So long ICU

I have completely forgotten to blog during this last week, which has seemed like a blur to me. Since I last wrote, Liam has had both chest tubes removed. On Friday, they took out the right and immediately, I held him. For the majority of the day, we just rocked and stared and cooed. It was great.

Over the weekend, his left chest tube slowed quite a bit. Alex came up Friday night after work and when Liam woke up and saw him, he immediately began to smile and then proceed to jabber. I think Alex was given a talking to for leaving! It was unbelievably adorable. He had a good weekend, although the oxygen went off and on all weekend.

On Monday morning, they decided it was time to take the left tube out because it wasn't producing any fluid. This was also after twice during the middle of the night part of the tubing came off and air got into his lungs. So while we were hoping it would stay in just to be sure, it was nice not to worry about the actual tube moving around on us again. However, since this came out, fluid has built up on that side. In the meantime, they are changing his direutics from mouth to IV which seems to be stronger method of getting fluid out.

Since his first dose last night of the IV direutics, the xray did look clearer. We will continue with the IV type until his lung looks dry again and then go back to the oral medicine. I think we will end up coming home with a few medications to treat this over time. Pleural effusions take time to go away but we are at the point where it looks done, as long as we continue to use medicine. Thats exactly what we want.

We were also stepped down yesterday from ICU to the CCU, cardiac care unit. I am a little apprehensive about this but its because it was nice having 1 on 1 nursing and all the attendings became our extended family. If we had a concern, they came right over. In CCU, its for kids who are stable while they wait for a heart transplant or more surgery or those who are waiting to be sent home. Nurses have 3-4 patients and its more of a I need to go grab one to get help. Its good to know they think he is stable enough to be here but at the same time, I don't feel completely comfortable.

Yesterday, he was having some breathing issues because of the fluid and a resident was paged at 5:30. He got there at 7:30. That is a long time to watch your son struggle to breathe. Liam still is having some trouble but doesn't need oxygen. Its just the fluid in his left lung is making his chest\tummy deflate some. He is comfortable otherwise and clinically looks good, but my head goes back to the nightmare we had before where we kept saying his breathing was ok when it looked like this and less than 20 hours later, we were back in ICU and then on a breathing tube. I already warned the resident that I may seem like a bitch but I was not allowing the same situation to happen again. Lucky resident, huh?

So while I am trying to be happy we are in a new unit that brings us closer to home, I am keeping a hawk eye on Liam's chest as he breathes. The other good news is that he is allowed to wear clothes again. He is just about 10 lbs, 4 oz now and the 3 month size fits well. Its nice to see him use some of these adorable clothes he has been given! We rocked the frogie outfit yesterday, today will be a cute blue striped one my parents brought down over the weekend. Little man is spoiled..but he deserves it!

"Liam has proven to be his own man"

While this picture may not look like progress, it is. One month ago he had his first OHS. 2 weeks ago, he had a second life saving OHS. We are getting closer to home, I can feel it now. There is true progression each day.

So I feel like every time I blog, I jinx Liam's progress. I tend to stay upbeat and positive, because I truly only want positive thoughts, but as soon as I submitted my little Valentine's post, the you know what hit the fan.

I had been playing with him for about an hour on Sunday afternoon after my Mom and Dad went back to NJ after spending the weekend with us.He was getting sleepy, so I picked him up to rock him to sleep. I look down as I stood over the crib and notice his Blake chest tube, which sits in the center of his chest, was hanging quite a bit lower on his legs than normal. I laid him back down and asked the nurse to take a look- thank God. A few minutes later as we waited for the doctor, it began oozing the fluid it was originally collecting inside the tube, meaning the tube definitely had moved in the insertion area on his chest. The suction was still working and the doctor ordered an xray to see if it had moved inside of him.

