2011 January - Aria MacDonald

UPDATE.  Aria is going in for a skin and colon biopsy.  There is a storm coming so lots of out of towners have cancelled hence there is a spot for her.  Got half an hour to get there!!  I didn’t mentioned before but she has had a rash for awhile now.  Comes and goes but it flared up today.  I think they are testing for Graft V Host so hopefully it isn’t that!!

Today is a subdued day.  I don’t want to call it a sad day cause I am choosing not to feel sad, or at least trying to choose not to be sad.

Aria has been off feeds over the weekend and has continued to dump out of her stoma.  Her liquid volumes aren’t good enough to start feeds today either.  We are waiting on an update from the team but feeling sure that a bag of TPN is likely going to be delivered to our house tonight.   Still we have no reason to be long term concerned about this bowel.  It is still likely the result of the norwalk virus and it has improved at times but not for a long enough period of time.  But is it is hard.  This bowel is so precious and I have to remind myself it is also precious to God.  Aria is precious to God.  And too trust Him completely with it and her.

Aria has been home a whole week now!  It has been a pretty busy week and stressful at time knowing how to manage her outputs and replacements.  But it has still been at home and that is good.  And it has been a week of many lovely blessings.  Hamish and I every got to go to the national tour of the Broadway show Mary Poppins which is here in Omaha.  It was really good and such a treat!!  We were so thankful to Carol and Cordell for thinking of us and inviting us along.  And for Christine for babysitting the two kiddos and for Poppa for staying on skype for 4 whole hours ‘helping’ Nana 🙂

Speaking of Nana she is now safely deposited at the Omaha airport waiting for her flight out to Dallas to begin the trek home.  Another reason for the subdued day.  Me and the kids said goodbye at home.  Asher said ‘not go Nana’ and after she left said ‘I like Nana’.  Aria did ok to saying goodbye and managed ok but did just have a massive meltdown and is now in bed.  It has been totally amazing having another set of hands and for Hamish and I to get out and spend time alone.  Last weekend, while Aria was still in hospital we got a whole night to ourselves!  Brad and Steph took Asher and Christine held the fort at hospital.  Amazing people!

Christine is such a hard worker and pitches in without being asked or expecting a thank you.  In fact when I do say thanks she seems almost surprised, like ‘of course no problem’.  Oddly enough, if you asked Christine will claim she had a relaxing time and got two books read.  Not sure how that factors in with all the loads of washing, dishwasher emptying and kid entertaining but it does!  Anyway, it is hard to see her go because she was the link for three weeks to NZ.  The hardest thing about being here is being so far away from our family and friends, it is amazing when they visit.

Anyway.  Not being sad today.  Cause I know there are others in tougher and harder positions than me today and my heart is with them.  We have A LOT to be thankful for.

Our whole family, including Nana left home at 10am and didn’t get home until after 6pm.  We didn’t really intend for that to happen but you know how busy a day can be.

Aria had clinic today and we dropping Nana and Ashie off at the Children’s Museum.  We were looking forward to seeing her labs and talking with the brains there.

Aria is still dumping.  But she looks good and her labs look good!  Weird but GOOD

The ‘big cheese’ of the transplant program is on this week and he ran thru her meds and asked lots questions about why she was on this and that.  He suggested a scope to check for rejection, today, right now.  And we are still waiting for cultures of her stool for virus and bacteria.  He didn’t really agree with my ABX theory from yesterday, which is fine, cause I am hardly going back my non medical opinion against the head of the transplant program!!!

Aria got a scope appointment within the hour (wow).  Unfortunately we had left Green Dolly at home (not thinking she would have a scope today) and she was pretty upset about it.  When we got to the scope room she completely lost the plot.  It was horrible.  Imagine having to calm and coax your child with five other healthcare professionals in the room ready and waiting.  Finally we decided to sent daddy off to get Green Dolly from the car, a bit risk given we knew she wasn’t there and I was losing my co-parent, fellow Aria calmer downer.  Aria liked that plan and started to calm.  AND I grabbed some paints we had brought and proceeded to finger paint a greenie (those green absorbent sheets they use in hospitals) with LOTS of talking about EVERYTHING I was painting.  A poor substitute for the DVD player/computer/toys we didn’t bring and wished we had if we had known.

In the end Aria was a happy chap and wanted to bring my bad painting home.  Those pink things are shapes!

Oh and the scope looked great.

In other news Aria lost her first tooth today!  Don’t know where it ended up, might come out of her stoma bag in a few days.  It had been wiggly for awhile.  This was taken at dinner, hence the grubby face.  Her fave food, guacamole, she went to town on it!

