Sunday, July 12, 2009

Praying for a miracle

I don't know any other way than to just say it. Our littlest guy is not okay. . . Samuel needs prayers. His lungs are worse than we thought, and our medical options are extremely limited. What we have is hope, faith, prayers for a miracle, and a wonderful medical team that loves Samuel.

Our baby is very sick. I will go into more detail - but Samuel has been intubated, medically paralyzed, and heavily sedated since Friday night to get, and keep him stable. Our hearts are breaking.

Here is the long version... as we understand it so far...

After a successful tracheostomy, Samuel was breathing easier and looking fantastic! He loves to read books and make lots of eye contact with visitors, so the trache was great because it allowed him more freedom. But, routine tests were continuing to puzzle us... for example the CO2 level in his body was going up and up and eventually off the charts. There was talk of reintubating him - back on the ventilator again was hard to swallow. Prior to making that type of decision, pulmonology and our attending neonatologist consulted and decided to get a CT scan. They don't routinely do CT scans on BPD babies... they even told us going into the scan not to expect much out of it, but they wanted to cover all bases, even those not routinely used.

What the scan showed was devastating. It was also completely unexpected... from what we understand, most BPD babies don't have these results. But, it does explain his pattern of crashing. The team actually went over the scan numerous times to be sure of what they were seeing. Everyone was amazed that Samuel has done as well as he has with what is going on inside his body. Samuel has very little "good lung"... large portions have cysts and signs of pulmonary fibrosis, which are like scars where the lungs have been damaged from the very thing keeping him alive - the ventilator and high levels of oxygen. These bad portions are so large and numerous, that they cannot be removed. In addition, the parts that are good, aren't great.

Here's the easiest way I have found to describe the scars, and then treatment plan... normal, good, lungs are filled with air sacs that look like spider webs. This is where the O2 and CO2 exchange happens. Instead of the webbing, Samuel's lung have big cysts which create 'flat' surfaces. Therefore, when the oxygen comes into the lungs, instead of being processed through the air sacs (spider webs), it takes the path of least resistance, which is to pass through the flat, scarred surfaces. When this happens, there is no O2/CO2 exchange. This is where we get into serious trouble.

Therefore, it was determined that the best treatment plan would be to go back on the JET ventilator, which delivers literally hundreds of little breaths every minute. Instead of big puffs of air, the little breaths would be forced to go though the air sacs and get the O2/CO2 exchange. Plus, this allows the scarred areas to collapse, with the hope that with time the good air sacs will grow and multiply. Because he is such an old baby (bigger and stronger than most in the NNICU), he would have to be paralyzed in order to get him to relax and not fight the JET. With the paralysis comes heavy sedation, so that he won't know he's paralyzed and be scared and uncomfortable.

DB was already at the hospital visiting when all of this was determined. I was called immediately. Omi and aunt Nancy were on their way to the house to watch Olivia and George. Because things were looking so grim, the plan was for me to be able to hold him for one hour... just in case. We made eye contact, he heard my voice, and I held him for 5 minutes. It was truly amazing that they had put the plan in place. He started crashing... and as DB and I held his blue little hands the team bagged him and kept him breathing. Just then the JET ventilator arrived - it had been ordered from another hospital in another state (all at our hospital were already in use) - and the RT's were furiously preparing it for our guy. The paralytic and morphine were already on hand, in addition to other drugs that I can't spell - in they went. And out he went... into medically induced paralysis. He was hooked up to the JET, and we hoped for the best.

It was the worst night of our lives. But 24 hours later, he was considered stable... with the understanding that one bad event, and we could lose him. Tonight, we are still in the same place. The medical team has worked for the last two days to find the perfect JET settings, and tonight he seems comfortable. His O2/CO2 exchange seems okay... his heart rate seems okay... and he looks relatively rosy, just like a little baby should. We celebrate that!

We celebrate, but in the same breath we are terrified, and sad, and hopeful, and praying for a miracle. We find out more tomorrow, but it seems that we may only have two options... to work towards a possible lung transplant or for a miracle. We're not even sure if he is a candidate yet for the transplant... but short of a miraculous healing of Samuel's air sacs, it may be our only option.

Tonight we were asked to be thinking about what we would want if Samuel crashes... Four days ago he was on the verge of smiling and we could hold him in our arms. We are in shock. We are asking for your prayers... for our entire family of 5.


Rikki said...

Praying for Samuel. Stay strong little man.

The Mommy said...

Prayers pouring into heaven for little Samuel. Our God is mighty! He can do far beyond what we can even imagine! Praying for a miracle!

Deb said...

Dear Byrne Family,
While I don't know you, I happened upon your blog and wanted to tell you that miracles DO happen!
Our daughter received a double lung transplant four years ago, and is now living life to the fullest.
We will be praying that God gives you your miracle for Samuel soon. May you feel God's arms wrapped around you holding you during this time of uncertainty.
Please feel free to check out our journey through transplant and email us at the address listed on our site if we can be of any help to your during this process.
Believing in HIM,
Debra Gabehart

WarriorLauryn said...

On my face for your family this morning! I KNOW the Lord is with you, and with your precious Samuel. Praying you are renewed this day, and for a complete healing!

"The Lord is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.
Even youth grow tired and weary, and young men stumble and fall; but those who hope in the Lord will RENEW their strength.
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
-Isaiah 40:28-31

Kimberley said...

I will be praying hard for both you and your little man.

Chris and Amanda Donovan said...

I'll be praying and thinking of you all.

Lindsey said...

dave and bethany, i am so sorry this is happening to samuel and to your family. i have already been praying for you and will continue to do so. we love you guys and have faith that God's grace will sustain you and give you the wisdom you need as you face the days and decisions ahead.

Donna said...

Your baby boy is just adorable. I don't know you- but came accross your blog from Lindsey Salter's. I am praying for healing for your angel- God is the great Physician. God bless your beautiful, beautiful family and that precious baby boy. You have mighty prayer warriors fighting with you!

April Brown said...

I found you by way of Lindsey Salter. I'm so sorry for the devastating news you've received about your precious Samuel. Please know that my husband and I will be praying for your miracle!!

midlfork97 said...

Just wanted you all to know I am thinking about you and baby Samuel. Hang in there and let the love from all of those around you comfort you during these tough times.
love, Jessica Williams (Vicki's niece)

Vicki said...

there are no words...hold on to each other, know you are loved, never alone, and God is in charge.