Clinic - Aria MacDonald

Clinic

First up- Aria has been out of hospital for FOUR WEEKS today!!!! YAY :D

We had a really productive clinic today. Everyone continues to be very happy with Aria and her progress brings big smiles to everyone’s faces. Hamish and I had a few issues we wanted help with. First up, almost two weeks after pulmonary clinic we still haven’t made progress to downsize and cap the trach! Frustrating. We talked to the surgeon today and she said ‘forget about it, let’s just remove it- how does tomorrow work?’ Of course we would LOVE to get rid of it but panciked a bit and decided next week. So next week we will admit Aria for 24 hours and do a little sleep study and remove it at 9am and leave at 9am the next day. Maybe if we remove it Aria might not need any o2 at all. Something to pray for!

UPDATE: The hospital rang and it is coming out next Tuesday and staying overnight in the PICU, which is Hamish’s birthday :( Feeling like we should of said yes to tomorrow. Perhaps we might have to celebrate his NZ birthday on the Monday!

They increased her fluid cause her HR has been up a bit and her labs look a little dry. And she lost 500 grams which is likely to be left over fluid.

She still had a rash but her EOs and WBC have been trending down nicely so that is great news. But they agreed to refer Aria to a paeds dermatologist so hopefully we might get some answers.

We didn’t get to have lunch with Emerson and Erika because clinic was running late but hopefully catching up on Saturday. Perhaps we might be able to have both miracle girls in the same room! What a picture that would be. They played a bit together today, it was pretty cool.

17 Responses to “Clinic”

  1. Jess says:

    yay for progress!

  2. Carolyn O'Cain says:

    Praying about the trach removal. God is so awesome! Take pictures of Emerson and Aria together. LOVE both little girls! Sending my love and prayers to you all.
    In His great love,
    Carolyn O’Cain

  3. Joan says:

    I can’t believe it’s four weeks – seems like yesterday. AND what progress. Good luck with the coming days.

  4. Shirley says:

    Praying for those lungs to get stronger with each breath, glad there is so much progress. wishing you a good weekend.

  5. Samantha Sutherland says:

    What great news! It will be so exciting to be rid of the trach!

  6. Ekho O. says:

    Hamish & Anita,
    I read about your story today in the hospital’s newsletter, and I couldn’t believe my eyes when I saw Aria’s diagnosis. My son also has total colonic Hirschsprung’s disease, although our road has been much less difficult than your family’s as my son had only 20% of his small bowel involved. I’m a nurse at the Med Center, and if you guys ever have some down time, I’d love to meet you. It’s such a rare diagnosis, and I only know people online whose children have the same thing ours do. Feel free to email me at ekho_chaa@hotmail.com !
    -Ekho O.

  7. Kathleen and Anita says:

    Praising God with you guys!

  8. Judy Palmer says:

    Praying all goes to plan with Trach removal and Dermatology. It’s hard to believe that 4 weeks have passed already, Aria has come such a long way in those weeks. Blessings to you all, Judy.

  9. Yvonne RRN says:

    What a super duper US b/day pressie for Hamish with Aria getting the trach out & making another huge step fwd in her progress. A double whammy eh?
    Not surprised you held back a little as being prepared for it to be downsized, but then being told it could come out, would take a bit of ‘digesting’ & mental adjustment. Again Miss Aria is springing the surprises, the thing she does & has done so well.

  10. Raylene says:

    Wow! A great bit of progress. That girl of yours is just amazing.

  11. jen says:

    wow a month!!!

    praying re the Trach removal

    Hamish and my older sons birthdays must be close together hes gonna be 15 (oh my goodness!) on Monday

  12. Tiffany Keller says:

    Yay, on Aria being home for 4 weeks! That would be awesome for her to get the trach out! Too bad it’s on Hamish’s birthday, but go ahead a celebrate anyway! Sorry that you didn’t get to have lunch with Emerson & Erika. Hopefully you will soon. Have a great day. God Bless!

  13. Cork and Carol says:

    So happy to read more good news! Wow! Aria continues to amaze us all! May many more blessings come your way!

  14. iliganoa says:

    God bless you family in Jesus’ mighty name amen!!!!!!!!

  15. Dawn says:

    so so exciting, i’m stoked for you guys and for Aria it has definately being a long and trying process, but here you are at this stage of it in a good place, Aria’s going good guns and the whole future is ahead of you…

  16. Linda Crosbie says:

    Hi Anita and Hamish. Today I came across the lovely pink cards you made last year with Aria’s photo and the flower on the front and then the thanks and prayers you had on the back. At the end you had the following reading which really reminded me of the journey you have taken so far. Its from Jeremiah 29:11 – “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

    Oh how those plans are working out so well now and you are prospering each day with new milestones that Aria and you make along with your medical team. The last prayer you had on the card was for ‘The people we will meet in Omaha, that God may be preparing them too.’ They definitely rallied and still do for the MacDonald Family. Many blessings have been delivered and long may they continue to be delivered as you journey forward. XXXX

  17. joyce says:

    So happy that things are going good for you all.
    Good luck on the trach tube out.

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“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”- Jeremiah 29:11