Wednesday, September 10, 2008

Dillon Update

wfvilzJay sitting on Ronald's lap at the Ronald McDonald House
Standing by another Ronald
Dillon in the ER Sunday after they got him more stable
Jay playing in the pack-n-play in the ER - I will never come here again without it! It is the only place I can put him down without him walking right out of the room and daown the hall to find anyboday and everybody who will talk to him!
Dillon today with the new CPAP machine Poor baby. No it looks bad but he is breathing SO much better with it on.
This is where Jay sleeps for naps! In the bathroom in the pack-n-play - I know I know but it is the ONLY dark quiet place and he falls asleep in 30 seconds - literally!

This is an update my husband sent to the Church today:

Thank you all for praying. Dillon's airway is collapsing and is currently unable to breathe on his own. Dillon will be at Children's Hospital in Philadelphia until he is able to breathe on his own. We don't know how long that will be.

The testing came back and is no pneumonia, virus, or bacteria. Doctors are trying various methods to open the obstruction so he can get air to his lungs. Yesterday when they removed the temporary 4 inch supporting tube in his nasal passage, he started gasping for breathe and the collapsing airway caused alot of negative pressure, so they had to put it in again with oxygen.
Today they removed the nasal trumpet again and put him on Continuous Positive Air Pressure face mask with oxygen. They tried room air, but they need to combine it with oxygen to get him up out of dangerous O2 sat levels.

Dillon cannot be on CPAP all the time. The machines are not portable and are generally used only at night. We are trying to see if the Institutes for the Achievment of Human Potential, who work with children like Dillon, can help with this life threatening repiratory problem.

Another concern is Dillon's secretions. They put him on Glycopyrrolate but his secretions thicken and he can no longer cough them out causing his O2 sats to dip low. !ith alot of suctioning it comes out in big long strings. Since this drug is not working well for him they are trying to drop the levels and want us to consider Botox injections to his salivary glands.

The doctors are hoping that a combination of CPAP and Botox will allow Dillon to avoid the only other possibility: a trachiotomy or trachiostomy which would bring many negative complications.
He would be much more home bound. He wouldn't be able to go in a pool or in the bathtub as he could drown. He wouldn't be able to make sounds or vocalize as he does right now. He wouldn't be able to lay on his stomach and lift his head. He would be suseptible to many diseases and would require more vaccinations which we have decided against for him since they can greatly harm brain injured children. There's so many bad things. We really need to pray he won't require a trach.

Ps 42:11 Why art thou cast down, O my soul? and why art thou disquieted within me? hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God.
Hoping in God,
Josiah Kuenzi


Anne said...

We're praying for you!!! Thankfully Dillon is breathing better... thanks for the update!

Love ya!

Tia said...

Alesha pointed me to your site and I wanted to say hello.

I'm so very sorry you are having to face this. I did just want to say though - my daughter uses BiPap although thankfully only when she's asleep at the moment. However, we do have a mobility battery for it, and if she does ever need it during the day, we would be able to take it out with us - the battery we have lasts for 8 hours. It's loud and it's heavy, but we have taken her out whilst using it before now.

I hope and pray that Dillon will continue to improve and that you can wean him off it without having to go for the tracheostomy. But if for any reason that isn't possible, I just wanted to give you hope that it wouldn't mean he was permanently home-bound.


PS my daughter had that very mask and bonnet for her machine when she first came home to me!

Alesha said...

Aw...praying for you guys, Tiffany. I know it's so hard to be at the hospital indefinitely. You look tired. :-/

I know the Lord will give you strength and wisdom for the days that lie ahead.

Hey, I think that's a great idea to put the bed in the bathroom. It is a very dark and quiet place in there, isn't it? I remember one day, I went in and turned off the light to sit and rest myself(sort of like a sensory deprivation tank! LOL). Praise the Lord your room has a private bathroom!

Continuing in prayer for Dillon. THANKS for the updates!