Archives for February 2011

All these night shifts, staying awake until 5 am every day, and then having to get the kids up at 6:30 am and get them ready for school today because Daddy is out of town for a few days…well, I finally hit the wall.

After Hannah’s nurse showed up at 8 am, after a very stressful time getting the kids ready for school, after Hannah being awake from 3 am until the nurse showed up, I decided to crash for an hour and a half.  I only had about 90 minutes of sleep, and I was just exhausted.  We didn’t have to leave until 10 am since Hannah’s CT scan was at 10:30 am.

Well, I must have snoozed on my alarm, because I didn’t hear it until 10:22 am.  Yep, we had to be across town in 8 minutes.

I had a raging headache when I woke up, which for me is usually a sign that I am just exhausted, so I just decided to “screw it.”   I told Hannah’s nurse we weren’t going to go, and I crawled straight into bed and crashed until 1:30 pm.  Looking back, it didn’t even cross my mind to call them to tell them we weren’t coming.  I was just so exhausted that I just needed to close my eyes.

Later this afternoon, I called the nurse who scheduled our appointment, and I told her the truth.  Unfortunately, the next appointment isn’t until 2/24 at 7 am!  I don’t know how the heck we are going to do a 7 am appointment since we have to get the kids to school, and driving with Hannah that far by myself is just something I want to avoid these days.   I know I’m going to have to call back and ask her to reschedule… again…

I will admit though, after I woke up at 1:30 pm, I felt so much better!  Headache gone 🙂

Hannah’s spleen and liver seemed to be getting larger again.   We made huge progress in shrinking them down when she started her Cerezyme treatments back in February 2009, but I’m a bit concerned as to why they are starting to grow again.

Dr. Bernstein, Hannah’s local specialist, scheduled Hannah to get a CT of her abdomen today at 11 am so we can see exactly where we are at.  We can compare this to the CT done back at the National Institutes of Health back in March of last year.

What makes me really nervous is that she has to be sedated for this CT.  After all the problems with the sedatives this summer when Hannah was hospitalized, even using any amount of a sedative is making my stomach anxious.

But I know this is important.  We need to have this information.

Remember that “rush” neuro appointment I set up a couple of weeks ago?   We had our appointment today at 3:30 pm.  We didn’t get into a room until 4:30, and the doctor didn’t come into the room until 5:05 pm.  We left the office at 5:17 pm.   See where this is headed?

We told her everything that has been going on over the past weeks from us noticing Hannah’s movement disorder getting worse around the holidays to her being really sick the past few weeks and the double-antibiotics, etc.   I told her about my concerns her movement disorder and how I wanted to work on getting a better handle on it.

Her reply?  “Let’s sit on it a month and see where we are at.”    Huh?!

It wasn’t just that part that was a disappointment.  Hannah’s nurse and I were rehashing the visit and conversation, and the more we talked about what was said, the more angry I got.

When we told her how sick she was and that we “almost went to the ER,” her reply was, “You should have gone to the ER immediately.  If you see any decline in Hannah, you should just go straight there.”   Um, no.  You don’t talk an already immuno-compromised child with strep and trachiitis to the ER and expose her to other things unless you have to — as per her pediatrician (which I agree).  There was nothing the ER would have done that we didn’t do — Motrin and keep close tabs on her.  Had things turned, we would have been to the ER in a heartbeat.

She also made the comment, “Whenever Hannah gets sick with something like this, there will be skills lost and a tougher recovery.”

When I asked about medication adjustments, she said “Well, we don’t have a lot of options.  You don’t want to put her back on Haldol, do you?”  Again, huh?!  Of course not!  This decreased her seizure threshold and was a total nightmare to wean off of.

I asked about the Klonopin — could she have become so used to it that it doesn’t work anymore, hence the increased movements?  Could it be that her dose is too low, and she needs more?   “Yes, that could be.”   That was the answer to both of those questions — either the Klonopin is completely ineffective or it is just too low of a dose?

We felt completely rushed during the visit.  She made the comment that she was overbooked that day and that she lives 80 miles away and has to commute.  We were obviously once of her last patients of the day.  She examined Hannah for less than a minute.

So, she wants to see where we are in a month and then start increasing the Klonopin.  That is “the plan.”   (Along with getting a Keppra level to see if Hannah is therapeutic yet).   A month can be a huge amount of time for Hannah, especially if her movement disorder continues to increase.

My plan?   Call the third (and last) pediatric neuro in Vegas and set up a consultation.  I don’t expect someone to have a complete understand of what is going on with Hannah, but I want a doctor who will at least look at Hannah as a patient and really consider what is best for her.

I wish, wish, wish we could get Hannah to see one of the pediatric movement disorder specialists in Cali.  But getting Hannah there is going to be so difficult, especially since we can’t drive and can only fly.   But we may just have to bite the bullet and do it.

Today was just a messed up day.

We found out Friday night from our nursing agency that our Monday nurse is no longer coming on Mondays, “Oh by the way…”.   So that means we have to train another nurse for Mondays, but since today was a Cerezyme day, I wasn’t going to have a new nurse start during her Cerezyme infusion.  Just would not be helpful at all.

So the plan was that Daddy was going to drive Hannah and I to the infusion center (because it is just not safe to drive distances, even 30 minutes, alone with Hannah).  He brought his laptop so he could work there while Hannah and I sat in the infusion chair for her treatment.   Also, being that I only had a couple of hours of sleep, it just wasn’t a good idea for me to drive anyway.

Our regular nurse was there, and for whatever reason, she could not get a good stick.   Three attempts, and she could not get a good vein.  Poor Hannah was just so upset by this point.   Never once, in the 2+ years that Hannah has been going for her bi-weekly infusion treatments, has Hannah ever had to miss a treatment because they couldn’t get an IV.  So, we had to reschedule her treatment for this coming Thursday — which screws up our Thursday plans and no future infusions, which we are no longer going to do on Mondays because we have the new nurse.

We came home, and our new nurse showed up.  Very nice lady.  Hannah tolerated her well, which is a good change from the time that she disliked a new nurse so badly she wouldn’t even go near her.  So I spent the day orientating the new nurse to our routine, Hannah’s toys and apps, and everything else.  About 5:30 pm, I was so exhausted from lack of sleep, Daddy came down to finish the day while I crashed.

Woke up at 8 pm tonight, and the new nurse was just getting ready to finish her shift.

Hannah’s naps were off also all day, so she didn’t take her second nap until around 5:30 pm.

Guess what time she fell asleep tonight.  12:15 am!!!   Yep, I just put her down a little bit ago.   Daddy fell asleep at 10:00 pm, and from that time until after midnight, she just sat cuddled next to me, smiling, grabbing my hands, and just being so dang adorable.