So as you all have read, our appointment with the neurosurgeon didn’t go exactly as planned. Lena had brain surgery at 10am on Thursday August 9th. The cyst that had been compressing the right side of her brain was broken apart (cyst fenestration) so that it could drain through the ventricle and out the shunt. Our neurosurgeon felt that while he was operating it was also best to change her shunt valve to a new one that is more resistant to infection as well as perforate her 3rd ventricle, next to her blocked aqua duct (the reason for the hydrocephalus in the first place) so that maybe one day we can remove the shunt all together (that would be great then I won’t have to be a basket case every time she gets sick).

Our little Lena (not so little at 15lbs) was a rock star. She recovered from surgery very well, though she thought she should take advantage of the sleepy medicine and stay sleeping with the recovery room nurses for almost 2 hours after surgery. When they sent us upstairs to Pediatrics I just about wished she had decided to sleep some more. The nurses up there are a little more picky about how IVs are taped and supported etc so they spent a good 15 minutes re-taping etc. I was almost in tears. The IV was on her ankle (it was obvious the anesthesiologist had tried several spots) and was not a good one so they really wanted to make sure it would hold until morning when her antibiotics were done. It hurt her tough, she screamed and screamed it was everything I had to let them keep going. I had to remind myself about every nanosecond that this was better than an infection and she needed the drugs. Finally about half way through the ordeal someone clued in that she could use some pain relief and gave her some morphine. She ate a little and slept and very deep sleep for a long time. The nurse and I decided that we would attempt to manage her pain with Tylenol after the morphine had worn off and add codeine if necessary due to the fact that the morphine knocked her out so cold she was breathing a little to slowly and needing a little extra oxygen. 

When she finally woke up for real at about 2:30am she was my Lena again, making gurgling noises etc., she even gave me a smile. Less than 24 hours after brain surgery and she was smiling. What a rock star. So the surgeon had said that as soon as she fully woke up, was eating, her pain was easily managed and we had a CT scan that showed everything was working as it should, we could go home. At 2:30 in the morning I was hopeful that we would go home later that day (Friday). On rounds that morning the neurosurgery residents came by and told the nurses she could come off the monitors and have her IV taken out (it was bugging her). When our surgeon came by he said that she was to have a CT scan that morning and if all was well we could go home. I was anxious to get it done and go home.

When I had talked to my Mom she said Kassie was really out of sorts, just not her happy go lucky self. She thought Kassie was really missing us and knew something was not right. I could hear her fussing in the background and it made my stomach hurt to know that she was upset and I couldn’t do anything to help. I hate having to choose one over the other like that. When Wayne went home she seemed to be better and played with Daddy before bed. I felt a bit better but was anxious to go home and have both of my girls together again.

So there we were Friday morning waiting for a CT scan. Now, usually when they do scans on these little ones they like to have them sedated or knocked right out. So when the nurse called down to see when we could go for our scan and told me that we could go any time but that the Dr had forgotten to write orders for the sleepy medicine I was a little ticked. So we waited. The nurse assured me she was just as impatient as me and that she would be on them to come up and write the order. Lena was ready for a nap, timing was perfect and all we could do was wait. When she fell asleep I asked the nurse to call th CT technician to see if they would do it while she slept (they had before, why not now?). They gave us the go ahead. YEAH!

So we go to the CT room and the second I put her down on the bed she wakes up and won’t go back to sleep, 15 minutes napper. She was very still though so the technician suggested we see what she would do if we tried to do the scan with her awake. Lena was a SUPER ROCK STAR. She was great, she didn’t move a muscle. I stood by her and held her soother and she was perfectly still (with the help of a foam bed and some blankets). So with the scan done all we had to do was wait for the surgeon to view the scan and discharge us home. YEAH! I  was so proud of her, my 6/9 month old having a CT scan fully awake, my big brave girl.   

The surgeon came back in record time and sent us home with the usual shunt type instructions, any pain, excessive irritability, vomiting etc bring her back to the ER for possible shut failure. Good to go, we got out of there fast before they could change their minds.

Not 10 minutes after we got home, Kassie woke up from her nap. Mom wanted to see her face when she saw me so we all trucked up stairs to get her out of bed. I didn’t get the reaction I expected. Sign number one something was not right. She looked at me gave me half a smile and whined. Not my Kassie. So I picked her up and we cuddled and for 45 minutes all she did was cuddle in and whine. Something was not right, off to the doctor’s office with baby #2. Diagnosis, ear infection and a mild case of thrush. Off to the pharmacy to get our drugs. No wonder my little Angel was upset her mouth and her ear hurt. Poor Baby, and all she did was whine. Mom said she didn’t even cry. Mom has had thrush as an adult she says it HURTS. OK so now that that mystery has been solved hopefully every thing can return to normal in our house. Nope that would be too easy. A late night trip to the ER was still in the cards I just didn’t know it yet.

To Be continued … (Two Babies need my attention. I really meant to put the whole story in one post, however things don’t always work out when your life is controlled by the needs of not one but two little people. Did I mention they are both sick? )