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Tuesday, June 29, 2010

6.29.10 - Evening edition

Liam had two appointments today - The Occupational/Speech Therapist (O/ST) at 9 am and then to Dr. Verma (cardiologist) at 3 pm.

First with the O/ST meeting:
I finally got Liam re-enrolled with therapy for his feeding issues, so the consultation interview and assessment was this morning. My dad oversaw the meeting while I was at work. The O/ST is the same therapist we have had before, so I felt quite comfortable letting her work on Liam while my dad was here without me. Plus we had a nice long discussion on Sunday about what my vision and plans were for Liam as far as therapy goes...I told her about the issues we have been having with Liam's congestion during and after feedings, and she seemed concerned too. It felt good to have a professional validate what I was thinking and how hesitant I am to proceed with oral feedings. She agreed that we should not do any oral feeds until we get another swallow study done later in the summer. We both agreed that Liam needs to take time to heal his airway and overall in general before we attempt to start oral feeds again. Just like everything with Liam, that's how he likes it, slow and steady. Still no answers as to what is causing the congestion, but at least we will have the O/ST overseeing him a couple times a week to help keep an eye on things.

And now for the appointment with Dr. Verma:
His heart looks great - AMEN! Dr. Verma is very happy with Liam's heart right now. He did say that the left pulmonary artery (going to the lungs) is narrowed more than the right and is "flowing faster than the right side", but he said it is not an immediate concern and will probably just put a stint in during his next valve replacement surgery in a few years. Liam's O2 sats were 98, which is amazing (Of course, this was after I got him to stop crying though) and we are also able to cut down on one of the meds Liam is on, lasix, to once per day instead of twice. We are also less than a week away from completely weaning him off the narcotics! YAY! I did speak with Dr. Verma about the congestion issue with feeds, and he recommended we just keep an eye on it for now and possibly have the ENT do a re-check in a month or so to make sure his airway has healed up ok. Other than that, this follow-up couldn't have been better!

Liam is sleeping better and better each night. In fact, I have not had to go into his room other than to give him meds, since I took over night duty this past weekend. We are SO blessed to have such a good little sleeper. That was actually one of my fears for the side effects of this surgery is that he would never sleep through the night again...so thankful that is not the case! I think God knows sleep issues are way more than I can handle...as I myself require a bit more than the usual adult to function properly...or politely ;0).

That's all for tonight folks. All my talk about sleep is making me want to do just that...Goodnight!

Saturday, June 26, 2010

6.26.10 - Sunny side up please....

And no, not for my eggs for breakfast. While we were in the hospital, the nutritionist on staff came to talk with me about Liam's feeding regimen. We talked for quite awhile about all sorts of interesting nutrition things and she confirmed I was doing the right things for feeding Liam. I expressed to her my concern that he had been throwing up quite a bit before the surgery, but she assured me that this was most likely caused by the lack of oxygen he had prior to surgery and that I could expect a "different child" after we brought him home as far as his GI issues go. Well, I've been clinging to that hope that the surgery would be a cure-all for all Liam's quirks and issues. It was even proving to be true as we got through the week without even spit-up to be concerned with. Then came this morning...

Oh I've learned if it's not one thing, it will be another. Liam vomited after his 9 am feeding this morning. Liam started sounding congested again halfway through his feeding, which I thought was strange because he had been sounding very clear the past few days. Then about 45 minutes after the end of his feeding, he started coughing and then that led to everything coming back up onto the floor....So back to square one with his feeding issues. I am pretty sure that he is refluxing, because I don't know what else could be causing this. My mom even mentioned one of his afternoon tube feedings he sounded really congested. I have also noticed that when I feed him solid foods, he sounds really congested during and immediately after eating too. I am to the point where I am scared to feed him solids because I'm scared he is aspirating it. Thankfully we will be starting feeding therapy again, so I am hoping this will ease my fears...I am also going to get him in to see the GI. I feel like I can't wing it anymore. I know his heart is fine and his oxygen levels are great, so there isn't any excuses for it anymore. I am fearful that my plan to get him off the feeding tube by the end of the year might be slipping away...let's hope that I can get some answers!

We did have some good news before the hiccup this morning. The pedi said Liam looks and sounds great and his O2 at the office was a wonderful 96%! Yay for Liam! She told me she was so happy to see him so pink!

So, yes. I would like our life to stay sunny side up...please...Lord, we need you to keep being You and move these mountains for us....We cannot do it alone!

Thursday, June 24, 2010

6.24.10 - Summer plans


So things at home are going pretty good, and dare I say, it's a little quiet around here. Liam continues to do well off the oxygen, no scary blue moments yet. We are also still weaning him down on his medications, which is going smoother than I had anticipated, with no withdrawal symptoms to speak of. Sleeping at night seems to be our only challenge right now. I would say we are enjoying a nice break from crazy.

I have finally realized (after June has slipped through my fingers in an instant!) summer is fully underway. I drive home past the water park each day, a little jealous that I can't be there, soaking up the sun, having fun with the fam. That's how I know it's really summer. Our summer this year will be full of healing and therapy...I would say only for Liam, but I think I'll get in on the action too. I went a little overboard at Half Price books last weekend and bought a bunch of books that seemed relevant to where I am at spiritually in my life right now and where I want to be. I do know there is healing and definitely some therapy that needs to take place with me with God...you can't go through trauma without some baggage being kept along the way. So as Liam is meeting with the speech therapist and physical therapist, momma's got her meeting with the great Healer too. Hopefully come fall, I will be whole again and Liam will be able to drink from a sippy cup...that's the plan at least =)

I did want to briefly mention that I am planning something BIG for winter....I don't have all the details worked out just yet, but I am excited to soon be able to share an amazing opportunity with everyone...TEAM LIAM. That's all I can say for now, so you'll have to stay tuned to the blog as I iron out the details and get the show on the road!

And lastly, for those of you (and for me when I can't remember and have to go to my blog for dates of happenings) who are appointment people, Liam goes to the pediatrician tomorrow for a post-surgery check-up and then we go see Dr. Verma (cardio) next Tuesday. Prayer needs are for a solution or answers to what is causing his congestion problem and also that his heart is pumping like it should.

And now for some pictures...

So what's wrong with this picture?  Mimi and mommy have had a long sleepless week....
Tags go on the front right?

Dad to the rescue....


Now it's right!  

Had to add this one for the "fans"
Grandpa's favorite teams...Cowboys and of course, MIZZOU!




Tuesday, June 22, 2010

6.22.10 - Back in the swing of things...

Liam is doing great at home. We took him off his oxygen last night and he is doing fine without it. Apparently, the tubing was getting condensation inside and water was accumulating - thus Liam was breathing in water particles for a short time yesterday, unbeknown to us. So, we had to take his cannula off and decided to see how he did for a little while. Of course, he did fine. I made my husband call the cardiologist just to be on the safe side to make sure we didn't have to put him back on it, but he gave us the OK and told us just to watch him closely. Ha, you don't have to tell me to watch Liam closely =) I was a little worried about putting him down for the night without it, but Liam did a great job of reassuring me he was fine overnight, as he graciously awoke himself whimpering, babbling or crying every 30 minutes or so all night long....strange sometimes what I am thankful for....

