Prayers for Robin

Robin, one of our greatest and best friends and practically a second mother to my kids had a stroke on Sunday. Please keep her in your prayers. She is recovering well and the part of the brain affected should repair itself with therapy and time. We are thinking of you Robin!!

Reflecting on the Glenn

Tyler 1 day post op still looking pretty swollen.
Scott checking up on his brothers heart.
Round 2 of the pulmonary perfusion scan.
Talking to Daddy on the phoneHappy to see Dad instead of talking to him on the phone.

I want to write a few of my thougths about the Glenn. We went in with peace and felt it would be a short hospital stay even though we planned for a long one. You never know about infection, arrythmias, and the unexpected. I didn't expect that Tyler would be so attached and aware of mom and dad. I left twice at night and realized that it was too hard for me and more importantly hard on Tyler. You soon find out how to comfort, relax and help your little one get to sleep amidst all the lines that he is connected to. I realized how much all the nurses and doctors meant to us and how much I enjoyed and appreciated their company. The stay isn't bad because you get to know others and they get to know you. I am so thankful for becoming friends with Allison and Josh. It is so nice having another mom going through and understanding the things that you are going through. Overall, even though I left exhausted from night feedings, constant rocking and emotional ups and downs, I am grateful for the time we had at UCSF. Tyler continues to touch lives through his example, patience and love. Everyone talked so highly of our cardiologist, Dr. Cooper and his nurse, Anne, who I grew to appreciate more and more for all they do. We went to the park this morning, have a happy baby and are grateful he is doing so well. His heart truly is a miracle. For me, the hardest part of the past couple of months have been his GI issues and constant crying. I don't wish the pain and discomfort of his gallbladder pain on any child. Even though his heart surgeries are hard on him, I don't think that he felt the pain he did for long long with his bile duct issues. I am grateful that this is on the mend as well. I feel like we are finally starting to function normally again.

Thank You!!

Sigh....We made it!! We are so proud of our little man for being so strong and patient with all that he had to go through as well as Scott for being so good when we were away. It was a smooth surgery, we had a great time seeing our UCSF "family" and getting to know so many of the doctors, nurses and families better. We are especially grateful to our surgeon, Tony, and his team, the many great nurses; Julie, Eric, Asunta, Sara, Bob, Emily, Simone & so many more, The Smith's and Baby Joshua for their friendship and example, the doctors, Jeff, Dr. Stanger, Osama, Bupi, Tom to name a few and all that touched our lives. We spent the last three days in the transitional unit being roommates with Joshua and Allison which was quite fun amidst the hospital setting and stress. Keep Joshua in your prayers. He also has HLHS post Glenn and is scheduled for a pace maker on Monday due to arrythmias. Here are some pictures. I will write more later.

Coming Home

Ok, we are supposed to be coming home today. Everything looks good except for a minor glitch in a pulmonary lung flow scan that needed an iv in the arm and not the leg. They got an iv in this morning, which we are all happy about since his arms and legs are shot. They think that one side of his pulmonary artery has stenosis in which we would come back in 5-6 weeks for an angioplasty in the cath lab. That should be a relatively simple procedure (I guess it is all relative), but we are pleased with how everything is going. Need to get back upstairs before my little boy wakes up. Thanks for the prayers and thoughts.

Superstar

Tyler is off oxygen! They moved him from 7 east to 7 north, which indicates he has progressed to the point where he doesn't need constant monitoring. He has been eating a ton and smiling. Scott and I went with my mom to golden gate park and Heidi stayed with Tyler while they transitioned him to his new residence. They haven't said anything about a release, but if his fluid output is at a reasonable level, they'll take out his drainage tubestomorrow and then release him a day or two later. It could be as soon as Friday! We'll see.

What color are his eyes? Let's have a poll. Everyone says something different.

Glenn Post Op - Day 3

Tyler is doing well. I got my first smiles this morning and he loves when we read to him. Everything is progressing nicely. He is getting back to his skinny self. He is in and out of pain and we are trying to find the balance so he isn't too uncomfortable but also not so dependent on Morphine. He came back after his first surgery with such bad drug withdrawal that we are trying our best to console him without constant narcotics. They had to take out his last IV and arterial line today because it was sluggish and swollen. He has a cardiac line where they can draw blood and give meds that go directly to his heart. They will hopefully get an IV in by tomorrow when they take out the cardiac line. They are hoping to take out his drainage tubes tomorrow which older patients say are very painful. I am enjoying being with him and am so appreciative of all his great nurses and doctors. They truly become like family when you are here. We are so proud and grateful for our little guy. How blessed we are. We are hoping things continue to progress nicely.

Recovery in 7 East

Tyler is recuperating nicely. He has been doing well without the breathing tube and only takes morphine every 4-6 hours instead of every 2 hours, which is the norm. When he's awake, he is alert and content. He has been feeding from the bottle and had 2 bm's. Everyone is pleased with his progress, especially us! Here are some pictures from Sunday, 3/2/08.