Saturday, January 28, 2012


Today has been an emotional day. I don't know if it because I am fighting a head cold, if it is because of pregnancy hormones or what. But sometimes I really hate days like today. Sometimes I hate being so "strong" and everyone thinking that we can handle everything so fine without much help from others.

Anyways, I was having a discussion with someone about Gracie and how her new diagnose of asthma may keep her from finally being able to get rid of the oxygen that has been a constant in her life. Before this flare up she was only on 1/4 of a liter both day and night, now we have had to increase it to 3/4 of a liter and her sats aren't even as high as they first were after the fontan. I had mentioned to this person that I think because of the asthma she will have to remain on oxygen day and night. The response I got was depressing in a way. "Well, that isn't that bad. Yes it would be nice to have her off for even a couple of hours but it isn't that bad to have to stay on oxygen."

Though this statement is true, it still upset me. Maybe I was looking for more sympathy or more understanding, who knows. But as I mopped the kitchen floor this afternoon, this conversation just kept playing over and over in my mind.

Yes I am grateful for Gracie's oxygen. It is a love hate relationship. I am grateful for it because it helps her heart and her lungs. I am grateful for it because I know that it has helped prolong her life. But I hate the inconvenience it is, for everyone, but mostly Gracie.

I hate how we can't go to the playground because she will constantly get tangled up or get whacked in the head by a tank trying to follow her around and maneuver her and the oxygen. I hate that we get stare from others like she is too sick to be _________. I hate that the poor child trips over the oxygen daily and falls to her feet crying. I hate that she is constantly tethered and can't play like her bothers and sisters. I hate that she doesn't know what her face feels like without the oxygen and I hate that she feels so unsafe when it is out of her nose. And I can go on about how restricting and bothersome the oxygen is...but in the end, I feel guilty because it is helping my girl be here.

I hope that I am wrong. I hope that maybe just maybe she will be able to experience even just a couple hours a day off of oxygen. What a feeling to feel free. To have nothing holding her back from being a kid!


Brad and Hailey said...

Oh Deanna I am sorry! I thought you were saying this was an asthma flare up ... has she had any asthma before? Why do you think this would prevent her from coming off the oxygen? Isn't this illness related? Do you think she has developed asthma or that this is only right now? Wouldn't she still be able to work and getting off of it and maybe only need it if another flare up came up? That's how Angela is. I'm sorry today has been so rough! Call me ANYTIME when you need to talk!

Allison said...

Pregnancy emotions or not, it is heartbreaking to have such high hopes that Gracie would finally be able to be free from her O's and then feel like that hope is slipping back into the unknown with a new asthma diagnosis. I hope along with you that she can lose the oxygen for at least a little while each day.

How is the air quality where you are? I was shocked... we were with Grant (who has never dealt with asthma or respiratory distress)in SLC area for several weekends in December and January and I was shocked. His sats were 3-4 points lower there and he seemed to have a more difficult time breathing clearly and easily, especially when we were outside. I blamed the inversion and sure enough, we got back to our clean Idaho air and he was back to normal. Maybe things will improve for Gracie when the seasons start to change and the air clears up a little? Crossing our fingers for you guys!


Petersen Palace said...

It's so natural to be so bummed! I am so sorry! My neighbor is 75 and is on oxygen and has these tiny little tanks smaller than a c size. I wonder if you were able to get the smallest size tank, you could put it in a back pack for her and let her carry it around. You may already do that, (I joined the heart world a year ago so I am still new-ish to everyone's stories). Maybe that way she could just hook her cannula up to it and not trip???? Just a thought. I'm sorry you now have to deal with asthma. You are amazing to be pregnant. Not gonna lie, I'm a little scared for my next baby. You are amazing even when you don't feel like it. You have so many people cheering for you. Even the one's you don't know. Like me! :) Listen to some Paul Cardall today. That always makes my sunday's a little better. :) Sending love.

Megan said...

I don't know much about oxygen or asthma or even understanding how limiting that can be for you and for her. I know that its important to think through these thoughts and emotions and be aware of them. It helps you process and grieving is important even though you also get to have the joy of having Gracie with you.
While you are a strong woman, don't forget that sometimes its important to ask for help too. I know that I have said "no, thank you, I'm fine" a lot. it's possible that by syaing that often, it can deter people from asking to help. But that doesn't mean they wouldn't come to your aid if asked. Thanks for sharing this recent heartache. I pray that she will be able to overcome this challenge as well. She truly is a warrior.

Emily@Little Forever Family said...

That is super obnoxious. We love Gracie so much. She honestly is my FAVORITE Gourley grand-baby (shhh, don't tell anyone else) and I do not think you are selfish in the least bit. I wish that Ryker had lived to share the woes of being an HLHS baby with Gracie. I know he is needed where he is, and he is the best little guardian angel there ever was, but it would have been nice to have a cousin that understood exactly what each other was going through. I think it is so hard to be a mom to a heart baby, especially to an HLHS kid (or other severe heart defects.) I was so excited to have Gracie come off of her oxygen, but I really think a lot of asthma in this area has been caused by the inversion. So maybe with warmer weather things will be better. Maybe when we move to Payson you can come down and we can try her down there (the air is clear and there is no inversion actually.) And I HATE the comments that are like, "well, you guys are strong, so I know you are fine." Little do they know, I am not okay all the time.s