What Happened on Sunday?
First of all, I would like to thank all of Samson’s loyal followers. I have been telling him about the huge fan club he has and he is very appreciative! And since I know you’re all dying to know, here’s what’s been going on since my last post. I hope you will find this one a bit easier to read…it certainly was easier for me to write.
Over the weekend, we had been following Samson’s blood gas analysis (the thing that tells us how much oxygen he is getting in his blood). We were getting report’s every four hours and were hanging on to those to numbers for dear life! The doctor’s like for them to be above 100 and we knew that if he had several “bad” results in a row, that we were headed to Riley.
Sunday afternoon, his numbers starting dropping below 100…then he had three really low (45-50) test results in a row. The neonatologist on call that night felt that he needed to be transferred to Riley then, before he got any worse. They didn’t want him to get into a “critical” place and have to be transferred under such dire circumstances. If he did not start improving, he would need ECMO and they wanted him to be in a place where he could receive that if necessary.
Cut to me totally loosing it upon hearing this news. First of all, we had been given several worst case scenarios and this one was by far the worst of the worst. Only REALLY sick babies go to Riley and our baby was headed there. The fear was practically paralyzing. I am so grateful my mom was there with me because I would have been alone if not. Definitely one of those times that will be forever embedded in my heart and mind.
They called ahead to Riley and prepared a transport team to come and get our baby. I was unable to fight back the emotion as I was signing all the consent forms. One of my favorite NICU nurses came over and put her arm around me and said, “Why don’t you go give him a little kiss on the head…”. I’m sure she knew how much this would mean to me as up until this point, I had not even been able to touch him (except for a moment right after delivery). I went into his room and leaned in to kiss his sweet head. I closed my eyes and took a deep breath in. I can still recall his sweet baby smell now as I write this. I walked out of the room with tears streaming down my face. His nurse hugged me and told me she had a good feeling about him. No amount of reassurance could have comforted me.
My mom and I drove to pick up David and then to the hospital. When we got there, we were directed to a family waiting area and told that once he was there and settled in, the doctor would come out and speak with us. I didn’t like this. We had never been denied access to his room at Clarian North. We waited for what seemed like an eternity. We weren’t even sure if he was there or if he was ok.
The family waiting area was dirty, cold and unaccomodating. I immediately formed my opinion of the place and it was not a good one. For those of you who were following, you’ll remember my status update reading “I DO NOT LIKE THIS PLACE….AT ALL!”. No cell service, no private rooms, no snack station or even a vending machine in sight? I just couldn’t believe it had come to this.
FINALLY, after maybe a couple of hours, one of the nurses came out to speak with us. I don’t even remember what she said, except that we could go in and see him now. The room was bright, loud and filled with doctors, nurses, residents, interns, respiratory therapists, nurse practioners, oh and 5 or 6 other sick babies. A far cry from his dimly lit private suite at Clarian.
We spoke with the doctor who explained that they had discovered that his left lung had collapsed and that was the reason for the low gases. After only a few hours at Riley, they were able to inflate his lung and get his numbers back up above 100! David stayed at the hospital and my mom took me home so that I could sleep on an actual bed. Already, my attitude had changed. I left Riley feeling reassured and confident that he was where he needed to be (even though the accomodations were somewhat lacking). Funny how the thing that I feared the most, ended up being exactly what he needed.
We received updates every four hours that night and on into the next day. I remember getting a text from David at 4:00 am that his latest blood gas was 298! I freaked out….couldn’t believe it…how was it even possible to go from 50 to 300 in such a short time? His scores continued to be in this range the whole next day. The doctors said they were “happy, yet, cautious”. That he was doing well, but was still on a very high level of support.
I believe it was the next morning at rounds that they started discussing weaning him off the oscillator. I was nervous about this, because they had been so conservative at Clarian and I didn’t want them to rush into anything for fear that he might have a relapse. But, the doctors felt he was ready, so they began to slowly lower the amount of oxygen they were giving him. They were giving him 100% oxygen, the air we breath is around 21%. They have been weaning him at a rate of about 2% every hour and he is now at about 36-38%. In addition to the oxygen, they have also begun to wean him off of the nitric oxide, the blood pressure medicine, the sedation and the antibiotics he is on. He is responding very well to all these changes!
Today or tomorrow they will likely be switching him over from the oscillator, to a conventional ventilator. The main difference, as I understand it, is that the oscillator pushes the air in and draws it back out…essentially doing all of the work for him. This was necessary in the beginning to allow his lungs to totally rest and heal. The machine is also loud and causes his chest to shake & vibrate rapidly. The ventilator will assist his natural breathing pattern and allow him to do more or most of the work himself. In addition, the tubes and cables are longer and more flexible than the oscillator, allowing us the opportunity to hold him!
