Archives for June 2011

Since Hannah is going to be turning THREE years old in a few weeks (end of July), she is going to be aging out of Early Intervention services.   I cannot believe how much time has flown!

Now the decision has come whether or not to put her into school or have her schooled at home this fall.

If we put her into school (hoping it is the same one as Ethan or Abby or very close), it would be 4 days a week for 2-1/2 hours a day.   She would get socialization and stimulation, which is all we would really want for her.   She loves music, singing, having books read to her, and just being around other kids (especially her siblings and cousins).   She would also get PT, speech, and OT during this time.

If we keep her out of school and have the school district school her at home, I think it would be something like a couple of hours a week.   PT, Speech, and OT would also come, but not as often as they would if she was in school.

The MAJOR problem is that they won’t allow us a one-on-one nurse or someone one-on-one for Hannah.   This is so close to being the deal breaker for us.   What if she pulls her trach out?   Having a nurse “on campus” is not going to be helpful when you are dealing with a child who loses their airway — what if the nurse is with another child?  Heck, what if the nurse is in the bathroom?    Not only that, but what if she gets really upset, especially being in a place where she doesn’t know anyone, and she gets upset, which leads to her breath-holding spells, then becoming hypoxic which may lead to another tonic-clonic seizure or possibly even a stroke?   If there is no one there she feels comfortable with to calm her down, what then?

The only way she can get one-on-one nursing is if she is on a vent.   I don’t want to have to have Hannah’s condition deteriorate to get the type of care that we feel she should have.   After talking to some people at the school district, she will be one of the more medically fragile kids they have had – but not by any means the most medically fragile.

I really want her to have that socialization and stimulation that being in school would bring her.  We know she isn’t going to get a traditional education, and reality is, she doesn’t have the development or capacity for anything more than what a 12-month old can learn.  But she does love interaction, loves trying to color, and we know she would thrive with that stimulation.

Daddy thinks we should try the school setting first and then we can always bring her home.  If we do decide to do that, I can assure you that I will be sitting right outside that school’s front door WITH the teacher and administration knowing I am there in case something happens.  But I just feel like I shouldn’t have to wait outside for 2-1/2 hours each day because she isn’t getting the type of looking after she needs.

I don’t know.  I REALLY don’t know what to do.

Hannah and I are well on the way to fully recovering from her trachiitis and my viral meningitis/exhaustion.   I’m feeling better than I have in months.  It helps that I make a point to get at least 6 hours of sleep at one time instead of 2 or 3 2-3 hour naps.

Hannah too is feeling much better.  She is more alert, happy, and just full of smiles.   She is starting to roll over again (back to front), which is a skill we thought she had lost because she hadn’t been able to do it in months.   She even tried to get onto her knees from her stomach, although the effort failed.  But at least there was intention and an attempt!

The kids got out of school today, so it is officially summer break.

Last summer was just horrible.  We moved from Texas to Vegas.  Hannah and I were in Texas until the end of June, and Hannah didn’t get out of the hospital until middle of July last year.  At that point on, it was all about Hannah’s recovery.

This summer, Daddy and I have decided to focus on being a family, doing things as a family, and just keeping it low key.   Hannah may not be able to do many of the things we plan to do, but there are quite a few that she can go with us to such as the children’s museum, the Bellagio hotel fountains, night at the park movies, and things like that.  We want this to be the summer that the three kids have fun together, as much fun as possible anyway.   We also want the kids to have fun with us, mommy and daddy, I we have actually set up a daily schedule that blocks out playtime with me so we can play games, go to the movies, bake cookies, etc.

We don’t know what next summer holds for our family, but we aren’t going to dwell on it anymore.   Hannah is here now, so we are going to do what we can together.

I just want this summer to be fun.   Family fun.  And as long as Hannah is still full of smiles, we are on the right track!

Wow, what a difference a year makes.   Hannah was trached one year ago today.   I don’t know what possessed me to look, but that was one of the single-most life-changing days in Hannah’s life (and ours).

What is most ironic is that the same Dr. Roy from Texas is pushing forward with getting his Nevada medical license so he can continue to care of Hannah.   I had just received an email update just last week letting me know it was still in the works.

 

From the moment we were in the ER, Daddy decided he had enough with the nursing situation.   We both know that a lot of my exhaustion has to do with not having lost so many days of nursing over the past couple months, especially last week.

Within those few hours from admission into the ER until the time of my lumbar puncture about 5 hours later, he had already talked to our insurance company, a new nursing company (recommended by a friend), and had about 15 conversations with various people about our situation between that time.

Saturday morning, he had an appointment set up to sign paperwork for this new agency.

And get this, they already have a full schedule ready for us this week starting Sunday!  We plan to eventually take our Sundays back to ourselves but for now, we need the help with me in recovery).  Even better, one of the nurses who is going to be with our new schedule is one that we have had many times at our old nursing agency (she left to go to the new agency, I guess), and Hannah does really well wit her.   She is even rearranging her schedule so she can take on Hannah.

There is a bit of guilt, I admit, because I know the agency was trying their best to fill for us.   But the guilt lessens after we realized how much this lack of nursing help really jeopardized my health this time.  I can’t be awake 24-hours a day, and I really shouldn’t have to be.

