Well, we are having more issues with low blood sugars in our little man. Apparently, that is why he has really long periods of being extremely fussy and inconsolable. I am grateful for that!! Now, the question is what do we do about it.

The new medication he is on for his heart rhythm issues does have a tendency to lower blood sugar. However, it seems to be the general consensus that the low blood sugar is probably not related to the the meds. My guess is that they will put him on a new mediation to help regulate his blood sugar. We will just have to see what they decide.

The best news is all this decision making can be done out of the icu!! As long as they decide to keep him on his current mediation for his heart rhythm, we will most likely go to the floor today. :)

Well, we are once again back in the Cardiac ICU...this time for real.  A lot has happened over the last few days.

Yesterday, the team decided to do another echo (or ultrasound of the heart) to check Joshua's heart function.  He has been really symptomatic...meaning he has had some really heavy breathing, working really hard to breath (called "retracted breathing"), REALLY sweaty (like...really...sweaty pig boy!  I have given him a sponge bath every day and he still smells!), and pretty pale and clammy.  These symptoms made them think that he was having decreased heart function or maybe more obstructions in his veins or arteries.  Hence...the echo.

They decided to do the echo in the ICU...not because there was much concern but because the radiology department was full and they would have to wait much longer to get a time slot.  The ICU knows Joshua, so it was a great option.  The echo went great...Joshua had to be sedated for a while, but only with two small doses of Adavan (Joshua's drug of choice).  The results of the echo actually turned out much better than they thought they would be, which we were very happy about (although, it still makes us wonder why he was so symptomatic for so long...still working on that mystery).

So, we were feeling good by yesterday evening.  It looked like it would be another quiet night when Joshua decided to have another arrhythmia.  This was actually the same arrhythmia he had the very first time.  His heart rate jumped to 220 beats per minute (it had been sitting in the 150s before) and his EKG was abnormal.  After a hour of stumbling around to get it fixed (BIG difference between the floor and ICU...), they got him hooked up the the 12-point EKG and got the dreaded "adenaseen" medication (I have NO idea how to spell that).  Right before they gave it, however, his EKG started looking more normal, but his heart rate stayed in the 220s. 

We finally got a bed in the icu where they started to give him a medication called a beta blocker. This med actually blocks some of the electrolytes that help the heart beat. By doing this, it slows the heart down and hopefully decreases the chance of the arrhythmia from happening again. This was done through his IV and within another hour, he was looking much better with a heart rate of 130.

Now, the plan is to decrease the IV beta blocker and start him on a new oral version. Also, we will have to address the other symptoms at some point. Hopefully, we will be out of the ICU soon.

In the mean time, here are some pictures of what we have been up to.

Our little man sleeping.  I love this one!!

This was during his sedated echo-when we gave him his medication (Adavan), he  moved into this position and no matter what any of us did, he stayed in this position.  Since this was a good position for the tech, we let him be. He just looks awkward...

Photo shoot! Top left-half smile, top right: "the stink eye," Bottom left: Cranky pants, Bottom right: content

Joshua looking at his toys!

We love having visitors!  Here we are with Aunt Rebecca and her good friend, Taryn.

We are out of the Cath lab and back in the Cardiac ICU.  The cath went a lot better than previously thought.  Going into the cath lab, it appeared that the pulmonary veins were narrowing, thus causing the heavy, fast, and deep breathing he was displaying.  With the 4 pulmonary veins closing off, blood is unable to get from the lungs to the heart.  We had no clue what news the cath procedure would bring or the ultimate outcome would be.

Upon word the cath procedure was done, we spoke with Dr. Martin.  She was the doctor performing the cath.  She instantly told us she had "good news" for us.  She proceeded to tell us that only 1 out of the 4 pulmonary veins was closing off.  This was much better than all 4 of them closing off--as previously thought and feared.  Although it is not great news that the vein is closing off, it is better that only one of them is doing so.  The body is able to function with 3 of the veins if the one does close off.