So, Monday was my first full day back at work since Liam's surgery. I was glad to be back, but it's always really hard for me to not be with Liam all day, especially when I've gotten used to that routine. He is always so much fun and so happy to be around. Even on all the medication, he is still his same happy, giggly little self. My work has been great with our situation, and I really owe them a big thanks for all the support they have given my family the past 9 months. I am blessed to work for such a family-centered, God-centered company.

Tonight, I am also returning to my small group/bible study in a long time. I meet with three other great women and we do accountability support for each other. It has been really wonderful and I love my girls...can't wait to see them all and catch up on life and their journeys with them =)

And so, our life goes on. It feels really good to have the surgery be behind us, knowing that for now, it was a success and hoping and praying Liam will stay healthy for a long, long time. I have already started planning some great family outings for us once Liam is fully recovered, and I am so exciting to get him out of the shell he has been living in the past 9 months and open his eyes to all that is out there...I am excited for the new experiences we will have as a family! Stay tuned!

Sunday, June 20, 2010

Fathers Day!


        I want to start this post by saying I am very proud of my wife for the dedication she has given to Liam, myself and this blog. She has poured her soul into this blog for the world to read, all her worries, emotions, and thoughts as we have gone on this journey we call life. I will tell you this has been a difficult journey for the past 9 months. But i know this, I would not trade it for the world. It has taught me not to take children for granted, they could be gone in an instant. Cherish every moment. After the first surgery when Liam was 5 days old, when we got home with him .... to be honest i felt like sometimes it was a pain to be around him. He was so needy. I know what you are thinking, but i had to give up "my time" with "my wife" , i couldn't be selfish any more. I had to share her, Liam needed Tara more than i did. I needed to stop being selfish. The void that i have with my wife, i need to fill by spending time with Liam. So yes i spend a little less time with my wife but, i get to fill that time with a handsome little boy. The way that Jesus Christ was selfless with others, we need to be selfless with our children. People tell you when you are having a baby that your life will change and will be totally different. I would be thinking "just as long as i have weekends off it will be good". Boy was I wrong, you barely get any weekends off. It's like a full time job working doubles everyday. Well it has taken a while but i had finally realized a month or two ago. This is the way it is going to be for the next eighteen years. When Liam was recently in the the hospital for his second surgery it has made me think of his life past, present and future. I have thought of the things he has overcome to where he is now. All of his obsticals, wheather they be feeding, breathing, or his heart beating. What a miracle Liam has been to us from the day he was born. I think of his future, will he be able to enjoy sports like i have. Will he have a normal life? I know that, what ever life he has God is the master planner for him, he has a plan for us all. he is the ultimate father. 
 
      To all the Fathers out there how great a privilege it is to raise a son (or daughter) in this world that we live in today. Wondering if they will take all the good things or bad things they have learned from us. I pray that my son, Liam will grow up to be a better man than I. My goal is to raise him in a manner that when he becomes a man and leaves my home to start a new chapter of his life. That I won't be worrying about the choices he will be making because, I know i have raised him to the best of my ability. I want to take this time to thank my father for how he raised me. I love you dad!




Saturday, June 19, 2010

6.19.10 - Looking back...

So glad to finally be home.  Liam is on 1 liter of oxygen here and still has some congestion, but other than that has been smiley and slowly returning to his normal self.  We do have a pretty strict regimine to follow with his narcotic medications that we are weaning him from, so right now, he is still under the influence of some pretty heavy drugs. 

We have been returning to his normal schedule of eating, playing and sleeping, with just a few more resting periods in between.  In fact, Liam slept in his room, in his crib for the first night ever last night....we have had him sleeping in our room in the pack-in-play since birth (mainly because I am paranoid and also that it has been easier on us to have him bedside).  It was a BIG step for me!  LOL =)  We did get a really good monitor - Graco Angelcare - the one that senses movement as well as sound, so I felt pretty secure that he would be ok.  My mom is also staying with us this weekend to help out and she slept in our guest room which is right next to Liam's room and offered to be on crying duty for us last night.  Liam did extremely well, as I only heard him wimper a few times during the night.  I was on medicine duty (as we have a 12 am and 4 am med time right now) so I was able to check on him too, both times he was sleeping soundly.  He slept for 12 hours....I am so blessed to have a good sleeper on my hands!

Well, this morning I decided to post a series of pictures of how far Liam has come through this surgery, beginning with the day before through today.  The last three weeks have been a roller coaster ride that I am sure glad to have behind us...and I am excited for what today and the future hold for us as a family, with little Liam's heart working on all cylinders now!



First, a comparison of day before heart cath/surgery...And today! Look at those pink lips!!


Morning of the heart cath



After surgery 6.3.10

Chest tubes about to come out

On the vent

Eyes open for the first time post-op

Monkey's doing his job well!

Momma gets to hold Liam for the first time post-op!

Arterial line came out...IV went back in, on his head

Sitting up for first time post-op...a little woozy still

Hands free! He sleeps much better when he can play with his ear

My paper bouquet with candy filling for our fabulous nurses!

Lots of rest
Liam loves his daddy!

Home at last...still needs a lot of rest and recovery, but he's come a LONG way!!

Thursday, June 17, 2010

6.17.10 - Home sweet home!!

We are finally home sweet home! We got home about 5:00 this evening and boy am I exhausted. I think sleeping in a recliner hospital chair for a week is starting to hit me....so, short post tonight, I'm going to bed!

6.17.10 - Going home!!!

Going home today!!! Praise the Lord!! Liam will have to be on oxygen for a little while at home, but we can definately handle that as long as we get to take him home.

I wanted to say thank you again to all our friends and family for keeping us in your prayers over the last couple weeks. You all have played a very important role in Liam's journey and we are blessed beyond measure by all the love and support we have recieved.

Hopefully tonights post will be from our home computer :)

Wednesday, June 16, 2010

6.16.10 - Last few strides...

Liam has continued to do well on a small amount of oxygen, sleeping a lot today. The pediatrics floor is booked for the night, so we will be staying down here in the CHSU another night, hopefully our last for a good long while.

The journey...that is what it is all about, what HE is all about. I have learned more about myself, about my faith, about my marriage and about our courageous little boy in the last couple weeks than I think I have my entire life. My prayer through all of this first and foremost was for Liam's heart to be healed, but also that God would mold me into more of the person He wants me to be, that God would mend my heart too. And if only I could somehow paint a picture of what God has done in my family through our journey with Liam, how he has healed us, carried us, purposed us, comforted us, and ultimately rejoiced with us, I would hang it above our mantle as a priceless masterpiece, designed and inspired by our one true God. Oh, how I hope to continue praising Him, whether it's in the fire or after walking through it.

Since all is quiet here right now, I'll leave with a link to a great song that a relative of mine sent me in the midst of our journey here...it really spoke to my heart...and gives me peace knowing we never walk alone.

