2010 June - Aria MacDonald

Honestly, these kidneys……  Temperamental is all I can say.  Last week they were rock stars and this week they are total divas.  Throwing tantys and not working!  The three daily doses of lasix over the weekend did nothing.  So today we are trying another med Zaroxolyn to see if will help them.  Next stop is a lasix drip and then DIALYSIS!  Yuck.  We are really hoping the meds do the trick.  We are nervous about them and can’t blame the high FK level for their problems like we could last week.  The surgeon is new this week and agreed with me, thank goodness.

Her WBC is around 33 today which isn’t good and really no great answers as to what is causing the fevers.  Her blood sugars spike in the middle of the day and she has to get a jab of insulin which she HATES.  Although we tried her leg this time and that seemed to be better.

There are a lot of ticks in the right boxes though.  No TPN!!!  Her heart rate and BP are great.  She is sitting up and did great with her PT exercises today.  She had music and preschool as well.  She isn’t super happy but is managing smiles.

Asher had a rough morning and more temps and D&V.  Poor little dude.  I wish I was home with him but he is doing great with Daddy.   He asked Hamish for mac and cheese so hopefully he keeps that down.

So we are feeling a bit sad with the current situation.  Thanks for your prayers- we SO appreciate them.

Miss Aria continues to spike fevers, up to 39.1 last night and her WBC bumped from 22 to 32 🙁  She continues to be fluid positive each day, meaning her body is storing fluid and not peeing it out.   I feel like she is going backwards but I am being told she is ‘in the middle’ not forwards not backwards but next week her kidneys will pick up.  What can I do but trust the experts and say ‘ok’

Mr Asher also spiked a fever today and was not himself this morning.  At home, of course, I would of rung our GP of 20 + years and would of had an appointment that afternoon.  For free.  Here of course if is a US$150 decision.  At about 2pm Hamish rang me to say Ashie had spiked to 39.9!  Yikes, off to the doc.   They were lovely and Ash was seen right away and the Doc reckons it is a 24 hour intestinal virus.   He has perked up tonight and was jumping on the our bed with me.

Regardless we are praying hard for healthy kids very soon.  And thankful that today they turned off Aria’s TPN and she is on 60mls per hour of feeds, 5 more mls and she will be on full feeds.  TPN is no longer part of her life although I suspect this old friend might come to visit from time to time.

Just a quick prayer request for both of our lovely kiddies.

Asher has a mystery fever at the moment, please pray that it is nothing significant and he’ll get better on his own and quickly. Also pray that whatever it is doesn’t spread around the rest of us and especially to Aria.

Aria still needs prayer for more urine output, and that she would get over the rhino-virus that is still lingering, not to mention the Pseudomonas and whatever else might be causing her fevers.

We really appreciate that you are all there for us to call on when we need some prayer warriors, and appreciate even more that God hears those prayers.

Aria had a ‘meh’ kind of day today. For those not familiar with the term it is an expression of indifference. Aria didn’t have a great day or a bad day, it was just meh.

There was some good in it, her feeds got up to 50ml/hr, and her vent settings came down a wee bit, but she also ran a high fever this morning and slept a lot today. So all in all it was about average. One step forward, one step back.

Tomorrow however might be much more exciting with the real prospect of them turning her TPN off completely and her being totally fed through her nasal gastric tube into her stomach, her ‘nose noodle’ as we call it. (That is right, the ‘wiggle’ is getting laid off, its time for the ‘noodle’.)

Prayer would be appreciated for the ongoing fever spikes she gets now and then, if we could pray they would just go away and stay away or a clear answer could be found that we can treat, that would be awesome. Oh, and while you’re there plenty of thanksgiving for Aria coping so exceedingly well with her feeds.

Aria’s feeds are up to 40mls per hour (target 65-70).  Aria will be TPN free in a few days.  ALL GOOD

Aria’s vent settings for o2 are back to normal ALL GOOD

Bilirubin- 1.1.  ALL GOOD

Sitting all day in her wheelchair and refusing to get back into bed even at 6pm at night ALL GOOD

Falling asleep with her head on my shoulder and my arm around her ALL GOOD

Giving mummy lots of kisses this morning ALL GOOD

Dancing to Barney and the Wiggles ALL GOOD

There is still a long way to go but things are ALL GOOD

Today was a full on day.

Technically it is Aria’s 4th Birthday today, but we have chosen to wait for a time when she is really well to celebrate it with her, however it is amazing to think that our little girl who we were told at 10 days old would die, has made it to four, and now has a great chance to live a good, full life.