Keeping my fingers crossed this works out.  If we can get back to a normal schedule with our 56 hours a week with regular nurses that will be a huge step closer to getting back some normalcy in our lives.

I just got home after being in the hospital for 3 days, 2 nights.  Yep, me.   For what?

Viral Meningitis.  My spinal fluid was infected.

It started last holiday weekend when we didn’t have any nursing since that Saturday afternoon (until Wednesday).  Monday, Memorial Day, I was really feeling run down to the point I couldn’t do much other than sleep and sit on the couch.

Tuesday was Cerezyme day, and we were supposed to have a nurse that day.   Even though I was exhausted, I decided to let Daddy sleep an extra hour since he would be taking Hannah to her appointment.

Surprise, surprise.  The nurse doesn’t show up.   So on two hours sleep, already feeling like crap, I went with Daddy to the appointment.   I should have known then, but looking back something was not right then because I started getting nauseous there and had to sit down in the back room.  I chalked it up to exhaustion, but now I know it was more than that.

We finally had a nurse on Wednesday, but by then I was already completely run down and starting to get nauseous more often and the headaches started.    Pounding headaches.  800 mg Motrin took the edge of them, but never fully got rid of them.  I had to cancel Hannah’s appointment with her pulmologist because there was just no way for me to drive in this state.  During my night shift that night, I was praying that Hannah would fall asleep so that I could lay in bed with her just to put my head down (she didn’t go to sleep until after midnight).

Thursday was a miserable day.  I started getting more nauseous, feverish (with chills), having trouble catching my breath, and the headaches got stronger.   It got to the point I started throwing up gatorade, which was all I was able to get down up until that point.  I was in so much pain, it truly was unbearable.  I woke Daddy up at around 3:30 am crying begging him to take me to the ER.   He was trying to figure out what to do because we couldn’t take the three kids to the hospital with us, especially Hannah who still was susceptible to everything because of her trachiitis.  My in-laws could take Ethan and Abby, but we needed someone with the skills to take care of Hannah.  It just wasn’t meant to be.

Finally, I took a Lortab around 4:00 am and that took the edge off my headaches enough so I could get some sleep.

Friday morning, we had to leave Hannah with ANOTHER new nurse (a rule we make a point not to break), and Daddy took me to Urgent Care.   I was in such bad shape that I had to ask to let me lie down instead of sitting in the waiting room because I was in so much pain and dizzy and my blood pressure was through the roof.   The Urgent Care doc came in, asked me a few questions, and they he sent me down the street to the ER.

“If this is the worst headache you have ever had, then you need to go to the ER and get an emergency head CT.”   Urgent Care called them to tell them I was coming.

They took me in pretty quickly.  Got blood work, set up an IV.   They gave me pain meds for the headache, and I was so grateful because they started working!  Then the sleeping started.  It seems like once the headache started lessening, I slept every single moment I was able.  And I mean EVERY moment.   The doc set me up for a head CT, which was normal, but he also wanted me to do a lumbar puncture to see if there was an infection or blood in my spine from a brain bleed.

By 7 pm, we started seeing the results from the LP come back.  Abnormal.   “Looks like” meningitis.

Meningitis!  I always thought meningitis was something from the 1800s or something!

Between the meningitis and my high blood pressure (averaging about 175/100, up to 205/125), they decided to admit me.  They wanted to rule out bacterial meningitis (hoping for just viral meningitis) and start getting my blood pressure under control.

The next two days were an absolute blur.  I slept A LOT during that admission.   I know I had a brain MRI, chest x-ray, and 2-D heart echo done and a ton of  blood work twice a day, and a lot of meds.   I still couldn’t eat anything, but I finally was able to get down some fruit and a fruit smoothie right before I was discharged.  But most of the time, I slept.

They put me on morphine for my headaches.  It worked, but man I don’t like the way morphine makes you feel those first 10 minutes or so!   The headaches were still incredibly painful, but the morphine did help keep them in check.  We tried tylenol first but that didn’t help at all.

Finally, I got word that my LP results didn’t grow out any bacteria and that I could go home.   So I was discharged around 4 pm (Saturday), and it was the happiest time in my life.   As soon as I got home, I saw Hannah on my father-in-law’s lap, scooped her up, and just sat down on the couch cuddling her (with approval from the doc that I am no longer contagious).

Daddy went out and got my meds, 2 blood pressure meds, an antiviral, and a headache med (Fiorcet) which thankfully helps.    But what was the second thing I did after I hugged Hannah?   Fell asleep for another couple of hours.

Obviously my body was trying to tell me something.   I can’t go on living like this anymore.   The lack of sleep, the stress, etc.  Daddy and I know we need to make some major changes in our “life plan” right now, and he made the first big one for us earlier today (which I will share in another post).

The leading theory is that my body is so worn down, my immune system is so low, that any type of exposure (maybe to one of Hannah’s viruses or one when we were in the hospital a couple of weeks ago) caught hold and I just couldn’t fight it like most people can.

All I know is this could have been so much worse.   I feel like I was really lucky it wasn’t a stroke or heart attack or something else like blood on the brain (from the viral meningitis).

I need to figure out a better way to do all of this … I need to be healthy.  I want to be healthy.