Hannah had an absolutely horrible night last night.  She fell asleep at 1 am and was up again at 2 am.  Finally fell back asleep at 5 am until 8 am.

She has consistently had fevers up in the 101-102 range, and thankfully Motrin does work to bring it down.   After reading up on seizures and fevers (thanks to another GD mom), I do think that Hannah was having quite a few breakthrough seizures last night because they seemed to happen when her fever was at its highest.  Those seizures also were what kept her awake last night.

Ethan had an appointment scheduled at 10:30 am with our pediatrician because he has had 3 days of fevers and cough.  I called first thing in the morning to see if they could add Hannah as well.  They asked what was going on with her, and when I told them, they told me to bring both kids in immediately.

Ethan tested positive for strep.  Hannah likely has strep too.  Apparently Cipro doesn’t fight strep, so that would explain why she is feeling so horrible even though she has the Cipro for the trachiitis.  Ethan, Hannah, and Abigail were all prescribed Amoxicillin (Abby, even though she is feeling better, this is to knock it out).  Also, they sent Hannah for a stat chest xray down the street to rule out pneumonia (results came back clear).

Hannah was just not a happy girl today.  All she wanted to do was lie on me or her nurse.  No playing, no TV, nothing.  There were even times when she would roll herself off of us to lie down on the pillow on the floor.

Things started to get scary this evening when Hannah’s nurse noted that Hannah was showing signs of sleep apnea (stopping breathing while sleeping).  We both sat there for a few minutes and counted how long her apnea lasted.  It seemed to last 6 to 8 seconds each time, and then she would catch her breath.  It was nonstop.

I started getting very nervous.

Our pediatrician happened to be the one on call tonight, and she called me back immediately.  She didn’t want us to take Hannah to the hospital just yet, but to keep an eye on her.  If her apnea lasts longer than 12 seconds at a time, then we go straight to the ER at Sunrise.   But we want to try and keep her out of the hospital because there are so many other things she can catch (last time, she got rotovirus and cellulitis after her hospitalization).

We are to prop her upright while she sleeps and keep the motrin going.  She had her first dose of amoxicillin and is due for another one in just a couple of hours.

I updated and printed out her medical card (I have a one-pager listing all her meds, hospitalizations, diagnoses, etc.) just in case we do go to the ER.  We put the inlaws on “standby” so that if we do decide to go to the ER, they will be ready to pick up Ethan and Abby.

I don’t know what to expect tonight.  I’m nervous, I will admit.  I downloaded an app for my phone that is a stopwatch so we can get a real measurement if Hannah becomes apneic again tonight.

This is one of those days that the term “roller coaster” really applies to.

Great Morning

Hannah got in a good nap early this morning after waking up at 3 am “just because.”  She had gone back to sleep at 5 am finally until 8 am.  She then got another nap starting at around 11 am and woke up just in time for her therapy session with her Early Intervention coordinator.

They had their best session ever, and it was so exciting seeing Hannah really get into her therapy for the first time in MONTHS!  They worked on taking animals in and out of the “barn” (felt barn box), and Hannah really made a strong effort to do it.

You can see how the neuromuscular part of this disease along with the chorea movements really has messed her up.  She knows in her brain when she needs to do but she just can’t seem to get her body, especially her arms and hands, to do it.    It is heartbreaking sometimes watching her because you can just see how hard she tries to do something yet her body won’t let her, especially grabbing at toys.

But that was a great morning with a great therapy session.  Couldn’t ask for anything better!

Good Evening

We had the PTA meeting at the kids’ school tonight.  I was able to introduce them all to Hannah, share our story, and explain why this World Rare Disease Day is so dang important to our family (and to all kids with rare diseases).  They seemed for attentive as I shared the information, and the feedback I received back from them was that there was definitely a positive energy to do our “Jeans for Genes” day (all kids and teachers wear jeans) in recognition of WRRDay.  The only drawback we found out was that the school is actually closed on 2/28, but we would recognize it the Friday before.

