News - Aria MacDonald

Aria had her second day of sprints today. She had mixed results.

The first attempt we had this morning did not go particularly well. They let her initiate the breaths herself but Aria decided not to breathe. After trying to prompt her to breathe and giving her some support it was decided that she needed to go back onto the vent which was a little discouraging to see. The theory that was floated is that some medication she received prior to the sprints starting may have left her too sedated to get going with her breaths.

This afternoon however we went for heat two and results were better. Initially Aria responded quite similarly to this morning, not initiating breaths. The respiratory nurse put her back on the machine to get Aria oxygen levels back up and we discussed why she wasn’t do as well today when she did great yesterday. While we talked the respiratory nurse took the support away again and Aria kicked into gear slowly but surely and went for the full 90 minutes she was scheduled for, YAY Aria. We only had one little patch where she stopped breathing when the nurses were checking her vitals. We came to the conclusion that when she gets ‘messed’ with she holds her breath and forgets to kick into gear again. I guess when you have been breathed for, or at least got a lot of help with your breathing your body might forget how to do it by itself.

In other news regarding Aria, the contrast study wasn’t quite as successful as we initially hoped. None of the contrast was going down her bowel, it was all leaking out from a spot they can’t operate on. Good news is that the drains she has in place cleared the majority of this from her abdomen, bad news is that it means intestinal feeds are on hold for a while. Seriously it feels like, one step forward, two back, two forward, one back….

As always, your continued prayers are coveted and appreciated.

Today we are happy.  They decided to start Aria on ’sprints’.  Sprints is were they turn off the breathing support from the vent and Aria initiates all her breaths herself and then the machine comes in with the air she is asking for.   They tried this for half an hour and she did great!  Her breaths stayed at around 30ish which is normal.  If she was struggling to breath she would of gone higher (like when you run and you breath faster) to like 60.  So they will try again this arvo at 2pm for 45 mins.  Then a hour later tonight and then 2 hours three times a day tomorrow.   And then hopefully remove the breathing tube fully.  So we are really really happy and praying the other sprints go well.

In other nervous news her temp, heart rate and white cell count is up today Her temp peaked at 38.3.  She has a patch of hot red skin on her pelvis and it might be a little skin infection from the fluid build up.  So we asked to the team to move the Cat scan forward today and they agreed.  Worst case it could be another leak in Aria’s bowel that is causing the temp.  We know there is a leak but everyone is hoping it is small and will heal without a trip to the OR.  She is having some contrast now down her feeding tube into her tummy and bowel and it will leak out and show up on the xray.

So praise and prayers today for sure.

Thank you for your beautiful messages and encouraging words.  This is the wonderful thing about this blog and a reminder that there are many people caring and loving and praying for Aria and our family.  Thank you.

Update:  nurse just took Aria’s temp and it was 37 !  good news.

Prelim results from the Cat scan are good.  We could see the contrast coming out her stoma and not out of the drains.  The person who did the scan said nothing ‘jumped out at her’.  This is great because last time even Hamish and I could clearly see all the contrast leaking out of the top of her bowel into the abdo cavity.  But we wait for official word from the transplant and ID team.  maybe maybe maybe we can start intestinal feeds soon!

…..it is the smell of fresh air.  This was a little joke I heard while tidying up today and the cartoon network was on in the background.

Asher and I are getting out and about.  We went to the Omaha Zoo today.   It was Asher’s third visit and my first.  Our friend Elaine has been taking him and today I decided to tag along and get out.  It was really fun and Asher had a great time running around with her two boys who are really kind to him.

The highlight was the gorillas, wow such amazing creatures.  I can’t remember if I had seen gorillas before at the Auckland Zoo.  But they were right up close and I was just struck by how truly big and powerful these animals were.  God did something truly great when he made these and all animals.

Aria is ok today.  Nothing new to report.  I guess we see things differently to the doctors and we try to get on board with their thinking.  For them a temp of 37.7 isn’t worth worrying about but for me I feel uneasy about it.  I still think there is a leak in her bowel and so do they.  But again they say it is small and I feel uneasy about it.  So a cat scan with contrast put into her feeding tube will show on Wednesday what is going on.  Everyone is hoping that nothing major is found like last time.

In better news her right diaphragm has dropped a bit telling her that we are heading in the right direction with getting off the vent.  They are weaning her vent and making her do more work to breathe by herself and she is doing well with that.

My sister is visiting in May and I am really looking forward to that.  Things have been super hard in the past month.  Perhaps the worst in our lives.  Maybe the first month of Aria’s life was hard too.  But at least we had our family and weren’t in culture shock.  Plus we had a brand new baby, yay!  Life certainly has lost its spark and I feel pretty unhappy.  Did I share to much?  Maybe.  If anyone has some verses to share about life and being down please post, would be happy to hear from you all.

Life will get better, dear Jodee reminded me today.  Thanks Jodee.  This is just a season of hardness and pain.

ANYWAY enough gloomy gus from me!  Love to you all and thanks for walking with us.

