that maybe we can know each other a bit more by sharing about Ty through this blog. I'm thankful for this space to share and I'm deeply grateful for our friends who set it up for us. We will continue to give deeper updates on Ty through this space. It's very easy to hide my emotions behind the quick Facebook updates and although those are great for disseminating information, I think this blog better serves as a way for Ashley and myself to express our more raw emotions.

First, let me say thanks to my wife for letting me dally with this blog thing. You see, she is a pro in the blogging world. Her site, www.pumpkinpatching.blogspot.com is renown for amazing photos of my family and amazing insight into her life as a mom, wife, nurse, photographer, vegetarian/vegan cook and Christ follower. I could sense that she was a little hesitant when I s…

Christmas 2012

This was a Christmas like no other! I would have never thought that I would be juggling my time at home with my two kids and back at the hospital with Ty.

The kids had an amazing Christmas, Phoenix Children's Hospital had a Santa's workshop where parents/families of children admitted could go and receive gifts not only for the sick child but for the entire family. I felt guilty thinking I can afford gifts for my children and then I put my pride aside and enjoyed the blessing that was right in front of me!

merry christmas

She wrapped him in cloths and placed him in a manger, because there was no guest room available for them.And there were shepherds living out in the fields nearby, keeping watch over their flocks at night.An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified.But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people.Today in the town of David a Savior has been born to you; he is the Messiah, the Lord.This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.” Luke 2:7-12



Progress

what a day it was yesterday! first, he extubated himself the day before  (he pulled his breathing tube out) they tried to see if he could breath on his own but he was working to hard so they replaced it. all he needed was a good night and they were finally able to wean him off the breathing machine yesterday (12/23)!!! he is doing so well without it.

he was restless all day yesterday between extubating him, decreasing his pain and sedation medications and finally ummm pooping lol! however, it was so comforting to see him wide awake and moving. i had not seen that since they day we brought him in.

this little one is a fighter and a feisty one at that. i went home to have dinner as a family (trying to keep things semi normal for my other babies) and in the whole hour i was gone he pulled his chest tube out!!! remind you it is stitched in. the nurse said he was most likely kicking at it all day and it finally dislodged last night. his lungs were still wet but they said they …

12.22

today was a slow day.  we had high hopes the night before to wean him off the ventilator (his breathing machine) so we were slightly disappointed when he didn't tolerate it. my husband keeps reminding me that we need to cautiously optimistic.  i can not get sad or anxious when we dosen't respond immediately to weaning. however, they did wean and finally discontinue the nitric oxide they had flowing through his ventilator. the nitric oxide helps with his pulmonary hypertension. this unfortunately was created as a result of compensating for his poor heart. pulmonary hypertension is a high blood pressure in the arteries of the lung which as a result make the heart work harder. as a result the right side of the his heart has become enlarged. his enlarged heart on his chest x-ray is what gave the ED a red flag that he was not in there for an infection but for a cardiac issue.

good news is that on friday 8.21 he got a nasogastric (NG) feeding tube placed.  he started…

new blog for Ty

*taken from a new blog created by friends to keep everyone update on Ty's condition and journey*
*please visit tythomasellis.blogspot.com*

 i am not sure where to start. my friends created this blog to help keep family updated and to help support us as a family through this trying time. thank you so much for all the prayers, comments, texts, calls and support from ALL of you! we may have not respond back to everyone but please know that we are so grateful to all of you and the love you have shown on our family especially little ty.

funny how i am a blogger and now i can not seem to find the words to describe what we are going through. i can tell you for a fact that if it where not for our faith and the strength and peace that God promises we would not be able to get through this.

ty was diagnosed on tuesday, december 18th 2012 with Total Anomalous Pulmonary Venous Return. he had open heart surgery on wednesday, decemeber 19th 2012. we had just under 8 hours to process …

in lieu of a christmas card