We are ending day 3 in the hospital. She is stable, but it's been quite a roller coaster. But let me back up.
Scarlett had a cold all week. A runny nose, minor fever, nothing big. After three days, we say her pediatrician about the fever, just as a precaution. She told us not to worry, normal babies get colds, to let it pass. The next day, the fever was clear and we thought we were on our way.
Thursday afternoon, she was getting more irritable, smacking her head, clingy, not sleeping, and a low fever came back. We gave Tylenol, got her into bed and said we would call someone in the morning if strange symptoms persisted.
After she had been in bed about an hour, we heard her start to wiggle. I went in to reposition her and make sure her pacifier was within reach, and then it started. Projectile vomiting. Everywhere. Chris, my mom and I all jumped into action, getting towels, sitting with her and cleaning out the crib. She kept throwing up until her stomach was empty, and then kept going. Then she started screaming, arching her back and kicking. That was my cue. I called the on-call neurosurgeon (who ended up being her doctor - I swear he never sleeps). He said to bring her to the ER now. I had a feeling he would say that; I was half dressed by the time I hung up.
Mom held Scarlett as she screamed while Chris and I threw together our hospital gear. We have done it enough that we knew exactly what we would need - yoga pants, slippers, sweatshirt, phone charger, iPad, her soft blanket, extra pacifier. My dad handed me a pile of towels as we got to the car.
The drive to Oakland should have been easy, but there was construction. We were stuck in traffic at 11pm with a gagging baby! Oy. We finally got the the ER and they took her straight back to a room. A lot of questions, an IV, and some blood cultures, and then we waited. Of course, once we arrived, Scarlett did not throw up, and did not have any fevers. Not a single one. Luckily, they took our word about what had happened and moved on the symptoms we had seen. There was a "nursing issue" in the PICU, so we stayed in the ER until 5am. Chris went home around 1:30am to rest for work the next day, and I tried to sleep in a plastic chair.
Of course, they didn't really know what to do with her. Someone wasn't listening about the history of shunt malfunction, and assumed she had an infection. They started her on heavy duty antibiotics - not something I was happy to wake up to. She was on a second antibiotic for a possible urinary tract infection, though the doctor admitted it was probably a contaminated sample rather than any discernible infection. Basically, they were spinning their wheels until neurosurgery made a decision.
Finally, the neurosurgeon made his grand entrance. Within one minute, he said that we should just get this over with, fix the shunt and get rid of the bubble on her head and put this behind us. THAT was what I wanted to hear! He had had enough, and so had I. She was scheduled as an "add on" for an MRI and then surgery that day.
We waited all day. The MRI finally happened around 1 pm. Sometime during the day, she got a second IV to handle multiple antibiotics. Before long, the first IV was useless, so it came out. We were told that she would be last for surgery, around 8 pm. At 8:30, we got the call to bring her in. I saw the surgeon briefly - he had done back-to-back brain surgeries all day. As I signed consent and talked with the anesthesiologist, Scarlett grinned and waved to the nurses. They took her back for her twelfth surgery.
Chris arrived just after I passed her off, straight from work. I was exhausted, having had only a few hours sleep in the last day, so I headed home while he settled in for the post-surgery night. We were there together so briefly that the parking garage had not even had time to charge us yet before I left! Of course, as I drive home, an A's game was letting out so there was more traffic.
She was out of surgery around 11:30, and had a pretty quiet night. They ended up changing the shunt valve, but none of the tubing, so she just ahs a small incision on the back of her head. The next morning, I met Chris back at the hospital and sent him home to get ready for another work shift. Poor guy.
