Last night, Daddy and I had one of our reality discussions about Hannah that we have to have but just sucks that we have to have.  We have both seen the deterioration in her condition, especially over the past month.  How much of it is chalked up to being sick with trachiitis and strep plus being on the amoxicillin and cipro for the past two weeks plays into this is still a question, however.

When I came down this morning, Hannah’s nurse commented to me that she thinks that Hannah’s movement disorder has gotten much worse just in the past few days.   Today is especially worrisome.  She doesn’t crawl more than a foot or so, and she has to really want something for her to even go that foot.  She will slowly go one step, go back to her W sit to balance herself, and then she will try for another foot.

For the first time, she didn’t crawl to me this morning.  She just cried until I picked her up.  I was only three feet away.

Her hands and face are constantly moving now.  She has gone back to holding her hands together so that they don’t keep moving.  I wouldn’t say it is as bad as it first was in the hospital this summer, but on a scale of 1 to 10, 10 being severe, I would say we went from a 3 to a 7 in just a few weeks.

Hannah’s next neuro appointment wasn’t until February 18th.  I called this afternoon, and the earliest Dr. Brown can see her is next Tuesday.   Today is the last day of the cipro, and we only have two more days of the amoxicillin.  She will be antiobiotic-free for a few days before that appointment.

Playing with her toys and at her desk is what Hannah does every single day.  She loves to play.  Not right now.

It is so hard to see her body working so hard against her that all she wants to do is be held.

Yep, she did it again this afternoon while her nurse was changing her trach ties.  She yanked her trach out again, panicked, and started turning blue again.   Thank goodness we had the oxygen this time because we were able to force oxygen in her lungs while she was having her breath-holding spell.   Her nurse couldn’t get the 3.5 back in so she put in the smaller 3.0 size.    We kept the oxygen on her for a few minutes afterwards while she caught her breath and regained her color.  THIS is the reason we needed the oxygen!!

Her nurse and I both tried to switch out the 3.0 with her normal 3.5 later this afternoon.   No luck.   With her trachiitis and strep along with all the bloody secretions from the trach scratching her throat, she was in pain, clenched up, and we just couldn’t get the 3.5 in.

So here I sit, waiting for Daddy to get home from a work event.  My stomach is in knots knowing that we have to try and get the 3.5 in again tonight.  Knowing that she is going to have another breath-holding spell because she is upset, panicky because of the pain, whatever.  Knowing that because her throat is still so sore and raw that is not going to be a very easy task… not even sure if we will succeed tonight.  Ugh…

Guess who turns 2-1/2 years old today  🙂   I feel like it is another milestone reached, you know?

There is this little song that I made up to sing for Hannah that she just absolutely loves.  I sing it many times a day, especially in those cuddling moments where it is just her and I lying together.  Even though she may not be able to speak or share words, I can tell how much she loves it by the smile on her face and by the expression in her eyes.

I love Hannah, yes I do,
I love Hannah, it is true.
I love Hannah in every way,
I love Hannah every day.

A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above –”
This special child will need much love.

“Her progress may be very slow,
“Accomplishment she may not show.
“And she’ll require extra care”
From the folks she meets down there.

“She may not run or laugh or play,
“Her thoughts may seem quite far away.
“So many times she will be labeled”
‘different,’ ‘helpless’ and disabled.”

So, let’s be careful where she’s sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.”

They will not realize right away”
The leading role they are asked to play.
“But with this child sent from above”
Comes stronger faith, and richer love.

“And soon they’ll know the privilege given”
In caring for their gift from heaven.
“Their precious charge, so meek and mild”
“Is heaven’s very special child.”

Thanks Addy’s Mom for sharing this and tagging me on it.  Our girls definitely are so much more special than anyone could reality, and it is truly a gift to be able to be Hannah’s mom.

Hannah can’t seem to catch a break this week.

She has definitely started towards the road to recovery.  However, she is now having these pseudo-coughing spells that are causing blood to splatter out of her trach.  She can’t really cough like we do, but it is like she is trying to cough out the gook in her trach, and it just doesn’t seem to come out.

You know when it takes 10 to 15 tries and a lot of pain and work to get a tickle out of your throat?   The heaving, the strained face, chest hurting cough.  That is what she is doing.   Suctioning doesn’t help much as it is not in the trach, so all we can do is hold her while she goes through it and add some sterile saline bullet drops to help break up the gook and think out the blood-secretion mix.

The only difference is that because she has a trach AND strep AND trachiitis that every time she has this cough, the trach scrapes her already inflammed, sore, and irritated throat.    This, we have learned, is where the blood comes from.  It isn’t a lot of blood, but it is usually blood-tinged secretions and, for lack of a more PC term, she coughs out what looks like a bloody boogers.

After reading stories and experiences from other trach moms, this is rather common when kids are sick and they have coughs.  It does make sense physically why it would happen.

I’m not sure what worries me more during these episodes though …. the strain and pain she goes through which make me feel like she is going to pass out or have a seizure…or seeing bright red blood and blood-secretion mix fly out of her trach or into our suction catherer.

The jury is out on that one.

Hannah seems to be doing much better now, thank goodness.

Last night was very iffy, as we almost went to the ER when her fever hit 103.1 around 11 pm.   Daddy and I kept going back and forth with the “do we go” or “do we not go.”  She was having no sleep apnea at that point, so we decided to give Motrin a chance to work again.  Sure enough, an hour later, she was down to 100.3.  Two hours later, 99.1.

We kept her propped up all night, constant suctioning, constant monitoring, etc.   She hadn’t eaten all day long, and she barely tolerated pedialyte.   But finally through the night, she kept the pedialyte down, and we were able to give her about 13 ounces over a 12-hour period.

We kept her in our bed instead of her crib so we could keep a closer eye on her.  Finally, at 5 am, Daddy and I switched roles, and her nurse showed up at 9 am to take over.    She spent the morning not feeling that great.  However, I think with the addition of food which she started tolerating (about 1/3 her normal rate at first), 3 doses of the amoxicillin in her body, and just getting TLC and love gave us the turnaround we hoped for.   By the late afternoon, she was starting to play with her toys, chasing after her iPad that her brother had “stolen” from her, and was laughing and smiling more.

Here we are, 24 hours later, and Hannah is sleeping in her crib.  She is still really gooky, and I’m having to suction immediately now because she it is really thick still.   We have moved her feeds up to 2/3rds her normal rate, and she is tolerating it really well.   We haven’t noticed anymore sleep apnea, thank goodness!

As for fevers, we are still on round’the’clock Motrin so we aren’t giving her a chance to get a fever higher than 99.8.   Tomorrow we will start cutting that back.

What a difference a day makes… another hospitalization avoided…THANK GOODNESS!!!!!!!   I dreaded, dreaded, dreaded the thought of having to go back there with her.  Almost made me cry.  Well, if Daddy tells it, it did make me a bit emotional when we were discussing whether or not to take her last night.

It is cliche, I know, but Hannah really is an amazing fighter.  Strep AND trachiitis, and yet she still has the strength to fight it along with everything else she is dealing with.

Love my girl