The way the Blake works is it is one long tube, one end started in the left lung cavity, looped through the center, over to the right lung and then out of his chest. Each area had a small hole where the fluid would collect in the tube and suction out into a bulb at the end, which was what laid on the outside. Well, the xray showed the tube was no longer even in the left side of his chest cavity. The surgical team came to take it out and said the xray also showed that air had been getting in to his lungs through the insertion hole. The doctor said the fluid was not at a significant amount so they did not think they needed to put more tubes in, they were going to take it out in a few days as it was.

But as luck would have it, the big risk of pulling any chest tube out is collapsing a lung and unfortunately, yet another complication added to our list as his right lung collapsed. It was a scary hour for me, because I was sitting down the hall, watching all the flurry of activity and scared that I somehow did this to him. The doctor assured me that the tubes do come out and it wasn't, but I was the one holding him as things went to hell. Because of the lung collapsing, they immediately had me sign consent forms for them to put a different chest tube on his right side to get the air out. There was a small pocket of air on the left but that lung was still stable.

The difficulty at this point was the air being in a tiny space and that both sides would have scarring from the first set of chest tubes. At the end, they only put it in on the right side because the left was too dangerous and the air was not a risk. As soon as the tube was inserted, the air came out and his lung came back up.

I had held it together pretty well for three weeks but this hit me hard- we were so damn close to the end of the road for him and yet, another blip on the radar. I got a lot out of tears out on Sunday..in fact, I think I terrified the doctor who has been with us this entire time. I did ask about prognosis and what next steps were, and one of our two favorite doctors, Dr. Bird, made a pretty funny comment about what most kids would do followed up by, "although I think we all know Liam has proven to be his own man". Happy Valentines Day to me.

Sunday into Monday was one of Liam's worst nights, hospital or home. He screamed most of the night, mostly due to discomfort and that they weren't feeding him. They wanted to wait to Monday morning to make sure the left side did not need a tube, if he did, he had to have an empty stomach. Thankfully, they allowed him to eat..and by bottle! It was the first time in three weeks and he kicked ass. He would eat 2 oz most meals and then full bottles here and there. It was a great relief!

On Tuesday, he woke up working a little bit harder to breath. That morning, we were moved from our private room back to the open pod to allow an older kid to have some privacy. I packed up all of our stuff and by the time I got back to his bedside, the team decided it was time to put in the chest tube on the left side. That side was filling up with fluid that had no where to go. On the right side, it was draining a very small amount. So on Tuesday, he had his 5th chest tube this stay put in.

Going back to 'being his own man', our other favorite doctor, Dr. Naim came to me after the procedure was over with a concerned look which of course, made my heart drop. She told me he was ok but despite the large amount of sedation he had, he never fell asleep. In addition, he watched the entire procedure with much curiosity. Sigh. My 3 month old little man is more intrigued now then scared of having metal instruments placed in him. Not a good sign for my future endeavors as he gets older.

Today was a good day for Liam- he ate for me, 3 oz at a time, played and even smiled at me first thing this morning. I held him for about 5 minutes but he was in pain and we put him back down. We had a bath and a good long nap, something he needed. My dad came down to visit after work and it was nice to see Grandpa playing with Liam again. My mom and grandma are coming tomorrow night, then Alex is back Friday after work. The days actually fly by here. By the time I pump, feed him, take a shower, or grab a bite to eat, the cycle begins again. He is much more awake here than he is at home and we play, read, stare at one another, quite a bit. Hopefully once we get home, he can sleep better in a much more quiet place!

On a sad note, this is a children's hospital with quite a few sick little ones. We have become friends with many parents, some living here full time with their kids waiting for transplants and it hits us, we have it good, despite all of this. I found out this evening that a family was told their little girl might not make it. And throughout the last 24 hours, several kids, including a 10 month old baby of new friends of ours, have been coding. Please just say a quick prayer for all these little innocent kids- its been heartbreaking to watch my own son go through this, much less be of much use for a parent who has it worse. I try to remain positive for my sake and theirs, but I know the power of prayer and faith is strong.

Healthy Heart Day!

Happy healthy heart day to all! Alex left this morning to head back to work, but shoveling out at home first and giving our amazing neighbors, Dave and Lauren, a break from being adopted dog parents. It will be good for Ike and Penny to have Alex there to spoil them a little.

