This week has been one big roller coaster ride from the postponed cath on Monday all the way through tonight when Ryan was in and still is in critical condition.
I arrived this afternoon to find several doctors by Ryan’s bedside; one doing an echo and the others milling about discussing. What were they discussing you ask? They were trying to figure out why Ryan’s ox sats dipped to a low of 28 in the night and remained hyper-volatile all day. They took every countermeasure they could think of to bring Ryan’s sats back up for good. He received tons of meds, 100% supplemental oxygen from the vent, nitric oxide, and an order for a blood transfusion (he had not received it before we left tonight).
The fellow called me this afternoon about an hour before I left home for the hospital to let me know that Ryan received an arterial line in the night (arterial lines are used to get meds into the blood stream faster than peripheral lines, i.e., IV, and they are usable longer). I knew he was due to get one so didn’t think much of it. She also mentioned he was put on nitric oxide because his sats were a bit unstable. She asked when I was coming in. Again, not much unusual in her questions or tone.
Just before arriving to the hospital, our social worker called to ask me if anyone had called me to let me know Ryan was getting an IJ line. I don’t what IJ stands for, but it is a line that goes into the neck (the jugular?) that gives access straight to the heart. I believe this is considered a central line and is used to get medication not only into the blood stream, but straight to the heart itself. A PICC line is preferable, but has to be inserted down in radiology and come to find out, Ryan was too critical to go anywhere. Therefore, the team felt it was better to go with the IJ line.
Still not quite understanding the situation, but wondering why in the world they would place a line in Ryan’s neck, I walked into Ryan’s room unsuspecting.
I quickly figured out that Ryan was pretty bad off when the doctors started explaining everything that was going on. I point blank asked the question if I should call Henry and if I should have someone pick up the girls (who were and are oblivious to the seriousness of the situation). The fellow and the nurse said yes to both. That is when I got nervous. Their reasoning was that Ryan’s sats were extremely volatile and he could ‘go either way fast.’ I’ve learned that when they say that they are trying to tell me my son may die or may get better and they have no way of telling me at that moment. It’s the same terminology they used when he had his emergency cath in April.
So I called Henry and he came right away. By the time he got there Ryan’s sats had leveled out. They continued to be stable throughout the evening, but this was on a lot of support. Once the patient is stable on a ton of support, the team gradually weans the support to see the least amount the patient will tolerate. There are risks involved in having the support…one being the force of 100% oxygen from the vent. It can damage the tissue in the lungs so we especially don’t want that to happen with Ryan.
I just spoke to his nurse and Ryan is weaned to 60% oxygen and may go as low as 50% before the night is over, but they will not try to go any lower than that. He just finished getting his transfusion. He remains on the heavy meds (to keep him from fighting the vent resulting in desatting) and nitric oxide.
The cause of the desats are unknown. There are three things the team initially looks at:
1) Infection
2) Shunt
3) Tissue Expanders
Infection could make Ryan’s body work harder and therefore require increased oxygen. Ryan has absolutely no reserve and therefore cannot meet the increased demand.
Ryan’s shunt is definitely too small for his body. The question becomes – will his shunt get him through the next three weeks. There are certain things the team can do to manipulate factors to help Ryan get the oxygen he needs. What they will watch through the next 20 days is how much support he needs and how responsive he is to the support.
The tissue expanders may be constricting Ryan’s breathing. We don’t have an answer on this and may not. The reality is we need the expanders to stretch Ryan’s skin. One of the advantages of Ryan being on the ventilator is that we can be more aggressive in filling the expanders. I spoke with plastics Wednesday night, and Dr. B said we can fill Ryan three times a week at 10 ccs each time instead of twice a week. We hope by using this plan, we can get Ryan enough skin faster in case his surgery in moved up. He definitely does not have enough skin right now.
The moral of the story is that Ryan is fragile and complex. There is no easy answer for the coming weeks. We are in uncharted territory. Incidentally, 20/20 showed the story tonight of Chris Wall, a 33 year old who is the oldest living person with ectopic cordis. The biggest factor in Chris’s success is the fact that he doesn’t have any heart disease. He simply has the structural defect. The doctors told us all along that Ryan’s prognosis would be based on if he had a heart defect or not. We all know he has multiple heart defects.
