Wednesday, Norah had a follow-up with neurosurgery. Back in April, the clinic called to reschedule Norah's appointment and while they were on the phone I took the opportunity to ask some questions I had about Norah. She was beginning to grabbed the back of her neck on and complain of headaches 3 or 4 times a week. There headaches would come in the late afternoon, cause her to stop her activity and within a half hour she would usually be back to playing, and by the next morning no signs of a headache. She had also continued to on the path of not being potty trained anymore. It has been frustrating at times to have been fully potty trained to where we are now. We still have Norah wearing underwear at home, and sometimes for outings, but usually Pull Ups when we are out. We send her to the bathroom every hour or so and keep her using the toilet. We avoid some accidents with our method, but still have accidents if we forgot to send her or sometimes an accident right after using the bathroom, making us wonder if she wasn't emptying her bladder when going to the bathroom. We continued to make sure she wasn't constipated knowing that constipation can lead to incontinence. Over the phone we discussed the need for another MRI, this time of her spine to check for a syrinx, which is a collection of fluid on the spine.
The MRI was completed and the neurosurgery clinic called me back with the results. No syrinx but Norah still had a prominent chiari. We discussed that she decompression surgery for it is where we were headed. By the way the conversation went on the phone, I thought we were going to be discussing decompression surgery in depth at our appointment this week, but it didn't happen that way.
Well, Norah had her appointment, and it was not the big decision making appointment I thought we were there for. I felt like it was a repeat of our phone call and even our last appointment in January. We reviewed all the symptoms Norah headaches have decreased over the last 2-3 weeks. We are seeing them 1-2 times a week. She continues to be slow to gain weight, continues to some gross motor delays and ataxia, she had pneumonia this spring, possibly caused by aspiration. She is having times where her voice is hoarse, continues with a soft snore, and some mild sleep apnea. She is having some problems with her eyes focusing and crossing - all these things can relate to her chiari.
The plan at the end of her appointment was to go to radiology to have a fast MRI done to check her ventricles, shunt and chiari, again. We would follow up with urology to see if Norah has problems with a neurogenic bladder and work on our potty issues, then call neurosurgery to followup again, then schedule a shunt a gram to check the flow of Norah's shunt. The concern being Norah has very small, slit like ventricles, and before they would do a decompression they want to make sure her shunt is working. Then we will have another appointment at that time.
Off to radiology we went, in true Norah fashion she showed off how brave she has become and that being in the hospital is second nature. She went into the MRI machine and laid down to watch a movie with her silly glasses on without a fight. This was a big change because usually walking into the room leads to hyperventilating and major tears from our little girl.
The next morning we went for Mason's 2 year checkup with our pediatrician. Our pediatrician is always so good with checking up on all the kids even if the appointment was made for one kid in particular. He said he had received Norah's fast MRI report from the day before and asked how she was doing and what our plan was. He checked Norah over as well, and thought we had a good plan.
After returning home from our morning appointments, I called to schedule Norah's urology appointment. The scheduler placed me on hold for a minute while she search for an appointment. One of the things I have learned is that when it comes to appointments with specialists there is a lot of waiting, usually at least a month, sometimes up to six months. When she returned to the phone and asked if we could come in the next morning I was shocked. I already had an appointment scheduled for the morning that Norah could tag along with me, and then we could go to her appointment - I'll take it.
So this morning we headed out to our appointments. We met with the urologist, who thought we were doing everything right with keeping Norah using the bathroom every hour. She was concerned that Norah isn't taking in enough fluids throughout the day. This is something that has been a struggle for us. Norah drinks 2 Pediasure bottles a day, but beyond that it takes some encouraging. We watched Norah go to the bathroom there, checked her urine for infection, and did a ultrasound after going to the bathroom. She emptied her bladder which is good news. She did see stool on the ultrasound that made her concerned that even though Norah poops every day that she still is having some constipation problems. She didn't feel that more invasive testing was needed at this time. We will continue with our scheduled bathroom breaks and try to work up to 2 hours between visits, increase fluid intake and work on the constipation issues for the next 6 weeks and follow up.
Once back at home, we spoke with the neurosurgery clinic to review Norah's fast MRI from the day of her appointment and discuss the urology appointment. Norah's ventricles remain very small but stable according to the report. They also noticed some chronic sinus inflammation that they felt we should treat. So they called Norah's pediatrician and have him ordering antibiotics and a steroid to treat for the next month to treat. And we discussed that we would talk again after follow up urology in July. Then conversation ending with talking about decompression again and how it seems to be where we our headed.
So off to pick up antibiotics, steroids, probiotics, flax seed, PlumSmart juice for Norah and some Extra Strength Tylenol for mommy since this week has left me with a migraine. Praying we are headed on the right track with all of this and hoping for making life a little better for our sweet little girl.
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