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Kinda Like 'Nam.

First off, sorry about the disjointed nature of the posting from yesterday. I was updating via text messegaing from my phone and because the service is patchy in the hospital not only were the posts chopped up but they were frequently out of order. You have to be a sleuth to figure it out. On the other hand, I guess it was a direct reflection of what we were experiencing! Between getting little bits of info and there, we had no clue what was going on. This is what we have been able to piece together since yesterday. The surgery itself was a definite success, though there were a few surprises. One of which being that when they took out Leo's shunt of 8 months they discovered that it was not working. Huh??? He never showed any symptoms of shunt failure and brain compression, so what the heck? In between the sobering list of items now holding risks for our guy, the nuero surgeon dropped this little bombshell on us. Does that mean he doesn't need a shunt? Because his daily 8 ounces of fluid has been going SOMEWHERE! This is the least of their worries right not, but it is something they will definitely be exploring in a few days. Anyway they were successful in reconstruction his skull and smoothing out all his hard ridges and overlaps, though he lost tons of blood. They also drained about 4 or 5 inches worth of fluid from his head during which they visibly saw the brain decompress and settle deeper into his skull. It was kinda like the brain going: "ahhhhh" and relaxing into a comfy couch.
So right now, the concerns that they, (and we) are dealing with is trying to get him stable after all that blood loss. Because of the fluid that was pumped into him, his whole body is swelling considerably, and it's a fine balance of finding the right interventions to keep him stable. Since we don't really know what everything means, it was pretty scary to watch the PICU team rushing around with tubes, blood, breathing things, and seeing my handsome boy pale as snow and hooked up to every possible thing. Because all his IVs in his limbs started failing after a while they had to put in a central line into his neck. We haven't been able to see what his new head looks like since they had to put in several drains for blood since his wounds are still oozing and because of the bandaging. But his forehead looks all smooth and sweet, even though it's getting pretty puffy. To tell you the truth, I lost it a bit last night, and after crying in the corner for a couple hours came down with a roaring migraine and so Justin and I decamped for a while to sleep at home and recover our senses. Sorry for all the gory details but they are imprinted into our minds for eternity. It's a battle field and our little lion is out there, and all we can do is watch, and pray. It's horrifying and there was nothing that prepared us for this.
Now that we have a corner in his PICU room I'll try to get the laptop hooked up for easier posting. Thank you so much for bearing this with us, for all your messages and prayers, and for your continued love for our little hero.

Comments

  1. So glad you both got some much needed rest for Leo's battle ahead. Such a warrior he is :-) Sorry I won't be able to be there today for support, know our prayers and love are with you all. Thanks for the posting.

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  2. Mercy, that's a load to process. We're thinking of you and praying for our DuMoulin family.

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  3. This is a formal invite for Leo to be our retreat leader some years from now. roar! Oil of gladness overfloweth this morning. Tons of kisses and arms around the Dumoulins this morning, love Abettis

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  4. Leo is so lucky to have such terrific parents - keep up the good work and we'll keep praying for you and Leo.

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  5. so many prayers for your Leo and all of you!

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  6. It's OK to be weak sometimes, it gives room for God's strength to abide in us and start working. His miracles are on the way. Lord have mercy!! Lots of love and prayers!

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  7. Still praying and encouraging others to pray as well. Lord have mercy! And glory to God for all of the blessings so far! (Where on earth had the fluid been going???)

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  8. You do not know me, but I have been following Leo's story for awhile. Your precious little one has captured our hearts and we have been praying with you and for you. May you find comfort in the ONE place where we know we can find rest. "You will keep in perfect peace him whose mind is steadfast, because he trusts in you." Isaiah 26:3

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  9. We are continuing to pray for your little lion - what a trial you have born the last 24 hours! Thank you for all the details - they show us what you and he are enduring, and they are a further inspiration for our continued prayer. Love and hugs to all of you. "Weeping may endure at night but joy cometh in the morning." -Lydia, Taylor & Lucia

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  10. Thank you so much for posting! We keep Leo and his family in our prayers to God for strength and healing of soul and body including prayers to his medical team for wisdom, patience and grace.

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  11. Thanks for the update! I keep Leo in my prayers! I hope God also gives you the strength in these difficult times!

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  12. There is nothing that can prepare you for this. Remember that he is going to need you at the top of your game when he goes home so take care of yourself. We continue to pray for the best possible outcome and to shed tears with you.

    Doug

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  13. Great to hear everything went well. Little Leo is a miracle and thank God for great doctors. Our love and prayers for all of you.

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  14. Thanks for keeping us updated. We are praying for you and him. Lots of love, Sara (for the Monges)

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  15. I was working upstairs in the ICN and thought about him all night below me!!! I will pray for NO complications!!!!!
    Sterling

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  16. Hang in there, DuMoulins. The ICU is a scary place, but it's an amazing team. The first two days are the hardest. Sometimes it's helpful to focus on a tiny spot of Leo, like toes or an ear, when the rest of him seems to be covered in dressings and tubes. It's still Leo in there and slowly things will be stripped away.

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  17. I wish we could be there with you! We love all of you, and we are so amazed at Leo.

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