The plan is to continue to wean him off the ventilator to a cpap. Cpap stands for continous positive air pressure. It’s primary funtion is the same as the ventilator, to pump pressurized air into the lungs, however, it does so without the need for intubation (the tube down the throat). After that, they may need to use a nasal cannula (clear tubes in the nostrils) if just a bit of oxygen & pressure is needed. I am becoming quite an expert on things I wish I never had to know anything about.
The doctor told me today that they may also begin to give him a little breast milk through his feeding tube. Up until now, he has been fed intravenously, getting sugar water and tpn (total parenteral nutrition), which includes, salts, glucose, amino acids, lipids and added vitamins, thru his feeding tube.
As many of you have seen, he is beginning to wake up, look and move around quite a bit. It is so encouraging to see this. At the same time, I worry about him being uncomfortable. He squirms around and looks as though he is trying to cry, but, because of the tube, his vocal cords are disabled. We have learned that he loves to have his hand held…any time he starts to fuss, I just hold his little hand and he settles down right away.
Overall, we are very hopeful. The doctors are now saying that the best case scenario would be for him to be here for two weeks, worse case 4-5 weeks. Much of it will depend on Samson and how he responds to the weaning…he will set the pace. Also, once he is off the ventilator, they will start to introduce oral feedings. Some babies who have been intubated have trouble with this and require a prolonged stay in the NICU to be sure they have it mastered before heading home. I’m sure we will be asking for more prayer support when we get to this stage…one day at time for now though.
We love you all and appreciate the outpouring of love you have shown. Especially those of you who continue to follow his story on bated breath! BTW - I was curious exactly what “bated breath” meant so I looked up the definition for the term and thought it was worth sharing: bated breath refers to a state in which you almost stop breathing as a result of some strong emotion, such as terror or awe. Perfectly describes how we are feeling waiting for our little guy to come home!
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Hi Brandy, this is the first time I’ve seen your blog. Samson’s story is heart wrenching, and you write it very well. It’s great to see his little eyes open! I wish you and David and your family all the best, and will continue to pray for you all.
Wow! Sounds like so much to take in, and you DO sound like such an expert. This post definitely had a much more upbeat feel, which is so promising. Little Samson seems like such a fighter (and such a handsome little man
I’m praying that every day gets brighter for you all (and I’ll be waiting on a post tomorrow after you’ve held him!
Oh my goodness Brandy- I could hardly get through the paragraph about you signing the papers and kissing his sweet head… You have been through so much and I am so glad that the journey is getting better each day!!
I have been checking Facebook a hundred times a day looking for Samson updates and checking on you. I am a proud member of Team Samson… my heart has been so tied to yours during this journey… I have been waiting with “baited breath” to say the least!
I cannot wait to read a post about you finally holding him in your arms… what a moment that will be. I love you and will continue to pray for all of you and especially Sweet Samson. Keep fighting baby boy- you are so strong and doing so well! XO THANK YOU for all of the updates and the beautiful images… I love you!
tears reading this Brandy…I love that you are so detailed in your writing, and am so looking forward to seeing him progress to the point of you being able to hold, breast feed and take him home! It is so wonderful to see the Lord continue to help him grow stronger and answer our prayers.
Brandy, it’s amazing what can happen in such a short time. I was definitely reading this with bated breath, and could finally exhale as I got to the end. It was hard to read because I knew exactly what you were talking about when you described all the things Samson’s been through. I know it’s been a long, scary road for all of you, but I’m so glad to hear that he is responding well to treatment and you can finally hold his little hand! My heart is with you at all times.
Love,
Sandi
Samson is a fighter. And you are incredibly brave. My prayers and thoughts are with you. Thank you for the updates.
Brandy! It was SO good to hear an update! I have been praying for you like crazy since I talked to you the other day. I could tell whatever was going on it wasn’t good. So happy to hear things are progressing so quickly.
Please call if you need anything!!! I’d be happy to watch your kiddos, make a meal or whatever you need. xoxo 
tears are rolling…..wish i could be there. i’m so thankful to hear the positive progress and the fighter that samson is. i love you. he’s SOO stinkin’ cute too!
Brandy,
Haven’t been on facebook in awhile and have been out of the country so I had no idea what was going on…Just saw your update and spent the last 1/2 reading your blog. Wow. Can’t believe all that you all and precious Samson have been through. Will definitely be praying for your family. So grateful to hear that things are looking up now!!
I found you through a search for baby samson - we own babysamson.com, a site about our son and the heart condition he was born with. I’m always curious if there are other Samsons out there - not the most common name!
Anyway, our Samson had a planned open heart surgery at 4 days old, so we’re familiar with a lot of the things you’re experiencing right now. (He was diagnosed with a severe heart defect at 20 weeks in-utero.)
Your family is beautiful - I will definitely be thinking about you - hoping things calm down and that you get to enjoy your little boy completely (home, no tubes or wires) soon enough.
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