Liam is doing well, his oxygen came completely off yesterday! He has been keeping his levels up so far and is tolerating it well. He is on full feeds through a feeding tube in his nose of a special formula that is helping with what type of fluid he is draining, however, Liam has been pooping more than he is draining now. His tummy is talking to us quite a bit, he is not happy with this gas issue. Its expected though, its the first time in 3 weeks he has had food in his stomach. Hopefully in a few days, that end of things calms down. Alex hopes so too..since Liam had a blow out on him Thursday night. It was the first time in a long time I laughed until I cried. Even the nurse joined in too.

His draining has turned around so much in the last few days. A week ago, he had between 900-1200 ml out of his chest. Yesterday, just 300 all day. His heart rate has risen a little bit overnight and the doctor seems to think its just because he is getting dry because of the drainage. They increased his fluids for a few hours and that helped his heart rate come back down. He literally is only getting one fluid in other than food, and a little baby Valium, but nothing else. Two weeks ago, he was on over a dozen infusions consistently and had 4 IVs on every hand and foot. My little man has one that is used only a few hours a day and is otherwise, feeling good.

I could ask for nothing else but a healthy heart baby and I got my wish..we are getting closer to getting his chest tube out. Hopefully over the next few days we will see no drainage and they can take it out. Can't wait to rock him to sleep against my chest when that happens. Its his favorite position and its been a while since he was allowed that. I must admit, Liam is going to be one spoiled kid..but he deserved it. Love to all of our friends and family, enjoy today and don't forget, its CHD Awareness Week and Heart Month!

Liam turns 3 months old today!

No major updates to report- Liam is still draining but its less, and he is peeing more, exactly what the doctors want. He is on full feeds by NG tube through his nose and not much else in terms of drugs, etc, just a few little things. We were moved to a private room in ICU which is pretty nice for him, its quieter and for us, its private. No more moving our things around every day between car and room and Ronald McDonald House. Most important, it means the doctors feel comfortable with not having him in a pod with access to their area.

So for now, its a pure waiting game. We are able to hold him 2-3 times a day and rock him. He has been laughing and smiling, so much, its been a relief to us because its a great sign he is feeling better. Hopefully we aren't looking at more than a few weeks to getting better and home. Fingers crossed!

Its CHD Awareness Week..

What is a CHD?
by Shannon Arnold Smith

What is a CHD? You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What's a CHD?"

I could quote terminology. ..
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin, Captopril. .. .
It's wondering... Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?
It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician. ..
(She knows me by name...I'm a mom on a mission)
It's winter's homebound... and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying.. .it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected.. .
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD

Happy Tears Day

Short and simple- we held him. It was like holding him the first time after he was born but just a little bit sweeter in some ways. We each spent about 30 minutes rocking him, and he just stared deep into our eyes, even tried to talk to us a little. Each time we kissed him, he would arch an eyebrow or even crack half a smile.

Alex went back to the Ronald McDonald House and at 10:30, I went to say goodnight and the nurse let me sit there and rock him to sleep. Despite all the wires and chest tube, it felt almost normal. When his wound gets better and the tube comes out, he will get to sleep in his favorite position, chest to chest, looking up at us.

And I sat there tonight laughing that I married my half Chinese guy and there is this golden red haired child with big blue eyes and pink skin looking back at me. He is my hero, my own "Braveheart".

nap before the big game

long day

Within 12 hours, we went from good news to the bottom of the ladder again back up to a sigh of relief. Its amazing how many ups and downs one can have when it comes to your child.

Good news we began with- there is no significant fluid build up in his lungs and he is peeing more. More pee means less coming out of his chest, which is taking all his nutrients. We are on the right path says the doctor.

Then my parents came down, Mom made cookies again to sweeten the staff up towards Liam, it definitely works.

