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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.

Saturday, April 28, 2007

Challenges!


We have had a hard couple of days. Sorry that it has taken so long to update with the news. Well, Alex couldn't raise his saturation levels, they have been watching him very closely but they finally decided to do a bedside exploration. This was scary enough. They we able to determine that his lungs had started to become unswollen faster than his heart. His sternum was beginning to collapse on his pulmonary artery on the right side; and on the new piece they added to his heart called the Sano, on the left. So they put a strut into his chest that held open his sternum. Alex made little progress. They needed to find out why at this point he still wasn't improving. So yesterday they ordered a cardiac cathiterization. This went through his groin, up through his chest and into his heart where they injected dye to see what blood flow looked like and what the structure and function of his specific heart was. At around 3:30pm it was disappointing to find out that his new Sano had a pinched end and Alex would need yet another surgery(Yes, that is 2 surgeries in a matter of 4 days.) We were scheduled to go right down and Jeff rushed to find someone who would help him give Alex a name and a blessing. Which was beautiful. Things around here tend to change by the minute because a little while later they needed to do a more critical baby and we waited to find out when his surgery would be. At about 9:15 pm Dr. Hawkins came in a asked Jeff and I what we would like to do (if they should do the surgery that night or if they should wait until the morning). We both told him that he should make the call. He decided this morning would be best. Jeff and I went home last night, to try and sleep. We must have been exhausted because as soon as we hit the pillows we were snoozing. We got up early, this morning to spend time with him before. Alex is in surgery right now. What they would like to accomplish during this surgery is similar to the last but there are some changes. For one thing, they do not need to repair his aortic arch; this was accomplished in the first surgery and looks very good. They do not need to stop his heart. They put him on bypass but it is mostly precautionary. They will be doing a repair on his Sano. They will either cut off the defective portion and reattach it to his heart, or they will totally remove it and place a new one. Jeff and I both agree, we had so much time to prepare for the first surgery and felt like we new what was in store, but this part has been so hard. We can't imagine what it would be like to be undiagnosed. We will try and update with more info as we find out things. However, it might be crazy. We just hope and pray for our little man that he will make through and recover well.

7 comments:

Rob and Kathy said...

Brynn and Jeff as always we are thinking of you and understand the difficulties of any setbacks or complications. All of this is hard enough without having additional challenges. We hope you can keep your chins up and we hope for you every blessing that you and Alex need at this time. Rob and I were just talking to Marcus and we are all amazed at the miracle of even being able to repair a heart so small. It is amazing how these little guys can recover too. Alex is strong and so our his parents. Remember how much love Heavenly Father has for him and for you. He will help always. I am so glad that you were able to give him a name and a blessing. That is very special. I am also so glad that you have Dr. Hawkins to work with. He is brilliant and a very gifted man. We consider him a miracle worker. Audrey and Ryleigh played for a little while today and they had a great time. She seems very happy and doing great. She is so smart and so beautiful. I enjoy talking with her. She is a fun girl, just like her mom. Please let us know if you need anything. We are here to help and we know that things can quickly get overwhelming at this stage. We hope the day goes well and we will keep you all in our prayers. Love, Kathy

Anonymous said...

Brynn,
I just wanted to let you know what an inspiration you are to me. I love reading your updates about your beautiful little boy, and feeling your strength and example through your words. I am praying for you and your little man to pull through, as I know you will no matter what happens.
Prayers,
Esther Judd

Steve and Linda said...

Thank you so much for the update. We are constantly looking for more and more info often throughout the day. We are happy to hear that Alex's surgery went well this morning. Ryker had an awesome time yesterday afternoon with Ryleigh. It was fun to watch them play together. Again our thoughts and our prayers are always with your family in mind. We love you!!! Love, The Luthi's and Anderson's

Anonymous said...

Brynn,
Your strength simply amazes me. You really are a living example and I am in awe! Your love and strength both shine through your posts. Thank you so much for keeping everyone updated. Always praying for you and your family,
J

Jennifer said...

Jeff, Brynn, Ryleigh and Baby Alex (I can't seem to just call him Alex, yet)-
Thank you for letting us be your friends. The happiness level in our home just isn't as high without yall around.
We continue to pray for you constanly. We love you and we are thinking of you.
The Englands

Andrea said...

We are new to your ward and you probably don't know who we are, but I wanted to let you know that Alex and your entire family are in our prayers and our thoughts. We pray the doctors will be inspired to know what is best for Alex and you will too. We will continue to pray for you all!

Jeremy and Andrea Griggs and family

Angie said...

Brynn... I can't imagine how you must be feeling. I admire your strength! In the midst of all of this you still think of others and keep us updated! Thank you so much! We are praying like crazy for you!