Shortly after I posted my blog last night, we went into crisis mode with Hannah.

She was so congested in her trach all of a sudden that she would wake up choking and then go into a breath-holding spell out of panic.  Even if I was able to clear out her trach, she had problems relaxing right after so she would start to turn blue because of the breath-holding.  She was incredibly junky with her trach, and very quickly the aspirate was thick, gooey, and brownish-green.   She had three episodes like this within about 2 hours.

Infection.

She would fall back to sleep but still be breathing pretty shallow.  You could tell she was working harder than normal to breathe while she was sleeping.   She had no fever, but with such a rapid onset of infection coming from her trach, I started to worry about pneumonia.

After all, it was one year ago this week that Hannah developed the pneumonia that put her in the hospital for six weeks and put our lives in hell and changed her life forever.

Daddy and I contemplated from about 12:30 am until about 2:00 am whether or not we should take her to the ER.  We brought her downstairs where the oxygen concentrator and pulse ox were, and for about an hour, we concentrated on keeping her suctioned and giving her supplemental oxygen (5 liters pushed through a mask).   Before we gave her oxygen, her O2 sats were hovering between 88 and 91.   With the oxygen, she was at about 94 to 96 and much more comfortable.

So we made the decision to ride it out until the morning (a few hours later) to see how she was doing.   Deciding to go the ER around here is a delicate balance and not an easy one.   1]   We know that she could catch something else (like how she got rotovirus and cellulitis last time), 2]  We have Ethan and Abigail at home so we don’t want to unnecessarily scare them about her condition, and 3] We go through our heads “what could they do that we can’t”.

Daddy and I switched roles at around 5 am, and she seemed to be stable.  Definitely requiring oxygen and lots of suctioning (where we usually rarely ever have to suction her), but much more comfortable and no more breath-holding panic spells.   So I took a quick nap for a few hours since I had been up all night.

Since our pediatrician’s office is not open on Sunday (which also happened to be Mother’s day), we decided to take her to the ER on a non-emergent basis.   We weren’t sure if we were dealing with pneumonia or just trachiitis or even possibly a UTI.  We wanted to get her a chest xray, blood work, and get her some antibiotics.  We didn’t want to wait until Monday, so we went to the ER.

Because we did it later that morning and in a more relaxed setting (not an emergency), we were able to explain to the kids why we were taking Hannah in (mostly that we would do it at her pediatrician’s office if they were open, but since they aren’t, we just wanted to get her checked out and get some medicine).  We don’t want them to worry unless there is something to worry about.

Even though we were taken back immediately when we got to the ER, we were there for almost 7 hours because they were so busy.   Her chest x-ray was clear, and since there was no fever, there is likely no pneumonia.   Her bloodwork came back with an elevation in her white blood cells at about 17,400 so there was definitely an infection.   Her urinalysis came back clean, no UTI or anything else worrisome.

The ER doc wanted to admit Hannah because of everything going on (we talked about the last few weeks), but we decided to bring her home and let her pediatrician follow up tomorrow and her neuro to follow up on Tuesday.   After explaining to the ER doc (who was very interested in Hannah) that we have a mini-hospital at home (oxygen, pulse ox, home nursing), she also agreed that since there isn’t anything they would do different in the hospital that it would be okay to take her home since it is presumed we are dealing with a bad trachiitis at this point.

They gave her some IV Cipro before we left, and we  have a prescription to continue with the Cipro for another 10 to 14 days.

We came home, and she has been doing much better tonight already.   She and I are downstairs tonight because we still have her on supplemental oxygen until we can get through this thick gook.   I have been doing a lot of suctioning, but not as much as last night, and no more panic-breathing attacks from her.   I really think the IV Cipro definitely kick started the recovery process because she is just so much more comfortable tonight.

So I ended up spending my mother’s day at the ER (since we left at almost 7 pm).   But you know what, that is okay.   Because at the end of the night tonight, I had all three of my babies at home with me.    That makes today a Happy Mother’s Day.

I remember taking this picture back in January.  Hannah was sick, just not feeling well.  If I had taken a picture of her today, it would look very much the same as this one.

It started a couple of months ago.  We noticed she wasn’t herself, but it was not very noticeable.   Then a week before our trip to Florida, we noticed that she was really “under the weather.”   Now that we have returned, she still is not herself, but she is getting worse.

She has stopped crawling.  She has developed significant ataxia (balance problems) to the point where she can’t even sit up unassisted without falling over.  Worst of all, her movement disorder is the worst we have ever seen it, even with the increase in Klonopin.

She doesn’t want to play.  She only wants to be held and cuddled.  On the rare occasion, she will sit and watch her Wiggles on the iPad, but even then you can see her struggle (and sometimes fail) with her balance.

Something is going on.

We had one of our favorite backup nurses who we haven’t seen in a few months today.   She commented on how much different Hannah’s disposition is between the last time she saw her and today.  “She is like a totally different child.”  And not in a good way.  She reminded us that just since her last visit in early March, Hannah was crawling from one side of the room to another and that she “had to chase her around the room.”

Her trach gook has been clear this entire time up until tonight when it started getting cloudy.