"Your Hands" by JJ Heller

I have unanswered prayers
I have trouble I wish wasn't there

And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine


When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands
Your hands

Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...
When my world is shaking
Heaven stands
When my heart is breaking
I never leave...
I never leave Your hands




6.16.10 - Down the Homestretch: Part 3

It's moving day! We are moving to a regular pediatric room on the 6th floor this afternoon. Long road to get to this point, but one step closer to going home!

Liam is having an ok morning. He is really tired and cranky today. I think the withdrawl from the drugs has been really tough on him, I know it has been rough on me seeing him like this, cranky, irritable, with red droopy eyes and some tears even. I'm pretty sure it also is affecting his oxygen levels. He has been up and down all morning. I think the oxygen is still running at 1.5 liters.

Anyways, I'll update again when we get settled upstairs. I am definately going to miss all the CHSU staff and nurses who have been so wonderful to us. We could not have asked for better hands to care for our Liam.

Tuesday, June 15, 2010

6.15.10 - Down the Homestretch: Part 2

Bath, check. Meds, check. Respiratory treatment, check. Sleep, check. Liam is down for the night.

The ENT came by around 5 this evening to take a look at Liam's airway to make sure nothing else is going on that we don't know about. Good news is, there is no new news. ENT said that the right vocal chord is still not moving at all, which we knew, but nothing else other than some slight swelling, but nothing out of the ordinary or of too much concern for his type of trauma.

We did switch Liam to soy formula this morning, and he seems to be tolerating it well. He does sound a little less congested when he is asleep, but when he is sitting up or moving around a lot, the congestion comes back. So I'm not sure if it is the milk, but maybe the soy is helping some...? The ENT also checked for reflux, which he did not see evidence of.

The cardiologist on call this week, Dr. Thomas, did come by to check on things and let us know how the echo looked. He said it looks good, but Liam's right side of his heart is a little weak. He said this is very normal after his type of surgery and isn's a concern right now, but if it looks this way in a couple months, then we might have a problem. We knew that Liam still has a very small hole between the left and right atrium in the upper chamber of his heart, and the surgeon leaves this hole open to act almost like a blow off valve to keep strain off the heart when necessary. Well, since Liam's heart is weak, sometimes the unoxygenated blood just crosses through that small top hole instead of being "pumped" down to the lower ventricle. This causes some of the deoxygenated blood to be pumped out to the body with the oxygenated blood. Dr. Thomas said this can cause small desats every so often...which may or may not be causing Liam's issue right now.

As far as going home, not quite sure. I talk to the Staff Doc today and he said he would rather not send us home on oxygen. So far, Liam has slid into the upper 80's a few times since I've been writing...we shall see how the rest of the night goes, and what tomorrow holds.

6.15.10 - Spoke too soon...

Setbacks. A seemingly endless trend with us and hospital stays. So Liam had another minor setback today, which will keep us here at least another day...not sure how long because they don't really know what is going on.

His oxygen levels overnight while sleeping were low 80's upper 70's for the most part. A few times last night, for no apparent reason, his sats would drop to mid to low 70's and then take awhile to get back into low 80's again. I wasn't too concerned, but I have had a lingering feeling ever since I found out we were probably going home today that something did not seem right. Could never put my finger on what was bothering me. Dr. M had assured me again yesterday that mid to low 80's was ok for Liam right now and that he would eventually get stronger and better. Well, it seemed to me like Liam was steadily (slowly) getting a little worse. His upper airway seemed to sound the same (very congested, phlegmy and coarse) regardless of the treatments and suctioning and the treatments didn't really help him saturate any better than before. When Dr. M came by today, he asked me what I thought of everything. I did mention the milk allergy as a possibility and that maybe we should try the soy formula becuase the milk could be an irritant for him. He agreed, so we are trying the soy now. Other than that, I told him I don't really know but that he seemed to be getting worse in my opinion.

The good news (I'm so glad there is SOME today!) his x-ray showed no signs of anything going on in his lungs, which further indicates this is purely an upper airway issue. I asked to see if we could have the ENT come by to take a look. The nurse told me she would "pass the information along" to the doctor. When the respiratory therapist came to do her treatment, we discussed possible reasons for the low saturations, and she thought of the milk as an issue too, and thought Liam may be silently refluxing...she, too, said she would let the doc know. We will see where that leads...hopefully this is as simple as a formula change. That would be wonderful if that's all it takes.

Needless to say, it has been a frustrating day. On top of everything, it seems like we have a whole new staff of nurses and floor docs to deal with who don't know Liam or his history very well. I am thankful they listened to me about the soy though, even though I still have my doubts as to that being the root of the problem.

Sorry if this post is everywhere, my brain is a little scattered right now. There are so many possibilities in my mind of what this could be. With all the changes they have made trying to wean him off everything, who knows. I just have to keep reminding myself that God does not waste time or moments. He is calculated, precise and exact in all things. I know even this minor setback, is purposed for something, and I am thankful we are still in the hospital and not home trying to sort all this out. So, calling all prayer warriors...keep them coming!

Monday, June 14, 2010

6.14.10 - Down the homestretch!

Had a busy morning already. Thankfully Liam did finally fall asleep around 11:30 and slept really well until about 7:00 this morning. He is now off all of the IV meds and the oxygen. They came this morning to take his central IV line out of his shoulder, but now he has an IV on his head for emergency purposes if needed. They also took him off oxygen, and so far, he's been doing great on his own.

Liam also had an echocardiogram done this morning, and the cardiologist on staff this week should be reviewing it with us later today.

His feedings are still set on the continuous feeds, but they are supposed to be transitioning him to bolus feeds today and tomorrow. All in all, things are going good and it looks like we will probably go home tomorrow! I think they will be discharging us from the CHSU and not bother sending us to the regular floor.

Liams calling me...just heard a poop....will post more later!

Sunday, June 13, 2010

6.13.10 - Sleepless night ahead...

Gosh. I need to be careful what I say on here...so Liam WAS sleeping sooo good. Can't say the same right now. He has been awake since 2 this afternoon...and it's almost 11!! I should have taken a MUCH longer nap this afternoon, for I'm thinking this is gonna be a LONG night....

At first this afternoon, Liam was VERY fussy and cranky, probably for a good 5 hours or so. It was kinda hard to see him like that, he would just cry out a lot like he was in pain, but we knew he was having some withdrawl effects. Then this evening he was calming down and even giving us some smiles and a giggle or two. Well now he is just all revved up in his crib - I'm watching hands and feet go up and down, shaking the crib as he is trying to play instead of go to sleep. I'm glad he is feeling better, but I thought it'd happen a little more slowly than this!!

They are turning off the last IV med tonight YAY!! We are now giving him methadone and Ativan via his g-tube and we will go home on those so we can slowly wean him off the heavy drugs in about 3-4 weeks. For the first week or two, we have to give him meds every 2 hours round the clock then slowly start weaning dosage amount and time in between. Again, I am so grateful we have that g-tube...at least we won't have to wake Liam up to give them at night.

Well, we also prayed for poop and it keeps coming!! I feel kinda like I have a newborn again! Up every 2 hours, every diaper a poopy one...going home will be a little bit of a challenge for us :)

Speaking of going home...We should move out of th CHSU and to a regular room tomorrow, then hopefully home on Tuesday!

I'll keep things posted!

