Blindsided in Boston

7 Sep
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First day of school!

Wednesday was Abby’s first day of preschool and she really seemed to enjoy class. In fact, she squealed on the way into the building and was busy checking out the bookshelf with another little girl in no time. I’m not really sure if I hugged or kissed her goodbye; I didn’t want to mess with her because she was already adjusting on her own and saying a formal goodbye would have been about me and not her. When I picked her up at noon, she was happy and seemed to have a good time. She’s such a big girl these days. Here she is before we walked into school.

We flew out of Richmond Wednesday night and got into Boston around 8:30. It was a nice flight and everything went smoothly. By the time we got to the rental car and drove into Boston, ate dinner in the hotel and went to bed, it was 11:30. Luckily, Abby slept almost 8 hours, but she couldn’t eat or drink anything in the morning, so she was a little cranky by the time we left for the hospital at 10:45 a.m. I didn’t blame her!

Abby’s sedation nurse was great with her, and she quickly charmed everyone that came into the room. She was dancing and laughing the whole time, and she kept trying to jump on the hospital gurney. With a combination of a good nurse, a cold pen and a dancing, naked Sofia doll, Abby didn’t even realize she’d gotten an IV placed. She was actually laughing through it, which was a blessing. Once she realized she had an extra attachment, though, she tried to take it off several times until I just opened the door and let her speed walk through the halls until they came to get us. They let me dress in scrubs to take her into the MRI room while she was sedated.

Jumping, jumping, jumping!

Jumping, jumping, jumping!

The only time she really got upset was right as we were in the MRI room. Things moved way too fast then. I tried to introduce her to the machine and take things slow, but once there were 5 or 6 medical people in there, she got uncomfortable. The good thing about it was the Propofol they used knocked her out about 15 seconds after she started to get upset. Even though I know what to expect, you never really get used to seeing your child go out like that.

The MRI seemed to take forever. There are windows through the MRI doors to the windows in the MRI computer room, so I was able to spy on them the whole time. The anesthesiologist had the resident come in at one point, and the radiologist got on the phone at one point in time. It was supposed to take an hour, but it went past that. I got a little nervous by then. These doctor clowns came into the MRI waiting room towards the end of the wait, and I know they were for the kids, but it was a welcome distraction for me. By then, my mind was whirling.

Everett just seems to make friends wherever he goes.

Everett just seems to make friends wherever he goes.

Finally they came to get us. Abby was already waking up. They didn’t give her a lot of Propofol because it gave her low blood pressure and they had to give her some medicine to bring it back up. She needed a little O2 too.

“NICU Abby” woke up from sedation. She was mad as a hornet’s nest to be attached to stuff. She turned right back into her feisty preemie self. She didn’t want blankets or clothes on. She wanted HER IV OUT! Then she wanted her leads OFF HER CHEST. And once she was completely naked except for a pullup and a pulse ox and socks, she wanted her socks off and her pulse ox OFF! She cried and fussed and wouldn’t eat or drink anything, so the nurse got the anesthesiologist, who deemed her fit to go. We went downstairs and got her a chocolate cupcake and some coke to see if that would entice her at all to eat. We walked over to the neurosurgery office and she perked up some once she took a couple bites of the cupcake in that waiting room, but not enough to walk around by herself or hold her head up completely. When Dr. Warf came out to get us and we packed up our stuff to follow him back, she just burst into tears. Poor thing.

We settled into Dr. Warf’s office. He told us he had been conferring with the radiologist and looking over her MRI results for the past 30 minutes. He and the radiologist disagreed with the scan results; the radiologist thought the ventricles looked the same as they have, and Dr. Warf thought they looked slightly bigger. He had gone through all of her past scans to review it all, looking at various angles. She had a FIESTA done too, which she had not had before. Her ETV is still open, but the flow looks to be less than it should. There seems to be a black line on her FIESTA scan that shows there may be a membrane that’s grown and is hindering some flow. There is also a little bit of scar tissue now at the base, which could be causing some issue, but we’re not sure. There doesn’t look to be any pressure, but we don’t know that for sure until it’s measured during surgery. Abby herself doesn’t show signs of pressure; which should make a decision easy. She’s hitting developmental milestones, eating and sleeping well, and her temperament is happy (more than a typical 2-year-old). But her head keeps growing. It should have plateaued by now. We can’t keep letting it grow like this – just because there isn’t signs of a problem doesn’t mean we won’t have any in the future. Letting it go could cause damage to her brain.

