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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.

Friday, September 28, 2007

D&C 6:36

"Look unto me in every thought; doubt not, fear not."
The surgery that was planned for Monday is off until further notice. Alex went to a sedated Echo yesterday. We got up as usual and got ready. We had to be at the hospital around 7 am.... After checking in we went down and waited for a little while and talked to the nurse who does sedation. After finding out how nervous she was to use the Verset again ( we ended up in the ER last Monday), we decided that the best option would be to go under general anesthesia in the care of Dr.s and nurses who would be able to do something if Alex did something uncertain. So Dr. Su came in and talked to me a little while about the cardio cath. While the aortic arch was much better, he was very concerned about the function of the right ventricle. The only functioning ventricle. We would have to wait until the echo was over to get conclusive evidence for our next step. They wanted to check and see if over the last week the ballooning had taken some pressure off of the ventricle and was it improving. Jeff was working and I knew most of the day would be sitting, so I called my mom to come and hang out with me while we waited. Finally he was able to go in for the procedure. He had a rough time coming out of the general. We got him to eat something and keep in down and we met with Dr. Su........ Well, the function of the ventricle is very bad. There isn't much bad below it. Dr. Su is amazed Alex is still eating and gaining weight. So we have two options.... The first being to let Alex's body do what ever it will to gain back function.... or to take some drugs that will help improve function. We decided to give him drugs... Alex will be taking Enalipril (which he is currently in a study for and we don't know if he is taking the actual meds or a placebo, but will be taken out of the study and given it for sure) and dejoxcin (sorry I have no idea how to spell it) some believe this to help and some don't, we don't have a choice we just have to try it. Now, if the meds work and he gets strong enough, we will reschedule the Glenn. We don't really have a time frame for how long this will be. If the meds don't work and we continue to see increase blue and saturation drops, we will rethink Alex's situation all together and consider a heart transplant.
Jeff and I are trying to be strong. I feel sick to my stomach. We haven't really processed everything yet... it is frustrating.

11 comments:

Quinney Family said...

"...I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up."

Our thoughts and prayers are always with you,our dear friends and sweet little Alex. He is a champ and what a miracle he is, your so blessed to have a piece of heaven in your life.

Eric Quinney

Angie said...

Hey Homer Family:

I don't know what I can say to be helpful. You all are so strong, and I just want you to know we are here for you and we are praying for you!

The Nadaulds

Melissa said...

Homers,
Wow. It is amazing how much things can change for these little ones from one minute to the next. I hope the digoxin and time will help Alex's function! Elaine was on digoxin for a year or so at home. I hope you don't end up needing to go through the whole transplant phase. It is the hardest! You are in our prayers! Thanks for keeping us posted!

Jennifer said...

Do you know how much we love yall? Because, we do. And we will be right next to you (or at least next door to you) for it all. Give Alex little kisses on his toes for me.

Mike and Rebecca said...

Brynn,
I am so sorry to hear about the turn in events. This heart thing can be so gut wrenching at times. I hope and pray for the best for Alex and you know that if you guys ever need anything we will be there for you in any way possible. Even in your toughest days please always remember that your family is surrounded by people that love and support you guys!

A BIG HUGE,
Mike,Rebecca and Brinley Patton

The Curtis Family said...

I am so sorry. Do you have to stay in the hospital while this is happening, or does this take place at home with frequent follow up visits? Brynn, you are such an amazing person and have a HUGE support system. Please take advantage of it. Let me know if there is anything I can do. As you know we live close and I can help out where ever it is needed. We won't need to add Alex to our prayers because he is already there along with Ian. Take care during this roller coaster ride and keep us updated.
--Allison

Jenn said...

We sure love you guys, I told Jeff that I will start to be stronger on my own so Heavenly Father won't have to keep sending you to the hospital to comfort me. You are such a big help to us and I hope we can do something for your family. We are grateful that you are on the home side of this and get to be together. We love you and will always be here for you.

Anonymous said...

Brynn,
We will continue to keep Alex and your family in our thoughts and prayers. Hopefully the medicine, and your love, will be the best thing for him right now. Please let us know if there is ANYTHING we can do for you.
Michele Kingsford

sstar said...

Hey guys. Add us to your list of prayers going up for you. Thanks for keeping us all updated. :)

Esther

Andrea said...

Homer family,

Your family is always in our thoughts. Thank you for always updating during hard times. Alex sounds like such a strong little man.

Anonymous said...

Brynn -

I am still checking on you daily. Your family is in my prayers as well!
Also, people you don't even know are checking on you and praying for you too!

- Alayna Williamson