2010 August - Aria MacDonald

Just a prayer request regarding Aria’s breathing and lungs.

As you may recall Aria has Chronic Lung Disease which basically means her lungs are a bit broken from being ventilated for so long. This means that she finds it hard to breathe and get all the air she needs to get through the day. This has meant that she has been on O2 overnight, however there have been times that the O2 has been sneaking into our days too. We think that she has gone backwards a little and that is disappointing.

Asher is a little unwell at the moment, maybe with a cold or some such innocuous thing little kids get but I guess we are concerned Aria passed on whatever has set her back or Asher has given his bug to her.

If everyone could pray for her lungs and some healing to be done in them we would really appreciate it. Oh and Asher too, if everyone else stays well the better chance Aria has to stay well also.

Aria got to church for the first time in a loooooooong time. She was really excited to go. We went to Grace Reformed in Gretna. It was pretty amazing to finally go as a family. Tears had been shed at that church (and others we had visited) during the times Aria was really sick and we didn’t know what the future held for her. Seemed a complete miracle she was able to actually attend and sit thru most of it pretty well.

Afterwards we went and had lunch with our friends and the pastors of the church Randy and Angie and their kids. We went to a real American small town cafe. A cultural experience 🙂 It was nice food and great company. Again Aria sat really well and ‘ate’ her mac and cheese and played. She was so happy to be out.

It feels surreal to have Aria back in our lives. Feels weird to take her out and go to restaurants and attend church. Sometimes I can’t even believe it. Have I said that before? God is so GOOD! Praise Him! I just feel like telling everyone “look at Aria- she is a miracle from God twice over!” “Look and see what God has done!!”

How boring are our posts lately? Pretty boring. That’s good. We are cooking up a ‘Thanks UNMC’ one. Truth be told it is hard to write, lots of emotion and having to ‘go back’ to that place to reflect on their care for Aria. It’s coming though.

It has been a busy few days in the MacDonald household.  Busy and good.

Here is a random cute shot of matching PJs.

Aria continues to do pretty well.  O2 requirements have gone up a touch but nothing major.  Rash is so so.  I am fairly convinced it is something to do with the hospital.  It got heaps better when she left to come home and then she spent 7 hours in the treatment center and it came right back again.  Mmmmmmm.

We ventured out to dinner at Carol and Cordells on Thursday.  It was a bit nerve wracking- how would the kids behave?  Would Aria be friendly and play nicely and sit and eat dinner?  Would Asher play nice.  Hamish and I realised in the car on the way that it could be a complete disaster and we would tag team during dinner so each could eat.  We prayed after making our little plan.  Turns out, apart from Asher having a tanty about a red cup Aria had and he wanted, they behaved really well and we had a great time.   Karin and her kids were there too and we had a really nice time.

Going out to people’s houses for dinner now is actually something we can do.  Previously with TPN starting at 6pm, it wasn’t really something realistic.  Now we just chuck a tin of formula, measuring cup and jug in the bag with the pump and giving set and away we go.  No sterile gloves and a million supplies or scary central line to worry about someone tripping over and blood gushing everywhere.  Ok that never happened, but it could of and that was something that made evening outings a no go.  The freedom is nice.

Make A Wish visited yesterday.  Aria’s wish is to go to Disneyworld and Seaworld and staying at Give Kids the World.  It is tentatively booked for mid Nov.  We are hoping she will be off O2 and the trach will be gone by then.  We are super excited!  I am excited because there will be no cooking and housework for a week and it will just be a week of FUN!!!!!!!  We get picked up from home in a LIMO!!!  The kids will love it.  We took Aria on the Ferris Wheel yesterday at a sports store in Omaha and she really liked it.

Finally we went for a family swim the other day.  Here is Aria being brave and putting her toes in the water.

Aria had clinic on Tuesday and it went pretty well.  Basically right now she has a diagnosis of chronic lung disease.  No she isn’t a pack a day smoker although she does cough like one.  It isn’t a permanent condition but one brought about by her extreme sickness from her liver disease.

So we aren’t battling kidney disease, liver disease or hirschsprungs disease anymore but we are battling this lung disease.  Not really battling because she doesn’t need oxygen support during the day so we don’t have the hassle carting O2 tanks around.  At night we have a machine that compresses the air and pumps 28% O2.  We were hoping she could do without it but it appears she still needs it.  For how long- who knows.

But we are going to downsize the trach and cap it and see how she manages breathing thru her nose and mouth.  And perhaps at clinic in two weeks, if she has done ok they might schedule her to get it taken out.  It was totally the right thing to do get it in the first place but now it is a bit of work that we could do without.  Then if she still needs o2 at night she will have o2 nasal pongs on her face, like you see on all sick people on TV.

Other than that we are just rocking out at home.  Our air con broken last night and we had a miserable nights sleep.  Super hot outside and inside (80F/32C) all night.  This was Asher this morning clutching his 2 water bottles and feeling miserable.  I couldn’t help wondering if there are kids in Omaha without air con in their homes, made me sad and grateful.

Thankfully it was fixed by lunchtime and we spent a  morning at the mall just walking around.  It was nice.  We are taking Aria places, mainly because she doesn’t touch anything cause she is in her pram/stroller all the time.  Although if I was to see someone sneeze I would run in the other direction!!  She does like sitting in the trolley/cart at the supermarket though but we just use the sanitizer wipes before she gets in.  It is fun taking her out, she really enjoys it.

Monday here in Omaha Nebraska and a new week is upon us.

Tomorrow Aria has pulmonary clinic.  We are really hoping they will decide to remove Aria’s trach.  This will require a GA and a trip to the OR and likely an overnight stay.  Of course frustratingly we haven’t made any progress last week with getting a pulse ox machine that will give us an accurate reading.  But today there is a new company coming with new equipment and together with our home care nurse we are hoping we will get one night of good readings before clinic.

Another good session at PT today with no time outs!  Awesome.  Hopefully she will be feet walking soon.

Make A Wish are visiting on Friday.  We have filled out all the paperwork and hopefully might get some idea of time frame.  Gosh- so exciting.

Please pray for Emerson, Ashley, Sophie and Sam.  These kiddies are having tough times and their parents supporting them are too.  It is a hard road for sure.