2010 March - Aria MacDonald

Today started off on a pretty bad note.  I got to Aria’s room this morning and she hadn’t passed any urine since last night.  And her temp was up to high 37s and the heartrate is up to the 130s AND her blood sugar was pretty high.  ARGH.

So they started to cath her to see if perhaps because she is so swollen it is hard for her to pass urine and as they went to cath her they found a wet nappy so they decided to hold off.

So it was all bad news this morning and then we had doctors rounds.  They didn’t not go well for a couple of reasons.  That’s all I am going to say about that.

By about 11am I was pretty upset and we both decided it was time to get out.  So while Aria slept we went for a drive with Asher to our possible new neighbourhood hoping that the decision making about moving would be easier if we had a better feel of the place.  We had a nice time.  We stopped off at the SuperTarget and Asher ran around like a wild thing just so excited to be out.  Honestly he was so funny.

Finally we came back feeling better but no closer to making a decision that I mentioned in the last post.  I decided to ring the person who had been helping with the property to get his gut feel on what we should do.  Thankfully he had great news for us.  The people in the 3 bedroom place had just handed in their notice this morning and the place will be available on the 14th of April!  Perfect timing.  Hopefully Aria will be in better shape in a months time.

Thanks to everyone that prayed.  We are so excited that the Lord answered your prayers (and ours) so quickly and saved us the decision making.  Honestly we have no energy for such things right now.

Please pray for Aria, she is in a tight spot and really needs the Lords healing and overruling in her little life right now.  Again no urine this morning and this afternoon so they have put a cath in and about 100mls came out.  That is good but a shame she has to have another tube back in.

Today was a fairly quiet day.   Thankfully it appears that Aria temp dropped down to normal since her trip to the OR.  Also her heart rate is back down to the early 100s.  It has been sitting in the 150+ since Saturday night.  So those are all good things.  However she has about a kilo of fluid on board and is pretty puffy.  And her kidney are throwing a tanty.  They are sensitive little organs and they are stressed right now.  But they will bounce back, they always do.

The music lady came today for the first day since transplant.  Asher stood on the chair next to Aria bed and played with the instruments. He kept passing them to Aria to play with and trying to get her involved.  Super sweet.  She was pretty sleepy as they have upped sedatives.  But towards the end she managed to hold the banana shaker.

Got an email today from the guy who we have been in touch with regarding the apartment we have been looking at.  A two bedroom condo is available from the 10th of March.  This will be the last one because it is heading into summer now and the complex is popular.  But there is also a 3 bedroom (our preference) probably coming up in about 6 weeks although the current tenants haven’t handed in their notice yet.  SO we have to decide if we want to go into the 2 bedroom and move later IF the 3 bedroom was to come up OR wait and hope the 3 bedroom comes up.

Waiting and taking the chance is probably the easiest and hardest option.  We are starting to struggle at the Lied.  We have been there 3 months now.  We are so keen to cook our own food and to stop paying $3 a day to do our laundry.  Plus we need space, having three people in a hotel room is trying at times.  Plus we feel like we live at hospital and there is just no mental break.  BUT with Aria still in PICU and we can’t room in with her it means maybe two 20 mins drives back and forth early and late at night.  And we would be 20 mins away if something were to happen.  It would be better to wait the 6 weeks and she would be on the ward (hopefully!) and we can go in 24 hour cycles.  But the idea of 6 more weeks here is UGH

Aria is sweet, she likes to hold my hand so she can go to sleep.  Better go cause I am not good typing one handed!

Today was a really tough day.

Aria had her 10th surgery and we had a big meeting with the ‘Powers that Be’ at UNMC AND poor Hamish had ‘tear your hair out’ time at the DMV trying to get the car registered this morning

Aria’s surgery went well and we are thankful for the outcome.  There was no hole as such in her bowel but because her body is slow to heal there was tiny leaks between about 1/4 of the stitches from the OR trip on Friday.  So not ideal but no tear and the surgeon was able to reinforce the stitches.

Hamish and I had two choices about how we were going to handle the whole ‘lost organs’ business.  We could hire lawyers and spill our guts to the media to hurt UNMC like they have hurt us.  OR we could sit them down and talk and tell them about our experiences at UNMC.  I can’t be bothered posting a password post but things here haven’t been easy we hoped by sharing something positive might come from it for other families.  The meeting was very very hard and took a massive amount of courage.  Not to make it sound like we are amazing courageous people but we HAD to do something, even hard, to turn this into good.

Thank you to everyone for your love and prayers today.  We are so grateful.

Please keep praying for Aria’s healing.  This is our primary request.

Since the last post where Aria had a great day, things have not been quite so rosy here.

Aria has had a couple of days where she has been a little upset and running some fevers and having her heart beating a little too fast. While they are happy overall with where she is at there are a couple of things that need to get sorted for her to really push forward with her recovery.

First of these is the stitches connecting her new bowel together need to stay attached and not leak anymore. These leaks contaminate her abdominal cavity, causing the fevers and necessitate further surgery to correct them. They also may prevent feeding from occurring till they are sorted. Today we face another visit to the OR to repair another leak that has developed or returned. For those keeping score this is visit 10.

Secondly is her diaphragm which continues to be a source of concern. They believe this was bruised during one of the many surgeries and will take some time to heal and enable her to breathe to her full capacity. This obviously effects when she will be able to finally come off the vent. There have been various scenarios given some rather grim (months on the machine, giving her a tracheotomy), some more positive but either way she has a way to go and some work to go to be free of this machine.

All in all it has not been a pleasant few days for us, and on top of this we have a meeting with a bunch of hospital big wigs today to talk about our experience at the hospital.

All of these things weigh heavily on us and we would appreciate prayer for them all.

Luckily in this situation we have people who God has given us to help provide comfort and support.

Asher again got treated to a zoo visit yesterday courtesy of Elaine and her tribe.  He was very cute when he saw Elaine’s huge van, he shouted “Bus!!” and pointed towards it.

Anita got to have a night away from hospital courtesy of Carol and Cordell, who welcomed her and Asher into their home.

Finally Randy has risen out of his sick bed in time to offer his support to us for our meeting today, it will be nice to have another friendly face in the room.

Although times are tough here, God knows well enough that we need people around us to lend a hand. We are really appreciative of all these people and all that they do, as we are to all of you who read this and pray for Aria and our family. THANK YOU.