Ups and downs
Feeds are going well and having been increased from5 to 10mls per hour. Â Are you thinking the same thing as me? Â 10mls an hour!? Â That is like nothing. Â The end goal is 80mls an hour 24 hours a day- so there is a long way to go but one day at a time. Â Aria is getting this stuff, it goes into her NG tube which goes in her nose and down the back of her throat and stops just before her tiny stomach.
Aria’s health has regressed a bit today which is disappointing. Â Her vent settings have gone back up. Â Mainly because her FK/prograf/tak/anti rejection med level is too hard and her kidneys are mad. Â And when they are mad they don’t process the pee very well so she retained 800 mls of fluid which makes it harder to breathe. Also her WBC bumped up again to 30, which is getting to high for my liking. Â They took the staples out of the bottom of her wound and it popped open and let out some fluid which was the result they were looking for. Â But cause they have ‘stirred things up’ this in the reason for the WBC to jump and it should come down tomorrow- hope they are right!
In general she is pretty sleepy and not up to much except watching DVDs if she is awake. Â It is her birthday on Thursday but we are thinking about putting the celebrations on hold until she can enjoy them. Â She is young enough to look forward to her birthday but not old enough to realise what day it is. Â We would like to do lots of fun things for her and have her be able to enjoy them on the day. Â We know her health can get to that point so we want her to be in the best spot possible. Â Aria needs to have fun- she deserves the best birthday ever!!!!
Today is Memorial Day in the US, kinda like ANZAC day in NZ. Â Aunty sat with Aria and Hamish Asher and I went out to play baseball and a BBQ at the pastors house of one of the churches we go to. Â Actually Hamish played ball and HIT A HOME RUN! Â Asher had a mad fun time playing in the padding pool and ‘watering’ their dog (who loved it) Â It was lots of fun to get out although kinda hard too cause we feel different and weird.
Anyway thanks for reading and all the super comments yesterday- it was a HUGE day. There is a lot to be thankful for, but please pray Aria feels better soon!
26 Responses to “Ups and downs”
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# 31 May at 6:53 pm
Sending love and kisses to Aria – making progress bit by bit.
xxxxx
# 31 May at 6:56 pm
Praising God that feeds are going well and praying for continued improvement and for those kidneys to keep peeing! xxx
# 31 May at 7:13 pm
Thanks for the update. Praying for the ups AND the downs mentioned in the post. Of couse, wishing that progress could be quicker, but will just keep trusting. Let us know if you need any help on Thursday.
# 31 May at 7:54 pm
Sorry things are still so up and down but …. 10ml and hour is awesome! For a wee girl who has never had anything go down, I’m sure that is huge for her little body to cope with. I remember Lara being on low doses over hours at a time (yes I know she was a baby compared to Lara) but the vomiting back up is not what you want and this is what will happen if her tummy is overloaded! Anyway sounds like you had a fab day out (all american by the sounds!). Well done! Good Idea about saving the birthday until she is more able to enjoy it too.
# 31 May at 8:03 pm
Just a wee note from New Zealand to say a BIG hello to you all, we hope and pray every single day for Aria …. I read your blog daily without fail … I then ring Scott in Christchurch with an update (he doesn’t really use computers, his girlfriend is slowing teaching him). Did Doctor David Grant perform Aria’s transplant? I still chat to him, he likes to hear how Scott is doing. Not sure if you remember but Scott is now a daddy to beautiful Charlee Grace, she is nearly 9 months old. Scott is doing great, but unfortunately had a few trips to Auckland City Hospital, with infections etc…every single day is a blessing to have him with us, November 2011 he will be 40 yrs old… I still cannot believe it… he is sure loving life with his daughter and girl friend Jo. Please tell Aria he sends his love and best wishes everyday. Take good care, Nicky Large
# 31 May at 8:39 pm
Nestle, must be good!!! Well done Aria!!
re. Birthday day – last year my mum died the day before Mieke’s birthday, our kids all ended up at Coromandel with husbands parents and so we didn’t celebrate Mieke’s birthday till we picked her up 2 days later…. Miraculously no one told her we had all postponed her birthday but was the right decision as she had a mum who was still a mess but a little more able to function and somehow managed to throw a birthday party together…. Didn’t hurt her at all and I think choosing a ‘well’ day to celebrate can be a good thing… The day itself is very important, when you celebrate it is less so.
