barely.
Up at Primary’s they had Parker on an oxygen mixer with about 70% oxygen.
At home he’s back to the oxygen concentrator and at about 2:00 a.m. he was up to NINE LITERS.
Which, shall we say, is kinda terrifying.
The thought of taking Parker back up to PCMC was running around in Reed’s brain.
We’ve slowly been able to wean Parker down to 6 liters on his vent. Which is still really high, but at least heading in the right direction.
His totally vent dependent right now. The trach mask just can’t meet our Brave Hero’s oxygen requirements.
He looks sooo much better though. Â Even covered in snot, he’s a total hunk.
It is so very good to have him home.
PS: I need your help. We have an excellent Masimo Radical Pulse Ox Machine. It is ours on loan. However our home health care company won’t provide the sensors this machine needs. I need to find some. I’ll be paying out of pocket for these, (OUCH!) so the cheaper the price the better.
Masimo Radical Pulse Oximeter
LNCS Inf/Inf-3 Sensors
So glad to hear you are going in the right direction, if only barely!!
Is he alert at all?
Oh, he is very alert, smiley, wanting to interact. When he’s not sleeping that is.
Oh, our little ones. They’re so brave. They break my heart.
When my son was little, he also had pneumonia and RSV. Part of his syndrome is a heart condition, and everything that they did to help him seemed to exacerbate that condition. It is so good when they finally come home!
Tammy–I will have to check and see what kind we have at home. I know we have some extras…I accidentally ordered a new box when I already had a whole box at home. I know we have a Massimo as well. I think we have the same sensors.
Where did you order yours from?
I ordered them from our DME company. Our insurance (which overall sucks) pays for 3 a month. We have a very high deductable plan so the first of the year I had the DME company order an entire box. The entire cost went to our deductable and the whole box was $720–I think there are 24 in it. Last year we made the whole box stretch for a year.
I actually have a permantant probe as well that we do not use since we have the others. I have made the disposable ones last a month by being very careful and using tape to put them on. They actually have special tapes they sell as well, but I found that regular white medical tape worked better.
Christine, we make ours last forever too…at least a few months per disposable probe. And we have the special tapes to make them last longer. But when your kid is ripping them off regardless of how much tape, coban, etc., you have on them……they still don’t last as long as I wish they would.
Tammy
those look like same ones we use, if you email me where to send them I could send you about 10. I may even be organized enough to get them out to you tomorrow—I know it will not be today because I am working 13 hours to make up for an emergency trip to the doctor yesterday.
Twitter: kadiera
says:
Check tracheostomy.com’s forum – there’s a board there for giving away supplies. Also look into a permanent probe – we’ve had these last *months* without issue.
9 liters is scary at home, but still less than the 70% at the hospital. It’s 4% per liter, plus the 21% in the air already…that means 9 liters is 57%
They have permanent probes? Really? I don’t even know where to go to order this stuff. Been searching the internet this morning.
Twitter: kadiera
says:
Yeah – I should have looked up the number last night, but here’s a link to Masimo’s page with a photo: http://www.masimo.com/sensors/LNCS-reusable.htm
We have the one on the top right – can go on foot, hand, or anywhere else you can tape it that it can see through to work…our s came with a posey strap to hold it on, but the poseys are apparently hard to get, so we’ve used foam sticky type ones, coban, and medical tape.
Why why do they send our kids home before they are back to baseline? It makes me crazy. I can’t remember what the RT’s said exactly, but I think 9 liters is much more than 58%. Because Jax was on 85% when we went to PICU and that was 10 liters when they put him on the vent. Anyway, I have a permanent probe that I don’t use, I still like the disposable ones. So if you email me a picture of what your connecter looks like, I’ll see if it matches. laceyrugg@hotmail.com
Lacey, he went back up to needing 10 Liters on the vent when he fell asleep.
I’m seriously barely holding on by my fingernails over here.
Let me email you a pic of the sensor. Thanks!