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.

Sunday, June 3, 2007

Hurty bum

So Alex's bum is soooo raw. Luckily we have had the best nurses today and tonight. They have done everything to make him and us feel good. We love the nurses here. He did end up moving to the third floor this morning. We even found out that he loves the nuk binkies. The nurse loaded us up on a few. It was nice to have a visit with the Patton's today. Knowing these other heart families makes such a difference because, we are able to ask questions that the Dr. can't help with. Ry is staying in Orem and loving it. We aren't sure when we get to go home, but I am a little scared. Everyone tells me that is normal. Well I will try and update as we get more info.


Mike,Rebecca & Brinley Patton said...

It was great to see that Alex is doing much better and to visit with you and Jeff. It is hard work and takes a lot of time to have these special heart kids in our lives I know we are truly blessed to have such a great opportunity. Keep praying...things will be just fine.

Mike,Rebecca & Brinley Patton

Angie said...

Hey Brynn and Jeff:

You have been on my mind all day. I just want to let you know I am praying for that little boy like crazy! I don't know what it would be like to go through the struggles you are facing. But I do know the Lord loves you and He is comforting little Alex. I think the nurses and doctors up at the PCMC are straight from Heaven. THey have such a special calling in their occupation, and it is great that they are so wonderful to work with. My niece has been in PCMC on multiple occasions. She too has been hospitalized on a couple of occasions with the C-Diff infection. It is a tough infection to get rid of, and it is so hard on the little ones. But it is great to have the knowledge of the doctors and nurses to help you!We are praying for you. We are here for you if you need anything.
I can imagine it is intimidating to take this little guy home. The what ifs, and possiblities of what could go wrong, probably weigh on your mind like mad... if you need to talk or just need a hug... let me know.
Thinking of you,


Jennifer said...

Man, Hurt bum is NOT FUN! But, if Alex has to have something wrong with him right now, then I am glad that it is a hurt bum.
I can only imagine how scared both of you are to bring Alex back home. Like you said, that has to be completely normal... just remember, we like hanging our with Ryleigh at any hour of the day or night, so feel free if you need to make a run to the hospital to let Ryleigh come stay with us. We love ya'll and continue praying for you.