So neat Aria is going to be 4, thats definately Big Girl status!
Hope stat’s are all looking better tomorrow. Love to you all x
# 31 May at 8:40 pm
WOW. 10 mls is huge. That is great progress. My DD survived on vivonex via gastrostomy at a rate of 50mls hour. May the progress continue. I have followed Aria blog for a long time but never posted but feel today’s post is SO special for all your family. Love from Timaru NZ. (I am Nola and Andy’s niece in law).
# 31 May at 8:55 pm
Its hard there are still downs but I am thankful for the ups, She is doing so well 🙂 What an amazing little girl you have 🙂
Must be so hard to not do things as a family, but the little time you get to spend away from the hospital I am sure makes you much stronger for when you are there.
Thoughts and prayers with you always.
Kelli from Auckland 🙂
# 31 May at 9:03 pm
Wow- 10 mls doesn’t sound like much- but really- from nothing- it IS progress. Well done everyone
# 31 May at 9:21 pm
Ups and Downs is an interesting title. As long as the food goes down and the temperature doesn’t go up all is well! Keep looking UP! It wiil stop you from feeling DOWN.
# 31 May at 9:49 pm
Glad to hear that dipite the downs there are still the ups and that her feeds are increasing which is in the right direction. Understandable why they have to start with such small amounts. Her teny tiny stomarch wouldn’t cope otherwise.
# 31 May at 10:07 pm
praying for Aria
bless Aunty
what a lovely time the rest of you had 🙂
and WTG Hamish!!!
# 31 May at 10:10 pm
10 mls is HUGE!!!! I remember too thinking “how will we EVER get to 8o??” It took Caed a long time to even get to 10. I say Aria is doing wonderful in that dept! We will continue to pray for the other issues that are popping up.
We LOVE you guys!!!…..and LOVED the sweet cuddle pics!
# 31 May at 10:42 pm
Sending hugs to all of you! I hope Aria will be able to enjoy a birthday party soon! I’m glad to hear that you had fun today! You, Hamish & Asher need time to yourselves. God Bless!
# 31 May at 10:43 pm
That is progress indeed, Praise the Lord.Blessings, Judy.
# 31 May at 10:46 pm
Good to hear there is progress 10mls is a starter pray for the day she gets to 80, God bless yous all our prayers and love are with yous
# 31 May at 11:17 pm
am praying that Aria becomes stable – it’s amazing that she is on intestinal feeds – hugs to you guys
# 1 Jun at 3:23 am
Good to hear things are progressing somewhat smoothly. Thankyou for the explanation, it helps put everything into perspective and have a better understanding of the whole process. One day she’ll have some of her own birthday cake, but it’s all in her timing. Stay strong.
# 1 Jun at 3:37 am
Glad feeds are going well. I know its a long way of but will she get to eat normally one day and not be completely tube fed???
Continuing to pray for strength for you all. xx
# 1 Jun at 4:22 am
Love to you all. Pleased to hear Aria is progressing slowly – even with the little setbacks. and also pleased to hear the 3 of you were able to have a fun day together.
# 1 Jun at 5:24 am
Pleaased the feeds are going well, praying that her breathing, peeing and WBC improve and she will be feeling better soon. So pleased you were all able to go and have a fun time together,thanks Alex( Yay Ham a home run, impressive.)
# 1 Jun at 6:18 am
Aren’t small steps frustrating when you want to run?! Hang in there, good work Aria. 10 mls is really wonderful. Sam started on 1 ml over 4 hours (!) and worked up to 14 mls as his gut got used to food….. slowly slowly…. we look forward to running with you soon!
# 1 Jun at 6:27 am
Thankful for each new day and little steps forward.So happy you had a nice Memorial Day.
Praying the good news continuies.
# 1 Jun at 1:47 pm
Hi I pray for Aria every day and she is in my thoughts. I have been thru watching one of my children fight to live stay strong I think you are awesome and just tap into all the love and prayers that are coming your way. I know I had my guardian angel working very hard for me. Love to you all Take Care
# 1 Jun at 3:36 pm
What lovely comments today ……. just read them all …… I say Amen to them all.
God bless you all.
With love and prayers
Eve
x
# 1 Jun at 7:04 pm
Thinking of you all and am very happy to hear yesterday’s news 🙂