Bad news mid day-We had noticed a pretty bad bruise on his right arm last week and during the surgery, they used his right wrist for something called the art line, which draws blood from the artery without having to poke him every time. It was actually a godsend since they check labs several times a day. It ended up coming out yesterday, it was quite bloody and I about crumbled when I saw all of the blood all over him. Since it came out, we noticed from the elbow to his fingers were mostly bruised. And his ring and pinkie finger are completely dark. The concern is there might be a cut off of blood to his hand. In addition to all of this, the CPAP on his nose created such a nasal breakdown, it looks like the entire front of his nose has been cut. Its just one freaking thing after another.

They called the plastics fellow, who is from plastic surgery, to take a look. He tells us " I don't think he will lose his hand". Really, is that the bedside manner they teach you? They are going to follow it, ultrasound his arm tomorrow to see if he has any clots causing issues in there. Its just another thing to add on top of it all. With his nose, if it doesn't heal correctly, we may need to do a skin graft about 6 months from now. Seriously, little man is just getting the crap kicked out of him. But the funny thing is, he is being an angel, looking around, showing us a lot of personality.

More bad news which turned out okay- the doctors are getting concerned that the heart isn't the cause of the fluid, which is the main issue he faces right now. The good news is that his heart function looks great, two open heart surgeries later. So of course, we are now at the point of losing it because our son is draining out everything they have given him and they don't know what the cause is. And the doctor we feel best with admitted he is now concerned. So he calls our surgeon who says we just need more time and he thinks it is the original pleural effusions still draining from before his second surgery. That is good news to us and the best news we have had today. If this is something else, it would be heartbreaking. We want this to be treatable and not a big guessing game. As it is, we are going to be here for sometime, in ICU and that's hard enough.

Its been one of those days where we sit here questioning everything, the why of the situation particularly. Less about why us but why Liam, he is so little, pure and just a beautiful little baby. What can be learned through this, there has to be a reason why Liam was chosen. I can't wait to see him grow up and learn why, but these kinds of days are challenging my faith, everything I've always believed in.

Snowy Saturday

Liam and Glo-worm have developed a weird ET like relationship. It calms him immediately and he can just stare all day at Glo-worm.

Not much to update- his chest xrays this morning looked better than yesterday which is a positive sign. Doctors think we will be here still for a while until he starts to slow up on drainage, which definitely hasn't happened yet, he is draining 600-800ml a day. I'm getting more anxious to actually hold him and feel his skin against mine, and from the looks of it, he is too. Its hard to get the stares, cries and then, the sigh of defeat from the little man. He has a line that feeds directly into the right atrium and as long as he has that, we can't hold him.

He isn't on much right now in terms of meds compared to last week when we didn't know what was happening to him. Liam has developed some small clots so they have him on Heparin to help thin it out. Because of his chest drainage, he is losing proteins, platelets, etc so they are trying to replace those as they come out but other than just plain IV fluids and some Valium for discomfort, he looks better than he did before the second surgery, which gives us hope. At that time, he had 4 IVs and about 12 different meds going in. We are on one IV and one main line now.

We are starting to climb the walls in the are we ever going to leave sense. Its so hard to watch him, losing weight, not the same personality or spunk as he had when we first came. He is definitely going to need to start eating to get back to his chubby wubby status. Hopefully the doctors will let him start feeding sometime over the next few days, he hasn't had a bottle since last Monday. I prefer my baby with little baby fat rolls! Thanks to all for the prayers..we asked the chaplains here to visit with us as well and we will take the love and thoughts from all.

Thursday, 2/4 11am

Post Op #2

Liam ended up going down to surgery yesterday first with Dr. Spray. We rolled him down in his bed at 7:30am and I asked the doctor if we could at least kiss his head, since we couldn't hold him this time. My parents kissed him, then Alex and I was allowed to hold his head and kiss him. As soon as I did and whispered a few encouraging words, he began crying so hard and tears were just everywhere, between Liam and his parents and grandparents. It about broke my heart. I snuck his teddy bear in and told the doctor Patton would be watching.

