I have found that packing for these trips gets harder and harder to do. I think I am just tired, or at least frustrated at the thought of doing the same things over and over again. It was funny as I approached 80/90 (an hour later than planned) I found myself looking up to see an option to go left or right. One way heads east to Toledo then Cleveland and the other Chicago then Milwaukee. It made me think for a moment about the decision to seek another opinion- to stop turning the same direction so to speak. For a moment it was refreshing and helped keep me going. About 4 hours later, we arrived at Racine for the night. Ayden was quite the trooper motivated by the idea of swimming when we reached the hotel. He was no trouble in the car and even "Found the Pee!" each time we stopped. OK, so the Twizzlers, Chex Mix, and M&Ms might have helped too. I was nervous about staying at a hotel with just Bub, we have traveled together before just the two of us, but not with an overnight stay prior to admission. I was really feeling proud of myself until I went for the rest of our luggage and found myself locked out...Yep, Ayden is tall enough to flip the door lock and made sure to do so when I left appearently. Fortunately, he did listen to mom and unlock it after a minute or so of all sorts of scenerios running through my mind while stood in the hallway. He did get to swim and we ordered pizza. He was very happy with his date night..then the question came, "Mami's house?" I didn't bother to lie because the truth is he already knew. He asked about sis before we left school and really didn't want to leave with me today. He knows, so I told him we have to see the doctor tomorrow and go to the hospital. His reply, "No." :(
I hope tomorrow goes smoothly and he settles in, we will see. The VEEG will be 48-72 hours, and they will introduce another medicine to see if decreases or increases the seizures. Perhaps this time the medicine will work, if not we will go home on another one to try. Ayden has a 24 hours rule with hospitals typically (as in he can turn into a nurse's worst nightmare quickly). We are going to hope for 48 hours, but more importantly we are going to hope for answers and information that can lead us to a solution for the current seizure onset. I probably won't post again until we are home as the next couple of days will be spent on the unit trying to keep Bubba happy(yes, the iPad is charging as I type this).
Thursday, March 20, 2014
Wednesday, March 5, 2014
Options and Answers
Our trip to Milwaukee was a successful venture. For Ayden, the fact that we stopped at Rise and Roll both on the way and tonight made the trip, but there was much more to it than that. We met a new neurosurgeon and neurologist at Wisconsin Children's, both doctors were very helpful and we feel like we learned a lot. Most importantly, they truly cared about our Bubba and wanted to give us the best answers they could.
Ayden has two issues at the moment:
1. Head pain that is causing aggressive behavior.
2. Seizures - Myoclonic jerks and drop seizures causing decline in muscle movement and cognitive function.
Today it was made clear that both of these are valid concerns but likely caused by two different issues. For the first issue we can add a device to his current shunt and hopefully fix any possible overdraining. The procedure is about 45 minutes and outpatient at that! Since we do live over 4 hours away he would like us to stay overnight to insure all went well if/when we do this. This is something we have suspected for quite a awhile so the quick fix is exciting.
Next, the seizures that answer is two fold. First, from the neurologist's standpoint we will try a VEEG with IV dose of a medicine he used to take to see if there are any changes in the seizures. If it works we go home on the medicine, if not we go home on another medicine and hope it works. The neurosurgeon found a centimeter of the right hemisphere that could be removed with another surgery, but we have no guarantees it will work so we are willing to try the medicines briefly(this is key). The benefit of the VEEG medicine scenario is that Wisconsin can then look closely at his seizures and we need to "try" other options first. The neurosurgeon explained the surgery and it would be much less invasive than his previous two hemispherectomies. There are always risks, but allowing our son to have drop seizures and continue to lose function with continuos seizures is full of risks too! The most powerful statement all day was from the neurologist,"His declines are very concerning and there is obviously something wrong that needs treated." We have waited for those words and it felt good to be surrounded by a staff that seemed to get it.
We have only sought a second opinion once before when Ayden was first diagnosed with Tourette's syndrome. That opinion was reversed days later and I am so glad I trusted my gut then. I think the same has to apply here and we are glad that a fresh set of eyes could lead to answers. Now it is back to waiting on calls from Wisconsin to get everything set up and of course tracking data. Thank you for all the support and prayers. We truly feel that we are on the right track to a healthy Bubba soon.
Ayden has two issues at the moment:
1. Head pain that is causing aggressive behavior.
2. Seizures - Myoclonic jerks and drop seizures causing decline in muscle movement and cognitive function.
Today it was made clear that both of these are valid concerns but likely caused by two different issues. For the first issue we can add a device to his current shunt and hopefully fix any possible overdraining. The procedure is about 45 minutes and outpatient at that! Since we do live over 4 hours away he would like us to stay overnight to insure all went well if/when we do this. This is something we have suspected for quite a awhile so the quick fix is exciting.
Next, the seizures that answer is two fold. First, from the neurologist's standpoint we will try a VEEG with IV dose of a medicine he used to take to see if there are any changes in the seizures. If it works we go home on the medicine, if not we go home on another medicine and hope it works. The neurosurgeon found a centimeter of the right hemisphere that could be removed with another surgery, but we have no guarantees it will work so we are willing to try the medicines briefly(this is key). The benefit of the VEEG medicine scenario is that Wisconsin can then look closely at his seizures and we need to "try" other options first. The neurosurgeon explained the surgery and it would be much less invasive than his previous two hemispherectomies. There are always risks, but allowing our son to have drop seizures and continue to lose function with continuos seizures is full of risks too! The most powerful statement all day was from the neurologist,"His declines are very concerning and there is obviously something wrong that needs treated." We have waited for those words and it felt good to be surrounded by a staff that seemed to get it.
We have only sought a second opinion once before when Ayden was first diagnosed with Tourette's syndrome. That opinion was reversed days later and I am so glad I trusted my gut then. I think the same has to apply here and we are glad that a fresh set of eyes could lead to answers. Now it is back to waiting on calls from Wisconsin to get everything set up and of course tracking data. Thank you for all the support and prayers. We truly feel that we are on the right track to a healthy Bubba soon.
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