Roller Coaster
In support of
Paxman's Surgery Support
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Paxman's Surgery Support
It has been an emotional roller coaster of a week, with more questions than answers. Some quick updates from the last week:
- The chest tube came back out last Friday morning.
- On Saturday he was very lethargic, and on Sunday he started struggling to breathe again.
- On Monday we made the decision to send his information out to CHOP (Children's Hospital of Philadelphia) for a second opinion. The focus right now is on his lymphatic system having potential damage from surgery. CHOP is the best place in the country if he were to need surgery on his lymphatic system. We should hear back sometime next week on what their thoughts are.
This week, Paxton has gone back to:
-back to ICU status
-chest tube tap today ( drain fluid instead of chest tube)
-fluid restrictions
-TPN +Lipids ( IV nutrition)
-diuretic drip
-daily walks turned back to daily wheelchair rides
We're hoping for comfort for Paxton after procedure tomorrow. It has been a rough week for him as the fluid has built up and pushed against his lungs again.
Hoping for a path forward and some answers.
On a positive note, if you see our van around Ankeny/Des Moines this weekend, say hi to Elise, as she is coming home for two nights! I (Aaron) am headed to Omaha like normal this afternoon, but I'll be there by myself so that Elise gets some 1 on 1 time with Camden outside of a hospital setting. It will be a good weekend for both of them to be away for a little bit.
- The chest tube came back out last Friday morning.
- On Saturday he was very lethargic, and on Sunday he started struggling to breathe again.
- On Monday we made the decision to send his information out to CHOP (Children's Hospital of Philadelphia) for a second opinion. The focus right now is on his lymphatic system having potential damage from surgery. CHOP is the best place in the country if he were to need surgery on his lymphatic system. We should hear back sometime next week on what their thoughts are.
This week, Paxton has gone back to:
-back to ICU status
-chest tube tap today ( drain fluid instead of chest tube)
-fluid restrictions
-TPN +Lipids ( IV nutrition)
-diuretic drip
-daily walks turned back to daily wheelchair rides
We're hoping for comfort for Paxton after procedure tomorrow. It has been a rough week for him as the fluid has built up and pushed against his lungs again.
Hoping for a path forward and some answers.
On a positive note, if you see our van around Ankeny/Des Moines this weekend, say hi to Elise, as she is coming home for two nights! I (Aaron) am headed to Omaha like normal this afternoon, but I'll be there by myself so that Elise gets some 1 on 1 time with Camden outside of a hospital setting. It will be a good weekend for both of them to be away for a little bit.
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