UPDATED: And now comes the swelling
jbranden12
member
So between Sunday 1/13 and Tuesday 1/15, there was no change in Anna's bleeding (level 4 on the right, level 2 on the left). We did a repeat ultrasound last night hoping for good news but unfortunately are left wanting. The bleeding has not started up again, but her ventricles have swollen with spinal fluid at a very rapid rate. She has gone from a ratio of 29% to a ratio of 40%. Her doctor (whom I now call the grim reaper) said that neurosurgery usually wants to begin draining at 45%, but that he wouldn't recommend doing it because combined with her bleeds, her quality of life cold be poor. We are doing a repeat ultrasound on Thursday to see if her brain has figured out how to drain the fluid. I am not ready to make this decision!
Anyone had experience with swelling, draining, or shunts?
UPDATE: The ultrasound showed that the swelling has continued at a pretty quick pace. The ratio is now 45% exactly so she is right on the cusp. However, she is not showing any signs of distress from the swelling. Her soft spot is still soft, and she is still doing well on the cpap with oxygen levels around 25 and no apneas or bradys! The neurosurgery NP said that every case is different and they treat the pressure the swelling causes, not just the swelling, so we are still in wait and see mode. We may do another ultrasound or MRI on Monday. I'm relieved that we are not at an immediate decision point, today.
Re: UPDATED: And now comes the swelling
I dont have any personal experience with this but I came across a fb page the other day for a baby with a grade 3/4 bleed and hydrocephalus. Saving Super Nova . It may be worth checking out her page and/or contacting the mom via fb.
Have you been able to speak with the neurosurgeon yet?
Thinking about you and your sweet girl.
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Thank you, I have seen that page as well and have considered contacting her mother. We haven't spoken with the surgeon yet, just the neurologists, but apparently is the surgeon's call on when draining is needed and it can very from surgeon to surgeon but is generally around 45%.
This is really sweet, thank you!
Thank you, I appreciate it!
Thank you! I know every baby is different, but all we can do is look at the journeys of others and hope for wisdom and guidance!
Thank you so much! Your boys are adorable! I know Anna's doctors just want what's best for her, but I also know that they are influenced by what they see, which I guess is often bad outcomes. It is really hard to try to be rational but also know that NO ONE knows the future! We are just playing the odds. We want to be at peace with our decision either way but right now I doubt that's possible. I'm afraid I'll spend my life researching success stories if we decide to let her go, but I'll never forgive myself if she is one of the "worst case scenarios" and has a lifetime of suffering.
No experience. Come on Anna please fight for your mama and daddy! Sending my prayers and extra good thoughts.
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What great news that she is on CPAP with low O2! I hope that you get good news today. We are all thinking about you.
www.virginiakkent.blogspot.com
Praying for you and your LO. I hope the swelling resolves itself.