We'll be back here having surgery in exactly one month.

We’ll be back here having surgery in exactly one month.

So the problem is: do we put a shunt into a child that doesn’t look or act like she needs one? Are the ventricles really bigger? Why the heck is her head still growing? It’s been two and a half years since her ETV surgery, and this type of thing just doesn’t usually happen this late. You know if it’s successful by around 6 months post-surgery; one year post-surgery in really late cases.

With hydrocephalus, there’s really only two options: shunt or ETV. With a shunt, she’ll have a device in her body for the rest of her life. It can cause infection or malfunction and require more surgery. An ETV is a natural version of a shunt, the opening created during surgery helps your body do what it’s supposed to do. Dr. Warf doesn’t want to make this decision, and honestly, neither do we. But we need to do what’s best for Abby, no matter what we want, it’s what she needs that’s important. So we’re scheduled for surgery on October 7 in Boston. We’ll have our pre-op appointment on Monday, October 6 and Abby will have surgery the next day.

There are really three options for October’s visit:

1. Abby’s head remains the same size, and we “punt.” Meaning, we put off a decision in the hopes that her head size has finally plateaued and we won’t have to operate.

2. We go ahead with surgery. Dr. Warf explores any reason for a blockage (membrane or scar tissue) and opens that up. He measures the pressure in her head at that time, and leaves a drain outside her head to monitor pressure over the next 3 days inpatient. If the pressure stays the same (or lowers), he’ll remove the drain bedside and we won’t do a shunt.

3. We go ahead with surgery. He finds pressure and no reason the ETV isn’t working well, and deduces she needs the help of a shunt.

So that’s the “plan.” It sucks. I have no idea what to pray for, other than for the very best decision for Abby. It’s what Dr. Warf wants, and it’s what we want. He spent a long time with us, part of it with a wobbly Abby sitting on his knee behind his desk. I don’t want another surgery to change her or damage her brain. He doesn’t either. When we asked him what he would do if it were his child, he really pondered that question. We were initially weighing the option for surgery this past Friday since we were already in town. Dr. Warf decided it would be best to wait one more month and get it all scheduled; it’s not emergent, but it can’t wait another few months. The decision for surgery was not reached lightly and without thought. Are we bummed? Yes. I literally hate the thought of her having another surgery. It’s been hard to stomach and I feel really run down emotionally. Plus, Abby’s been clingy since her doctor’s appointments and I’m trying not to be completely overwhelmed by decisions.

I hate when the other shoe drops out of the blue. And just to make sure we felt adequately knocked upside the head, we got Jackson’s 6-month oncology checkup appointment in the mail. For October 7. I mean, really? Guess I’ll have to reschedule his CANCER checkup because we have Abby’s BRAIN SURGERY out of town. For God’s sake. If I’m blindsided that Abby’s hydrocephalus is rearing it’s ugly head 2+ years after surgery…we have Jackson’s checkup…

Anyway, I just can’t let myself go there.

This is how I’m going to look at this. We have successfully remained shunt free during the greatest brain growth time for Abby. That’s a big deal. She’s been otherwise healthy, which is HUGE for a micropreemie. She can walk and talk. And what if there is some silent problem in her head? I’m glad we’ve been diligent with her checkups and maybe this is the very best thing for her. Jackson’s been healthy and well for 4.5 years. We’ve been diligent with all his needs and followups and continue to do the best for him too.

One day at a time. Abby’s looking forward to school tomorrow and I’ll be glad to go back to work for a break!

2 thoughts on “Blindsided in Boston

  1. Jessica,
    So sorry to hear about possible surgery for little Abby. I will also pray for what is best for Abby and for emotional stamina for Mom and Dad.

  2. Another surgery?? Oh my. So sorry to see this news, and I will pray that what’s best for Abby can be done easily and without complications! XOXO!

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