Hannah's Oxygen concentrator
We seemed to have entered a new phase in this journey. I guess it was inevitable considering her diagnosis.
After having a 45-minute visit with our pediatrician, we both agreed that we need to have some backup assistance when she has another breath-holding spell. We can’t have the racemic epinephrine breathing treatment they gave Hannah when we got to the ER, but we can give her some powerful oxygen flow to help get her oxygen up which would likely help her calm her breathing sooner than later.
After getting the prescription for “portable oxygen”, dealing with our insurance company (we only have to pay 10%), and then finding a medical equipment provider, our equipment was delivered this evening. I was expecting something like a hand-held breathing treatment, but that is definitely not what we got.
We received the portable home oxygen concentrator to the left. This comes with a 50-foot tube and has a nasal canula attached (the nose prongs). We also got a full-sized oxygen tank (5 feet tall with stand) to be used if we run out of power and can’t use the concentrator.
"Portable" Oxygen Tank
Lastly, we received five “portable” oxygen tanks. They are almost 4 feet tall, and they come with a cart as well. Definitely what I was not expecting! I can’t see this being very “portable” for our needs, so I’m going to call the medical equipment company to see what other options there are. I was hoping for something we could fit in a large diaper bag or something like that.
We also are required to put a “no smoking, oxygen in use” sign near our front door. I guess if there is a fire, the fire department would immediately know there are oxygen tanks in our house. Thank goodness my hubby and I aren’t smokers, so we don’t have to worry about the “no smoking” requirement for being in-house.
Hannah had another episode this afternoon before the equipment got to our house. Fortunately I was able to get her calmed down before she turned blue. But during the entire episode I kept thinking, “OMG, not again.” But I took the tips from the 911 operator (like taking her out in the cold, trying to sing to her, redirect her, etc.). I don’t know if it would have gotten as far as it did again, but I definitely was wishing I had the oxygen then.
But it is here now. It is very eerie having the equipment here in the house. It is our first real “Hannah is not a healthy child” piece of equipment. I don’t know why it just hits me so hard to see it there.
It must give you all some kinda peace of mind having that equipment in the house as “cumbersome” as it may be, hopefully they give you something more “portable” soon so you can at least be able to take out with you when you have to go somewhere with Hannah. Lets hope she does not have too many of those episodes as severe again.
We feel for all of you and are always praying for you. Keep your chin up, as always you are an amazing mother!!!
That’s quite an imposing piece of equipment. It poses a pretty steep hurdle for denial. 🙁 Not even in the same ballpark, but if you have to go through this then I am going to quit being such an idiot and order B’s helmet and medicalert bracelet like I was supposed to back in September. I told myself all kinds of lies to keep from getting them, but I think the real reason was that they seem like red flags to the public that B isn’t normal. If everyone knows that B is not normal then *I* can no longer pretend he is. You’d think that with the pharmacy in my kitchen and the therapies every day of the week there’d be no way I could be in denial that my child isn’t normal–and you’d be wrong. 🙂 On second thought, I am not as strong as you. Maybe I’ll order the stuff this weekend…
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I know it all seems formidable. It’s a tangible sign of Hannah’s health, however, it will also be a big relief when/if you need to use it. You should sleep better knowing that it’s there as a silent partner in dealing with her episodes.
Sending you hugs….
I know this may be way off base, but thought I’d share just in case it could help you. Samuel use to have breath holding spells that would cause him to turn blue. We were told that breath holding spells could be due to low iron levels. Sure enough, Samuel’s iron level was low and iron supplements made the breath holding spells better. This may not be even close to the reason that Hannah is having them, but felt that I should share (just in case it could help)! You’re always in my thoughts and prayers!
Missy
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Oh Carrie. What a nightmare that must have been, taking her to the ER. I am glad she is ok and that you have what you need the next time that happens. I wish they could find a cure so that Hannah could just be a little girl with no health problems. I think the world of her, and I don’t even know her. She seems to be such a happy soul, in spite of what she has to go through. I guess it helps to have a loving family by your side. God Bless you all.
I’m sorry to hear that Hannah had to go to the ER. That sounds so scary. I can only imagine how it is to have those things in your home… looming there and I hope they do have a better portable one. But, as was already said, I’m sure there’s some peace of mind in knowing that at least it’s there if she needs it. Lots of love, thoughts and prayer to you.
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