Wednesday, January 16, 2019

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!

Tuesday, January 15, 2019

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!

Saturday, January 12, 2019

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! 

Monday, December 31, 2018

Thankful for the gift of time - Surgery rescheduled

As I mentioned in my last post, Liam has been under the weather for over a week, coughing and then running a fever this past weekend, so I made the call into the surgeons office per protocol this morning...Because of his respiratory issues, they do not want to risk anything, so surgery is postponed until the 16th.  Liam and I went downtown to the hospital to get a virus panel done on him, so they could know for sure how long to postpone.  Thankfully, all the results came back negative, so that's good news! Praise God!  Now we just have to be hermits another 2 weeks (which is fine by me!) and keep him healthy until then. Today wasn't exactly the plan we were hoping, but we trust God's timing...And honestly, I am a little relieved and thankful for the gift of more time.

Liam has been such a trooper!  He really has an amazing attitude, taking everything in stride.  Here is a picture of him before his nose swab, and during lol.  In case you need to explain to your child how this is done....dealing with an older child now, I know it's super helpful for me if I can find pictures or videos that show him what a certain procedure is. 

We enjoyed watching the "Trainscape" at the hospital, it really is quite the display of electric trains!  We didn't get a chance to stop by during his cath, so we visited today.  It was actually nice to get out of the house for a bit, even if just to go for a test. 

We hope everyone has a safe and happy New Year's Eve tonight!  You all bless us so much, and we thank you for all the prayers, texts and messages - really means a lot to us and Liam.

Saturday, December 29, 2018

8 Years Later

We hope everyone has a wonderful Christmas!  We had a great time with all our family here--the kids had a blast and my house is a disaster, so I guess it was successful! 

As I am looking back over the years and gearing up for the start of 2019, I am reminded of just how FAR we have come.  Wow!  God is so so good, all the time.  He is so faithful!  Today is actually the "surgi-versary of Liam's 3rd open heart surgery, exactly 8 years ago....

It has been encouraging to read back through that last surgery and see how relatively smooth it went though!  I know it will be a tough road, but my heart is encouraged tonight.  I am so thankful I have our experience documented.  The Lord has been stirring many projects in my heart related to this journey of ours, so I am excited to see where that all leads as well. 

A couple weeks ago, we followed up with our ENT at Medical City, and saw this crazy bus outside, LOL.  Unfortunately, that was all we saw of the boys! They were visiting several local hospitals that day I heard. 

Liam is a little under the weather right now, which reallllly stinks =(  Please keep him in your prayers...I know God will direct our steps as we plan our way this week, and I trust His timing of everything.  Thanks for joining us on this journey!  We are thankful for you - many blessings for a wonderful New Year's Eve and Day this week!