Today Asher and I went out to the children’s museum here in Omaha thanks to our friend Stephanie who picked us up at 1pm.  I must confess to being pretty nervous all morning about going out.  Most times I go out I have my safety blanket Hamish with me and I don’t go to new places very often, only the supermarket and stuff.  Living in a hospital all the time it is easy to stay here all the time because it is safe and familiar, yet it at the same time, it’s tough going here.

ANYWAY we had a great time, it was a super fun place for adults and children too.  We spent about two and half hours there.  They have yearly family passes that I think we might look into.   Asher had a great time and ran from place to place.  So many things to do, it kinda reminded me of a cross between Lollipops and Motat.  Stephanie took some photos so there will be some pics so on Facebook.

I thought a lot about Aria when I was there and how much she would of enjoyed it.  Thought about the cousins too and how all three of them would love it.  There is a little supermarket there with working checkouts and shelves with grocery items.  I could see her pushing around the little kiddie sized carts.  But it will be awhile before she is able to visit a place like that because of her suppressed immune system and all the germs BUT we will take her one day.

Aria has been more awake today, which made for a tricky and somewhat demanding afternoon for Hamish.  She points and wants lots of things but because she can’t talk it is tricky to guess what she wants.  But she is doing well.  The highest temp has been 37.5 and her heart rate is in the early 100s.   Her white blood cell count is fine and even came down a little bit.  There was also another blood test, that is a precursor to the white blood count, that dropped down heaps.  So all signs point to the change in ABX has been a good thing for Aria.  And the pee is flowing about 30mls an hour which is ok.

Thanks for checking in

Aria’s little body is doing ok today.  Although we had some news this morning that wasn’t particularly good.   She has been growing a bug in her abdominal wall called pseudomona.  Today we are told that it has morphed into a ’super bug’ and is only resistant to a handful of ABX.   And those ABX are pretty hard on the kidneys and you normally have to treat with two of them.  Great, her kidney are already mad because her progaf/tac/FK (her anti rejection med that has three names) levels were too high.  So thankfully the bug was sensitive to a ABX that isn’t quite so hard on the kidney and they have started her on that.

So Aria really really needs to avoid the OR and have no more bowel perfs because this introduces more bugs into her body.  ARGH!  Thankfully four weeks on she isn’t showing any sign of rejection, the window is always open but is more open in the first 6 weeks.  So infection seems to be her battle.  Plus the vent issues.

Today we had a ‘care conference’ which was kinda weird because I don’t think there would of been much to say if I hadn’t asked lots of questions about feeding.  Hopefully next week she will start on feeds.

Anyway there is more to say but I am really tired.  Thanks for checking in on Aria.

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.

We are greatly encouraged!

Aria had a great day today.  I asked the nurse if I could bring the pram and if Aria could sit in it.  Previously when she sits up in bed it takes at least two people to support her so I always have to ask for help.   Fluid in her body is pressing against about 1/4 of her lung capacity on both sides so they are super keen for her to be sitting.  The more that fluid drains the quicker she will get off the vent.

So it took about four people because she had all her lines hooked about to her pumps (about six) and the vent connected to a different machine.  So one did the pump one did the vent, one lifted her and the other spotted and I helped with the pram!

But she sat for a good two hours.  When we first sat her in she looked really pleased to be out of bed and in her pushchair.  Remember before transplant she spent more time in there than in her bed.  She coloured with crayons and felts, we read books and she pointed to the pictures.  I showed her some pictures on Facebook her Aunty Megan had just uploaded.  The corner of her mouth turn up and she scrunched up her eyes when she saw her cousins and Nana.  Was it a smile?  Very hard to tell but definitely was happiness of some sort.

They came back after two hours to put her back in bed and she wasn’t keen but they didn’t want to push her.  We all thought she would be really tired but she stayed up to about 3.30pm watching Wiggles on the computer.  She clapped and moved her hands and feet in time to the music.   She was sitting right up in bed with the computer on the meal tray in front of her.

At about 4pm she feel asleep with her arms around the blood sugar machine she insisted she wanted to hold.  Funny girl.

Asher is spending the night with Angie and Randy and their lovely kids.  So Hamish and I took the opportunity to go out for tea.  I was not keen to leave Aria but we were pretty sure after her big day she would sleep for at least two hours.  Hamish convinced me and the nurse said ‘go go-  I will call if she wakes’   So we went to Texas Roadhouse and both had big steak dinners.  It was so so good to eat a decent meal, sitting at a table with the knife and fork.  (in case you are wondering we don’t use Trust money for such luxury things)

So proud of Aria, it is really tough.  She just had surgery yesterday but she is full into life trying to make the best of it.  I am sitting here in her room watching her sleep.  She slept the whole time we were out and looks like she might be done for the evening.

The bad news for the day was that they still think she is pretty weak and looks like it might be weeks rather than days for her still on the vent.  She was so so sick going into transplant and with 9 surgeries her little body is tired.  But it is just time and we have time.