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.

Monday, May 7, 2007

Things go as they go!

It seems like things will go as they go. As I wrote before, they wanted to try and take Alex off the vent on Fri or Sat. He didn't end up having it done until yesterday. He struggled most of the day to try and remain calm, because they also try and ween him off his major meds. He does this crazy thing where he will clamp down, hold his breath and turn totally blue when he is so so mad. It was hard to try and stand over him and calm him, and not be able to pick him up and love on him. The nurse tried her guts out to keep him off the vent but last night they decided to put him back on. Plus, I was feeling weird about this onset of swelling in his face and neck and the Dr. decided it was also a concern, they wanted to run an ultrasound and put him on heparin to make sure it wasn't blood clots. The ultrasound team was there this morning when I arrived. What a relief to hear the "all clear". They aren't sure what was causing the swelling, but I thought he looked much better today than last night. So, although he is back on the vent, I know he needs a little more time to get stronger. He can do this. They did remove his last drainage tube and his pic-line, these are still small steps. I must have really needed the comments from everyone because they have buoyed me today. Thank you


Anonymous said...

Brynn, Please remember baby steps! All journey's worth traveling are made one step at a time. I know that's hard but you are so strong, much stronger than you know. Keep looking up and the strength will continue to come! ;) Baby steps.

Joni (or "J")

Angie said...

Brynn! It was so great to talk to you this morning! I Miss seeing you at church and in the neighborhood! Alex is a strong little guy! He is pulling through so well! Hopefully he will gain some extra strength soon and can have the ventilater removed. I am thinking and praying for your family always!

Rob and Kathy said...

I just finished talking with your mom. She told me about little Alex's struggles yesterday and my heart goes out to you and Jeff. It is so hard to watch them struggle and have set backs. But this will help him to get stronger. He can do it. He can! You are so amazing and I know that you are helping him so much by just being there with him. Soon he will be back in your arms and you will be doing all the get ready to go home things. Keep positive and know that we all are praying and hoping for Alex to continually progress even if it means the small steps. I am so glad that his pic was removed and the last drainage tube. It is a good feeling when they start removing tape and tubes. Good luck with everything and know you are always in our prayers.

Anonymous said...

I am glad that Jennylin sent me the link to your Blog. It is a great thing to be able to keep updated on your little Guy! I wanted to come see you and the little guy but I have had the sniffles and not sure if it was a cold or allergies. So I have stayed away. Better this week so I will stop in and check on you. Please feel free to call if you need anything or want to venture my way for lunch (for a change)
589-3222 cell or work is 587-3450

Beth Quinney
Bryson's "Annie)

lishy said...

So good to read the update! It is all about baby steps at this point. I wish I could give you some good wisdom. It is ok that Alex is back on the vent. It is always good to give a little nudge and if they don't respond go back to what is comfortable(as it can be). Alex has made some great leaps and some small strides. I'm so glad he is moving in the right direction. I must have checked your blog 12 times a day and in the middle of the night the last couple of days! It's becoming an obsession! I don't want to keep bugging you all!Just know that you are on my mind and in my heart constantly! Love you Much!

Anonymous said...

The vent. We can so relate. Bryson only lasted about 15 minutes the first time he was extubated. Then after a few days thry tried again and things went much better. 2 steps forward and 1 step back, that is how these kids seem to go. Just remember to look at the great progress he has made. He is a fighter and we are always praying for you guys! Jennylin

Anonymous said...

He has your sprit, and will continue to fight with all his might. Sorry I missed your call and want you to know that I send you all our love and prayers. Tell Jeff and Ryleigh that we send hugs. You two are so amazing and we are greatful for all that you have taugth us. With love The Farnworths

Mike and Rebecca said...

Brynn I'm glad to hear that Alex is making small steps towards his recovery, getting rid of the last chest tube and pic line are great things. Brinley is cute she has said in her prayers about praying for Alex and Bryson's recovery. I hope and pray that things will continue to get better going forward and that you guys can go home soon, as a family. Thanks for your friendship!