We started the day with the four of us plus Auntie in hospital as it was Auntie’s last day here in Omaha. Each day to begin the day we have members of all the various teams involved with Aria’s care come and see her. The intensivists, the transplant team, the infectious diseases team, the respiratory team, the physical therapists….. it is just a constant barrage of people. After this comes rounds where we get the summary of how things are and what the plan going ahead is. Today there was a lot on the plate.

So after rounds Auntie said goodbye to Aria with the promise that she would send Nana and Poppa back to see Aria. Aria liked this idea a lot 🙂 Auntie was here at a really useful time in our journey, we appreciate her sacrificial attitude and willingness to do whatever was needed in our chaotic and unpredicatable life.

We then had the following: Physical Therapy in which Aria got to sit on my knee for about 90 minutes while we watched Madagascar 2, did an interview with a camera crew for the Attitude TV team, pened up some more of the staples on her tummy to let some nastiness out, did an echocardiogram to make sure that the drugs she is on are not harming her heart, had another ileoscopy to take another biopsy to make sure things are still good with her new bowel and amongst all of those things were the regular treatments from the respiratory therapists and her normal observations and medications.

Now the amazing thing about this is that Aria stayed awake through all these things but was smiling and joking most of the time. She is such a trooper! She was in one of her cheeky moods today, making me laugh and keeping me on my toes. While she is still a way from being ‘right’, today was a good day that I will treasure.

Thanks for all the birthday wishes and continued prayers, as always they are greatly appreciated.

You know when the phone rings at 6am that the caller is likely to be Aria’s night nurse and it is likely the news isn’t good.  Of course they don’t ring when there is good news- why would they?  They know you would probably rather sleep.

The news was that Aria’s gases weren’t very good and they had gone up on her vent settings.  They were getting lots of yuck out of her lungs and she was struggling a bit.  Stink.  Yesterday looked so promising and now things were looking bad again.  It is so very disappointing – we are SO OVER this rollarcoaster of emotions- it gets so draining.

We got it and Aria had her ‘crazy eyes’ and wasn’t really ‘with it’ She was doing a bit better but the sedation what obviously not working well for her.  They are changing it to oral vs IV which is great but increased the dose just in case it wasn’t getting absorbed but looks like it is.  So after some talking the dose has been decreased.

We were really keen to do a bronchoscopy because it would seem to me we are missing something.  There is something going on with Aria’s lungs that we haven’t nailed.  Thankfully we have a good team who listen and even though I was expecting an arm wrestle at rounds the surgeon sat down with us and agreed immediately.  Hopefully the bronch will a) clear out a bunch of yuck in Aria’s lungs AND b) provide cultures so we can test for bacteria and viruses.  I think it did both of those things pretty well and everything looked fine when they went in.

We also got the feeds increased to 20mls an hour and got her NG tube changed to a feeding tube rather than a hard plastic suction tube.

I am thankful because I do believe that they listen to us here- we got everything we wanted today.  Not in a ‘throwing our toys’ kinda way but a ‘this is what we really think is best for our daughter way’  Plus our nurse today is one of our faves.  A good nurse is a good advocate for their patients and this is really important to us.

So it is Aria’s birthday in NZ where most of her supporters are.  Sadly this event is on hold until she is over this bump.  But we will still save your birthday wishes and tell her when she is better.

Aria is on the improve!  Yay!  We are very relieved about that.

Her WBC is down to 24 just like the surgeon said it would- I love it when they are right!  All her labs are improving which is good and her pee picked up again although it isn’t ‘rock star’.  She didn’t need any extra sedation overnight either which we were pleased to hear.  Feeds are up to 15mls per hour.

AND there were smilies and dancing- haven’t seen that for a long time.  Asher came to visit her after preschool today.  We held him over the bed so he could give her kisses.  He gave her three big ones on her cheeks and nose and she thought it was awesome. Big big smilies from her.   So cute also that Asher is still affectionate and loving towards her every though they haven’t lived together for months.  Last week he was standing next to her and lent over and hugged her even though she was paralyzed.  He is super sweet and a very important part of her healing.

Aunty stayed the afternoon with Aria and said Aria did some dancing and also gave out lots of smilies.

We got a taste of Nebraskan weather today with storms and a tornado warning in surrounding counties.  It went pitch black at about 5.30ish and then green.  Very odd cause it is normally still light at 8 pm being summer and all.

Anyway – thanks for your prayers!  They work- God hears 🙂