Archives for October 2010

Great news: No pneumonia!  Hannah’s chest xray came back clear, so pneumonia has been taken off the table.  We are still waiting on the cultures from her trach aspirate.  Hoping it is not another nasty bug like the pseudomonas or MSSA, but she is already on the Cipro, so if it is, we will already start knocking that out.  Hope to hear about that tomorrow.

Bad news: Because of Hannah’s weakness on her left hand and arm, she has been using it upside down when she crawls and plays.   Her nurses and I constantly are trying to “fix” her hand during play, but she always reverts it back to the upside down (and seemingly painful to us but not her) position.

Crawling like this for the past few months has taken its toll, it seems, on her upper body.  We started noticing her yesterday doing face plants when she is trying to get into a crawling position.  Today, she did it many, many times.  It is usually when she is tired (which is most of her day), and it is so sad to see because she gets so upset because it probably scares her and hurts a bit.

So I set up a consultation with the only pediatric orthopedist in Vegas for 11/11.  Even though her OT was trying to avoid a hand brace (trying redirection and tape), I really believe Hannah needs to have that hand braced so she can get it back working the way it is supposed to be.  She still can use the hand to hold toys and play, but I think she has stretched out that muscle (that is not meant to be stretched out) so much that it finally has “gone too far.”

Birthday news: Today is my birthday.  I am spending the morning getting Hannah’s Cerezyme infusion, and you know what?  That is a-okay with me! Want to see my birthday wish? (And thanks to Julie, Heather, Libby and family, and Chuck for the perfect gifts so far!)

Trachiitis has struck…again.    This is the fourth time in as many months.  We had a great week of very little secretions, starting to eat baby food again, and we were just ready to start the passy muir speaking valve again after dealing with trachiitis for the previous 3 weeks.

It started a couple of nights ago when I was on my night shift with her.   She started getting really “gooky” with a greenish-tint “gook”.  I was suctioning her constantly throughout the night.   Then the throwing up mucous started up again, which usually happens when she has more secretions than normal and because she doesn’t have swallowing issues like most kids with traches, she swallows it all.  It then builds up in her stomach, and the only way to release it (because it is a lot) is to throw it up.   As hard as we try to get it out by her trach suction, she is so good at cleaning it out herself that we maybe only get about 10% of it through suction.

We missed her Cerezyme treatment on Monday (rescheduled for this Thursday) because I didn’t want to go through a 3-hour treatment session with her throwing up and being uncomfortable on me.

Today, we went to the pulmonologist and saw his nurse practitioner.  We talked about trach care, and since we do trach clean care twice a day, we don’t think the trachiitis is from that.  Then we talked about what she grew out last time — pseudomonas and methicillin-sensitive staph aureus (not to be confused with MRSA).  These are pretty strong bugs.  That’s why we were on the Cipro.

The NP also listened to her chest (she had fallen asleep by this time), and he noticed a lot of junk in her right lower lobe.  Possible aspiration pneumonia.  The possible theory is that because she has so much secretions from the trachiitis that she is starting to aspirate them into her lungs.   If that is the case, that could be a HUGE problem for us.

We talked about the risks of keeping the trach until Spring versus these constant bouts of trachiitis.  Because of the pneumonia issue and the flu/RSV season upcoming, they will not consider taking the trach out.  If she does get hit with pneumonia and has to be hospitalized, the trach will basically save us from some more serious issues.  It makes sense, but it is just such a crappy catch-22.

So the plan of action is this:

• Chest xray tomorrow morning, first thing .  They want us to wait for the films and bring them to the pulmo to take a look at them asap.
• If the chest xray does show aspiration pneumonia, then the conversation starts for fundoplication surgery, which will not only stop her from throwing up her secretions and, in turn, aspirating them into her lungs but will also relieve her reflux symptoms.
• Cipro prophylactically, starting tonight.
• Albuterol treatments every 4 to 6 hours.
• CPT (chest physical therapy) every 4 hours for 10 minutes at a time.

The hope is that the chest xray is actually clear, and she is just junky from the trachiitis.   She has had no fevers, and the only other outward symptom is fatigue (she is tired more than usual for the past few days).  But then again, she is also teething with 4 teeth breaking through, including her canines!    That has not helped her secretions either since drooling plus secretions just adds more junk in her tummy.

Hannah is almost 2-1/2 years old now.  She is still sleeping in her crib.  But she is almost to the point where she has outgrown it, and she crashes into the sides when she moves around at night (we have bumpers around it).