6.13.10 - Peaceful Sunday morning

It is a quiet, peaceful Sunday morning here at the hospital. Liam has been sleeping really well, the nurse and respiratory therapist had to wake him both for his treatment and nightly x-ray last night. He is still asleep... :)

They started his feedings last night. He is slowly working up on volumes on a continuous feeding regimine. His mucous now is thicker than it has been, and we did have a short period early this morning (before his resp treatment) where he was de-satting into the mid to upper 80's for a unknown reason...I have my suspicion that Liam has a milk allergy that causing his mucous to be thicker. The resp therapist even said it was thicker than it was for his previous treatment that day. I told the nurse this, and we are monitoring it. His sats have been fine since then, maybe 1 or 2 % lower than normal for when he is resting...we will see how today goes.

Well I am going home for a little while today to spend a little R&R time with the hubby since I haven't had much time to spend with him since I've been staying nights up here. I am also going to try to finish up my thank-you paper bouquet for the nurses...I had to keep adding more flowers since our stay here has been extended! Thank goodness we have had some of the same nurses multiple times, otherwise my bouquet would have turned into an arrangement!!

More posting later - hope everyone has a blessed day!!

Saturday, June 12, 2010

6.12.10 - Hooray for poop!

So Liam did it.  He finally pooped.  It took the hand of a skilled nurse (who I'm assuming got the short end of the stick), but he finally went.  It wasn't a lot, which was good, but now at least they can start feeding him...again.  As Liam's body starts returning to normal, I am thanking God for the prayers he has answered and for some normalcy again, even if we are still in the hospital.

Not much going on today, as weekends are usually pretty quiet around here.  Liam did get a few more special beads for his Beads of Courage chain.  I'll post pictures of them tomorrow.  Liam also had his first post-op smile today - granted it was while he was sleeping, with his pacifier in, but nonetheless it caught my eye and made my day.  Oh the joy!

I'll end with some pictures from this morning.


Liam and me...our sweet time together this morning.

Monkey is still working overtime to help Liam sleep easy and cuddle between his arms while he's on his side.  He also helps to hold that paci in!

6.12.10 - In my arms again!!

I got to hold my baby for the first time in over a week this morning!! It was such a sweet time...he just slept in my arms for an hour. Pictures to come soon!

Liam is doing great still. The plan today is to get him to poop. Once he does that, things can really start moving along. He just had his 4th or 5th dose of Miralax and 4th bottom pill, so hopefully that will do it. If not, they will have to give him an enema or a shot to get things moving. I told them to do whatever is necessary...but hopefully this dose of meds will get it going.

Last night went well. Liam slept pretty sound and I was able to sleep in two or three hour increments at a time, which is good. The nurses have been really great about keeping hands off as much as possible, so they try to only do things when he wakes up on his own.

I'm going to try to post some pics later today :)

Friday, June 11, 2010

6.11.10 - Right on track

Sorry this post is so late - everything is fine though, so no worries. My day got a little off because I stayed at the hospital with Liam last night, so I went home to nap for a bit and shower this afternoon.

Liam is progressing very well since coming of the vent. He is still very coarse and "junky" sounding in his upper airway, but he is continuing to get the steroid Decadron every 6 hours to minimize swelling as well as respiratory treatments of antibiotics and some deep suctioning to get mucous out. Those are not fun things to watch him fight through, but a neccessary evil I guess.

He is sleeping very well considering they are starting to wean back his sedation and pain medicine. He wakes up about 20-30 minutes at a time, but will then sleep anywhere from 1-3 hours at a time. Thankfully, we have been able to calm him down a few times and get him back to sleep without giving him additional sedatives, so that is good news.

The plan going forward is to:

1) wean him off all the IV sedation and pain medications
2) After Liam poops, they can start feeding him again
3) wean off oxygen and get his upper airway checked out by the ENT
4) An echocardiagram to make sure heart is still in good shape from surgery

After these thing happen, we can go to the regular pediatric floor for a day or two, then go home! The NP said she estimates by midweek next week we should be going home.

I'll be staying with Liam probably each night until we go home. Now that he is more aware as he is coming off the sedation, it's hard to leave him alone at night. I have not been able to hold him yet, but it should be soon. Once they can take him central IV line out after all the IV meds are stopped, I should get to hold him....I want what's best for him, but it's hard to wait! And I don't think I want to take any chances on praying for patience right now! LOL

Will update in the morning... Gotta try to get some rest!!

6.11.10 - So far, so good...

Liam has now been off the vent 12 hours. This is a huge answered prayer...THE prayer we have been praying for awhile now!

Liam continues to do great off the vent. He is on regular oxygen through his nose and his resting sats have been 98-99. Last night he did great too, a few times he got pretty upset and desatted but he always recovered and got his oxygen levels back up fairly quickly.

Also, his arterial line (large IV in his wrist) started coming loose and his arm was bleeding pretty bad so they decided to take that out. He still has his central line (an IV in his shoulder) that all his meds go through that is doing fine, so I was glad they decided to take out the arterial line. It seemed to really be hurting/ bothering him.

Other than that we are just praising God today! We still have a ways to go before we go home, but this was the main hurdle Liam had to get over and I thunk he's made it :). Thank you all again for the outpouring of prayers and support.

Thursday, June 10, 2010

6.10.10 - Liam is off the vent!!!

Liam is off the vent....This all happened pretty quick, but I know how the Lord works and this was a clear sign this is the time. Dustin and I had met our dear friends Lesli and Tripp for dinner and towards the end, my mom (who was up in Liams room) text me that the Dr. had come by and did we want to talk to him. Of course, we never miss an oppurtunity to talk to the docs, so back we went to the room.

Dr. C talked with us and explained why he wanted to try to take Liam off the vent tonight. Dustin and I felt like everything he said validated our thoughts on the process. After praying about it, we decided to go ahead with the extubation. Foremost, they had Liam breathing very well on his own with the vent turned off for over an hour. Plus, his sats were pretty good and his lungs sounded good as well. Dr. C thought maybe doing it at night, keeping the sedation going, would be less stressful for Liam since he tends to sleep pretty well and be more relaxed at night. I agreed completely with his logic, because it seems like Liam's attempts have failed in the past partially because he got too stressed out with everyone messing with him. Dr. C's plan was to pull the tube and let him be for a few hours, no touching. Our night nurse was also one we have had the most since our stay here, and she by far knows Liam the best, so I felt comfortable with all the support as well. I don't think the Lord could have orchestrated it any better to put us at peace about it.

So, we just went back to see Liam after extubation and he looked good. He was peaceful, a little wiggly, but nothing like before. His breathing looked better than the past few times too. Praise God is all I can say. We are rejoicing right now!

I'll be staying overnight so hopefully I can hold Liam for the first time in over a week...finally!!! To God be the Glory!!!

6.10.10 - Joy

Joy. I think it's found it's way back. It's often missing, I think, from a heart mom's life. Stolen, rather, by the tears we shed for our children. Sometimes I don't even realize it's gone....when my eyes are filled with tears for so long, I am unable to find it, because I cannot see. But God is good, he dried my tears when I finally let Him, so He could show me that He never left my side and HE is my JOY.