So what is causing this rapid deterioration?

An infection?   Progression of the disease (but this fast?)?  Could the increase in Klonopin over the past couple of months be causing these ataxia problems (which is a possibility)?  Combination of any of the above?

We got an emergency appointment with her neuro for Tuesday, but I think we may even check in with her pediatrician on Monday.   Something just isn’t right, and I just don’t know what it is.

I knew this trip was going to be hard on Hannah. After all, she isn’t used to having such jam-packed days in a row like we did in Florida.

But I didn’t expect her to catch a bug of some sort.   She has been running a low-grade fever for a couple of days (today being the first fever-free day) plus she just isn’t her playful self just yet.  She really just wants to lie down and be cuddled all day (with the exception of sitting up to watch her Wiggles on her iPad).  She is just really exhausted.

Her Tuesday thru Thursday nurse has been absolutely wonderful with trying to slowly get her back into a routine.   She has been putting on her DAFO braces twice a day for 30 minutes, and Hannah has done really well in tolerating it even if she isn’t bearing any weight these past couple of days.   Hannah has no interest in the stander at all and very little interest in sitting in her chair.

I got an email from the guy who ordered our stander, and it is ready!  They just have to make sure it fits Hannah’s size requirements, and then they will bring it out to us.  You know, I can’t even remember what color we ordered…that is how long it has been!

Tomorrow and Friday are more easy days for Hannah.  No appointments except for her Early Intervention specialist whom Hannah just loves so it will be more like playtime than work.  Also, thanks to a wonderful generous donation by my friend Julie, we are able to order Hannah some of the therapy items we have been longing for this past year including a special needs swing and therapy bench!

We got the keys to our new house, and we went by after school with the first of many loads of boxes to deliver.  We figure the more boxes we move ourself, the less money we will have to pay movers if they just do the big furniture-type stuff.

As for me, I think I’m coming down with something too.  I have had the beginnings of a sore throat all day, and I’m starting to feel like ick.   Great timing, no?

I am hopeful that with this week of Hannah just resting and slowly getting back into a routine that she will want to be more active next week!

In less than 8 hours, the limo that Make-A-Wish arranged for us will be picking us up to take us to the airport for our Disney World trip.   Ethan and Abigail were so excited that they didn’t fall asleep until 11 pm.

The bags are packed for the most part, only the toiletries and the kids’ toothbrushes remain unpacked as well as my laptop.  We ended up with 3 check-on luggage and 8 carry-ons (two medical bags, my purse, and a carry-on for each of us).

Whether it was fate or coincidence, our medical equipment company had come out on Thursday to measure Hannah for her stroller wheelchair.  When we were talking about the trip, he had said that they just received a donation of a stroller-wheelchair just a few days prior and if we wanted to borrow it for the week, we could and that he would adjust it to her specifications so we didn’t have to bring her in to pick it up!   It wasn’t the same brand as the one we are getting, but it still would do everything we needed.  Talk about a godsend!

After picking it up Friday afternoon, we tried it out with Hannah.   We knew that Hannah has been having a really difficult time keeping her balance in her regular Chicco stroller because we were constantly trying to adjust her for comfort.  But it wasn’t until we saw her so comfortable and secure in this stroller that we realized how much her balance and control has been lost just over the past six months.

It was just another slap in the face reminder that her disease is progressing faster than we had realized when looking at her day-to-day.   Even looking at pictures and videos from just six months ago shows her to be stronger and in more control of her movements.

Even though I’m excited for our trip to Disney World, I can’t help but have bittersweet feelings about this whole thing.  Daddy and I have both talked about how the purpose of Make-A-Wish is for kids who are losing their battles with illness, at least in our respect.  The whole “last great wish” thing.  I remember that part of me that wished Hannah wouldn’t qualify for MAW because that would mean that she wasn’t really as sick.

But it is time to tuck these feelings away for now.  Time to spend seven amazing days living an adventure that we could never do ourselves.   Time to just be a family without the stress of doctor visits, therapy, and treatments.

Time to just have fun together as a family of five and create fun and happy memories that we will cherish for our lifetime.

 

We had our meeting with the Make-A-Wish volunteers tonight.

They came to bring us our itinerary, talk about the trip, and even spoiled the kids with some really cute pajamas!  Abby and Hannah got matching Minnie Mouse pajamas, and I KNOW that is a picture waiting to be taken.   They also got Hannah an adorable summer outfit, shoes, and sunglasses for the trip.   They also gave us our MAW Tshirts and blue pins!   They also scheduled an early morning “breakfast with Minnie Mouse” for mid week — I just hope we can get Hannah up to make it!

As we were going through the plans, it turns out that the MAW coordinator had to change our departing flight from Saturday evening at 5:30 pm to Sunday morning at 10:00 am.  It seems that our very early arrival (right after midnight) on Sunday morning would not have been doable by the Give Kids the World resort because they would have no one there for us.

Even though I am a bit bummed because we no longer get to spend Easter day there and do the GKTW activities, I know that it is only a small nugget of the amazing experiences and events that we will have this next week and the memories that we will get to create.