A supposed quasi-relaxing trip was anything BUT… except for Sunday night when we got there. We left Sun morning and had a pretty easy drive there. We had planned to meet up someone for lunch, which fell through, since we actually got there at about 2:30pm, and we had planned to go meet up with somebody else Sunday night, but she never called. We enough to do, as we had ANTS, ANTS, ANTS crawling all over in our first suite, so we ended up moving… only after we were totally unpacked, of course, and right when it decided to pour down rain! Yeah – not my idea of a “relaxing” Sunday afternoon:-) So we went to use a gift certificate our friend Victoria had sent us for dinner at a local cajun place called Pappadeaux, and Braden was a pistol the whole evening crying and thrashing about…. Luckily the restaurant was pretty loud, and of course he mellowed out just in time for us to get the check and leave:-)
Monday was a full day, as we were STILL trying to track down a doc to do the botox for B… so we popped in to see our Nuero, to see if their office could help us find someone, as our docs in BR who were trying, kept coming up empty. So we strolled around seeing some nurses who were a part of our care team, had lunch at our little hospital a few blocks away, and watched X-Men 3 to pass the time until our 2:15 appt with the nuero. We only saw the nurse this visit, and while Brad was a little miffed, I didn't think it was not that important to see him face to face (THIS TIME), as we are comfortable with the plan and path we have chosen to take… if we weren't, we would have demanded he come see us personally since we drove all that way – but we were OK with it. We were so grateful about the time he first spent with us explaining our situation more in-depth and what our future could look like, we hope he was spending his time with another family who was there looking for answers like we were the first time. So our great nurse hooked us up with some free samples of drugs (woo-hoo!!), and we are on another course for our meds, since they don’t seem to be working completely like the Topimax did. So we are aggressively seeking to see if what we are on will work or not, and are increasing the Keppra dosage over the next 10 days, and if no results are seen, we will take him off and try something else. There are about 3 more for us to try still.
As for the ketogenic diet, Brad & I have decided it is something we want to keep in our “arsenal”, and look at implementing after the first of the year, should we find no help from the medicines. We are wanting to wait, b/c if we find the right medicine potion, we may not need too. Being on the diet is fine with us, it just means a week of hospitalization to start, and weekly blood draws here in BR to monitor various levels of glucose & such. Secondly, if we start the diet and change meds at the same time, and we DO see a difference, we will never know if it was the diet or the drugs… and we don’t want to keep him on anything that is not necessary.
So we are walking down the elevators, when a BR doc calls to say they have an appointment for us with an ENT at 4:30 who can do the botox, and can we make it? We were 3 blocks away, so we made it. Unfortunately, this doctor is OUT OF NETWORK for our insurance… so the visit alone cost us about $250. He got us in for the procedure yesterday morning at 7:30am. Luckily, it was performed at Texas Children’s, which is IN network for us, so hopefully we won’t be getting any big bills for the actual procedure. Braden is the YOUNGEST PATIENT this doctor has ever done Botox on to the salivary glands… so I believe this doctor (who made several Consumer Reports and Parenting Magazine’s TOP DOCS lists…) took on our case, as it may be “one for the books”… pioneering infant botox to the salivary glands, IF it works. So while it may have a few risks, the benefits should outweigh them. PLUS, b/c Braden is so small, they err on the side of caution. We were supposed to have FOUR gland injections, but we had THREE, because they just couldn’t get a good mark on the fourth salivary gland, (measuring at only 3 mm), and rather than risk missing, they stopped with the three. The important thing is that they got the two underneath his jaw/chin, which are the ones that we needed to get the most to reduce secretions. If they missed, Braden could have paralyzation of the face muscles for about 3 months, but so far, he is looking good. He is SUCH A TROOPER!! They had to numb the area first, b/c they had to use a bigger needle to actually inject the meds, so he was poked about six times yesterday… poor baby. He was actually pretty good about it, and more mad about not being fed than anything.
So although we were up at 5 am, and mommy and daddy each only got about 3 hours b/c of his machine going off… we are hopeful that this will provide us with the results we are looking for. He can’t help it, he could sleep all night, and he does pretty good actually, it’s the O2 sats dropping that make us get up to suction him… not his fault. He could sleep thought the whole thing if we could find a way to suction him in his sleep! So he was tuckered out after all that and we hit the road… but he gave us a little scare on the ride home. He had one of his “episodes”, and the Atavan didn’t seem to be working, so we were on the phone with our docs in BR at a gas station in Iowa, LA trying to figure out what the next step is. At the 30 min mark post-dosing, his heart rate was still very high, but we saw a slight and steady decrease… so we decided to drive another 40 min. down the road, and dose him again if we saw no improvement. Luckily, we did, and emergency was avoided. What a ride!
I will be making another post around the weekend, as I have much more news to share... more about our journey of faith with all that we deal with, and I hope you check back in for a little inspiration that God's plan is leading our lives.
Thanks for your love, support, and prayers - always needed, always appreciated. Love to all of you, may you be blessed!!
The Wilson Family