Today has been a good day. Liam's new sedation is working, so he is a sleeping angel right now. Granted, we have had a few moments of flailing around and trying to scrunch his way out of bed, all in all it's been a restful day for him. And the numbers are doing wonderfully. They have been weaning him down on the oxygen percent the vent gives him - They've got him down from 55 to 35 today and his numbers are staying up. I couldn't be happier with his progress today.

And then...our life interrupts...as I was writing this, Liam received another respiratory treatment, which he is struggling through...The respiratory therapist said he is sounding wheezy...not good. Alarms keep going off for his sats and this is not a good end to the day. But, because of the first paragraph I wrote, I am not suprised...for the enemy, I'm sure, did not like what I had to say. We will not be defeated...despite his attempts. I hope the enemy is terrified, because JOY is a powerful thing. Just wanted to give the health report as it's happening here...

I have really been reflecting a lot today about how in awe of God I am and how He is working all around us because of our little boy. The outpouring of God's love through emails, texts, phone calls and messages has been truly amazing and we are deeply touched. That was one of my prayers that I have been speaking to God personally, for joy and to feel His love again. And I just wanted to say thanks to all of you, for praying for us. I have felt God's love in ways I could not have imagined. It is very humbling to be on the receiving end of love and support, but we are so blessed and grateful.

Praise be to the LORD, for he has heard my cry for mercy. The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song. Psalm 28:6-7

6.10.10 - A new day, a new plan...

The plan is to keep Liam on the vent for another day in order to get his lungs and airway in the best shape possible. The challenge for the docs today is how to get him awake enough to start taking breaths on his own but sedated enough to not be squirming around a lot. Their plan for that is to put him on a different sedative and wean him from the one he is on now (on Midazolam now going to Ketamine for those of you who like medical terms). Dr. Fanning thinks this is the best approach considering how squirmy he has been on his current sedative (midazolam). I feel like he is taking a good approach and I feel very comfortable with the plan.

No poop last night or yet this morning. They are continuing to give him the Miralax. I forgot to mention on my posts that they have suspended his feedings because his system was lagging behind with all the sedation. As of Tuesday morning, he has just been on IV fluids...so I'm sure that's not helping things.

From a heart stand point, Liam's heart is great. He is healing from the surgery as expected and Dr. Verma said he couldn't be more pleased with how things went as far as the heart goes. We just have to get over this hurdle of the ventalator and then we should be good to start preparing to go home! Keep the prayers coming!!

Wednesday, June 9, 2010

6.9.10 - Beads of Courage

Liam was a wild man all afternoon...the nurse said he is metabolizing his sedation medications very quickly, so they are not lasting very long. He keeps waking up and thrashing around, which is not good for him right now with the tube in. SO, I've been manning his bedside trying to keep him calm most of the afternoon...He also fought his way through the respiratory treatment this afternoon. He didn't respond very well to it...It has been an exhausting afternoon!

Plus, we are also waiting on poop. Sorry to bring it up again, but unfortunately its causing some issues...again. He has already been given some Miralax and 2 "bottom pills" and still nothing. My heart breaks for him...the more time we spend here, the more helpless I feel to help him and make him feel comfortable. I think the hospital setting is really starting to wear on me...

Good news is I promised a post on a new program that MC started with their heart children so here it is! The program is called Beads of Courage, and a lot of hospitals participate in the program. It initially started as a program for cancer patients, but they developed one for cardiac kids. Liam will get a bead for every thing he goes through for his heart condition. From a I.V. stick to intubation to heart surgery, they have special beads for all kinds of procedures and milestones.





And each time he experienced something, he gets a bead. The surgeons assistant, Kathy, started Liam's bead chain for us already and caught us up through this surgery. Here is picture of Liam's beads of courage:


Of course, we have also earned a few additional beads since we have been here =), so they give you a sheet to track things on so when you visit your cardiologist, they can give you your beads. It's a great program to have something tangible for when Liam is older to visibly show, besides his scars, what all he has been through. I think it will be very special for him as a keepsake.

I'll end tonight with some snapshots from the hospital...these were taken Monday I think...

family time

Had to catch this cute pic of Liam and monkey....monkey has been very useful in many ways here, especially good at holding up the vent tube =)

6.9.10 - Change of plans...

Well the plans changed for today. We have a new doctor and NP on the floor today, and the new doc, Dr. Flanning, thinks that Liam's lungs are in worse shape than orginally suspected. He wants to give Liam at least another day on the vent and do more aggressive repsiratory therapy - he is basically treating this as if Liam has pneumonia. The lab results came back and did indicate an infection - as the white cell count was high and his vent tube tested positive for bacteria...Not great news, but I am glad they are taking a more cautious approach. Liam will also keep receiving the strong antiobiotics he has been on, as well as the steroids. Good news is, it sounds as if the swelling has gone done in his upper airway. They can tell because it sounds like he is snoring on the vent now. This means air is escaping around the tube, which is a good thing. Dr. F said he would also like a day to get to know Liam and his history before he decides any extubating plans.

Liam's mood is getting a little more irritated. They have had to sedate him a little more to keep him from thrashing around. He is starting to have moments were he wakes up suddenly (for no reason) and thrashes around for a minute and then calms back down...I hate that he has to take more sedation medication, but then again I would rather him be still so that the vent tube doesn't cause anymore damage. Who knows what damage it has already caused with him being intubated this long and extubated a lot.

We did receive some great news on the research front for Liam's heart condition. Dr. Verma (cardiologist) was telling me this morning that Children's hospital in Dallas is starting to test catherized valve replacements in children. This is a huge step forward in the medical field that might possibly allow Liam to forego any future open heart surgeries. They would do the valve replacement through a heart cath, with no need to open the chest.

All in all today should be a somewhat quiet day for us here. I'm going to try to do a post later today about a special program they have started here for cardiac kids...Just haven't had the time to get the post together yet!

Tuesday, June 8, 2010

6.8.10 - Hope for a brighter tomorrow...

Praise God - we got the test results back for his liver and it is working just fine. In fact, this afternoon, Liam seems like a different child than from this morning. He seems comfortable and is resting easy. He looks better too and his skin isn't cold and clammy like it was earlier. So weird how one minute things can be turn upside down and the next be relaxing and calm....We still don't have the results back for any indication of infection, but he has been on some pretty strong antibiotics, so I am really doubtful this will be an issue. Prayers definately are being answered!

Things this morning were just so crazy...it's hard to seperate yourself from the moments here to stand back and think clearly. The plans are to try to extubate him the 3rd time tomorrow...we are very hopeful that this will be the final attempt. They told me they would probably have an ENT doctor standing by to check his throat immediately after, to make sure his vocal chords and airway are cooperating with the tube being out. They also plan to keep him on the steroid treatments through the day tomorrow also, to help keep any swelling down.

It's hard to be on this roller coaster ride again...the downs really slam you down sometimes, but then the up days make you forget the down times even happened...I feel like just when I send out an S.O.S., we'll have an upswing and things will be fine again...Liam is definately keeping us on our toes here! Praying for a SUCCESSFUL day tomorrow!

