Samson update
Thought I’d write a quick update since so many of you are asking about Samson. I haven’t been updating regularly because nothing has really changed. He is still stable and doing well….just not well enough to come home yet.
He is off the ventilator and on the nasal cannula at 30% oxygen (21% is room air/what we breath). They took out his central line (an iv/catheter that is inserted into a main vein and advanced till it reaches the heart, delivering fluids & medications in a more direct way) and have been giving him his pain/sedation meds orally. They are in the process of weaning him off of these drugs, but, they have to do it in small increments. If they go too fast, they run the risk of causing him to withdraw.
Everyone keeps asking, “When is he coming home?”. Believe me, I wish I knew. No one is more anxious for that to happen than I am. Unfortunately, they cannot tell us exactly when. The main thing that is keeping him there now is a condition called Tachypnea, which basically means fast breathing rate. His respiratory rate is high, around 80-90 and sometimes up over 100 breaths per minute. Normal for a newborn is about 40 breaths per minute.
This is normal for a baby with his history and they expect it to resolve itself eventually. Actually, we had hoped it would have resolved by now. Until his respiratory rate is below 70, he will not be able to breast or bottle feed. The doctors are worried that he would aspirate or choke on the milk. It would be like us running a marathon and then trying to drink a gallon of water. Until he is eating and gaining weight, they really don’t want him going home. Although, today, the doctor mentioned sending him home with the NG or nasogastric tube for feedings. Don’t really want to go this route…but, will if we have to.
We are thinking about transferring back to Clarian North. We have been very pleased with our experience at Riley, but the kids have not been able to visit and they are having a hard time. You can imagine how difficult this has been for them. They just don’t understand. What’s wrong with him, where he is and why they can’t hold him, etc… I think it would do them a world of good to be able to see him and that could happen regularly at North.
Wish I could tell you more, wish I had a specific date. It is hard to live with the unknown. Hard to have so little control. We are being tested in every way imaginable right now. We need your continued support in the form of prayers, visitors, help with the kids, etc…nothing you have to offer would be refused. Thank you for everything you have done and continue to do. We love you all.
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Brandy-
Thank you for the update! I know that the uncertainty and waiting must be unbearable- I think about you all so very often!! We will continue to pray for all of you- Samson is #1 on our prayer list! We love you so much! And by the way… He is ADORABLE– such sweet photos of him. Love to see his little face!!
XO- J
Hey Brandy,
It’s nice to see photos of your beautiful little man. I imagine this state of limbo is so very difficult for you (and especially for Mary and William). I can’t imagine the questions you’ve had to answer lately, but thank you for explaining things in a way that’s easy to understand. You evoke great sympathy, and I’m constantly thinking about all of you. Take care…
Brandy-
I love seeing the pictures of the little guy, reminds me of when my two were in the NICU. I think of you and your family often, I hope your taking care of yourself!!
Take Care-
Allie
Brandy,
I have been following your blog for sometime, as you inspire me to follow my passion of photography. I didn’t realize until today all that has been going on with your family. Your story and pictures of handsome lil’ Samson are all reminders to be grateful for what we have and to take nothing for granted. I will pray that God gives Samson, you and the rest of your family, the strength to raise above all of this.
Prayers be with you,
April
p.s. I know you do not know me, but I am here locally in Indy and would help out with anything you or your family may need…honestly. :o)
Hello I see your last post was in June and I would really like to know the outcome. I PRAY ALL IS WELL with your son. Please let me know when you can. My bestfriend just had a baby boy Sept 7, 2009 and story is very similar. My heart hurts for her and just been googleing to see if anyone else has any answers. Bascially all his test are coming out normal her story is pretty much like your his numbers stay between 80-120 and they are trying to figure out why. If you have any answers please email me at natalken12@yahoo.com. I would really like to know how long your son stayed in the hospital and if they ever found out the cause and if he had any affects from it. Again I pray that all is well with him.
Thanks for sharing
hope your baby gets well soon..
i”ll be praying..
I can’t even imagine how hard this must be! Tons of thoughts and prayers for you and your family!