Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, May 10, 2007


Well Alex has Chylothorax(I think Andrew had this too?????) So he got chest tubes to drain the chyle. He is breathing much better since he doesn't have the pressure against his lungs. He will go on portegene for six weeks... so in saying that, I am going to give up on pumping. He then will go on pregestimile. 28 dollars a can. Jennylin and Eric buy theirs off ebay. Good thing we have them for the ins and outs of things. Other than that he is doing good. They still haven't taken him off the vent, that will come when he is ready. I just took care of a mini 911 situation. Ryleigh stuck a raisin clear up her nose. We tried to blow it out.. I tried to use the bulb syringe and suck it out... I even tried to flush it with saline. I resorted to running over to the Englands to have them help me. Jen held her head, Nate held a flashlight so I could tweeze it out.....NO MORE Raisins unsupervised..... Well that's it for today.


Anonymous said...

You have the best attitude about everything! You seem to see the positive in every situation. It's so inspiring. Your comments about Ryleigh's "emergency" had me laughing out loud! I'm glad she's okay and everything worked out. :)

Love, Joni

diane said...

Isn't it amazing what children will find to do to amuse themselves? I seem to remember Jeff doing the same thing with a chocolate chip when he was about the same age. Alex looked so much better last night when I saw him, eyes open and alert, just looking at everything, chillin' like a prince in his little bed. I'm always amazed at the love that I feel for this little boy whenever I get the chance to visit him. Papa and I have missed seeing Ryleigh as much, but we'll make up for it soon!!!

Grandma Homer

Anonymous said...

Ok Brynn, I just fell off my chair laughing about Ryliegh! Wow does that take me back to the day..... cockle burrs, beans, etc. etc. What didn't we pull out of your nose! I'm sure Ry comes by it "naturally"! We love you guys and have loved keeping up on the blog. You guys are so blessed and have bolstered my testimony so much. Thank you for sharing this with us. We are waiting for Ry to come ride the horses!!! It will be so fun!
Love and prayers always,
Love, Aunt Lisa

Jennifer said...

Anytime you need a nose picker, I have a tweezer with Ryleigh's name (not to mention her snot) all over it! We love you guys... hang in there.

Terry said...

That is so funny!! Reminds me of a peanut!! WE laughed then to remember. Glad things are going good.

Anonymous said...

Oh my goodness Brynn! When I opened up the blog this afternoon and saw "Chylothorax", my jaw just dropped! I hope so much that Alex does not have it as bad as Andrew did and that Portagen is the answer. Andrew has been on Portagen since February 23rd! That's way more than 6 weeks and we are still battling pleural effusion. Please let me know if there is anything you have questions about! I think I could write a book about Chylothorax and Primary's PICU!

Keep up the faith!

Andrea Mathis