So for now, I’m going to bed and resting in the fact that my baby is resting too. The next three weeks will be rough so strap on your seat belts, we’re on this ride together.
p.s. When I told Natalie that daddy was coming to the hospital and Mr. G was coming to get her and Ainsley because Ryan is very sick she looked over at Ryan and said, “Ah, the poor little guy.” And then smiled really big about going to spend the night at her friend’s house.
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(c) 2016 Leighann Marquiss
Comments (21)
We are praying for you guys!!!
Hugs and prayers from Austin, Texas. I have been following your blog for about 2 months now, and am always amazed at your faith and love for your family. I wish you much peace, and rest this evening, and for the days to come…
Shane, mommy of twin boys
Praying for Ryan and for you and Henry as you attempt to get some rest. Thankful that Bridget put it through the prayer chain so fast…talked to several people this afternoon who were all praying for his sat numbers.
My mommy heart is crying for you. Something I read in your blog in the past week made me realize just how fragile Ryan is. It’s been so easy to think that he’ll be just fine once he gets his surgery and easy to forget all that is at stake in order to get him there first.
I will leave you with this. God created Ryan’s body. He knows it intimately. Not one part of it is unknown or a mystery. God created Ryan for His good purpose and wherever that purpose takes Him, God will get you through it. Just when you think you can’t possibly take anymore He will blanket you with that peace that surpasses all understanding.
http://www.tangle.com/view_video?viewkey=584cfcaf08fd7c751a05
(^Not spam, I promise^)
In His Love,
~ Melodie
lifting you up before our Father, who knows your every concern, even if it is just groaning. know that we are “carrying your mat” when you are too tired to do so for yourself.
one day at a time, and each day, i’ll be praying for you, your family, and especially for ryan.
Ugghh (my groanings for you)! Praying for Ryan to stabilize….for peace, rest, and continued endurance for you and Henry….and boring antique car rides (instead of the CICU roller coaster rides)! Thanks for taking the time to update!
Sara
Praying praying.
Leighann,
I am praying for your little guy everyday. I hope today brings better news…..I have a friend, Melanie who checks your blog also and prays for Ryan too. Lori Musacchio
Constant prayer!
Sending prayers your way. I know this is such an emotional and scary ride you are on.
We are here if you need us.
Terri
We’re praying for you.
Just stopping by to show some love and support.
You are in our prayers!
We’re cotinuing to keep baby Ryan in our prayers. Praying for your strength as well as Henry’s. God bless you all!
Praying for you guys! I’ll call Bridg’ to see if she wants some reinforcements.
But do please rest in just how many of us are praying for Ryan and You & Henry and the Hobbits. Those of who know you and those that “know” you. 🙂
Two verses for you both & Ryan…
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with My Righteous right hand. Is 41:19
Love the word picture of Him holding my up with His RIGHTEOUS right hand.
and…
“God is our refuge and strength, an ever present help in trouble. Therefore we will not fear, thought earth give way and the mountains tumble into the heart of the sea.” Ps 46:1-2
Praying for Ryan and for each of you.
Hold tightly to the Lord. He is always with you and will never leave you.
Love, Linda @ Truthful Tidbits
Many prayers for your sweet baby. And the rest of the family.
Prayers all around – specifically for wisdom, courage, discernment and perseverance for the docs – and very gentle hands. For you and Henry – a spirit of peace as the Lord holds you so very, very close.
my heart, my spirit, my everything cries out to our God for you and Henry tonight as I erad your words. Last night as you were posting I was sitting on my couch telling my husband about the ups and downs of your week from all I had read and I was crying…. little did I know what you were spilling out in words at that moment. So I take this Leighann and go right back to my knees for you and for Henry and for the girls and for RYAN! Sweet Ryan, he is a fighter and a little warrior and I pray that he will grow up to tell you stories about the hands that he felt holding him during these longs days of intubation and sedations and procedures… that he will be able to tell you of the miracles that he felt happening within him.
I pray you get much rest tonight and feel the peace that passes all understanding. Love and hugs!
aww I’m sorry… I didn’t know he had slipped down last night.
I’m praying for you guys. If ya need help just call— I’m not doing anything this week!!!
Praying for baby Ryan!!!
Do you feel like his pain is under control? Sophia didn’t really ACT like she was in pain but it caused her not to breathe deeply, and her sats would start to fall. Of course she was never as sick as Ryan, just wondering if it’s something they had considered.
Either way, sending lots of prayers to sweet baby boy and you too, mama.