January 14, 2013
MRI day... again. A 3 month follow on brain and one of her abdomen to prepare for up coming reconstructive surgery.
January 24, 2013
Surgery #11 tomorrow at Noon for Faith. The cyst on her brain stem is significantly larger. Her neurosurgeon will place another catheter off her current shunt into the cyst. Your thoughts and / or prayers are much appreciated. ♥
January 25, 2013
My Pre-Surgery Curls
Waiting For Surgery
Faith went into surgery at 1pm and total it will be 5-6 hours. His includes an hour to run antibiotics, getting her set, actual surgery, and post op.
Neurosurgeon was unable to complete the surgery because she started bleeding when they tried to do the 3rd/final incision. He tried it twice and bleeding both times so they are closing. Please pray there is no bleeding in her brain. That would be very bad news bears! :(. She is in recovery now and I am anxiously waiting to see her. Even harder that Daddy is sick at home! :(
Post Surgery
January 26, 2013
Faith had an okay night and is doing okay today. Working to keep the pain under control so she stays comfortable. She needs to be on IV antibiotics till Monday because of the high risk of infection. We are missing Daddy! He has to stay home because he has a double ear infection and bronchitis. :( Visitors are being limited in the hospital because of the flu epidemic. The Children's Hospital ...is overflowing to Butterworth! Please practice good hygiene and stay out of public if you are sick. It is awful for anyone to be sick and horrible to have a sick child. You may expose a child or person who has compromised immune system or other issues. We never know when Faith might need an urgent surgery and her being ill could cause serious complications.
Faith had a good day. Since surgery she has had 2 CTs and they were both clear. We are so thankful for that. She is acting like her happy self and is doing well with pain management. She needs to stay on IV antibiotics till Monday because of the high infection risk. If it wasn't for that, we could go home now. She is getting restless because she feels to good and wants to play and roll around...d but that doesn't work well when you are hooked up to so may things.
The big question is: what are they going to do now about the cyst pressing on her brain stem? The answer is: they don't know yet. For now, it is okay because it is not causing extreme symptoms (I.e. unable to breathe or swallow). She does have a horrible gag reflex so that is a symptom of concern. We will let everyone know the plan when we do. But for now... We don't know and only time will tell. In the meantime, keep our little miracle in your thoughts and prayers. Thank you! ♥
The big question is: what are they going to do now about the cyst pressing on her brain stem? The answer is: they don't know yet. For now, it is okay because it is not causing extreme symptoms (I.e. unable to breathe or swallow). She does have a horrible gag reflex so that is a symptom of concern. We will let everyone know the plan when we do. But for now... We don't know and only time will tell. In the meantime, keep our little miracle in your thoughts and prayers. Thank you! ♥
January 27, 2013
Faith had a good night and is having a good day. She is bored and so are we! She is eating well and just getting Tylenol for pain. Her last does of IV antibiotic is at 8 am tomorrow morning. Hopefully we can blow this Popsicle stand at a decent time tomorrow. We are so anxious to get home. Unfortunately Daddy is still home sick. :(
Playing on the floor. So glad they let me out of my 'jail' crib
Trying to Escape
January 28, 2013
Faith's last dose of Vanco (antibiotic) just finished. Now we are just 'patiently' waiting for Neurosurgery to round on her....
We are home from the hospital. Faith is doing well. Just have to keep from scratching her 3 incisions so she is wearing socks taped to her hands to bed and she is not real impressed with that. It is critical that she doesn't scratch her sutures open or she will probably leak CSF (cerebral spinal fluid) and have to be admitted again. The plan is for an MRI in 3 months and monitor her closely for signs of cyst pressing on brain stem (unable to breathe, swallow) and shunt malfunction (fever, loss of skills, and many others). For now, we are all so glad to be home and sleep in our own beds tonight!
January 29, 2013
Faith had a good night last night and a good day today. She isn't thrilled to have socks on her hands for napping and sleeping but is doing better than we expected. :)
