13 Comments

Day 2- Stable

News first- he has been stable. He has not needed ECMO as of this evening which is good, almost going to be 48 hours and he has been stable. So ECMO talks are going down. If he can hold his own that thought can be dropped.

Some of my posts might get too much in detail, so I will try and give an overall picture first and then details at the bottom, so people can skip it if it gets too technical.Β  Also in other news, I will be doing a post with his birth story soon when I find a minute, but I realized I never gave his birth info- he weighed 7 pounds 3 ounces and was 21 inches long at birth.

Morning started with as usual pumping every 2 hours. After the 3am pump we went to the NICU and was glad to find him behaving and stable. He is still on very high blood pressure medication and nitric oxide. His vent settings have been brought down and he has been able to maintain decent blood gases and saturation levels. We then got back to the room, got some more sleep and went down for the rounds at around 9am.

My goal is eventually to write a very detailed blog post with all his numbers, but time right now does not permit. So I am going to just do an overall update and when I find some more time as he gets stable, I will do detail posts with all the blood gas, saturation and other numbers.

Sorry this post sounds so rambling- I got discharged today and I did not feel too bad, I felt like I was leaving him under the best care possible and came home with the hope that each passing day will get better. I am scared to get too comfortable as I know enough that these CDH babies love a roller coaster.

He has been stable the whole day, responding positively to their treatment. He is still on the oscillating vent, but the vent settings have come down which is a step in the right direction. He has an echo of his heart and it showed some issues in the heart as it is finding it a little hard to pump blood and so they have started him on another medication for that. They also gave him additional blood which has helped his pressure. He also had an head ultrasound and that looked fine. So hoping tomorrow that his echo will show some improvement with his heart. In other news, we also got peeeeeeeee. He needs a catheter as he is too sedated to pee himself, but his kidneys look good.

Overall a better and stable day. We also briefly saw him open his eyes and wave his hand πŸ™‚ when he was going in and out of sedation.Having Avy with us is what is keeping sanity for Ajit and me. He is our rock till our other rock star is ready to come home. We were also able to take the grandparents and show their grandson to them. Now I am tired and hoping to get some cuddly sleep with Avy. Will update tomorrow night. Keep those prayers and positive vibes coming.

All intubated and sedated with the goofy from big brother…

 

 

 

 

 

 

 

First family pic…

 

 

 

 

 

 

 

 

Peace…

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13 comments on “Day 2- Stable

  1. Good news Anu πŸ™‚ Dont worry he’ll get better each day. Lots of good luck to all of you. We’ll wait for your next post.

  2. Yeah buddy! You can do this!! Thinking of you guys always…

  3. So glad little man is stable πŸ™‚ And glad you have Avy with you. Toddlers are the best therapy.

  4. very glad to know that your little rockstar is stable and showing improvement.. our prayers will not go in vain. don’t worry. take care of health. keep your morale high.
    will wait for the next post

  5. Great to hear that. God bless you guys.

  6. Glad to hear this. We all pray for you guys.

  7. Yea for no ECMO! Praying he continues to improve & will soon be where it won’t even be discussed. Keep fighting little warrior!!

    These first days are very chaotic. It’s sounds like you are doing a great job of juggling everything. Try to get as much rest as you can so you can be strong for him. This is a marathon so take it one day, one hour, one minute at a time if need be & you’ll get there!

    Prayers from Oregon
    Shelly Moore
    Oregon CHERUBS Co-Rep
    http://www.savethecherubs.org

  8. Great news da…well done kutty payya…always in my prayers…waiting to see smiling kutty’s snap….take care kanna..

  9. It is wonderful that so far he is stable and no ECMO. Even if he does need it later the fact that he had this period is a good thing! I am local in Charlottesville and very familiar with UVA, if you need anything – please feel free to contact me! Do not hesitate, I am about 15 minutes away from the hospital and will be happy to help in any way! elizabeth@breathofhopeinc.com

    Keeping your amazing boy and family in my thoughts, prayers and Lung Function Chants!
    Elizabeth

  10. So glad to hear that! Keeping fingers and toes crossed little Amik will get stronger and stronger.

    Hugs to you! Hope you got some sleep last night. Thinking of you all the time..

  11. sunshine for both avy and athiksh

  12. Anu,

    Very happy to hear about the progress and praying to hear more such news from you. Avy is truly a sweetheart…
    Lots of love to the family of rockstars!!

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