We woke Stephen up around 5:45 to walk over to the hospital. He was clinging to his Mike Trout doll and cuddled up with his new star wars blanket. On the way over he cracked a smile as he woke up and he remained joyful the ENTIRE day. Honestly, his emotional response to all of this was WAY better than I had anticipated. Sure, we talked things through, but I did not expect him to be giggling as we laid him on the procedure table. I fully excepted him to show some signs of nerves, etc. But he was SO peaceful...and let's be real...that's ALL God! He was incredible! So smiley, so brave and so strong!As we checked in the nurse noticed his doll and gave him his own special wrist band (that only fit around his neck)
and Stephen thought that was pretty cool!
He was all smiles getting his vitals taken, and even when they were ready for us to walk to the cath lab, he preferred to be wheeled in the bed rather than walk in Joe's arms...again...so surprising! But so BRAVE! Both Joe and I were able to be there as they put him to sleep with gas. He held my hand and we talked about his pets, Angels baseball and his favorite players. He went down easy, and they let me kiss him goodbye. Walking out of the room is SO hard...but so is seeing him lying on that table.
The cath labs goal was make sure he can tolerate the Fontan surgery. They had to go in through an artery and vein in his groin as well as a vein in his neck. During the procedure they thread a catheter into various parts including his pulmonary artery, atrium and ventricle to collect data on pressures etc. If there is no work to be done, they get all of the readings they need and it is over. As it turned out, Stephen had quite a bit of work to be done. This was a toughie for me. After the entire procedure was over, and we met with the doctor, I was thrilled that he did not go into heart bock...but felt so deflated on the news she gave. So, here is my attempt to sum in up...
First, his glenn shunt had narrowed and needed to be ballooned. This may explain some of the pain he has lately felt in that area. Next, they found quite a bit of collaterals (extra blood vessels) that needed to be coiled (plugged up). While this is VERY common in single ventricle patients, they pose a problem for his upcoming surgery...the part I really didn't want to hear! It turns out he also developed Pulmonary AVMs. The good news is that they should reverse themselves after the next surgery. The bad news, they cause lower saturations already, so they could not coil all of his collaterals now or else he could potentially be too blue.
What does this mean for the next surgery? While they don't know for sure, uncoiled collaterals often cause excess drainage which means he will mostly likely have a longer hospital stay. He also may need to go back into the cath lab during his recovery to have them coiled (and maybe even right before the surgery). This will all be discussed with the surgeon before hand to see what he thinks needs to be done. The AVMs may also cause his oxygen to be lowered, so rather than coming out of the next surgery in the 90s...she prepared us that he may come out much lower, maybe even in the in the 70s, and could potetnially need to be on oxygen for awhile (even after we return home). I realize that these are all just "possibilities" and "maybes" but they are new "possibilities" and "maybes" that we had not heard before.
So again, while I was rejoicing in the fact that Stephen tolerated the cath SO well, I was having to process a LOT of new information and it left me feeling a bit dejected.
The good news, it won't kill him. One of the fellows could tell I was concerned with long term side effects and made this VERY clear to me. It will make things uncomfortable and hard on him after the surgery, but they are not life threatening...so I am just going to focus on that. And while I don't love the news, I am grateful to already know it is nothing to be overly concerned about.
SO, today I am going to focus on being grateful to have my boy home and Praise God for His protection and peace over Stephen!
As far as recovery goes, he needs to take it easy for a week. No running, no baseball, no bikes, scooters...really just little movement period! Also, no swimming or water emersion and daily dressing changes on the 2 areas. We will head back to the hospital on Thursday to follow up with cardiology and await the date for surgery. So, we will be doing a lot of LEGO building, movie watching and hopefully couch cuddling (sounds good to me!!)
And thank you all for your prayers...they truly mean the WORLD to us. I am still a bit too emotionally drained to get too sappy on you, but know that they carried us through and we are so very grateful. May God give the doctors and surgeon wisdom is deciding how and when to move forward, and may he continue to give our precious Stephen His peace that TRULY surpasses all understanding!
Jesus, we trust in you!
Here are a few more pictures of our smiley boy =) And PS...I have a new phone!!! Joe ran to the Apple store in Temecula last night...love that man!
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| Stephen waiting to be called back to the cath lab |
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| Being wheeled in! |
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| Just after we were allowed to go back into the recovery area and be with him. |
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| Back to his self once the medicine began to wear off and he could talk again! |
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| All dressed and ready to GO HOME!!!! |
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