"My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." 2 Corinthians 12:9

6.8.10 - Walking in the unknown

Liam has not quite been the same since yesterday. He is a little more irritable than he has been lately and he was breaking out in a cold sweat. His little head and hands were so clammy....His temperature was running a little low yesterday evening when we left, and apparently got worse overnight, but has recovered some this morning, but is still only about 96.5.... I knew when we left here last night he just didn't seem right. But with all the trauma he has been through lately, I just figured it had taken more of a toll on him this time.

This morning, the nurse asked me if I had given Liam anything blue or green through his g-tube because she had extracted some blue-tinged stomach contents when she was venting his g-tube for air....I was like, ummm, NO?...Very weird...She and I were both perplexed, as she mentioned nothing in the chart was indicative of him having anything like this in his system....And so, obviously this tipped off my already worrisome nature, and sent me straight to google to research it. Didn't really pull up anything except for "tylenol poisoning in cats"...Hmmm. This lead to some scary articles on liver failure...I got to those and had to tell myself to stop googling.

Dr. M and Dr. C came by this morning to let me know they are going to run some more tests to see if he has an infection. I asked about the possibility of his liver not functioning as it should and they immediately nodded and said they are going to run some tests to check that also. Glad I pulled up the liver articles after all...I think they were suprised that I asked about liver complications...I forget sometimes how you really have to manage your own care and advocate for yourself in the hospital. Doctors and nurses are human, just like us. But I'm glad my thinking was on par with the doctors course of action...just hoping for some answers to what is really going on.

Monday, June 7, 2010

6.7.10 - 2nd attempt failed...

Second attempt at extubation unfortunately failed again. The removed the vent tube at around noon and Liam did great the first 30 minutes...he started relaxing and breathing well on his own pretty quickly. Then all of a sudden he slowly started de-satting and breathing harder and harder. I immediately knew something wasnt right. They tried a couple treatments to see if they could get him breathing better, but to no avail. Not sure what all went on in here between 12:30 and 1:00, before they re-inserted the tube. To be honest, I lost it and had to leave the room. My dad was here with Liam and watched everything go down. Dr. C (CHSU doctor) told us his airway started swelling and narrowing and basically closing up which was not allowing much air through. They tried a couple of inhaled steroid treatments but they didn't take like they should have. He had to put a smaller tube back down because he said the swelling was pretty bad. Now Liam is on an IV steroid to help the swelling go down which they will most likely keep him on another couple days.

I'm a little numb right now from all of this...just in disbelief that this attempt failed too. God and I just had a good long talk, and I'm pretty sure I didn't have a lot of nice things to say to Him. But then again, that what He is here for...to remove our burdens from our backs and carry them for us. Lots of things rolling through my head right now, so I think I'm gonna go take a breather. Please continue to pray for us - do not be discouraged in your prayer...they ARE helping and God is listening, just in ways we may not be able to see...yet.

6.7.10 - Plans to extubate soon...

So we have plans to extubate in the next few hours if Liam continues to do well on his own. They turned the machine in back up mode, which let's Liam have to make each breath on his own and it measures how big and deep each breath is. The machine will only help if it's needed. So far he is doing good...

Oh, and to follow up on the poop, he had a huge BM this morning! Yay for poop! Poor nurse though!

Well keep posted on how today progresses...

6.7.10 - Long week ahead...

Big week ahead. Liam is doing good again this morning. They told me early this morning that they may extubate him today. They made a lot of changes last night to the vent and dialed him down a lot on what he is getting for oxygen. With all the changes, Liam's sats have stayed constant in the high 90's - usually 98-99 which is great. I think though this virus has taken a toll on his little lungs. I'm very worried given what happened last time...but I know God is still in control and gave us these doctors... So we will see. I guess it's just been so peaceful and quiet lately, I'm a little panicky to not want to go through another down day again...please pray for us and the Lords timing in extubating.

I'll keep updating as the day goes on. The docs are about to make rounds so hopefully I'll know the days plan here soon.

Sunday, June 6, 2010

6.6.10 - Day of rest

Liam had another good day of resting today.  Nothing too exciting to share, which is good news in itself.  He did have one of the two oxygen sensors from his forehead removed and they have started slowly weaning him down on the vent and decreased his oxygen intake by 15% today, 5 at a time.  He is also up to his full feeding amount on the continuous feed, at 40 ml per hour.   His respiratory treatments went to every 3 hours from every 2 as well.  He is doing really good so far, just taking things slow.  He was a little more wiggly today during his respiratory treatments. 

And for those of you interested in "poop" (you know who you are ;) ), I am a little concerned since he has not had a BM since Monday....I did talk to the nutritionist today and she confirmed that my feeding regimine was appropriate for what his needs are and that the "issues" we are having with lack of BMs is normal and that they can do things for him here to get him "caught up" again...Will keep everyone posted on this, since I know people love to talk about it...who doesn't right?  Can you tell it's been a slow news day around here? LOL!

It may be Tuesday before they try to extubate him again, which is fine with me.  I'd rather take time and take things slow to let him get where he needs to be.  I am anxious for tomorrow because all the doctors will be back evaluating his progress.  Weekend visits are usually MUCH shorter and more brief, so I'm looking forward to what the week brings for us....hopefully by the end of it we'll be back home again =)

6.6.10 - Another quiet morning

It's been very peaceful here the last 24 hours. Liam has continued to sleep through most everything and looks very comfortable. It has been a nice weekend so far, and there is nothing big planned for today so hopefully it will stay peaceful around here.

Liam is almost up to his full feeding amount now. They have him on a continuous feeding instead of the bolus feeds we do at home, but this allows him to get his full daily intake but at a much slower rate as to not fill up his tummy too fast. I am so grateful that Liam has a g-tube. All around it has been a huge benefit for us in the long run.

I am spending my time up here working on a paper flower thank-you bouquet I am making for all our incredible nurses we have had. We couldn't have asked for better care for Liam and I am so grateful we have a hospital like Medical City close by. I know our gift can never express the depth of our gratitude and thanks for all their hardwork, but hopefully it will be a small consolation. And off to crafting I go!

Saturday, June 5, 2010

6.5.10 - Quiet day

 
We have had such a different day today than yesterday. Liam slept comfortably ALL day long. He has stirred only every now and then to stretch his little arms and legs and to stick his tongue out a bit. Other than that he has rested very well. Praise God!...I wasn't sure how I was going to get through another day like yesterday, so the Lord answered huge prayers on both sides of things.


It has been a quiet day as far as poking and prodding goes too. The biggest highlight of the day is he had both drainage tubes and his pacing wires removed. He has had respiratory treatments every few hours, where they vibrate on his chest and sides to break up any congestion and fluid in his lungs and then suction it out (the suction is already part of his ventilator, so this does not bother him). He actually smiled once while they were doing the vibrating near his ribs because I think it must have tickled him! They also started him on a slow-flow continuous feeding of his formula, which he seems to be tolerating well. Liam's heart is doing great, in fact he reached a huge milestone, as his oxygen sats topped out at 100% today...INCREDIBLE!!


