Archives for January 2011

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

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….