Wednesday, September 08, 2010

Girl's update!

Since our last follow up appointment at UCLA, in June, there has been a lot of good and not so good things happening for the Curran Girls. Let's bring you all up to speed, and start with Jenelle:

The medication changes for Jenelle have gone smoothly thus far. It took a few weeks, but we finally got her on a proper dose of Risperdol for her behavior. The difference is amazing. The sad part of the medication increase is that Jenelle appears docile, and "drugged" most of the time, which is most certainly the case. But with the overall calmness in her, is seems she has more control of herself. Not as much kicking and biting (which is good) and less pulling her hair out too. Now that we've finally mastered the right dose of Risperdol, we are going to start the Vimpant next week.

The summer passed for Jenelle pretty smoothly as far as seizures are concerned, but we had a few hiccups with her mic-key button/g-tube. One Saturday morning in August, Jenelle and I were home alone, while Jack and Brett were at football practice. We had a lovely morning and I had just fed Jenelle lunch. After lunch, I was planning a trip with Jenelle to the grocery store, and as we walked down the hall to the garage, I saw something on the floor in the hall... her mic-key button! Apparently, it had fallen out!

Immediately, I got our spare and took Jenelle to her room so I could reinsert it. I'd been told that if they are out longer than an hour, the hole to her stomach can seal up. I had no idea how long it had been out, but realized that when I fed her lunch, I didn't notice any "contents" oozing from her stomach, so it could have been a while. I tried to insert the replacement mic-key button, and it wouldn't budge. So, off to the ER we went where they saw us immediately. Since Jenelle has had her mic-key button for 5 years, the ER doctor told me it was unlikely that is sealed up. They applied a little lidocaine, and with a lot of effort they were able to get her mic-key button in! Jenelle giggled throughout the process.

The following Monday, I called our medical supply company to order a new replacement mic-key button, and they said they did not have authorization and that we'd need to see her GI. Luckily, Jenelle got in for a cancellation appointment the next day and we saw Dr. Idriese. Jenelle was due for her annual visit anyway.

All year I had been planning to ask Dr. Idriese if we were ready to completely get rid of the mic-key button. Jenelle has been taking food and medication by mouth for months now, and in light of our recent emergency, I thought it would be a good idea. Dr. Idriese didn't agree and made me realize that Jenelle will always be medically fragile, and if she were to get sick, she would get sick very fast so it was good to have a safe guard in place. Dr. Idriese was very impressed with Jenelle's new eating skills, and said that Jenelle was actually a "little overweight" on the chart for her age! (HUH?) If you've seen Jenelle in person recently, you know that she is far from overweight. If anything, she is so muscular, the muscle mass could be the factor on the scale. Anyway, Dr. Idriese took Jenelle off Pediasure and wants to see her in 3 months to make sure she is getting enough vitamins.

Jenelle has had a wonderful summer and is doing more new things. Recently, she has started reaching out and "retuning" hugs. She will actually put her arm around your neck. It is absolutely adorable. Also, Aunt Nicki was the proud recipient of Jenelle's first kiss (that Jenelle planted on Nicki!) Jenelle is just a love bug, and very happy. We couldn't be more pleased.

As for me, my summer has not gone so smoothly. I caught a cold/sinus infection in June and it just hasn't been easy to get rid of. When I last saw my oncologist, she told me she wanted to start seeing me every two months instead of every month. This had me very excited until the nurse practitioner called me in August to know why I hadn't been in to see her. Apparently, I still have to make the trip to UCLA every month, I just get to see the doctor every other month! So, I went to see the nurse practitioner, Karolina last Friday and all was well except that I had another sinus infection. This is my 4th sinus infection since June, so Karolina wants to get me into an ENT to make sure all is well. She prescribed me a really strong antibiotic on Friday (Biaxin) for 14 days and she wanted me to start again on the ATRA (Vitamin A Chemo) on Monday.

I started Biaxin on Saturday, and noticed that I started to have a dull headache throughout the day. We had a wonderful Labor Day weekend with lots of swimming and parties, but nothing stressful. On Monday, I started my ATRA, and by that evening, I had the worst headache of my life. I started vomiting, and my vision was blurry, so Brett and I paged Dr. Territo. She called back right away and told me to go to the ER.

Because it was close to midnight, I decided to try to make it to the morning. After some sleep, the headache was not as intense, but clearly not gone, so Brett took me to the ER where I got in very quickly. Because of my history with Leukemia, the ER took it very seriously and ordered a CT Scan right away. Prior to the scan I got an IV and a wonderful drug (Dilauted) that made the pain go away. The ER doctor called Dr. Territo and they both agreed, if the CT did not show a tumor or brain bleed, they wanted a spinal tap to rule out meningitis. Lucky me, the CT scan was clear (or "anatomically" correct as Brett argued with the doctor because Brett refused to believe I had a normal brain) so they prepped me for the spinal tap.

Compared to an epidural, and a bone marrow biopsy; the spinal tap was a breeze. I had to lie flat for an hour after and to wait for the results - which were normal. They did send some of the spinal fluid out for a culture test, but I won't have that result for another day or two. Having had cancer, it's one of those things we've learned all too well with Jenelle that you have to rule everything out as they could get out of hand quickly if undiagnosed. I'm relieved it isn't something serious, but am still in pain with the headaches that come and go. I spoke to Karolina today, and they have decided to stop the Biaxin. I hope that is the culprit, and that tomorrow is a new pain free day!

So, that should bring you up to date on the Curran Girls. Jack started school last Thursday at a new school and absolutely loves it. Last May, we decided to move him to our local public school so that he could be with friends from Little League. So far, the change has been great! He and Brett are both busy with football, and slowly we are getting into the coming Fall season.

Jenelle starts school tomorrow in the same program that she was in last year with the County. Her IEP is next Thursday, and Tustin Unified would still like to move Jenelle to a new school. Obviously, with the changes we plan to start with her seizure medications we would like to keep Jenelle in her same school, and in an environment where her teachers and caregivers know how to recognize her seizures. Hopefully the District will agree.

Thank you for continued thoughts and prayers - I'll keep you posted!

1 comment:

ANewKindOfPerfect said...

I sure hope you feel better soon! It's no fun having all those tests done but it's definitely better safe than sorry. Glad your brain is "anatomically correct". :)

I've always worried that Emily's g-tube will come out at night and I won't be able to get it back in. Knock on wood, that's never happened, but she does pull it out a lot. I'm glad that it wasn't too traumatic for Jenelle! I hope you get the extra one soon. I wish they would give standing orders and authorizations for things like MicKey buttons. It's great that Jenelle is taking everything by mouth! I can understand Dr. Idries wanting to leave the button in place. Dr. Katz has told me that even if Emily takes 100% of her nutrition and meds by mouth, he wouldn't take her button out. They are just too fragile and when Emily goes downhill, she goes down fast.

It's great that Jenelle is doing some new things, and getting hugs and kisses is AWESOME!