Tomorrow should go a lot like today, just keeping him sleeping and comfortable to let his lungs recover and for him to fight the virus out of his system. His temperature is normal right now, so we are praying it stays that way overnight. Other than that, no news for now and that's good news!!

6.5.10 - In the light of morning...

Another early morning at the hospital. Liam is resting very peacefully and all his numbers look good. The bad news is we were told this morning that he does have an infection, hence the temperature and probably the reason his lung collapsed yesterday. He tested positive for metapneumovirus, which is the same virus he was hospitalized for a month ago. So....they are going to do more aggressive breathing treatments today to try to get his left lung back healthy again and to try to get him on the safe side of the virus. Good news is they are going to slowly start feeding him again. I am so grateful he has the g-tube. At least for the pressure and stress of eating issues, we hopefully wont have any problems in that area. This should also help take the edge off a bit, especially since Liam can't take a pacifier to soothe himself since they put the new vent through his mouth instead of his nose... But they are also keeping him pretty heavily sedated too. We shall see how today progresses...

Mornings here have been very peaceful. In fact, I've started having quiet times with the Lord during these early morning times and they have been encouraging and renewing for me. It really has helped at least start the day on a positive note, even of the rest of the day doesn't pan out very well.

"It is of the LORD’S mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness!" Lamentations 3:22-23

Friday, June 4, 2010

6.4.10 - Back up again...for now

Liam is stable now and back on the ventilator. His sats are back up in the high 80's and low 90's so he is recovering from his ordeal this afternoon. An x-ray confirmed that what looks like happened was some residual mucous from the vent tube got inhaled into his left lung when they pulled out the vent. This caused his lung to eventually collapse, which led to the de-sats and Liam having to work twice as hard to breathe. Now that he is back on the vent, his left lung popped back out and is working again. They also did a couple breathing treatments on him to help draw more oxygen deep into his lungs.

Thank you all for your prayers. It was a pretty nerve racking time trying to figure out what was wrong. I was getting panicked because Liam wouldn't calm down and he was getting exhausted trying to breathe. At least we know it is not something wrong with Liam and his healing, just more or less a failed attempt. But they will try to excubate him again in a day or two. He also started running a fever again, ugh! He is already on antibiotics, but hopefully the lab results will come back negative for any kind of infection.

Needless to say, today was a rough day. Unfortunately, I know that is usually how this process goes. I'm just praying and believing this is a little speed bump along the way and that God's healing will keep it's fervent plan going strong in our little Liam. He is a little warrior for sure!!

6.4.10 - Need your prayers...

Ok we are in need of some serious prayer. They took Liam off the ventilator about noon and it's been a hard fight for him ever since. He started desatting back into the 50's and couldn't recover. His little lungs were working so hard. The nurses have tried every procedure to try to get him to oxygenate better, but a recent x-ray shows his left lung has fluid in it and is not pumping air. Right now they are putting him back on the ventilator...

That said, this afternoon has been difficult to watch...Liam has been crying and not settling down. He has had numerous oxygen masks, cannulas and air tubes on and off his face, which he does not tolerate very well...we just need some prayer right now. I tried to prepare myself for the ups and downs we were probably going to experience, but it still hurts when the down times hit.

6.4.10 - A bright beginning...

Liam had a good night and is recovering very well this morning. They turned the ventilator off about an hour ago and they are hoping it can come out soon. The nurse did say it is possible once it is out they may have to put it back in because of his vocal chord paralysis. We do know that the left vocal chord is still good and functioning, so that is encouraging. They won't know how the vocal chords will cooperate together though until they remove the tube. But as far as his lungs go, Liam is able to breathe on his own right now and is taking all of his own breaths.

His temperature got under control last night but they did start him on another antibiotic just in case. They also did some lab work to rule out the possibility of infection. We will not get those results for another 24 hours or so though. He is also still on all the pain meds and IV fluids for now. No word on when feedings will start again, I'm thinking maybe (hopefully) tomorrow.

Liam will also get another blood transfusion here shortly. The doc just came in and said he was slightly anemic, which is normal after undergoing OHS. This will be the first one he will receive post operatively, and hopefully the last :). He will also most likely be placed on an iron supplement for a while too.

Today has been a little harder because Liam has been awake more. When he starts moving around you can tell he is uncomfortable. He can't make any sounds yet, so when he goes to cry you only can see it in his face... It's heartbreaking for me everytime he does it. But the nurse is monitoring his pain level and "movement" very well and has given him doses of sedation as needed to get him calm and relaxed again.

All in all, Liam is a little champ and I am so proud of him. Please keep praying for a smooth recovery for him.

Thursday, June 3, 2010

6.3.10 - Seeing PINK!!!

Liam is resting peacefully in recovery. Suprisingly, I had no tears when I saw him. He is PINK! For all of his life, his little body has been various shades of blue... But no more! And his oxygen sats are constant at 97....a number I never thought I would see!! It is amazing and I am so excited for Liam that he will feel better, have more energy and hopefully be able to live life a little more comfortably.

His recovery is going very smooth. Basically tonight they will just keep him calm and sleepily sedated so that he can rest and his heart can rest a little too. He has opened his eyes a few times and has been somewhat alert and even lightly kicking his feet up, but he is pretty quiet otherwise. It's hard because I want to touch him and talk to him, but that seems to get him more active, so I'm trying to just wait it out here on the sidelines and quietly cheer him on from here.

He was running a fever that has come down some in the past couple hours. Other than that his recovery is going pretty smooth so far. Tomorrow they will begin the process of weaning him off the vent and the pain meds once they feel he is ready.

I know we are not out of the woods yet, but I am SO encouraged. I praise God for giving me the strength, but also for giving Liam the strength and healing he needs to make this ride a smooth one.

6.3.10 - Praise God!!!

Surgery was successful!! Praise God! Liam is now in the cardiac unit and we should get to go back and see him shortly. The surgery went perfect and the echo looked good. The next step will be to wean him off the ventilator either later this evening or tomorrow morning depending on how his heart and lungs do post-op.

I am anxious to see my baby boy!! It's going to be hard to see him hooked up to everything again...part of me hopes he is sleeping when we see him so at least I'll know he is comfortable.

Thank you to all of our friends and family who have kept us in your prayers...we have been blessed today!!

6.3.10 - Still in surgery...



The nurse has updated us a couple times since my last post. Everything is going great. Dr. M has already patched his VSD, taken out the shunt and patched that opening and is working on putting in the valve. After that, they will slowly start finishing up, taking him off the bypass machine and closing him up. They will then do an echo to make sure everything is in working order before they take him up to the cardiac unit.

Waiting can be stressful...but I did find a nice soothing comfort to help pass the time...Medical City just got a Society Bakery in the lobby. A bakery is a dangerous place for a momma with a baby in surgery. I ended up getting a "sampling" of 6 different cupcakes, brownies and cinnamon rolls...and they were delicious! Huh, I guess I do eat when I'm stressed!

The pic above of Liam and I is from this morning while we were in the holding area before they took him back to the O.R....That was the hardest part of the whole week so far. Dustin prayed over him while I spilled tears on his little head...A sweet moment indeed, but one I don't want to experience again. However, Liam will need more surgeries to replace his valve as he grows, so this unfortunately will be a recurring moment sometime in the future...hopefully in the very distant future.

