Monday
Today is Memorial Day in the US, kinda like ANZAC day.
Another day of progress for Aria. Â All the pressers have been turned off and she is maintaining her own blood pressure just fine. Â Her chest xrays look a bit improved too. She is peeing a heap, around 100mls an hour! Â Great stuff. Â Her vent settings were up a little bit this morning and they changed them around late morning and she did well. Â Hopefully we can be more aggressive and start weaning tomorrow but we will see.
They have her very sedated. Â We don’t really see any signs of life from her, she is very asleep. Â She coughed today, as much as you can with a tube down your throat. Â But no other movement from her. Â That’s fine she needs to rest and recover but I miss her.
The bug that was cultured in her lungs was cultured in her blood too.  But she has blood sepsis too, so again it is amazing she is progress like she is.  They are treating it with an oral ABX because the IV version isn’t made anymore, bummer.  IV would be better but oral will do.  She seems to be absorbing well so it shouldn’t be a problem.  She had a little temp of 37.8 but hopefully nothing will come of that.
On Friday I felt physically sick, couldn’t eat and when I did I felt ill. Â On Saturday I felt nervous and optimistic. Â On Sunday I felt relieved. Today I just feel sad. Â Sad that Nana is here and Aria is missing out. Â With Aria being so sedated we are home in the evenings. Â She gets excellent care on the PICU so we feel like it is the right thing to do to take a break. Â On Saturday we enjoyed the first home cooked meal as a family for almost two months. Â Except we weren’t a family, someone was missing and it felt bad. Â Felt bad to be ‘enjoying’ home life while our daughter was lying in the PICU and we long to be with her. Â Sigh, there is never a easy way.
15 Responses to “Monday”
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# 30 May at 5:00 pm
You all are doing everything you can do so do not feel guilty.While Aria has excellent care in ICU it can be a time of refreshing for you all. Aria will need you when she wakes up and alert. She is not alone as I know you left Jesus by her side. She will feel his presence.Get some rest and enjoy Nana while she is here. Praying for all and thanking God for this good news on her progress.
# 30 May at 5:30 pm
“Lord, again we lift this precious family to you. We dont know what to do but our eyes are on you. Fill them with your peace and grace, wisdom and understanding and comfort them with your love. Thankyou that Nana is there at this time. Thank you for all those that wrap their arms around this family physically when so many of us would love to be able to do that not just in heart but in body as well. Lord you love this little family – do what is best to Your glory. We trust you”
# 30 May at 7:18 pm
I never felt complete without us all together either. She is just a bloody miracle though isn’t she! Look at how much she keeps overcoming and look at yourselves, even though you are mentally and physically and spiritually exhausted you keep going. Yes, you choose to keep going and you are all my heroes! Keep strong and eat chocolate! Sending love to you all.
# 30 May at 7:35 pm
Thanks for update enjoy having Nana and know that Aria is in the best place with the best of care. Love to all.
# 30 May at 8:19 pm
No easy way but you must take care of the carers. That’s a well known thing in all illnesses, so cut out the guilt feelings and enjoy proper meals with Nana and know that Aria is in the best place at present and so are you all! Don’t mean to sound harsh but you are necessary to your daughter so you must take care of yourself and it’s not wrong to spend the evenings at home knowing your daughter is well cared for. Love you.
# 30 May at 8:33 pm
Aria is a very special litle person, wise beyond her years. I feel sure she would like you all to be happy at home with Nana.In fact, if she were awake and thinking clearly, she would feel grieved that you aren’t happy just because she is not there. You can trust that Jesus hasn’t left her and never will. She doesn’t need your physical presence right now, so relax and recover strength. …and don’t feel guilty about it!!
# 30 May at 8:34 pm
I keep praying for her, & your entire family! Aria may be asleep, but she knows you’re there! It is good that you were able to take a break for a little bit, to re-group. God knows you’re hurting. Just keep looking to Him! *Hugs*. God Bless!
# 30 May at 8:57 pm
that is so so exciting, it’s so great to hear she’s doing well.. and i’ll pass this on to the team that is still praying for her this week…
I know you guys love your family and love all being together but i agree with taking care of yourself while aria is being excellentally looked after in the PICU… glad you are enjoying it at home and some taking time out for you guys and for Asher
# 30 May at 10:55 pm
Thinking about you ALL & glad to hear Christine arrived safely. Hope you all experience SOME quality time together without sadness .Lotzaluv M x
# 30 May at 11:50 pm
Isn’t your daughter just amazing though! Isn’t your family just amazing too! We wonder how on earth you cope but then we know who is in control and who never leaves your side and is always holding onto Aria and the family with his gentle and strong arms! Thank you so much for taking the time to tell us all the latest even though you must feel close to exhaustion. Your emails are precious for us. God bless you as ever and give you the rest you need in amongst all that is happening each day and night. Let Nana spoil you rotten-that’s what we nanas are for! x x xJeannie
# 31 May at 2:26 am
Modern medicine is simply incredible, hope you going to become a nurse ater all this experience you are having with your little one. Once again go well and take really good care of yourselves….
# 31 May at 2:36 am
Go Aria! She is such a fighter. Do not feel bad for taking time to recharge when you can. She will need you when she is less sedated. Love to all of you. You are constantly in our prayers and thoughts.
# 1 Jun at 1:55 am
Big hug to you guys. You have been exhausted for ages so catch up on sleep at the mo if you can. Aria sounds like she is so loved by the doctors and nurses and they are doing all they can to help her. I so believe in prayer and what they can’t do, our good Lord can do. You have written about that over and over. We will keep praying for the four of you at this time.
# 1 Jun at 6:37 am
Don Moen’s song “God Will Make A Way”
God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength
For each new day
He will make a way
He will make a way
By a roadway in the wilderness
He’ll lead me
And rivers in the desert will I see
Heaven and earth will fade
But His Word will still remain
He will do something new today
I pray this for you guys today.
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