Phew!
Apologies for my slightly crazed post this morning. Â I did the night shift with Aria last night and did not cope well. Â I also nearly treated you all to a 2nd crazed post about the insanity of ‘sleeping’ in hospital for both child and parent but had calmed down by lunchtime. Â Still hatching a plan though- seriously, it’s nuts.
Anyway we have a treatment plan for Aria and we are happy and relieved. Â Both pulmonary and Infectious Diseases (ID) were consulted this arvo. Â All agree this puesdo bug is coming from her lungs into her blood. Â It makes sense, we have never cultured it in her urine or seen it in her heart or liver plumbing and unlikely to be in her belly either inside or outside the intestine. Â SO the plan is months of ABX nebulisers. Â One month tobra 8 hourly and the next month calistin rinse, repeat 😉
We wanted this last admission but they were not keen because they didn’t want to use the last remaining drug and for the bug to morph against it and become fully fully resistant.  But since then ID has done further research and the studies indicate strongly that when the inhaled version of the drug was used the bug never morphed against it and it was still available for use IV.  YAY!  This is very good news.
Ok so having to do nebulisers every 8 hours for the next 3 months is less than exciting! Â In fact it kinda sucks. Â BUT at least it is a plan and a way to hopefully get this awful bacteria out of her lungs.
Aria is still not really herself today. Â Pretty tired and dopey and not feeling great. Â She gets really upset whenever someone comes into the room and we are not directly next to her (hence the bad night sleep) Â Even if we are sitting maybe a metre away we get ‘mummy/daddy come here’ . Â Which is pretty much all she says all day. Â On paper she is looking better but in herself not so much. Â Still getting nasty headaches too.
13 Responses to “Phew!”
Leave a Reply
Support Aria
There are many ways that you can support Aria.
- Bank deposit
- Cheque by post
- Contact us directly
Subscribe to updates
Fundraising progress
Aria's support to date:
Progress meter: 75%
Links
- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
The wonderful charity that supports Aria
# 2 Dec at 7:24 pm
Have been in prayer for you all day. Wishing to come see you, but not feeling so good myself. Anyhow, praying for irradication of this nasty bug!!! Praise the Lord, our great physician, for the miracle(s) in Aria’s life! And praying for some more sleep for all of you!
Love and hugs,
Carol
# 2 Dec at 8:22 pm
Also praying for you all but especially Aria as she is fighting this bug. God is so good and he will see her thru this valley also. Hopefully rest tonight.
# 2 Dec at 8:28 pm
Sending you loads of love xxxxx
# 2 Dec at 8:36 pm
I am very happy that the doctors gave you way to treat this superbug. That is good news! So sorry that you haven’t had much sleep, & that Aria still isn’t herself. Praying you get more sleep, & that she feels much better tomorrow! God Bless!
# 2 Dec at 8:36 pm
hospital rants from others make me feel normal when we’re hospitalized… so rant on sister! praying for you guys (:
# 2 Dec at 8:56 pm
Praise You God for antibiotics and nebulizers and all the works that support Your process of healing. We rely on YOU!
# 2 Dec at 9:10 pm
In our prayers and thoughts as always. So sorry to hear you are back in hospital 🙁 But trust that God will use this hospital stay for Aria’s good. Much love.
# 2 Dec at 10:11 pm
Great that you have a plan and still left with an option should anything progress. Praying that nothing does progress and that Aria is on a road to more normality.
Guess you are hitting some of those bumpy winding roads again on your journey. Tell those bugs we want you on the freeway heading to an airport to have a trip to Disney!!! Then back on the runway so you can fly home to NZ!!!! Yes, thats what we want. Aria’s been a good little pilot doing her bit with an amazing recovery. Those bugs need kicking to the kerb!!!
We have the FPF staff party at work tonight. So most staff are heading to Highbrook Cafe as I type this reply. Hoping that next Christmas you will be joining in with us for a Kiwi Christmas.
Much aroha xxxx
# 3 Dec at 3:37 am
Praying that nebulisers work to get rid of this nasty bug once and for all so there are no more headaches for Aria. May God bless you and give you the sleep you need. Judy.
# 3 Dec at 4:24 am
Sorry to hear that the bug is in Aria’s blood but very relieved to hear that you all have a plan of action 🙂 Praying that God will destroy those bugs with all the nebbing over the next few months and praying really hard that Aria will feel herself really, really soon and that the nasty headaches disappear. God bless all of you and we’re all praying and thinking of you 🙂 xxx
# 3 Dec at 5:08 pm
Poor wee thing shes not feeling good at all is she. Stay strong, her strength will come through you. It will all work out. 🙂 xxx
# 4 Dec at 6:55 am
love and prayers guys, Psalm 103 praise the Lord with me, in all circumstances, thanks for his answers to our praises and prayers amen.
# 21 Dec at 2:11 pm
love and prayers guys, Psalm 103 praise the Lord with me, in all circumstances, thanks for his answers to our praises and prayers amen.