Hot hot HOT
Aria had clinic on Tuesday and it went pretty well. Â Basically right now she has a diagnosis of chronic lung disease. Â No she isn’t a pack a day smoker although she does cough like one. Â It isn’t a permanent condition but one brought about by her extreme sickness from her liver disease.
So we aren’t battling kidney disease, liver disease or hirschsprungs disease anymore but we are battling this lung disease. Â Not really battling because she doesn’t need oxygen support during the day so we don’t have the hassle carting O2 tanks around. Â At night we have a machine that compresses the air and pumps 28% O2. Â We were hoping she could do without it but it appears she still needs it. Â For how long- who knows.
But we are going to downsize the trach and cap it and see how she manages breathing thru her nose and mouth. Â And perhaps at clinic in two weeks, if she has done ok they might schedule her to get it taken out. Â It was totally the right thing to do get it in the first place but now it is a bit of work that we could do without. Â Then if she still needs o2 at night she will have o2 nasal pongs on her face, like you see on all sick people on TV.
Other than that we are just rocking out at home. Â Our air con broken last night and we had a miserable nights sleep. Â Super hot outside and inside (80F/32C) all night. Â This was Asher this morning clutching his 2 water bottles and feeling miserable. Â I couldn’t help wondering if there are kids in Omaha without air con in their homes, made me sad and grateful.
Thankfully it was fixed by lunchtime and we spent a  morning at the mall just walking around.  It was nice.  We are taking Aria places, mainly because she doesn’t touch anything cause she is in her pram/stroller all the time.  Although if I was to see someone sneeze I would run in the other direction!!  She does like sitting in the trolley/cart at the supermarket though but we just use the sanitizer wipes before she gets in.  It is fun taking her out, she really enjoys it.
16 Responses to “Hot hot HOT”
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# 4 Aug at 3:14 pm
Yuk to the hot teamy nights, i know about them living in sydney.
Great to read you are doing very ordinary stuff like going to the malls etc. will pray for the lung disease, it will I imagine heal given time. God Bless you all. Great update.
# 4 Aug at 3:36 pm
When we lived in Massachusetts, the malls were the only place to go with the toddlers, where we could be warm in the winter and cool in the summer! So wonderful to hear how well Aria is doing – such huge leaps of progress now. Praise God.
# 4 Aug at 3:42 pm
Wow she has come so far. My baby girl has chronic lung disease and can’t be without oxygen at all, so I have to cart around the tanks everywhere we go. It will be so good to get Aria weaned off altogether. You and your husband are doing an amazing job with your kids and Aria is looking so good. Keep up the good work ♥♥♥
# 4 Aug at 4:09 pm
SO, so good to hear about “normal” stuff in your world – going to the mall and just wandering around…Asher looks so relaxed in the picture – perhaps just tuckered out from the heat I expect.
# 4 Aug at 4:15 pm
Great to hear the aircon is now fixed – makes you realise how important it is for daily life huh! I laughed hearing you with your anti-b wipes on trolleys etc! This is just how we were too, wiping everything and following the kids round with sterigel after they had touched anything in public spaces … just to let you know things have changed now and I never even remember the wipes for the trolly for Lara now – good ay!
# 4 Aug at 4:30 pm
Good to hear everything is diagnosed and plan in place. Yes the heat is unreal in Texas also. Nice that Aria is able to get out
and enjoy the stores. Probally seems slow progress to you all but it is a miracle she is doing so good. Will pray for those lungs.
# 4 Aug at 4:37 pm
We’ll be praying for those two precious little lungs, and of course the little owner of the lungs!
# 4 Aug at 8:06 pm
Praying for those lungs, that they get stronger and do what they need to do to get rid of the trach. Love hearing how much more normal you can be!!!
# 4 Aug at 8:57 pm
SO SORRY about your AC problem……just be thankful it didn’t last long OR that you are not in DALLAS!!!! 106!! It’s awful. Kids do not even want to play outside. Happy to hear everything else is truckin’ along! LOVE YOU GUYS!!!!
# 4 Aug at 8:58 pm
Hopefully the chronic lung disease will go away somehow! I hope she can get the trach out, & that she does well off of it! I have been there Anita! I can’t sleep when it’s so hot & humid! If I were Asher, I would be clinging to my water bottles too! Unfortunately, there are people in the USA that don’t have AC, & I feel bad for them. Glad you got your AC fixed! Have a great day tomorrow. God Bless!
# 4 Aug at 9:43 pm
God bless your dear lungs little Aria and thank God for all other parts being so well and blessed love you all, praise the Lord for air condition for you all. Isnt it amazing many things we take for granted here, fresh air and cool days, praise God amen!!!!
# 5 Aug at 1:44 am
Asher looks so cute clutching his cold bottles. Glad that is sorted now.
# 5 Aug at 3:00 am
So great Aria is not reliant on 02 during the day so you can get out and about. Praying that her lungs heal quickly. Blessings to you all,
Judy.
# 5 Aug at 4:37 am
praying re the lung disease.
pleased Aria enjoys going out
beats cabin fever doesnt it
# 5 Aug at 9:21 pm
aria darling, you have come through some mighty hard things for a little lady, with god helping you. now we all pray for your lungs to get well quickly, so you can get rid of that compressor.
yukkies to no air conditioner, & a hot night.
sympathies to ashie, with his water bottles, i don’t like hot nights either!!
hamish & anita, i’m so glad your family is together again, enjoy the trips out as a family, & prayers for the make a wish foundation to grant you all a family holiday away from hospitals.
# 6 Aug at 9:36 pm
Do we get to see you Sunday!?! Still praying for Aria and Asher daily in the Arms household. You are part of our daily lives even though it has been too long.