Along with everyone wearing jeans, I shared the 7000 bracelet project with the Global Genes Project.   How amazing would it be to have the entire school create bracelets for this initiative?  850+ kids, all creating one special bracelet, in honor of another child suffering from a rare disease that most likely has very little research, very little awareness, and possibly not even a foundation attached to it?

It has to be approved from the principal, and I am keeping my fingers crossed she says it is okay.  Also, I have two wonderful people who are very well connected with the local media who will do their best to get our local (and possibly national) news to cover this story.  Positive thoughts she says yes!

As for Hannah, she did what she does best.  Cling to mommy, laugh, smile, and just be adorable.

Rough night

It wasn’t even an hour after we returned home from the PTA meeting that Hannah spiked a fever of 101.8.  Out of nowhere.  Her nurse always monitors her temperature every couple of hours, especially with Ethan and Abigail being sick, and it never went over 99.1 today (that was just one time).

Out came the Motrin and the cool washcloths.    She also started acting very cranky, tired (even after two great naps), and just not herself.   She acted exhausted all night long, yet she did not actually fall asleep until just now at 1:00 am.

What really made us nervous and on edge was the fact she was just so uncomfortable and making those similar types of twitching movements she used to make in her sleep (which we later found out were seizures).   But thankfully, once she really started getting tired, those movements completely stopped.  Since she, at this time, really only has seizures while she is asleep, then she was just really not feeling good.

So, even though we kept the kids away from her completely for the past day and a half, Hannah may have still caught whatever Ethan and Abby have.   Abby seems much better now, but I am bringing Ethan to the pediatrician tomorrow because he has been dealing with fevers and a rough cough for almost 3 days now.

Hannah is finally comfortable and asleep.  I hate the fact she has a fever now, especially since she is already on the Cipro for the trachiitis.  Whatever bug is going around should have been nipped in the bud with the Cipro, as it is a powerful antibiotic.

Hopefully she will sleep for more than a few hours tonight and get a good night sleep.  Even more so, I hope that the fever was just a fluke of some sort and that it disappears tomorrow.

It has been confirmed that Hannah does have trachiitis, but it is the bug normally associated with ear infections and other normal child maladies.   The good news is that the Cipro has definitely started helping, as we are seeing more energy and smiles from her.

The bad news is that Abigail and Ethan are both getting sick now.  Abby has been feeling crappy all afternoon, and I took both her and Ethan to the pediatrician (already scheduled well check, ironically).  She ran a fever of up to 101.1 and has been coughing all night.   Now, at 11 pm, Ethan is still awake coughing up a storm in his room even after giving him medicine and cough drops.

The kids’ pediatrician made it VERY clear that we need to keep Abby and Ethan away from Hannah while they are sick.   Croup is apparently going around she said (which my nieces also had), and that could lead to RSV in someone like Hannah.  As she strongly pointed out, “That is the quickest way for Hannah to land in the hospital.”

There seems to be a good chance we may have to keep both kids home from school tomorrow, especially if they are running a fever.  If that happens, I need to keep them away from Hannah and have them use a lot of hand sanitizer and washing hands.

What makes me more nervous is that I will be going back and forth between the kids and Hannah.  Outside of washing my hands a lot and using hand sanitizer, there are no other precautions I can take other than keeping my distance.

Ugh….

Another milestone that we are reaching by Hannah becoming 2-1/2 years old (in just a few days) is that she is eligible for the Make-A-Wish program.

What kind of wish would Hannah make?  It isn’t something we could ask her, obviously.  The one thing that keeps coming into our mind is Walt Disney World and spending time with Mickey and Minnie Mouse.   Being able to see all the lights and music, she would just love all of that since those are the two things she loves interacting with most.

After hearing the amazing stories from Cooper and other families who have done Walt Disney World, I am just blown away by the care and services available to kids like Hannah with significant medical needs.  From the Give Kids the World hotel to the first-class treatment in preparing for those “in case of emergencies”…. it is not something we could ever give to Hannah by ourselves.

