Update (my new most hated word)

So here is where we are as of now. Ethan is having lots of trouble with his left lung. This is the lung that has been giving us trouble all along. He has pseudomonas pneumonia (and one other bacteria) they have stopped the clindamycin and started tobramycin in its place. They are still doing merrem as well.

They were concerned about his adrenal function on Sunday. His cortisol level was lower than it should be with how sick he is. They did a cortisol stimulating test which showed his adrenal function is ok, but just wasn’t able to keep up with how sick he is.

They were going to attempt to turn ethan from supine to prone every 8 hours, in order to help break up secretions within his lungs. With that they are doing sodium bicarbonate lavages down his endotracheal tube to help clear the secretions. Ethan has had trouble with the turning and lavages so they are holding off on the every 8 hours turns, but continuing on with the lavages.

Ethan has been having a rough night so far. He is having trouble with his oxygen saturation. He has been requiring anywhere from 50% to 100% FiO2 depending on his needs. The past 45 minutes (it is 1217 as I am writing this) have been rough on him. His oxygen saturations have been lower, and his Ppeak have been high (basically the pressure it requires to give him a breath, if I am wrong on this all my nursing buddies can correct me). The respiratory therapist gave him his chest physiotherapy and lavaged his lungs which helped initially, but now he is requiring 70% FiO2.

The resident has ordered for Ethan to get a chest Xray as I am typing this to see what his left lung looks like, to see if there is another pleural effusion. This will hopefully give them a better idea of what is going on.

These past few days have been increasingly hard on us. I am tired but can’t sleep at times. It is hard to feel that Ethan is getting worse when he should be getting better. It is hard to see him so sick for so long. He has been sedated now for over 3 weeks and paralyzed a vast majority of that. As time goes on we get sadder. We are trusting in the Lord to bring Ethan out of this, but this is getting harder and harder. Please continue to lift us up. It hurts so much seeing Ethan ebb and flow through this sickness. We want so badly to get him babbling to us again.

It seems like an eternity ago that we were loosing sleep because Ethan was keeping us awake at night, or waking up early. It feels like forever since I have gone to the kitchen exhausted trying to clean Ethan’s bottles. I mix his formula up and shake it hours ahead of time so he won’t get gas from the bubbles. I miss those days. I miss being tired because I am feeding my son at 5 in the morning, or 11 at night. I miss hearing him spit his baby food all over his high chair.

All these things that I never thought a parent would miss I do. I have learned that it is the small things that you love, and miss when you don’t get to do them anymore. It is the small things that hurt. Its amazing how much I WANT to get to change a poopy diaper, and jokingly say “DAAANG Ethan thats rough” all the while he is smiling and babbling to me.

If there is anything you take away from this I just want you to spend time with your babies. Enjoy the sleepless nights, and hug and kiss them goodnight every night. 😀

Lord God,

Time is hard, and life has been tough. We feel as if we are walking through the valley with the shadow on our backs breathing hard. We know you are sovereign and in control. We know you hold our baby in your hands. Please strengthen us to have faith in you. Let me depend more on you. No matter the future I know you are in control and have the deepest love for our son.

Thank you so much God!

Please pray that Ethan begins to heal. It feels like so long since he was having more good days than bad. Pray that we make progress soon. Pray healing over his lungs from the pneumonia that he has. Pray for healing over his body!

Pray for our strength, not necessarily my strength physically, but my strength to trust God. It is hard to see all of this and not wonder where God is going. Pray that I don’t look for where it goes, but rather trust God to guide my every footstep.

Also pray for Natalie’s health. she has been feeling crummy.

 

By: Ryan aka Ethan’s Daddy

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7 thoughts on “Update (my new most hated word)

  1. Your story has touched me in a way I can’t even begin to describe. I don’t know you, but am truely amazed by the amount of love, strength, and courage I see in you and your wife. Ethan is going to turn out to be one amazing little boy because he has two amazing parents. As a mother myself, it always breaks my heart to hear of any parents going through these kind of hard times with their babies. God could not have picke better parents to raise and love this beautiful child who I see as nothing short of a miracle. Whatever obstacles he may have to overcomei believe he will do so and in a way that will blow everyone away. Hang in there…there has to be hard times to truely appreciate the good ones. My thoughts and prayers are with you all and you are all amazing parents.

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