It is time to start researching options as to what is available for that next step, “the big girl bed.”

Because of Hannah’s hypotonia (lack of muscle strength) and her developmental age (12 months), a regular twin bed just would not work.  A mattress on the floor would not work either because if she rolled off it, she would not be able to get back on (nor would she think about getting back on it to go back to sleep).  Railings would not work because she could easily fall over the normal size railing when she goes up on her knees like she does her crib (her crib is still on the middle level).

We need something more secure for her.

This is their medium. They also have one that is double-rail high, which definitely would keep her safe!

I found these SleepSafe beds online.  They would work, but part of me thinks this is just too much overkill in terms of what we need.  But the other part thinks, “Wow, she definitely could not fall out of this bed!”     I also like the fact that the SleepSafe beds come with adjustable mattresses so we could easily lift her head at whatever angle we need to if we have to.

I just don’t know what would be the best thing to do.  Hannah probably has another good 6 months in this crib until it is just way too small for her.   Also, would our insurance or Medicaid (which we hope to get in the next 4 weeks or so) cover something like this?

The main goal is to keep Hannah safe at night.    I need to find out what other options we have.  Perhaps I will ask Dr. Carrie (Hannah’s new pediatrician) what she recommends.  There has got to be something, you know?  We can’t be the first family who has come across this situation.

Hannah giving a hug to one of her favorite people in the whole world ...her big brother.

It always amazes me how much joy people get from Hannah and, in turn, how much joy Hannah gets from certain people in her life.

There is just something about her smile that just shoots you in the heart…every…single…time. I think it because you know that if Hannah gives you a smile, a hug, or wants to crawl on you that it is YOU she wants at that moment. She does not give this pure and unconditional smile and love out to everyone. Actually, very few people get this treatment. But when you are one of the ones she gives it to…wow!!

In the past few months, a lot of people have come in and out of Hannah’s life. A whole slew of doctors and nurses at TCH and Sunrise Childrens, new therapists, new home care nurses, etc.   Because of this, Hannah does not make immediate bonds with people.

It takes an army to take care of my beautiful girl.

But when I see these bonds form with her and someone else, it just takes me aback. The look she gets when her grandpa walks into the house…OMG, you would think he was Santa Claus. She smiles so big, throws her arms up, and when he picks her up, she just has the biggest grin on her face and does not let go of him.

She has also become quite attached to our two regular home health nurses. I also know that they have become quite attached to her as well. Just today, when I handed Hannah off to her nurse, Hannah just grabbed on, smiled, and gave her nurse the biggest hug. Both her nurse and Hannah seemed like they were in bliss. Her two nurses are so good to her. Not only do they take care of her those 8 hours a day (6 days a week, 3 days each nurse), but they play with her, cuddle her to sleep, and interact with her. When Hannah accomplishes something new, I can hear them get so excited and praising her.

Hannah was blessed with an amazing gift. A gift of true and unconditional love. It is a gift that has to be earned, but when she does give it to you. Wow, it will light up your entire world because you know it is from her heart.

Hannah has been really congested for the past few days to the point where she has been throwing up at least once a day or so.  Today was three times.

But it is not normal throw up, as it is only mucousy stuff.  Basically because she either coughs out and swallows the gook she brings up (like how we cough and swallow), it seems to be backing up in her stomach to the point where she can’t control it any more.   Each time we try to suction her, barely anything comes back because she is so good at controlling it herself.

We are pretty sure it is not another trachiitis infection because everything is coming back clear and just a bit white.  Nothing yellow or green or dusky.

The Zyrtec Hannah’s pulmonologist recommended has definitely been working to control it in the evenings, and she rarely is junky at night anymore.  This is because her Zyrtec dose was 2.5 mL at nighttime.  Tomorrow, we are going to start doubling her dose – 2.5 mL in the morning and evening.  Hopefully, hopefully this will help control her secretions better during the day by drying them up a bit more.

She has also been sleeping a lot during the past few days.  I hope it is related to her feeling congested and junky.  Today, she napped from 8:30 am until 10:00 am and 1:00 pm until 4:oo pm!  She just crashed for the night just now at 9:30 pm.

I took this video the other night after Ethan and Abigail were already asleep.  Hannah was beyond exhausted and, like true Hannah fashion, she fought sleep as long as she could. She thought it was so hysterical when I kept telling her to go to sleep. She was completely giddy at that point. Because of her trach she has a silent laugh until the point where she is laughing so hard you can hear some sound sneak through!