6.3.10 - Surgery is underway...

Surgery is underway. They took Liam back at 7:00 am on the dot, and the nurse just came out and told us they just made the incision. She said it will take a little while to cut through the scar tissue and get through the chest bone, but that Liam was doing great so far.

Liam had an ok night. He slept as much as he could with nurses coming in and out to check him all night. He woke this morning about 5 am bright eyed and bushy tailed, babbling and giggling to himself... That made me smile. We had about 30 minutes of snuggle time before he had to get a scrub bath and then we headed down to the OR about 6:30.

They are estimating the surgery to be finished by 1:00 pm or so. I'll try to keep posting as we are updated every hour or so by the nurse.

Wednesday, June 2, 2010

6.2.10 - End of day 1...

Mentally, physically and emotionally I am spent right now...and it's not even surgery day yet.

Liam has had a little bit of a rough recovery from the cath. He is still on 4 liters of oxygen and had to undergo a steroid shot and breathing treatment for some respiratory issues. The nurse said it's common to have some lung congestion after anesthesia, so it's nothing to worry about, they are just monitoring it to make sure he is getting enough oxygen.

Liam has been very uncomfortable, irritable and just not himself...it's really hard to handle sometimes because I just don't know what he needs and how to help him. Liam is a very easy baby at home, so this took a toll on me today...I'm exhausted in every way possible!!

We finally got a feeding of pedialyte in him about 6:00 pm and right now he is taking a small feed of formula with some more pedialyte. I'm glad he is able to hold something down, because I really think he's just been hungry all afternoon.

Oh ya, we did meet with Dr. Mendeloff (Dr. M) and he said everything should go perfect tomorrow. Basically, as we were told before, he will put in a pulmonary valve and conduit, close his VSD (patch the hole) and then remove his BT Shunt. All in all the surgery should take about 4 hours. They will put him on the heart-lung bypass machine and he will be intubated (ventalator). They did not see anything from the heart cath that is concerning or suprising, so the repair should be straightforward. After surgery, Liam will go to the heart unit in the PICU for a few days, and then to a normal recovery room before we go home.

Today was pretty difficult for me. Liam had me worried for awhile when it seemed like he was not recovering very well. If this is any gauge on how tomorrow will be, I'm scared. I really don't know how the Lord's gonna pull me through to be strong....

I pray tonight for our little Liam. May the Lord keep him warm and safe in His hands. Blessings for Dr. M and all the doctors and nurses whose hands will be with Liam, that the Lord guide them and give them wisdom. Above all else, we pray for God's will and the strength, wisdom, peace and courage to carry it out in Jesus name. Amen :)

6.2.10 - Recovery room...

Heart cath went fine. Liam is having a little trouble getting his oxygen levels to stabilize at at least 65, so he is on about 4 liters of oxygen right now. He also hasn't been able to hold much food down..we fed him about 2 oz of pedialyte while he was in recovery and he threw up. So not sure about how feedings will go the rest of the day... At least we have him calm and asleep right now.

The cath went great. We have not met with the surgeon yet, but from what the cath doc said was they are not expecting any suprises tomorrow in surgery and that it appears pretty straight forward from a surgical standpoint. That was great news!

Dr. Laird (cath doc) is going to stop by in a little while to see if they are going to need to move us to the PICU overnight due to his low O2 sats...will post more tonight after meeting with Dr. M (surgeon).

6.2.10 - Heart cath in progress...

Liam is back in the cath lab now. The procedure should take about 2 hours. Liam fell asleep about 20 minutes before they took him back, so at least it was a peaceful send off. After the cath, we will meet with Dr. Mendeloff, the surgeon, to go over the plan for tomorrow. They did tell us that Liam will be first, so they will take him back about 7:00 am tomorrow morning.

I am suprisingly holding it together well this morning...hard part will be when he starts waking up from the anesthesia this afternoon...long day... Stay tuned...

6.2.10 - At Medical City

We are here at Medical City waiting for Liam to go back for his heart cath. He just had an x-ray of his chest done and now we wait. Liam is very happy this morning, hungry, but happy overall.  We were only allowed to give him clear liquids this morning, so I'm sure he is hungry right now... And probably will be for most of the day.  I'm not sure when he'll be able to eat again.

They did move up his cath to 10:00 instead of 11:00, so it shouldn't be too much longer... Will keep updating as the day goes on!

Tuesday, June 1, 2010

6.1.10 - All is quiet on the homefront...

Liam is sleeping peacefully, little does he know what is to transpire through the week. Poor little guy. Sometimes I wish he were older so at least I could explain to him what will happen and he could be prepared...it breaks my heart that he has no idea. But it also makes me feel better knowing he won't remember any of this either. Or at least, that is my prayer for him.

Well the vomiting came back at his 5 pm feed...He seems perfectly fine otherwise. His 9 am and 1 pm feeding went fine, so I don't know what is going on in his tummy...I am praying his next couple feedings go fine, so he can be rested for tomorrow.

Anxious is all I can say right now...I tried watching a CHD awareness video today that a lady from my online support group had made...big mistake. I quickly turned it off, thinking, what are you doing??...my scary thoughts almost ran rampant in my brain. I guess I didn't realize it would be "that" kind of an awareness video...about her personal experience. It's just I know that all my emotions are right below the surface and I am terrified they will just pop up unexpectedly and I'll lose it. I know I will be OK and I know the Lord's plan for our family is to give us hope and a future...I just pray my earthly self will align itself with His word and not my own.

Lots and lots of prayer tonight...along with the packing =) Packing prayer!

6.1.10 - Time together

Liam and I are spending the whole day together relaxing and playing - and I am snuggling with him every moment I get...I won't get to hold him very much (if at all) this week and that is going to be really hard =(. The heart cath is scheduled for 11:00 am tomorrow morning and then the surgery sometime Thursday morning. It is a little surreal that his surgery is finally here...We have waited 8 long months for this moment and I think we are ready...Couldn't say that for sure a month ago, but now it seems the time. God knows what he is doing!

Speaking of 8 months, that is how old Liam is now! I can't believe it - boy, how time flies!! Other moms tried to tell me how supersonic speed time goes by when you have kids, and they sure are right! Liam is growing bigger and getting smarter each day...he is developing so fast right now too...crazy the things he picks up quickly and just starts "doing". Like throwing a ball back to me in playing catch - I'll try to post a video of this tonight as it is pretty amusing - he is really good at it!

Liam has had a little problem with some throwing up lately...not quite sure why. Most of the time it is when he is awake and moving around a lot while he is eating when it happens. It is a lot better if we can get him to nap while he is eating so he stays calm. I know his tube is a big component to that, just something that a lot of tube kids experience I guess, as well as some normal babies too as my mother explained =) Not too worried about it as it is not happening every feeding and is not a significant amount as far as volume goes. Just doesn't make him very happy and creates more laundry for me =) Just hope it doesn't become an issue after surgery...

Stay tuned...a LOT more posting to come this week!

The LORD bless and keep you, may His face shine upon you and be gracious and give you peace. Numbers 6:24