We met with Dr. Spray until about 8:15am and he explained what he thought happened. Where the patch was, basically in the corner of the four chambers, instead of blood flowing across the small hole they left, which is absolutely routine, it was going into the upper chambers instead. He wouldn't know until he went in and saw the heart, but would tell us when he was done.

Our group headed to a lounge area and waited. Our nurse came down at 9:15am and told us that they were already in the chest, which was good news because the surgeons had concern with going through fresh tissue so shortly after the last surgery (they usually wait at least 2 months..this was 2 weeks to the day that they had to go back in). They could see the patch and were about to put him on bypass. A few minutes later, Alex's parents arrived.

We weren't expecting another update to about 10:15 when the nurse came back in about 9:40am and said they were done with the repair and just about to take him off the bypass machine. By 10:30am, we were in the consult room waiting for Dr. Spray. He got there about 10:45a, and basically the original patch had the hole as we know but when the heart expanded, it went from 2 mm to almost 5 mm, tearing across. This was causing the exuberant amount of blood flow into his heart and out into his chest cavity. Poor little man. They reinforced his patch with a particular type of stich and he was on the bypass for only 20 minutes. Dr. Spray was very happy with how surgery went.

It took some time for us to see him but he was out of it most of the day. We had a celebratory lunch at Chipotle, yay, no cafeteria food. Both of our sister's came down in the afternoon to see the little guy. Both sets of parents and Alex's sister headed back while Alex, Heather and I just hung out. I even got Heather to do her homework. Success.

He was awake last night around 9 and just was worming around, dancing, trying to move but he was so sedated I don't think he realized he couldn't move very well. Heather and I went back to the Ronald McDonald House around 10 and played Are you Smarter than a 5th Grader and we are not. Oh well.

Overnight, Liam's temp dropped a little bit so he had a warmer for a little while and the doctor decided to leave the breathing tube in to later this afternoon, allowing him to rest a little bit and take some drugs to fight any anti flammatory issues from having a breathing tube. Heather and I are hanging out in the ICU with the patient, Daddy is working out, showering, getting some normal sense of life back. The doctors are letting Liam take it easy and doing a much slower return to normal, which is perfectly fine with us. Thanks again for all the prayers..just need to get through a solid week or 10 days of good recovery, and then I will breathe again.

Tomorrow

We will be second tomorrow morning for the surgery, first one is slotted at 7 so Liam will probably go around 10am.

We got to see a video of yesterday's procedure showing us the issue today. When they inject the left side of his heart with dye, the right side should not light up at all or minimally. About half, if not more, lights up, meaning that hole is not tolerable and a stitch may have come loose due to the pressures. This extra blood flow causes all the pressures to rise, which is forcing the lymphnodes to leak and the extra blood is then flooding his lungs- before the surgery, he had 80% flow, and should have 100% now. He is at 400% of blood flow which is why his little body cannot get rid of the fluid or breathe well. All is expected to really instantaneously slow down with this surgery.

OHS #2

This is not a post we thought we would be writing. The cath showed that the small residual hole they left behind which typically balances out the two chambers has gotten bigger, most likely the patch tore because his pressures were too high. Those pressures are still too high and is causing all the fluid issues and everything else we have seen since Wednesday.

They called our surgeon who is traveling and he thinks Liam is stable to wait until he returns on Wednesday so he can do another open heart surgery to fix the tear. He knows where everything is, why things were done a certain way, etc If something changes between now and then, one of his colleagues will operate immediately.

While this seems like a set back, it is an answer, something we haven't had in almost a week as we have watched our son get worse without cause or knowledge to effectively treat it. Without this procedure, the worst would happen. The risk of not doing the surgery outweighs the risk of the current day to day care. We are both pretty calm and almost excited to see our little guy be himself hopefully by the end of the week. I dread handing him over again but he needs this surgery and I want him to thrive.

Thank God they found the issue and were able to point to something directly and say this needs to be fixed. We were told that would likely not happen. The power of prayer is on our side and that will help us all get through this chapter. Thankfully, only Alex and I will remember this time.