……well, you know the word

Aria is still dumping 🙁   We have been managing it at home and replacing the fluid she loses with IV fluids.  But last night it got to crazy high limits, 1200mls out in 12 hours.   We are supposed to replace anything over 400mls in 12 hours.

We noticed that when she was in over the weekend for her UTI that her outputs dropped to 500 mls for 24hours.  Nice!  During that time she was on two antibiotics (ABX).  They dropped one of them and since then her outputs have crept back up.

The plan was to raise this observation on Thursday at clinic and ask the team for more investigation as to whether it could be a bacterial issue rather than a virus.  But today it couldn’t wait.

Neither could our pleadings to keep her home.  Aria is actually really really happy and active and doing great!  AND it was my birthday today and one that ended in a 0 so I didn’t want to spend another day in hospital with a happy Aria when we could manage at home. BUT with such high outputs we HAD to call of course.

Thankfully the team agreed on both plans and cooked up a really good plan.  Run labs, stop her gut feeds, start an oral ABX and start maintenance and replacement fluids IV- all at home!  Ok, so if this doesn’t make a difference then it will only be for 24 hours but for an extra day at home with a happy Aria we are going to take it!  We are so grateful that not only did they listen to us and the give the ABX hunch a shot, they were willing to work with us to keep Aria home.  Feels really good when your child’s medical team trust you and listen to you, which has only ever been our experience at home and here.

We are getting on weeks now battling this issue.  Still we remain positive and hopeful that it will be resolved.   It is really easy to let your mind jump to all kinds of crazy ideas but we are just resting and trusting that eventually this rock star gut will get back to rocking.

Aria is home, again.

She is much better and her white count has halved and no temps.

We still don’t know what bug it is but since she responded to the ABX we are pretty sure it isn’t her super bug.  She will be on IV’s until clinic on Thursday and then to oral.  Hopefully we make it to clinic and stay home.

Thanks for your support at always

Aria has gram negative rods in her urine.  Bummer!  We were hoping for a gram positive like staph for example.  Gram negative could mean it is her special brand of multidrug resistant pseudomonas.  This would be bad.  Meaning it isn’t just contained in her lungs like we had hoped but has spread into another system in her body.  It also could be something like ecoli too which would be a better outcome.

We won’t know for another 24 hours to get an name for the bug and then more time to see what ABX it is resistant too.

Overall Aria is better today, no temp spikes since the ABX were started.  That gives me hope that it is NOT her drug resistant pseudo, because that variety isn’t sensitive to the ABX she is currently on.  She is still sleepy but a bit more active today and has a bit of her spark back.

Trying hard not to let the ‘what if’s get the better of me.  We DON”T know what the bug is yet, no point in worrying about it.  But it seems like a dark cloud on the horizon, a shadow over the day.

I did feel shaken when I heard it was gram neg.  Dwelling today on what it truly means to have God as our rock and fortress and to not be shaken.

Not sure if I would call our currently situation suffering.  Yet stepping outside the situation and looking at it as a ‘normal person’ (whatever that is), having a child bouncing in and out of hospital with only days inbetween would definitely qualify.

Yet for the MacDonald family suffering is having Aria dying and on a ventilator for months on end.  Which for some I guess would be called tragedy and it was.

Aria is back in hospital.  This time she has a UTI, or urinary tract infection.  Likely from a rash that got angry and spread the past day or so.  For an immune surpressed child little things turn into big things.  Things you don’t really expect.

She isn’t feeling so great.  Hot and bothered.  Pretty grumpy with headaches and a sore tummy.  Not a happy camper.  Hopefully a dose of ABX will start to turn that around.

Hamish told Asher he was going in to see Aria in hospital and Nana would look after him.  Asher said ‘ok’ and kept eating his breakfast unfazed.  It has become a way of life.

I just sit here and watch the snow and type.  Thinking please God teach me something special!  Please let us suffer well.  Please don’t let this suffering be wasted on me like I feel it has before.  Let us know how to love others who are suffering in a extra special way.  Please let others reading this learn something good about Yourself and how great You are!

Aria had her sleep study last night.  She was such a champ.  Really tired but co-operated with all the leads and wires they put on her.

We haven’t gotten the results yet but the tech told me she did really well.  She didn’t de stat and there were no ‘obstructive events’.  So based on that she doesn’t need O2 OR bi pap at night!  WOW.  But we will wait to hear everything.

