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suzannekearney
01-28-2010, 10:48 PM
Our baby is coming home from the hospital next week with a fresh trach and no pulse oximeter. Any advice from some experienced parents on how to handle our situation?

bryantem
01-28-2010, 10:53 PM
Why wont they order a pulseox? Our NICU doesn't order them either, but I think they are relatively new to trachs. I had to get our pulmonologist to order one. We were sent home with an apnea monitor.

lynn
01-28-2010, 11:00 PM
I would ask pulmo to write a script to the dME for one.. it is a necessary item

Trix
01-28-2010, 11:20 PM
We refused to leave the hospital until they gave us one. I would demand it. They now supply all trachey patients with one for home use.

They have no idea what it is like to live at home 24/7 with a trachey baby - especially at night.

It is important to have one incase their is a problem plus it was our way of knowing when Isabelle was awake -she would wiggle and it would alarm from a bad reading.

Tracey

Ann
01-28-2010, 11:37 PM
We refused to leave the hospital until they gave us one. I would demand it.


I would take this same approach. A child with an artificial airway needs a pulse-ox and there is no justification for not giving you one. If they refuse, just throw out the word LIABILITY a few times and it might change their minds.

Good luck.

Andiesurprise
01-29-2010, 12:19 AM
I wouldn't take Andie home without one. At first they were not going to give us one. I told them they could pay to keep her there I refused to take her. (I'm not sure I would have went through with that at the time after being there for nearly two years) But it was enough for them to give me one. I absolutely would not have her at home now without one though. Talk to anyone who will listen to you and advocate to all the people who could possible help, all departments that could possibly help you get what you need.

jamie
01-29-2010, 06:01 AM
i really hope they give this to you my son was snt home from the hospital without and it was really hard to get one later. only reason they gve him one here was because he has central apnea unrelated to the trach

Big Al
01-29-2010, 07:02 AM
i really hope they give this to you my son was snt home from the hospital without and it was really hard to get one later. only reason they gve him one here was because he has central apnea unrelated to the trach

my advise is to NOT leave the hospital until you get what you think you need. your barganing position is not near as good once your home. The Hospital wants you out and will often move mountans to make it happen. Just stand your ground.

cari
01-29-2010, 07:15 AM
I would have to say the same. If you are in Canada there is an oximeter pool and you shouldn't leave without one, the RT's actually check it over for you before you take it home. We also use a visual and an auditory monitor at night along with the pulse oximeter because we don't have night nursing. Good luck and stick to what you thinj is best for your little one!

suzanne2545
01-29-2010, 07:34 AM
Let's put it this way. Parker was born in Toronto. Sick Kids hospital will NOT discharge a trached child without a pulseox. But it is one thing that the healthcare system will not cover. They told us point blank we needed to find a way to buy one and wanted to know what our plan was. It was THAT important to them.

No way, I would go home without one.

hcs_mom
01-29-2010, 07:52 AM
Just to reiterate...REFUSE DISCHARGE UNTIL YOU HAVE A PULSE OX AT HOME WAITING FOR YOUR CHILD TO ARRIVE HOME.

As Ann said, throw out liability a few times. Also, find out where the issue is coming from. Is the discharging physician not ordering it? Then have a chat with him/her. Is your insurance balking? Then get some letters of necessity from the docs involved in your child's care. Are you coming home with oxygen?

Jennie

suzannekearney
01-29-2010, 11:07 AM
It's the insurance game (not covered) - how do I find one on my own?

hcs_mom
01-29-2010, 12:12 PM
Get the denial letter or find out their language behind the denial. You can appeal it. I can help you. I've appealed and won.

In my estimation...it's a pretty easy equation: your child-pulse ox=more days inpatient until it is approved and a higher cost of care.

Is there a social worker in the unit that can help you?

Wooders80
01-29-2010, 12:18 PM
Totally agree with what everyone else is saying, no way should you leave hospital without a pulse ox. It's just not safe, and don't accept the apnea monitor alternative if offered, it really isn't as good an option. Hoping that the threat of occupying a hospital bed for longer than necessary will get you your pulse ox. Good luck!

saywhatyouwill
01-29-2010, 02:24 PM
well, i will chip in. i've posted loads of times about the fact we never had a sats monitor. our hospital apparently just doesn't consider them necessary unless there are incidents of problems with oxygen levels. the don't even really like you to use an apnoea monitor beyond 12 months of age. we chose to continue to use the apnoea until emily was over 2.5 years. true, it doesn't tell you if she is getting enough oxygen, and will only alarm if she actually stops breathing, but we were pretty tuned into the rhythm of it, so any difficulties with her breathing, and we would notice.

skye liela's mummy
01-29-2010, 03:17 PM
i havent got one for skye or a neb machine or apnoea moniter,none of these things have ever been mentioned or offerd !
so i thought that skye wasnt entitled to them :confused:

suzannekearney
01-29-2010, 11:35 PM
Thanks everyone for the advice. I know now not to let Timothy come home without one and that's what I told the hospital. Suddenly our case manager is working on "seeing what she can do..."

TommysMommy
01-30-2010, 01:40 AM
We didn't come home with a pulse ox because Tommy was a cardiac baby and the hospital wanted us to learn to recognize him and his color for his sats and not depend on a machine. He had a apnea monitor for at night.

It wouldn't have mattered anyway, because his sats were all over the place. Once he became oxygen dependant at 9 months old, they finally gave us one for spot checking.

