Parker's 911 night

p's mom · #1 04-28-2002, 09:59 PM

Well....last night was very eventful. Parker got up around 3

0 am rolling around and I got up and let the dog out and then went and checked on him. He was sitting up in his bed and looked at me and said Momma...BaBa. He wanted his bottle and I could hear him very clearly speaking and well I knew the trach was out.

To make a long story short....I couldn't, my husband couldn't get his trach back in. He is in a 3.0 shiley and well there's nothing other then a cathetor to use as a guide to reinsert the trach. WE tried everything. Then called 911. They came and were a complete waste of time. They looked at me like he had an extra arm instead of just a trach. It was crazy. He was sating 99 to 100 and his trach had been out for over an hour!!!!! we called his specialists. We all agreed that he was stable enough to drive the 45 min. trip to our hospital where he is seen.

We went and had him on the pulse ox the whole travel and he sated 98 to 100%. WOW!!! HE did great and supposidly they said no movement in the cords just 4 days earlier. The ENT on call was able to get the trach back in and said he looked great and that he didn't want to step on any toes of the doc's that looked at him on tuesday and that I should call them Monday and schedule a consult or something.

It was a very informative and scary event. However I gained strentgh from this and enough information that I feel I should make a case for him and his decannulation. He's done well today a little fussy and I think I would be to after an event like that .

He had his trach out for 3 hours that I saw and the ENT said it had to be out for a very long time to have closed up like that. Sooooo....I don't know how long he actually had it out. I can't even believe what happened. It was so scary. And to top it off NO ONE was able to help. I realized how much we trach parents are so often on our own. We have to learn so much to care for our kids. We're always on call and forever fighting for there best interest. So off to war I guess for the decannulation process for Parker.

Just want you all to know I'm thinking of each and every one of you today (parents of trached kids) and praying that We always have the calmness and knowledge we need to care for our children everyday. Pat your selves on the back for a job well done and remember your not alone.

Cory
P's MOM

#2 04-29-2002, 05:17 AM

You got scared certainly, but I think that despite that it was
a good thing that he had his trach out as you could see how well he could breath without the trach. IsnÂ´t that wonderful?
If his sats were 98- 100% I canÂ´t imagine a reason for him still having a trach! Good luck!

Andrea -mom to SofÃ*a

Michael's mom · #3 04-29-2002, 07:16 AM

WOW!!! That is such wonderful news!! You know, I know it was scary, and we know that the EMTs have no clue, and some of our local hospitals (ours&#33

have no clue what to do with a trach, but in a way, what a blessing!!! And what does the cord movement have to do with decannulation anyway? Do we physically need vocal cords to breath?? Well, 3 hours with no trach AND satting high is so AWESOME!!!! I think it's a little miracle for you guys and for all of us waiting for our time to come. It gives us all hope!! You go fight that battle, we're all right behind you! Love, Sue

p's mom · #4 05-01-2002, 07:25 AM

Thanks everyone for writting me back. it helps so much to have someone to talk with. Especially someone who understands what I'm going through. thanks again all.

Best wishes to everyone.

cory
P's MOM

christyw · #5 05-21-2002, 02:26 AM

That is an incredible story. I'm with you on the "medical professionals" not being equipped to help. We are three hours from the hospital that takes care of Gaithy, and I know that around our area, I might as well take care of it myself because they will be a waste of time. My husband is EMT certified and they don't learn much about stuff like that! Chest pains are the main game, heart problems, need for oxygen, c-spine, car accidents...but most of them will tell you, "you get nervous when there's a kid in the truck, and you drive just a little bit faster!" It is 100% essential that we parents have our md when it comes to this stuff!