Find out how a rare breathing disorder has changed the life of my young son and my family.

Friday, September 29, 2006


Chicago Trip Update

(This is the view from the efficiency apartment building
that is connected to Rush Hospital)


(Here is a shot of Josh sitting on the plane. We want to thank Southwest Airlines for providing the round trip tickets for us to see Dr. Weese-Mayer)


(Josh was monitored night and day in the sleep lab seen below)


(They placed many electrodes on Joshua's face and head while he slept and watched him via camera while he was in the sleep lab at night)


Hello all,

Joshua and I just got back from Chicago late this afternoon. We saw Doctor Debra Weese-Mayer and her group - who evaluated Joshua both in a Pediatric Intensive Care Unit and a Sleep lab setting and have a lengthy update to share with you. But first, I want to thank you all for thinking of us and praying for us during this trip. We sure needed them now - maybe more than ever!


Now, on to the update:


The team of doctors did confirm the diagnosis of Late-Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction.

They decided Josh requires (and probably has for some time) 24 hour mechanical ventilation. This means Joshua will have to be on his ventilator at all times.

They also adjusted his ventilator settings and changed his trach to a Bivona (adult sized) 5.0 tracheostomy tube with a tight to shaft (TTS) cuff. The cuff is like a balloon at the end of the tube to prevent air from coming back up the trachea and out the mouth and nose. It will only be used (or inflated) when he sleeps.

These findings mean we need to get nursing care in our home for Joshua. The doctor suggested we needed as close to 24 hour nursing care as possible. Joshua will also need to be tested thoroughly to see if he'll need growth hormones - and as soon as possible - so that he will develop as he should through puberty.

Speaking of development, Joshua had a very lengthy development study performed on him. The results indicate he suffered somewhere between 4-7 years of age and much of his development slowed or stopped at about that age. It is estimated his skills and mindset are that of about a 6 year old. The doctors are hopeful that with the ventilation needs being met and with a great deal of support at school and at home, Joshua should be able to make up much of the ground he has lost over these last few years. But it will take some time.

Joshua will also be on a strict diet. One of the functions of his hypothalamus is to maintain body weight, by sending messages when you are hungry or full. Because
that is not working properly (and probably because he did not grow taller during one growth spurt) Joshua has developed a very large belly - which he needs to slim down.
***so if you want to give him a snack, etc. please keep in mind it needs to be low-fat and low-sugar***

We will need to (ASAP) get Joshua's hearing aids checked and make sure they work properly and are fitting him as they should. The doctor wants to make sure we are all doing everything we can to make sure Josh doesn't miss a thing in his schooling or our speech to optimize his future development.

And finally, the pacer issue --- This was the greatest dissappointment of all for us.
We had hoped from the beginning of Joshua's getting a tracheostomy tube, that it was to be a temporary fix. Which it will NOT. Joshua could possibly qualify for pacers sometime in the future - BUT - we are told that the pacers will not mean he can EVER get rid of his trach tube and ventilator. That is because the pacers (which by the way are surgically implanted with 4 incisions into the trunk of the body) will help the diaphragm contract (if there is ample space to do so in the body) but will not create enough ventilation when sleeping or when sick. Because there are times when the pacers will not ventilate enough, Joshua would still need the ventilator - and thus, the trach (so he could hook up to it). There *is* a possibility that when he gets older, he might only require a face-mask type ventilation method and THEN he MIGHT be able to get rid of the trach.

This loss of immediate hope that we all held to for so long makes us very sad.

Struggling with wires and batteries and a heavy ventilator and vent stand are proving
to be other obstacles we are trying to work through right now.

Of course, I will also need to get with our insurance caseworker to try and work out
resources for the nursing care and obtaining a second ventilator and stand so we
can carry out all the orders the doctor gave us for Joshua.

Please keep praying for us - this has been a very hard week and it does not look to
be something that will get any easier very soon. We still, though, pray for a miracle healing for Joshua. An uncle and aunt of mine (Ronny & Molly) who happened to travel through Chicago today before we flew out) came by our room and laid hands on Josh and prayed for healing for him.

God bless you all and we look forward to talking to you all again very soon!

Vanessa

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