The Sleep Study

I have not really been able to share the results of our sleep study with you all because they are not conclusive yet. In other words, our doctors are trying to decide what to do with the results of the study in terms of removing the trach or not. One Doctor is ready to give it a try, and the other is very hesitant. So the two doctors will be getting together with Maya's Primary Doctor at Children's to come up with a plan everyone on Maya's team is comfortable with.

As far as the sleep study, Maya was only capped (meaning her trach was plugged) for about 40 minutes before her Oxygen saturations dropped. The technician removed the cap and she saturated great for the remainder of the study. We thought this meant that she had failed, but we never understood why they did not try to give her any Oxygen before removing the cap...we still have no clear answer on that!

Her Pulmonologist feels that until she can tolerate the cap all night, Maya needs her trach in. Her ENT thinks that there is a chance she will do fine without the trach even if she cannot tolerate a capped sleep study, and this Doctor would like to decanulate (take the trach out) and monitor at the hospital overnight ...with the idea that we could always stick the trach back in. Both Doctors are great and we respect them both. After hearing their differing opinions, I explained that the two Doctors really should get on the same page...which obviously they agreed to do.

From my understanding after two phone calls from the Pulmonologist herself (let's just say in the almost 4 years of working with doctors at Childrens, all of which I have been very pleased with...this is ONLY the 2nd time a doctor has EVER called me at home to discuss information herself--ussually their nurse or resident calls...so I am very impressed with this Doctor's communication style:-) )...it sounds like Maya's ENT, Pulmonologist, and Craniofacial Doctor will be meeting to discuss where we go from here...but it may take some time to coordinate that meeting (which I also have to say, that it is NEARLY impossible for 3 Doctors at Children's to find time to sit down and chat at an agreed upon time---you might think that this is odd, but is it VERY VERY HARD for them to EVER communicate face to face because their schedules are rediculously crazy and different).

In the meantime, we are to get Maya on a nasal canula (which she DID tolerate during her sleep study--eventhough they did not give her oxygen through it), AND also get Maya an EEG. Apparently, her EEG monitors during the sleep study picked up some small epileptic responses, which need to be further evaluated through Neurology. HEy, why not?? I have never taken Maya to a Neurologist before...might as well add them to her list (Craniofacial, ENT, Pulmonary, Cardiology, Dermotology, Opthomology, Physical Therapy, Occupational Therapy, Speech Therapy, Audiology, I am sure I am forgetting something:-) ).

So, the Kelly house is in waiting to discover what Maya's plan is, and in the meantime I just entered the 3rd trimester of my pregnancy so the reality of baby girl #3 is setting in. I am still feeling great, but I am sure in another month I will be feeling HUGE. Continue to pray for the health of this baby, so far things look great, but you never know till the baby comes into the world and has to breath and eat and potty all on its own. Also, we would love for this baby to make until June. We have no reason to think it would come earlier, but my other girls were both 3 weeks early. Our C-section date is set for June 17th, Maya's last day of school :-)

We will do our best to keep you updated on Maya's trach dilemas. We love our Maya whether she has her trach or not, but are very anxious to see it removed.

Thanks for all your thoughts and prayers
The Kelly Clan

Easter

We had a wonderful Easter, and I hope you all did too. The girls were so adorable, I thought I would share some cute pictures!

Easter 2008

The Zipper continued

SO, there is more to our zipper story. Just prior to Maya's sleep study she started having some horrible coughing spells that would last, NO JOKE, for over an hour at a time. This was non stop coughing with frank blood coming out of her trach too! She did this once on a Thursday, again on the Mon, Tues, and Wed proceding her sleep study. We changed her trach on the Wed. of her sleep study and things got better...I figured it was either her trach or her new inhaled steriod that she is on becuase she was fine for about 30 hours, then Friday morning (last week) she coughed so much that I called the Pulmonologist to see if this could be her new medication. They stated that it most likely was NOT, and to talk with the ENT on our visit Tuesday to see if something was in her airway. Later, Friday night after a long nap (which Maya never does) due to her extreme coughing fits, I walked over to play with Maya and noticed something very peculiar on her t-shirt. IT WAS THE LITTLE PLASTIC PIECE OF HER ZIPPER THAT WE THOUGHT SHE HAD SWALLOWED A FEW WEEKS AGO! All this time it was hanging out in her airway, and thank goodness it never caused an infection or pnuemonia. I guess she just somehow figured out how to clear it out of her airway. AND, eversince she has not had a single coughing fit, not even a little one. Well, Maya you sure know how to keep life interesting!