HollieGomez
04-09-2009, 11:23 PM
I don't post very often, but I am super excited and wanted to share some good news! :D The doctors are finally talking about letting me bring Elaina home!!! I know that there are a lot of new families in the group that might not be familiar with my family, so here's a little history. Elaina was born in January of 2008 with Tetrology of Fallot w/pulmonary atresia and VSD she also has coronary fistulas that are unable to be repaired without stopping her heart. She had her BT shunt at 10 days old, was home for 2 weeks, caught RSV and spent 3 weeks back at PCMC. Home for another 2 weeks, aspirated and was lifeflighted back to PCMC for another 3 weeks. Home for 2 more weeks and admitted back to PCMC (on May 18) for fevers which turned into heart failure. She had her Glenn done on June 12th. It didn't work and had to be re-done 6 days later. She then was sent to cath lab for a coil occlusion. Her sats were in the high 50's and low 60's. It looked like nothing was going to work and the doctors advised me to let her go. I didn't agree and she continued to fight for her life. I was told at that point that the only options I had were to take her home on hospice with a full Do Not Ressutate in effect or transfer her to South Davis Community Hospital in their Long Term Acute Care unit. I was told that she probably wouldn't sat above 75% (on 3 liters of oxygen), and that as she grew her pulmonary arteries wouldn't grow with her due to her severe pulmonary hypertension. They didn't expect her to live to her 1st birthday. I opted to send her to South Davis because I was unwilling to give up and go the Hospice route. She spent 143 days at PCMC in that admission. Since transferring to South Davis she has improved tremendously! She's down to 1 liter of oxygen with sats of 85% (ha!) and is gaining weight so well that they are cutting down her calories. She will be 15 months old on Saturday and weighs 23 lbs! I am so excited at the thought of finally being able to bring her home. It won't be immediately, we still have some kinks with feedings and electrolites to work out. She has a cardiology appointment on May 27th and if her Cardiologist agrees, then I can probably have her home some time in June! The best part is that she won't be coming home on hospice, she'll just be coming home because she doesn't need to be in a hospital environment any longer. :) I am so excited for this light at the end of the tunnel, and I'm so grateful for a group that understands! I didn't mean to turn this into such a long post, but I thought it was important to understand what Elaina has been through this past year so you could know why I am so excited about this!
Thanks so much!
Hollie mom to Ben 6 yrs (HH) and Elaina 15 mo (TOF, PA, VSD, DiGeorge, etc.)
http://www.hollie-walkingthefineline.blogspot.com
Thanks so much!
Hollie mom to Ben 6 yrs (HH) and Elaina 15 mo (TOF, PA, VSD, DiGeorge, etc.)
http://www.hollie-walkingthefineline.blogspot.com