Samuel has pneumonia.
We saw his pediatrician today (we were there for 2hours) and we got the pneumonia diagnosis. No rsv or influenza — thank goodness — but we are recommended to not take Samuel out so that he doesn’t get exposed to either as the probability of him ending up back in the hospital with rsv or influenza is extremely high. Samuel also lost one point on his hemoglobin so he’s now anemic. We are also making appointments to see a pediatric immunologist/infectious disease doctor. The plan is to really study his immune system since it’s so weak — he might need iv immunoglobins — so the risk of him getting sick is much too high.
We really really need his body to begin to absorb those nutrients. He eats and eats and eats. Yet, he’s losing weight. When he wakes up he points to his highchair — he’s hungry. We talked about having him receive nutrition via an iv — which would need a port — and right now because his immune system is so compromised the risk of infection from feeding him via iv is too great. However, if he doesn’t begin to gain weight, then that will probably be the outcome.
Slightly overwhelming.
Yet, I am relieved that we have some movement.
It’s good to have direction. Even if it’s hard, it’s good to have a path to move forward on.
Thanks for reading this blog of mine, especially now that it’s taken this momentary health crisis type bend. I am grateful for your kind comments, and want to tell you all that I am so appreciative reading your words. There are many nights where I’m awake at 3am with Samuel and I will pop on my phone and read an encouraging word or Bible verse from one of you. And so often, so so often, it is exactly the words I needed to read. When I have time, I will try to email you each and personally thank you. But for now, please accept this blanket thank you — and know that I truly mean it.
Anyways, thanks for sticking with me. I’m grateful.
Rachel
19 comments
I’m continuing to pray for you, Samuel, and really your whole family. Stay strong!
Hang in there… it is a tough road to travel when your child is sick. I will be here, continuing to pray for him and your family.
Lord, cradle this child in Your hands, the hands that made him. Allow Your healing to flow through out his body. Bring balance to his digestive tract so that he can absorb the nutrients he needs. Clear the pneumonia from his lungs and guard him from further illness. Heal your child. Comfort and strengthen his Mama’s heart. Be present and reveal Yourself in this situation. May You be gloried through the work You are doing here. Pour out Your power and mercy and strength. Be moved, oh, Lord. Come quickly. Amen.
Do they want to stay away from IV’s completely or just central lines like broviacs and port-a-caths?
I am just wondering if they can just give him a dose of vitamins in a regular IV to tie him over while you wait for the villi to heal.
I know it’s not complete nutrition but it could spare him the negative effects of the vitamin deficiencies without having to deal with TPN.
What is his hemoglobin number? Perhaps it isnt low enough for infusions of iron (Gavin was hospitalized for this last year) or I hate to say it–vitamin shots? There are shots for B12 and iron and probably others, those are just the ones I am familiar with.
Also, this is kind of an off the wall idea–but could he drink something like Neocate? When my son had malabsorbtion it helped him because the formula is already broken down and easiest to absorb. They have a special version specifically for malabsorbtion as caused by a number of GI disorders, including Celiac. Here is the link to their products:
http://www.neocate.com/aaa_neocate/259-products-reimbursement.html
And I have a verse for you–it’s my verse for the year:
“Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care. And even the very hairs of your head are all numbered. So don’t be afraid; you (& Samuel!) are worth more than many sparrows.” Matthew 10:29
I have another but I will send it next time. : )
Praying for you and thinking of you often!
(((Hugs)))
Know that the Lord is always with you, wrapping His loving arms around you and holding on tight!
Told Carol, the one who had the link about gluten free that you might be contacting her. She’s an amazing woman and I know she could be a great source of info if you need it.
Psalms 18:2-6 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. I will call upon the LORD, who is worthy to be praised: so shall I be saved from mine enemies. The sorrows of death compassed me, and the floods of ungodly men made me afraid. The sorrows of hell compassed me about: the snares of death prevented me. In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears.
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Awe, I am sorry about the pneumonia. I am continuing to pray for healing and for strength. God is with you, even in this place, where it sometimes seems dark and dreary. He is the source of your strength. He promises to take care of you. Just lean on His everlasting arms.
Continuing to pray for you.
I told your sweet daughter to give you a big hug for me 🙂
Hang in!
What a roller coaster ride you’re on. It must be so scary, but as you say it’s nice to know the way forward and to have help from the doctors. I’ll be thinking of you and your family.
praying for healing in every aspect in Samuel. and also for relief. you’ve been through such a trial. praying for God’s sovereign hand to comfort and bring peace that passes all understanding. also praying for the faithfulness of God to bring you hope… i’m reading Lamentations 3 – the speaker has endured such affliction but still proclaims the Lord’s faithfulness and thus has hope:
“But this I call to mind,
and therefore I have hope:
The steadfast love of the Lord never ceases;
his mercies never come to an end;
they are new mevery morning;
great is your faithfulness.
‘The Lord is my portion,’ says my soul,
‘therefore I will hope in him.’
The Lord is good to those who wait for him,
to the soul who seeks him.” Lam. 3:21-25
I have been praying for you and your son.
Aw Rachel I am so sad for you! I can just imagine how overwhelmed and stressed out you are feeling.
I am praying for you all.
Father God, thank you for creating Samuel! What a sweet boy and a real joy to his momma he is. Lord You know he is pretty sick right now, Father please reach out and touch his little body. Remove this phneumonia and make his digestion track heal up quickly. He needs nourishment, please feed him. Daddy, please comfort my sister Rachel. She is aching so bad inside, please let her know everything will be alright. Thank you Lord. You are so good and I praise Your Holy precious name!
In the name of Your son Jesus Christ amen.
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You are such a strong woman. I know you may not feel it at times and you may think you’ve reached a breaking point, but with each of your posts I see more of a resolve to successfully get through this with the best possible outcome for sweet Samuel. You will remain in my prayers.
Thank you for taking the time to keep us updating…I know it had to be difficult. I’m still praying for that sweet Samuel…so much for such a little person.
Praying for Samuel’s little body to heal. Hugs to you friend!
I am grateful you share with us. Thank you….be praying for your little man.
Continuing to pray with and for you all… just read this and prayed again. May our Lord’s love wrap your hearts and encourage your mind. Love you a lot.
Poor little guy…and poor Mama! Praying for you all!
We are continuing to pray for God’s healing touch on Samuel and for strength and grace for your whole family!
I am praying for you, Samuel, and your whole family. I was having a bad morning at work so I took a quick break and checked your blog, only to find that Samuel has pneumonia. All of the things that made my morning bad flew out the window. I realized just how precious life is and how so many people are dealing with bigger issues than the things I was this morning. I know you don’t know me at all, but I feel like I know you and your little guy. I have a 16 month old and can’t even imagine how hard this must be for you. I continue to keep you all in my thoughts and prayers. Know that there are so many people praying for you.
God does answer prayers.
I’m praying for all of you…it is so hard for moms to see their babies sick and hurting. Praying God grants Samuel good health and grants you the peace in knowing that no matter where you are and what you are doing, you are doing what He has called you to. And He will carry you through.