Also, with something like this, we can go at Hannah’s pace.  We don’t have to rush to get everything in, but we can take it in slowly, giving her the breaks she needs to rest.

This type of setup would also give Ethan and Abigail a chance at being treated like royalty as well.  They so deserve something like that.   Hannah’s disease affects their lives directly in so many ways.  They have sacrificed so much these past two years in terms of activities because of Hannah’s condition, time spent with us, etc., that I would love to be able to give them something like this.

All Make-A-Wish activities are designed for siblings as well as the wish child. We know that your other children are experiencing grief, anger and deprivation from this illness also; and a wish can provide at least one outcome that is positive and fun for everyone.

Reality is that we would never be able to spend time as a family at a place like this on our own.  Hannah’s medical needs are just too significant.  But to be in the care of professionals who work with these kids all the time, who prepare for kids like Hannah…that type of gift would be immeasurable.

She may not be able to go on many of the rides (probably just the little kiddie ones with us), I don’t think that will matter.  The sites, the sounds, and yes, Mickey and Minnie would just be good enough for her!

They want us to contact them as soon as she turns 2-1/2, January 25th.

Never has a trach change been so dang stressful!

After the fiasco a couple of days ago when she decannulated herself and turned hypoxic and blue, we have been on a race to replace the smaller 3.0-sized trach with her normal 3.5 size.  Even though it may not seem like a huge difference, it really turns out to be.  The 3.0, because it is smaller, plugs more easily which is not great when you have a gooky girl!  Even the suction catheter seems to be tight towards the end of the trach.

We failed at our first attempt that first night as you recall:  “After we returned home from the pediatrician, we decided that since Hannah was calmed down that we try switching out the 3.0 backup for her regular size 3.5 trach.  Not a good idea.   Once we pulled the 3.5 out, she started screaming, crying, and breath-holding again.  Daddy then couldn’t get the 3.0 back in either.  Finally, I tried and was able to get it in.  Again, blood-tinged secretions blowing out of a trach is a very welcome thing after an event like that.”

We knew we were running out of time because her stoma (hole) was starting to close up around the 3.0, as if that was her new permanent size.

Last night, we decided to try again.  Really, we had no choice.

Taking out her trach was no issue at all.  But as soon as Daddy attempted to put the 3.5 in, Hannah immediately clenched up and had a breath-holding spell.  We saw some blood coming out of her stoma again (not enough to make us worried but enough to know her sore throat was scraped).  Back went the 3.0 in again.

We tried singing to Hannah as he made the second attempt.  But yet again, same exact thing.  Back to the 3.0, and we let her calm down for a few minutes.

Even though we knew she was upset and uncomfortable, we had to try again.   The third attempt failed, but it was different because we were able to keep Hannah completely calm while Daddy was trying to get the 3.5 in.   Picture Mommy and Daddy singing Elmo songs in a fun and lighthearted voice while internally freaking out because we need to get this trach changed out.

Because she was not freaking out on this third attempt and completely calm (and even smiling), we were able to slow down and really assess what the problem was.   She was breathing normally through her nose and mouth at this point, even though the stoma was closed.  We cleaned off the blood and extra water-based lube that was around her stoma and got ready to try again.

With Elmo songs being sung to a completely calm and smiling Hannah, the fourth attempt was a success!  The 3.5 is now back in, and I can’t tell you how relieved we were to see it slip in.

It seems that the third attempt was the key because it gave us a chance to try and get the stoma to stretch just a bit more so the bigger size could get back in.

Bottom line: Tantrum and breath-holding spell, can’t breath without trach.  Just being Hannah, can breathe without trach.

Bottom, bottom line: I don’t think this trach is ever going to come out…by our choice.  The risk versus rewards are definitely starting to tilt at this point, and this last few days really opened our eyes up to this.

Maybe this trach was a blessing in disguise?  (Did I just say that?)  As much of a pain in the butt that it is (and believe me, it is), it has kept her out of the E.R. because of her breath-holding spells and hypoxia spells (remember, we had 2 ER visits before the big one in May).