Alex's mom
01-30-2010, 09:35 AM
Our pulse ox has saved my daughters life on several occasions by alerting us that her trach had become dislodged.

Wishing you lots of luck on appealing this.

hannahysabelle
01-30-2010, 10:15 AM
pulse oximeter is a must for us too. i can't imagine how hannah will be without one. i really hope they'll listen to your appeal.

friends chipped in so we can buy our own pulse oximeter for hannah(since nothing is covered in our case). it is a 2nd-hand one that we bought online from a medical company selling used medical equipments (based in US).

but i hope you won't need to buy for your own. good luck!

suzanne2545
01-30-2010, 05:39 PM
We didn't come home with a pulse ox because Tommy was a cardiac baby and the hospital wanted us to learn to recognize him and his color for his sats and not depend on a machine. He had a apnea monitor for at night.

It wouldn't have mattered anyway, because his sats were all over the place. Once he became oxygen dependant at 9 months old, they finally gave us one for spot checking.

Rene,
I wonder how common this is with heart babies. I know Parker could be sitting in the low 70s for half an hour and you would not be able to tell at all from his color. In fact, the first time he was admitted after his first stay we were in the ER and the doctors and I were commenting on how he was seemingly pink but his sats were like 72.

Is this kid specific?

Suzanne

Andrew's Mommy
01-31-2010, 01:08 AM
Iv'e been trying to get one for my son for 18months now. You can try through CCS the best way is to get a sleep study right away i've found this out after 18months. My little brother happens to have a pulse ox so im borrowing his sinces he's off O2 and does fine unless sick. But when i don't have it I sleep on a mattress next to him and tape his o2 on. A little extreem i guess but that boy moves and throws stuff off in his sleep. I even caught him doing PT exercises in his sleep. Just find a doctor who can help you fight for one.

saywhatyouwill
01-31-2010, 01:10 PM
Rene,
I wonder how common this is with heart babies. I know Parker could be sitting in the low 70s for half an hour and you would not be able to tell at all from his color. In fact, the first time he was admitted after his first stay we were in the ER and the doctors and I were commenting on how he was seemingly pink but his sats were like 72.

Is this kid specific?

Suzanne


we were the same. emily's sats were awful, but she looked alright.

lynn
01-31-2010, 01:34 PM
Rene,
I wonder how common this is with heart babies. I know Parker could be sitting in the low 70s for half an hour and you would not be able to tell at all from his color. In fact, the first time he was admitted after his first stay we were in the ER and the doctors and I were commenting on how he was seemingly pink but his sats were like 72.

Is this kid specific?

Suzanne
We are completely opposite here: and no heart issues either.... I know when Joseph is having a hard time by looks... He mottles up at around 90 and turns grey at about 88.. it is not a guessing game for anyone; when we took him into the ER I even had strangers asking if he was alright because he looked so bad:o Sats were at 87 when they hooked him up to their monitors (one benefit~ we get sent right into the back and get looked at ASAP)

suzanne2545
01-31-2010, 03:47 PM
Wow. So interesting how different kids can be!

TanyaLea
02-01-2010, 02:57 PM
Cody wasn't discharged with one, but I quickly realized that is was a necessity!! We bought one off ebay and still use it when he is sick sometimes! (even though he got rid of his trach) :)

Baby1107
02-01-2010, 10:38 PM
Nothing against CA hospitals...but they seem very lax about certain things like machines, trach changes, HMEs etc. Austin was born & trached in TX so we have had a Pulse Ox since day 1 coming home with a trach. (Two years ago to the day!!) Although the difference here might be that he is on O2 at night and perhaps that makes the difference.

Who do you use for DME? *Hopefully* not A***a! CCS purchased Austin's Pulse Ox for us. Let me know if you have any questions I would be glad to help you navigate the waters here in SoCal.:D

MRSJOH
02-02-2010, 07:16 PM
Jasper is a heart baby and came home with one. I can't imagine without it, it is a nice backup. We know how he needs to look anyway, and really we look at him first, monitor second, but at night, when we are sleeping, having that additional security is priceless

TommysMommy
02-03-2010, 04:45 PM
Rene,
I wonder how common this is with heart babies. I know Parker could be sitting in the low 70s for half an hour and you would not be able to tell at all from his color. In fact, the first time he was admitted after his first stay we were in the ER and the doctors and I were commenting on how he was seemingly pink but his sats were like 72.

Is this kid specific?

Suzanne

When Tommy got his PMV for the first time, his sats were in the low 70's. This was "good" for him at the time because his heart was unrepaired. His ST came back later and told me when she presented the next day, she said "18 month old trach patient, used PMV for first time, sats were 73% when placed...." and the entire room gasped. She told them "Relax, it's Tommy". He was able to tolerate such low sats and function and stay active. I cannot imagine what his out of this world energy level would have been with 100% sats!!

cherienz
02-06-2010, 03:38 AM
Fight for one please. We went home without one initially (non-trached, but o2 dependent at the time) andwith the proviso that the homecare nurse do spot checks. We ended up renting one (at our cost) to prove our point, before having to go back in to hospital in an ambulance twice. I have learnt a lot since the first few months and NO way you should go home without one if your kid has o2 or trache. Our system in NZ is very different, but you have to say NO, we can NOT go home without it. Ask if they would let your child sleep without it in the hospital?
Regards Cherie