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Tuesday, January 22, 2019

Home and recovery

We finally made it HOME about 2:00 yesterday. YAY!!  Before we left, Liam had both his IVs removed and chest tube dressing changed.  He was very nervous about both because he is very sensitive to tape and seeing his battle wounds.  But, he decided he wanted us to film it so he could show other kids it doesn’t hurt. ❤️  He wants us to put it on YouTube, so when we get that uploaded, Ill share.  He is so brave!
Waiting to be discharged
Finally on the road home!

We came home and it was so great to have the family united again. His brother and sister were just loving on him, so sweet.  They made him a special banner for his room too.


Now is the recovery process at home.  Liam is adjusting well, and slept great last night.  He hasn’t even complained of pain, but I’m still giving him some Tylenol and Advil around the clock for the next day or so.  He is still weak, but thankfully is able to go up the stairs, though we are limiting that for a few days.  We have our surgeon follow up this Friday to have the scar bandage removed and then we go back to cardiology in 2 weeks.


It has been a whirlwind of a week.  Today's plan was to just get some rest and settle back into our home routine.  I'm finding this first day back home is a little different, as I am starting to process the activity of the past week.  It was so fast paced, and being in survival mode that long, I find it’s challenging me mentally to go back to our normal.  Someday I plan to write about this process, because I do feel it comes on unexpectedly- the big event is successful and over, you're home, so just going on with life.  But for a CHD parent, it brings up again the reality that this will be a lifelong battle.  I'm choosing to press in hard with the Lord as I have always done - to find His blessed assurance that He works all things together for our good.

Sunday, January 20, 2019

Home tomorrow!

Liam continues to be a rockstar and had another perfect night.  He got a full night sleep, and is already on minimal pain meds.  News is he will be discharged tomorrow!  So happy we get to go home soon.  Although, the recovery at home will have its own challenges too.  He is walking and moving around more, but is still very limited.  We will have Physical therapy and Occupational Therapy to coordinate once we get home.  I am thankful for this!  He will have 6 weeks of minimal activity and as we really have to protect his breastbone carefully.

He is starting to complain his head is hurting a lot, so he is sleeping now.  Im hoping its because of the screen time, so will probably start scaling that way back today.

It should be a pretty low key Sunday here 😊.

Saturday, January 19, 2019

Bye bye tubes!!

I am overdue for an update!! Today was another busy day.  Liam had a great afternoon yesterday with a longer walk and slept most of the night, which he really needed.

Today was a big day, as he had his chest tubes pulled, finally!  He was very scared, so that was really hard for us to see and help him navigate through...and rightly so, it is probably the hardest task to face.  But our prayers were answered and he was able to get through it and did great.  We had so many people covering us in prayer, so we are so appreciative.  It helped that the big game room a couple floors down was open today, so he could go play Minecraft on the huge video wall afterwards.  And play he did, for 2 hours! Lol. We will have some serious screen detoxing to do when we get home!  But Im also glad he has something to take his mind off of things too.  He also was able to get off oxygen this afternoon, so he is officially tube free!


I went home this afternoon after Liam was doing well from the tubes being gone,  to check on Noah because he had an allergic reaction to his antibiotic.  We got it changed so hopefully this one will work! I masked myself the whole time in the house, the kids thought it was funny, lol.  I was able to spend a little time with them and do bath and bedtime with them before heading back to the hospital.  My momma heart needed them today ❤️.

Our  room here has a pretty incredible view of downtown and Liam also has some amazing friends who made him this sweet banner, and I got to decorate his door glass and be artsy for a little bit.



 

The Lord has been so gracious to us.  He has sent us familiar faces! All the nurses who attended us back in November for his overnight stay for the cath, we have had assigned to us this time too!  The care we are receiving here is phenomenal...Im so grateful the Lord directed our steps and gave us peace about choosing Childrens for his surgery.  I continue to be in awe all that God has worked out for us for favor!  I have so many God moments I want to share...it truly has been a miraculous week.

Word on the street is possible for discharge soon, maybe just one more day ❤️  Amazing!  God bless you all and thank you for your continued thoughts and prayers for us!

Friday, January 18, 2019

New day, doing great

I’m finally back to the hospital from going home last night to sleep and take Noah to the doctor this morning with our masks on.  Not great news there, as the doc thinks he has pneumonia...poor thing!  So he is on antibiotics now and hopefully will start feeling better.  I went to urgent care and I am negative for strep and flu praise God, and no pneumonia, so doctor thinks its likely a sinus infection, so I am on antibiotics too. My mom is such a trooper, Im so thankful for her care of our littles during all this, and my dad and Dustins grandma have also been a huge help with them also...please pray protection over them and Adeline that they stay healthy!! And that Noah starts feeling better quickly!

Liam had another great night, although sleeping has been challenging.  Dustin said he snoozed in between nurse visits, but then woke up at 2am and was bored, lol.  So he played his DS for a little while, then they came to do xrays at 5am.  X-ray was clear (they do that to check lungs to make sure fluid is not collecting).  The goal today is to get him sitting up more and walking again, so that he can get the chest drainage cleared up.  That way they can hopefully pull the chest tubes out tomorrow!  And thats the last major hurdle to be considered for discharge πŸ‘


He is happily playing the Switch with daddy on the tv and just finished a “miralax” milkshake to help in that department, lol so we can pray for poop haha.  He is about to talk a walk around, so more updates tonight!  Thank you to everyone for the outpouring of love and support for our family during this time!!

Thursday, January 17, 2019

Moving up!

Its been a busy day!  Liam got moved to the main floor about an hour ago.  Before the move, they removed his final arterial line from his neck and the most exciting news was he got up walking!! πŸ™ŒπŸ‘ My prayer was he wouldn’t feel any pain or be scared, and boy was God faithful!! He didn’t miss a beat, and took very little coaxing to get out of bed.  In fact, he was like “Lets just walk upstairs now!” Lol.  Guess where the video games are?!   And we didn’t even have to bribe him!  He walked the whole length of the hall the first go.  I stand amazed!



He took a wheelchair up to our current room now on the main cardiac floor.  The last big hurdle will be getting the 2 chest tubes out.  Not to get too graphic, but they are still draining quite a bit, but its all normal.  The more he is up and moving the better, so thats the plan the next couple days.  Until those are out, the nurse said it’s unlikely he will be able to tolerate a lot of food, which is fine, but to push staying hydrated.  Then when the tubes come out, get back to normal eating and then home!! 


He is pretty beat this afternoon, so Im praying he gets a good nights rest tonight.    Im feeling a bit better, but now Noah is going to need a doctor visit tomorrow - I think he’s got what Liam had a few weeks ago ☹️ So im going home for tonight, while Dustin takes night duty and then Ill be back around mid morning.


We are just in awe of every step of this journey and how God is so faithful.  He is our Jehovah Nissi!  Our banner and victory!!

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.  πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»  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!

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!!  πŸ™Œ. 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 πŸ™Œ. 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!