Wednesday, May 28, 2014
Back on Track
As you know Meagan has been having balance and arm issues among other things that have developed over the last few months. In the last few weeks, we have also seen strange episodes creep in where she seems extremely off, is very off balance, and acts like she is having a headache or head pain. She will typically be very fussy and ask me to just go to bed. Typically of course I pick her up and comfort her, but this time I grabbed my camera. I just felt in my heart Dr. R needed to see exactly what I was talking about especially since these were now new things on top of her previous issues. In an effort to clarify what exactly I was dealing with, I sent him this video.
How Meagan behaves during these new episodes
Upon receiving my email, I got an immediate callback from Dr. R. He was very sympathetic and hated seeing Meagan is having days like this. He decided then and there we do need to do more, and sooner than later. He asked me to come down to the office so he could first turn up her shunt all the way. It may seem crazy when Meagan seems under pressure, however, she has slit ventricles. This is what makes SVS hard to navigate. We don't want to put her under pressure for more discomfort, but at the same time, increasing the fluid is the only way we have to try and blow up those ventricles a little more so they stop sticking to the catheter or each other, which in turn, causes her symptoms.
We drove down to the office where Dr. R waited for us. I had all 5 girls with me so they came along. Dr. R walked us into his office and we sat down and had quite a heart to heart. We talked extensively about Meagan's episodes, her symptoms we have been trying to figure out, and also what we can do at this point to help her. Granted, she isn't always like the above video - we still have good days and she still has a lot of smiles! However, to see her have episodes like the one in the video is heartbreaking - and it is NOT her norm. We had nothing like this between last October and this February, so it needs to stop.
Dr. R dialed Meagan's shunt to the highest setting to see if we can start blowing up the ventricles in a non invasive way. He was very good with my other girls - he let one hold the magnet and let the other demonstrate to Meagan how it worked. This is the first time Dr. R has talked to Meagan about what he was going to do ahead of time - I really liked that. He asked Anna to stand up and volunteer to be his model - he used her head and showed Meagan what the magnet would do and that it wouldn't hurt at all. Of course Meagan didn't like someone touching her head, but, she was a lot better about it once Dr. R had explained it to her. She cried a lot less and seemed to have a little bit of understanding since he had just demonstrated on Anna what would be done.
Once he dialed her up, he scheduled her soon for an EVD. Basically, he will externalize Meagan's shunt so we can see if her ventricles grow at all. By doing this he can tell a few things. He can tell if her ventricles are able to be expanded, or if they are already rigid. He can watch her increase in pressure very gradually so we can see how her tolerance is and what a good balance will be for her personally. And lastly it will allow him to see, once we reach that "sweet spot," which shunt or valve may work best for Meagan now to hopefully give her more consistent relief. He said he also may go ahead and take out her whole catheter and replace it to rule out any problems from the distal end of the shunt as well. Her catheter area through her chest and neck has been puffing strangely lately anyway, so I'm happy about the replacement. It is a long process - at least a week hospital stay, sometimes two... and going to be tough with the other kids and not many people to help out....but I think it will be so worth it to finally narrow down what will work best for Meagan. I'm counting the days until this surgery and shunt re-placement because I am hopeful it will offer her a much longer term consistency.
So many days where she bulges and gets watery eyes
The final part of the plan, if the EVD and new shunt placement doesn't seem to do the trick is to in fact fully decompress Meagan's Chiari malformation. It is quite a dangerous surgery (which is why she only had the partial decompression last year), so it is the last step of Dr. R's plan, and rightfully so. But if it does come to that, I completely trust him surgically and will look forward to the relief it may provide to Meagan. We are still in conversation with our second opinion NSG because I think it is still wise to hear what a fresh opinion is on Meagan's situation. But I'm glad we have a plan moving forward with our NSG here. I look forward to hearing the conclusions of the second opinion and seeing how that fits in with the plan of action on this end.
To finish up the Neuro side of things, Meagan had a follow up with Dr. F (neurologist). He did a repeat EEG for some new seizures we have been seeing creep up in Meagan just to get a new reading before starting her on new meds for the new type of seizure. Meagan was a champ during the EEG this time. Typically I would have to hold her down to get the electrodes on. Even though they don't hurt, she never liked them being attached. This time, she still cried the whole time, but she laid still on her own. A big milestone for her as far as being aware of what was happening and realizing it was ok to be upset, but not fighting it. Such a champ. (As was big sister Maura who has to come to all these things and sit quietly. She did a great job behaving and being a big helper).
Laying so still for the tech
Maura rocking the big sister duty
Meagan seems to be handling her new setting "ok" as far as not having any dramatic constant screaming or soft spot hardening - but I also have not seen much change in her behaviors (as far as, change for the better). She is still acting the same as before she was dialed up - some good times, but balance and arm issues still present. What we have seen with the new setting are periods of fussiness/irritability that are inconsolable for a few hours, or times when she has a lot of head bulging and seems tired, but as long as these changes stay ittermittent, we still stick with it ....it's the price we pay to try this setting out and see if she can adjust. If this can help open those vents even a tiny bit before the EVD, then we are on to a good start. We will watch her and play it by ear. If she really seems uncomfortable, I can take her in this week or next week and have her dialed back down until we go in for her shunt surgery.
Being a tough cookie on her new setting
The last few months have been such an up and down roller coaster on many levels. Meagan's setbacks, the back and forth with testing, and the emotional ups and downs of our relationship with Dr. R. The last roller coaster has probably been the hardest because it's the first time our relationship with Meagan's NSG has really been "tested." That said, I am glad where it has landed us - back on track, with a plan and hopefully a good outcome in sight. I have known the root of her issues in my gut since February - and am glad Dr. R now sees it and is on board. I don't think he was ever "not interested"... but sometimes we have to remember these doctors, even the good ones we hold on a pedestal by how well they deal with our kids, are regular people too. Sometimes the doctors have things going on we don't know about and it takes a little perseverance and pressure to come to a mutual conclusion and plan for our kids. Not that distractions should cloud Meagan's treatment - but we do have to take a step back and recognize the vulnerabilities of simply being human. After all, caring for Meagan is a group effort between Brian, me, and her medical providers. If one falters, the other needs to pick up the slack and keep the focus on track. It may sound silly but the relationships special needs parents have with their good doctors is kind of like a marriage. When one link is weak, the other links have to keep it together and make sure the child's best interest is at heart. Sometimes this slack does fall on us, the parents. It is harder when this happens because we don't have the "MD" after our name, and so have to almost provide more burden of proof.....but we have an equally important duty to keep pushing through until the MD's see what we see and should never be shy to speak up and insist our gut feeling is correct.
Meagan chillin in her chair... her way.
So now we wait for Meagan's admission - I am really hopeful this EVD will offer new insight into what Meagan needs on the inside so we can continue to see her progress on the outside. Waiting is the hard part now but I feel we are back on track as far as being really ahead of the game on Meagan's care. In the meantime, we will savor her good days, give lots of hugs and kisses on her bad days, and trust in God he has led us in the right plan for her to continue to thrive. He gives us the strength to push through the doubt and believe in those "mama bear" moments I know will results in better outcomes for Megs. Afterall, it is God above us or any doctors that truly knows Meagan's full plan - and I'm confident He won't let us down.
Meagan relaxing with her best fur buddy