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.

Our house is about 75% unpacked and organized at this point (most of the remainder of the stuff is in our bedroom).  If it wasn’t for my in-laws, we would probably be at 20% unpacked!   We had a nurse on Saturday for 8 hours, but we haven’t had a nurse since then so either Daddy or I were on Hannah duty, which makes unpacking and organizing very slow.

We really like our Saturday nurse, which is usually our Monday nurse, but Saturday she definitely was not on her A-game with Hannah.   Constantly texting, watching Law and Order and other not-for-children shows on the television when she should have Hannah type shows on (we let them watch what they want when Hannah is sleeping), keeping Hannah on her iPad videos for much of the day, etc.   She even fell asleep on the couch holding Hannah while Hannah napped — all of this in front of my in-laws and us!   I know I need to confront her on this, especially if she is to become a 4-day week nurse for us but I was just so not in the mood to do it that day.

I got a call from the ER that Hannah was in last week.  Apparently her trach cultures grew out Staphylococcus aureas AND Haemophilus influenzae this time.  A few weeks ago, it was just the staph aureas.  I guess it would be safe to say the last dose of Cipro didn’t knock it out of her and then she got the virus on top of it.  Needless to say, she has spent a lot of time just cuddling and sleeping.   Her demeanor is better than it was last week, so that is a good sign.

It also seems to be a good sign that her O2 saturations overnight are somewhat better.  We are no longer seeing anything in the upper 80s anymore, but more in the low to mid 90s while she is sleeping.  Her respirations also seem to be more regular however she does still have spells of what is either sleep apnea or something else.  They only last a few seconds, but it is still something I need to let her pulmologist know on Wednesday when we see him.

The hardest part of the weekend (besides Daddy and I also getting sick with the flu, did I mention that part?) is having to get rid of a ton of Hannah’s toys.  Daddy and I decided that it would be smart to get rid of the toys that Hannah no longer plays with, which turns out to be at least 2/3rds of her toys.  Honestly, most of the ones I kept she can’t play with either, but I wasn’t ready to let them go just yet.  I’m just hoping that we can get her to play with them again.

Just two weeks after Hannah finished her last round of Cipro for trachiitis, it seems to have snuck its way back into her system.

She was doing okay during the day yesterday, but then about 4:30 pm she started burning up, becoming lethargic, really junky, tachycardic, and her respirations were really fast and shallow. By 5:30 pm, we made the decision to go to the ER again because she was in really bad shape.

They took us immediately into triage and then into a room. Even though we had given her tylenol 90 minutes earlier, her core temperature was still 102.6. They did a chest x-ray, trach aspirate, and took bloodwork. Fortunately her chest x-ray was clear (no pneumonia) and her bloodwork showed a higher than normal WBC (but not terribly high) and CRP.

It was trachiitis again. They prescribed us Cipro again since it does seem to work for her and discharged us. Again, they suggested that perhaps we should keep her overnight in the hospital, but the ER doc we had last time (who was not our doc this time) recommended we take her home since “we know how to take care of her” and that she “trusts us to come back to the ER if something isn’t right.”

Reality is we do have a mini-hospital in the house. There isn’t anything they could do overnight in the hospital that we can’t do at home. And believe me, if something isn’t right, we will be right back to the hospital faster than you can imagine.

What is getting scary about these last two times is how fast trachiitis creeps up on her and knocks her out. Within just a few hours she went from being normal (for Hannah) to a lethargic, choking, and burning up little girl.

We caught it early this time, thank goodness. We apparently need to be hypervigilant when it comes to getting her medical care if these symptoms come back. Even though my gut told me what it was, I needed the confirmation of the chest x-ray and blood work to confirm it and the antibiotic to fight it.

She did okay today. Exhausted, still junky, but in much better spirits.

The last couple of days have been pretty emotional for me.

Our nurse had left early on Monday, so I spent Monday afternoon cuddling with my Little Miss Hannah.  I didn’t mind one bit.   Then I was watching the Oprah farewell surprise show, and when Rascal Flatts came on to perform their song “I Won’t Let Go,” I found myself bawling.

When I first heard this song months ago, I had always felt a huge connection to this song.  Almost as if it is my promise to Hannah that I will always fight for her, even when she is tired of fighting.

Daddy and I both have seen a pretty drastic deterioration of Hannah’s condition in the past few months.   She doesn’t crawl anymore.  She can’t control her hand movements enough to even work the special needs apps on her iPad.   Her strength and tone has significantly deteriorated to the point where she only feels “safe” lying on the floor or being cuddled.  She doesn’t feel very comfortable even sitting in her therapy chair these days.

She is just so very weak these days.  I don’t know what is causing all of this.   Since the decrease in Klonopin, we have seen Hannah become more alert and smile more, which is wonderful.   But she has no energy or confidence to do any type of activity anymore.

It is heartbreaking to see my little girl like this.   I have been having horrible thoughts about the “what if’s” lately, and it scares me to death.

I’m trying not to dwell on this and enjoy every day with her.  I am so thankful that I can still make her smile, grin huge, and just give her all the love that makes her happy.

I am just scared of what the future is going to hold for her…for us.

Tonight, we have Hannah hooked up to both her humidified trach collar and her oxygen.   This is a first.

We actually haven’t needed to use the humidified trach collar (keeps her trach moist while she sleeps) in months in the old house.   I don’t know whether it is much dryer in this house or the fact that the air filter was incredibly nasty (which we just changed out this afternoon), but she has woken up horribly dry to the point she has a bit of difficulty getting a good breath.   This has happened all three nights here, even with me giving her saline bullets many times during the night.

Even after a nebulizer treatment in the morning, it takes a while with a lot of saline bullet drops to get her back to normal.  But the good thing is that she does get back to her normal clear trach secretions.   Ironically, after this past bout of trachiitis, she has been more gooky than usual which is common for her, so it was surprising how dry she became overnight these past few nights.

Also, she is still desatting into the upper 80s/low 90s while she is sleeping.   With the added oxygen, she goes back up to the upper 90s where she should be.

Even though the two aren’t meant to work together (at least I don’t have the proper equipment to do so), I have it gerry-rigged to make it work.  I know the oxygen is helping, and I am keeping my fingers crossed she wakes up more comfortable and moist.

We meet with her pulmonologist on June 1st to work on a game plan as to what changes we need to make.  I’m worried about her oxygen levels dropping while she sleeps, but I also am realistic that this very well may be part of her disease process as it has been this way with many Gaucher babies.

It is incredibly loud in our room right now.  I wonder if they have a quieter humidifier compressor because I can’t hear anything, not even the TV which is just about 10 feet or so away let alone if Abby or Ethan wake up and need me.

New reality?  Temporary setback?  Well, either way, hopefully she will wake up more comfortable and not so dry tomorrow morning.