Post-Op #3 - Moving up soon

The docs just made rounds, Liam continues to do well.  He’s in more pain today, so thats been tough to see, he’s just super uncomfortable 😞.  They did take out his pee tube and an arterial line in his wrist.  Good news is that they are getting ready to move him to the main floor.  He should get his neck arterial line out before then also.   

He hasn’t wanted anything to eat yet, but has had a popsicle and some powerade and has held that down.  When we get to the main floor, the goal is to get him up and moving.  I think this will be the most challenging task so far, as well as getting the chest tubes out, so please pray for peace and comfort for him ❤️. But its great that things are progressing so quickly.

Please also pray for me, and protection...my body is very achy hopefully just due to exhaustion and stress...I don’t have any other symptoms, but Im monitoring my temperature just in case.  I may head home this afternoon to rest and maybe make a doc visit to be sure its not anything else.  🙏🏻🙏🏻🙏🏻  I trust God has things under control no matter what bumps in the road we see!  

Post-Op #2 - Morning update

Liam had a good night overall.  He finally got some much needed refreshment at 10:30!  He had a few bouts with nausea, even with medication, so its a very slow go with liquids, but the fact he can finally have some sips of water takes the edgeoff for sure!  He is still on about 2 liters of oxygen and a few different meds.  His blood pressure has been a little on the high side, so hes on medication for that but with plans to hopefully wean him off that today.  He also still has 2 chest drain tubes and a pee tube in, so hes a little uncomfortable obviously and didnt get a whole lot of sleep last night.  He is very calm and not agitated though, so thats good.  His glucose and lactate levels are both dropping well too without him needing insulin, so that is a praise as well.  Shift change and rounds start in about an hour, so we’ll know more the plan for the day later this morning.  Im guessing we still have another day and night in ICU, then hopefully go to the main floor.  All in all he is progressing through recovery like a champ!

Post-Op #1–Road to Recovery

Liam is all settled in ICU and doing amazing!  He has been off the ventilator (extubated) for about an hour and is doing great, no respiratory concerns at all.  He has been awake some and talking a little bit, between dozing off again.  Right now we are counting down to when he can drink some water...he is really thirsty but cant drink until 10:30 😞...All we can do until then is swab his mouth with a tiny bit of water, so its been challenging for him.   His lactate and glucose numbers are a little high, so they are watching that, but all in all he is doing awesome! This day really could not have gone any better...God is merciful and so so good!!  🙌. Ill post again in the morning...Thank you all so much for your thoughts and prayers ❤️

Surgery update #5

Liam is out of surgery and is getting settled into ICU.  We got to see him briefly on his way to his room.  We should be able to go back within the hour.  The surgeon said everything went great, they were able to get a 25mm conduit in (up from a 14mm), so that is a huge praise!  The bigger, the better!  He is still on the ventilator and they are watching some glucose numbers for a couple hours before they attempt to extubate him.  Please be in prayer that goes smooth!  The next hurdle is getting through the next 24 hours with no road bumps.  Thank yall for all the messages and prayers!  Our God is good!!

Surgery update #4

Liam is now off bypass 🙌. Everything is going good, they are monitoring him before they start closing up, but nurse said the surgeon is happy with the results.  Should be another 1-2 hours before he is out, then another hour or so to get setup back in ICU.  Its been a looong day!  But Im so thankful its going well!!  Thanks to everyone who is praying for us!  We can definitely feel them ❤️

Surgery update #3

Finallllly on bypass! Yay!  He had a lot of scar tissue they had to clean out first.  Not sure how long from here, but they said Liam is doing great.

Surgery Update #2

They just updated us —Liam is doing great, anesthesia is complete and the surgeon is working on getting through the scar tissue.  Everything is progressing normally—Praise God!

Surgery update #1

They just took Liam  back about 15 minutes ago. He is doing really well - we had some hard moments this morning but all in all our spirits are good!  We should get updates every hour or so, so Ill post as we hear updates.

Preop was great this morning, Liam got to choose a toy from the toy closet and chose a cool Nerf gun.  The nurse set up some targets on the window so he could play in the room, so he was having fun!

Pre-Op down...tomorrow is the big day

Liam had pre-op all day and it went well. He is all clear for surgery tomorrow.  He had labs drawn, chest x-ray and ekg then we took a tour and met with the surgeon.  It was a busy day to say the least!  Liam did so great, and handled everything like a champ.  I am exhausted, but glad we got a good feel for how things will go tomorrow and the days ahead.

Surgery will begin tomorrow morning at 7:30am and last about 6-8 hours.  They will be doing quite a bit of work under the hood...swapping out his RV-PA conduit from a 14mm to hopefully a 20/22mm, doing patches on his right and left pulmonary branch arteries to widen some narrowing, closing his ASD and repairing an aneurysm on his left pulmonary artery.  Whew!  Yall can google all that, lol!  Oh and they will repair his 2nd belly button from his g-tube also, so thats a bonus!  We will be at Childrens Medical Center in Dallas, where we had his heart cath done.  Best case is we should have just a 4-6 day stay after surgery.

The child life specialist was so encouraging and helpful today.  We never really utilized one in the past because Liam was a lot younger, but Im so thankful of that occupation!  It is helpful to have someone who is so  patient, understanding and knows how to communicate to a nervous child all this medical information and ultimately what they will be experiencing.

We are so thankful for you all!  Please keep us in your prayers tomorrow morning and this week and I will keep updates coming!  Love yall!

Packing and Prepping

Surgery day is right around the corner, so this weekend is pack and prep!  Liam is doing great, and staying positive as he always is, so I'm so thankful.  We are very open with him and have had a lot of good conversations about the surgery and recovery, so I'm hopeful he feels prepared too.  Spiritually, he is amazing - so expectant to see God work some miracles -- which is incredibly inspiring and he is really encouraging my own heart! 

I am doing pretty good, although this is a challenging trial for sure...It is just a very different dynamic than last time on all fronts, so God is definitely moving in new ways and I am really having to press in for His grace and mercy....But oh He is faithful!  There is a lot stirring inside me, so I am also expectant and anticipating the work of God through this season. 

Anyways, being in our bubble the last couple weeks at home has actually been pretty fun!  We had a nerf shooting contest, fancy tea party, couch forts, car ramps down the stairs, board games, play doh, cookie baking, painting, crafts...if we had it, we did it, lol.  Feels a little like summer vacation actually!

I was hoping to type up a post about what is in our hospital bags for this stay, but I think I'll save that for another day.  My hope is this blog can bring encouragement and helpful and practical advice for anyone going through similar journeys, so that is why I am looking at doing some more practical posts too.  I have my packing list already, but it's pretty long and I tend to overpack, so I may wait until after so we can really see what all we absolutely needed and used, and what might could have stayed at home.  The hospital is a good 45 min to an hour (or even almost 2 with traffic) away from home, so it will help to have necessities with us. 

Right now, pre-op is this Tuesday and then surgery is set for Wednesday - we will find out at pre-op what time and how long (among all the details) the surgery will be, so we will update then.  Besides that, we are just going to try to enjoy the next few days and be at peace that the Lord has got this!  I also just wanted to send a big hug and thank you to our family and friends for helping us with logistics, childcare and everything else that we may need....we are so appreciative of everyone and especially for all of the prayers for us during this time!