All day Saturday, she was unsettled. Around 2, she started crying, and it escalated. She was kicking, thrashing into the crib rails, screaming and completely inconsoleable. She did not sleep all day. We kept giving pain medications - morphine seemed to do nothing, tylenol with codeine lasted just a short time. The brought lorazepam, an anti-anxiety medication, to try to calm her down. She would calm down for a few minutes, but still startled awake to scream frequently. She wouldn't let us pick her up, move her or hardly touch her without a fit. It was harrowing. Once she had all three drugs on board simultaneously, she was finally able to fall asleep around 7pm. She woke up screaming at 1am, and only fell asleep once all three medications were given.
This morning, she was still the same; once the medications wore down, she was completely out of control. She has never, in all her surgeries, hospitalizations and procedures, been this way. The PICU doctors called the neurosurgeons ("on call", but not really present on weekends). The physician's assistant came to see her, and felt there was not much they could do for her other than treat for pain. So soon after surgery, they felt that her unhappiness was caused by incision pain and maybe a headache from the fluid shifting. So, Scarlett kept screaming.
Another call was made, and then suddenly the surgeon was walking into the PICU in jeans...brought in on his day off, when he wasn't on call (though I think he is always around). We heard the nurses talking about him before we saw him. He wanted to check on Scarlett since he had heard she was not doing well. He looked at her, felt under the bandages on her head, and declared her "fine" - fussiness caused by incision pain and discomfort, not intracranial pressure. He said we could do a scan Monday morning, but then she should be ready to go home.
So all day, we have been trying to keep up with her hugely fluxuating moods, thrashing and screaming. We tried higher doses of meds, switching tylenol with codeine with vicodin, feeding her, NOT feeding her, giving laxatives (all the narcotics cause wicked constipation), repositioning, blankets, no blankets. We have looked up and down for a cause, but I can't find anything.
I am now home for the night, and Chris is in the PICU with Scarlett. He just texted (no calls allowed) that her second IV is failing. Since she is on IV meds, I am sure they will put another one in. Our plan is to make it clear we don't feel comfortable taking her home tomorrow in this condition.
This was not what we expected. Every other surgery has gone so smoothly, with fast recovery. It's not unreasonable to expect her to be out of sorts, but it is scary and heartbreaking to see her in so much pain. Tomorrow morning, I will head back, and I hope to see a Scarlett I recognize a little more.
On top of all this, it's school week. Scarlett starts preschool on Thursday (4 days/week starting next Monday). I would hate for her to miss the first day. In addition, we are entering week two of waiting to hear if I have a job. I interviewed last week, and then the district made a bunch of changes to what was available. When I called on Thursday morning, I was told I would hear "early next week". School starts in a week, with teacher prep days beginning Wednesday. If I have a classroom to set up (which, despite the last-minute stress, I hope I do) it will have to happen in the next few days. I hope, hope, HOPE I hear something tomorrow so I can stop waiting and start getting ready.
Praying for you and your family!
We are praying for Scarlett as well. Get better baby girl!
Thanks for updating us. Thinking of you!
Many prayers coming for your family.
I'm so sorry to hear that Scarlett is having such a hard time. We can picture every step of this most recent visit, it is so similar to a few of our past trips to the hospital to deal with a shunt malfunction for Carly. There have been several times when Carly has been inconsolable and unable to sleep and we also tried a variety of pain meds and larazapam. For Carly each time the issue ended up being pressure related: either too high and the new shunt was not working properly or too low and we needed to keep her more flat for the first few days after surgery as she adjusted to a lower ICP. We never found the incision pain from a valve replacement to be bad enough to cause the level of discomfort you describe and typically tylenol has been enough to manage that pain in Carly's case. I really hope that Scarlett is feeling better tomorrow and you can all feel comfortable enough to go home for some much deserved rest.
I hope little Scarlett is feeling better! My goodness - this post makes me want to give you all a huge hug
I am so incredibly sorry that sweet Scarlett is having to endure so much pain. I hope you guys can pinpoint the cause soon and get some relief (both for you and for her). The not knowing and helpless feeling must be unbearable.
Thinking of you and praying.
Big, big hugs. Praying for all three of you.
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