Wednesday, November 12, 2008

Quick morning check in

Wren has had a great morning so far. He woke at 5.30am just after I arrived and was happy to find me able to give "muk". We watched the Wiggles and danced the Monkey (waving his hands over his head).

Wren loves the new monkey (a Curious George stuffie he was given by Child Life yesterday). He also has a new blanket.

I am sure that many of you heart families will share my gratitude to those nameless and faceless women who knit blankets and sew quilts for children in hospital. I have a beautiful collection of little quilts from Wren's various hospitalizations. This one is yellow (the quilt) but the snuggly blanket he was given the first night is also beautiful. I remember being so surprised that the first blanket was OURS and we could TAKE IT HOME!!

Anyway, I became McGyver and created a rope from folded Micropore hospital tape and stuck monkey to it and looped it through some medical hardware on the ceiling. If we tug one end of the line monkey goes UP and if you let go he falls DOWN. Monkey can also swing and hoot and be kicked.

I bet this is good/bad for chest tube output but it was certainly fun.

I left for shift change and returned to find Wren napping.

How is he looking?
He has received no medication overnight and is in a good mood today. His swollen belly is a little less distended and his left IV is not leaking much. He is very happy and moves easily despite no pain medication. He also seems more relaxed with the nurses.

Hopes for Today
We hope to have the arterial line removed. It is in his right hand and we refer to it as one of "the big bandaids."

We also want to see chest tube output down significantly. It was still 120 CC over 24 hours but most of that was in the first 12 hours. It was much less (30CC??) overnight.

Blood gases were great, platelets up to 218 (from 183 yesterday) and his hemacrit was in the 40s (was 30 yesterday) after his blood transfusion.

I wait to hear how the X-ray looked. I would like to make it back for Rounding around 9.30am so I should head in soon.

Backing up in the CVICU
The natives in the CVICU (our two older bedmates) are getting restless. Both are almost able to be discharged from hospital but neither have left CVICU. Granny mentioned that they may speak with their social worker about costs because the CVICU costs are significantly higher and their children do not require (or desire) to be there. They want to "work something out."

We are still happy to be here but we expect to hear talk of moving to the floor today or tomorrow, which means it may be days before he gets a bed! He needs to get a few more lines out before he can move.

I was told that five surgeries are scheduled today!

Heart Valves from Stem Cells
It is with mixed feelings that I read todays press release from the AMA conference saying that a research team is 5-7 years away from transplanting cord blood developed heart valves for children like Wren. It is so exactly what we hope for one day that I am inserting a big part below. I hope that these valves can be developed even if you don't have the cord blood from your own child. I feel sick at the thought that we could have saved Wren's cord blood and given him a chance, but didn't. I think I recall Dr Lewin saying something like if they do get this kind of technology they will be able to grow valves with donated cord blood.

Cardiologists at the University Hospital of Munich say they are 5 years to 7 years away from transplanting new heart valves into children with faulty hearts, derived from the children's own cord blood. The researchers reported the findings today at the annual meeting of the American Heart Association.

Heart valve abnormalities are one of the most common kinds of inherited heart defects. In these babies, the valves are too narrow or don't close as they should, keeping blood from flowing properly. While surgeons can transplant new valves from human or animal donors, or from artificial material, these valves won't grow as children do, forcing kids to undergo repeated operations to outfit them with new, larger valves, said Ralf Sodian, the cardiac surgeon who led the research.

``Imagine you had a child with congenital heart disease and this child has to be operated on every 2 to 3 years,'' Sodian said in a Nov. 7 telephone interview. ``It's very hard for children and parents. The goal is to do surgery once that would last a lifetime.''

Sodian and his colleagues collected umbilical cord blood from babies as they were being delivered and isolated a key group of stem cells that form the main tissues found in heart valves. After freezing the cells for 12 weeks to preserve them, they seeded those onto a biodegradable polymer scaffold in the laboratory.

The eight bio-engineered valves created by Sodian and his team acted much like natural heart valves when they were tested to see how they would handle blood flow and pressure, he said. The scaffolds will dissolve over time, leaving behind a fully formed structure made from the cells, he said.


I hope this works - at least for all those kids who need heart valves in the decades ahead.

1 comment:

Heather Jandusay said...

So glad to hear that Wren continues to improve so much each day. What a strong little boy he is! Thanks for keeping us so informed.. Is it possible for us to send Wren a card? Kyler is very anxious to give him a card that he made the other night. If not, we will wait until you get home.