Poppy is absolutely loving her new heart!! Just 24 hours after being extubated (taking the breathing tube out), she has been off of breathing support!!! Hallelujah!! I can see my baby’s face again!! She continues to tolerate her feeds as well. She is now up to 4ml/hr. She is doing awesome at her post transplant recovery!! Praise Jesus!! Also, Poppy is 3 months old today!! Happy 3 month my beautiful darling girl!!! You have been through so much already- you are the bravest one I know. Love you soo much!!! 🙂
When they extubated her on Thursday, the attending Dr. Musa noticed her head looked bigger, prompting a cranial ultrasound. We found out Thursday night around midnight that Poppy has Hydrocephalus http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm
Most likely due to her previous brain bleeds she had while on bypass and ECMO. Probably the improvement in profusion to her brain (thanks to her new heart doing such a good job) could be the reason for such sudden increase of fluid and pressure. She got a CT scan yesterday morning, proving to us she will need a VP shunt very soon….like early next week, probably Tuesday. This shunt will allow the fluid to drain from her brain ventricles (V) through her body to her pericardium (P) an area around her tummy. Today she will get a spinal tap to relieve some pressure temporarily and provide a fluid sample to check viscosity and other things in preparation for her shunt. Infection risk with the shunt is of great concern for Poppy because of her immune suppression to prevent rejection of her new heart, so it will be a balancing act between treating her brain and heart. Honestly, this has caught us so off guard and has been a source of anxiety and worry the past 36 hours, which would probably explain the delay in update. We are still trying to let it all sink in. Trying desperately to let God take it on.
The relief in all of this, and blessing, as weird as that sounds, is that had they decided to do a more thorough neuro exam during transplant evaluation and found this, she more than likely would not have gotten her heart….she would probably not have been a candidate for transplant. Tough to think about…but God is good… all of the time and this is quite the reminder.
Neurosurgery is a new thing we don’t know a whole lot about, but the good news is that Poppy is finally well enough to tackle this-to even be stable enough to get a head CT is a milestone, and without her new heart, it wouldn’t have been possible. Health wise, she is in the best place to deal with this than she ever has been, so praise The Lord for that.
God’s timing is always perfect.We have to keep trusting God and constantly reminding ourselves that He has this-it is obvious through His great provision of everything we need. Please pray for a successful spinal tap today, and for God’s peace and rest to take over. We soo appreciate your prayers.
This was my devotional yesterday…