Omaha Children’s was a beautiful hospital.  You know you spend a lot of time is hospital when you start to rank them like hotels.  Really wished Aria could of gotten her transplant there, would of made the process a tad bit more bearable.  Alas, beggars can’t be choses as they say.

Anyway all and all Aria is doing well.  Few headaches today but hoping some more IV fluids will help this evening.

Good news is that yesterday Aria got out of hospital at UNMC. She is still having increased outputs but they are confident she is on the slow improve, she is stable and we can handle any replacement fluid required at home.

Today however Aria gets to go to a new hospital, Childrens’ Omaha. Aria is going just for an overnight stay for a sleep study at their sleep lab. This is to see if the narrowing of Aria’s trachea due to her previous intubation is effecting her sleep. If it is, then there may be a requirement to make a surgical intervention or perhaps a need to carry on with the BiPAP machine at night.

Best case scenario is that Aria sleeps ok, there are no dramas and we can stop the BiPAP and avoid surgery. God can make this a reality and we are praying hard and covet your prayers for this being the outcome.

Yesterday’s post was written in hospital just before Hamish came in to swap for the night.  We talked and I told him I couldn’t possibly speak and I was going to cancel.  We decided I should drive home and should I feel it was the right thing to do when I parked the car in the garage then I would cancel.

Amazingly but 72nd my tears had dried up and my heart was changed and I felt renewed.  Totally unexplainable.  I couldn’t ignore.  I went home and wrote some notes (which I didn’t end up using anyway) and put some photos on a flash drive.  I went to bed grateful that once I was asleep evil could not change mind and upset me.  Unfortunately I was wrong.

Asher woke up at midnight crying.  Went in and he was covered with…….lets say chocolate frosting……  and then he puked.  Cleaned him up and changed his bed and slept from 1am-5.30am when he woke again.  It seemed to me such a strong force was working against me that it had now become a war and God was going to win.

I was really sad about the fact Christine couldn’t come.  She kindly stayed to look after the sick Asher, who is doing better, poor kid.

So I spoke along with 3 other amazing women.  I don’t know what to say.  God put words on my tongue like He never has before.  It was amazing.  I didn’t feel nervous and I didn’t feel particularly relieved when it was done either.  I just felt like His messenger, telling HIS story not my version.  There were lots of positive comments after and people were moved I think.

I was more moved by being introduced to so many people, all having prayed fervently for Aria.  One person (who reads this blog faithfully) greeted me with tears telling me she prayed for us in the middle of the night at times and loved us.  WOW!  How truly powerful to be told that.

This week I was encouraging a friend to do something hard in God’s power.  This week was a true test to see whether I could practice what I preached!  I didn’t want to and it seemed impossible but I did it!  I can’t even honestly say *I* did it, I wanted to give up, only God changed my heart.  Only God made it happen, I take no credit.  Please, all I can say is try try try GOD will do the rest and I can’t explain how, you will just have to see for yourself.  Just have faith that His promises are TRUE!

Unfortunately Aria is still dumping dumping dumping, likely picked up a fresh bug care of Asher.  Pretty much back to square one.  They haven’t stopped feeds but I am thinking they might tomorrow.  We are SO SO discouraged.  Ok God- if you want us in hospital we are your humble servants, show us the work you would have us do there.  But please, we just want to be home as a family.

Aria’s gut has been making good progress over the past few days.  We have been able to decrease her IV fluids and increase her gut feeds by 10mls every 12 hours.  Her outputs have remained low and steady.

Until today.

We were due to switch off the IV fluids, currently running at 10mls per hour, and put her on to full feeds of 50mls per hour.  But since 6am to 6pm tonight she has had out 700mls when she should have had out 300mls.

So frustrating.  We make progress and then regress.  Now what?  Will the dumping increase?  Will we be right back to square one in a few days? And then have another one week admission trying to slowly get feeds going.

Oh yeah and we got the results from the MRI today which Aria had to see if we can get these headaches sorted.  Aria has a ‘brain injury’  Apparently nothing to worry about but likely caused from how bad her liver disease got.  AND still no answers as to what are causing the headaches.

I am supposed to be speaking tomorrow at Lifesprings Church tomorrow morning at 9am.  About our journey with Aria and God’s goodness to us.  I have been going back and forth in my head as to whether I should do it.  Truth is I would rather crawl into a nice ball and feel sorry for myself.  Getting up in front of strangers seems like an impossible task.  I feel like an empty vessel, discouraged and disheartened.  Hardly someone to be trying to encourage others.

Anyway, God moved once today, hoping He moves again.