During the cath procedure, Dr. Martin did balloon the vein, re-opening it.  The probability of the vein re-closing is very high.  The time period is unknown for when/if it does/will.  We will probably be watching the vein closely for weeks to come.  Unfortunately, there probably won't be any visual signs of it closing off.  As for the heavy breathing, it is believed to be due to a lower dose of Lasix.  They have increased the dosage and his breathing has improved significantly.  We will be staying the night in the CICU, for monitoring purposes.  Tomorrow, he will be evaluated and hopefully will be able to be home in a short time!   

Well, we are still in the icu...I am starting to feel like a broken record since I am saying that so often. After a chest x ray this morning, they discovered that his lungs are looking wet and hazy again. That worried them since he had such problems with them for so long. So, we stay.

Fortunately, Joshua doesn't seem to be showing any symptoms of poor lungs...no struggle to breath, no desats, no retracting...so they are not putting him in any extra support at this time. However, if his x ray does not improve tomorrow, they may need to put him back on the high flow...

Needless to say, we are a little frustrated, but I am grateful these are just small hiccups and nothing to serious keeping us here. We are going to stop planning on leaving and just make plans to stay until he is ready to go.

In good news, his glucose levels have seemed to improve, so hopefully we are past the worst with that issue!

We have discovered he LOVES the swing :) This one they have here plays classical music as well, which I also find very calming.

Well, one more night in the ICU...I hope. They still wanted to watch him one more night because of his glucose levels and to make sure the new medication for his arrhythmia is working. It is hard to see him doing so well and us not moving forward, but if there is anything I have learned through all of this is that it just takes time...

We had a really nice chat with Logan over webcam today. He is still in Boise with my parents and he is having a great time. I realized how much he has grown up over the past month...and how much I have misses of this stage. I feel so incredibly blessed to have a son that does so well with all this craziness, but It is hard to see how much he has grown up with out me around. I made a vow today that I will never take one moment with any of my kids for granted. Each moment is so precious.

We were hoping by today that we would out of the ICU, but Joshua decided to make other plans.

Over the past 3 days, Joshua has been having these spells of irregular heart rhythm. From what they can tell, it is different then the ones he had a while ago and seem to be related to him having two SA nodes in the atria of the heart (look it up...pretty fascinating). His heart rate gets fast, he gets sweaty, limp and his EKG is very weird. They are trying to figure out what is causing all of this so they can treat it. Hopefully it will be something simple.

Another thing that showed up this morning was his glucose levels were pretty low. After testing it a few times and it still being low, they sent a bunch of labs in to see why that is happening. Hopefully that won't add any more complications to this recovery.

Joshua is such a sweet baby. When you look into his eyes, he has such wisdom and love in them. I feel so blessed to be his mom. Hopefully we will be out of the icu soon and on our way back home!

One day, one of our nurses put him in this cute sleeper for the day.  It was so good to see him in real clothes and look relatively normal!

This is him getting is Echo done.  It is basically an ultrasound of the heart where they check function and flow. Everything came out normal.  This was our first experience with have Joshua sedated for his echo, at least with us in the room.  I was not really happy with the sedation medication they gave him (it was called Ketamine...for those of you who know), since it didn't knock him out very well and he had a really hard time coming out of it.  He was really mad and it took a little longer than I would have liked.  I hope next time they can use something else.

In the mean time, we are having a lot of snuggle time!

Yesterday I finally got to hold Joshua for the first time since before his surgery.  We were not allowed to hold him for a lot of reasons, but the last thing that was keeping us from being able to was his central lines.  These lines went directly to the heart and there is a high risk of infection, so we have to limit the amount of time holding and touching to decrease the chance of them getting infected.  However, we don't have to worry about that anymore because they got taken out yesterday!  So, I spent the afternoon snuggling :)  It was awesome!

Welcome to the life of a heart baby...two steps forward, one step back. That has been the story of our life the last few days.

Our last post was full of positive steps forward...medications down, tubes out, wires out, good stats. However, we have had a few steps back the last few days.

One, that darn breathing!! One of he side affects of a major surgery is the build up of fluid on the lungs. Joshua had quite a bit and it even caused the bottom part of his right lung to collapse a little. Since they extubated him, they have been trying everything to get that lung healthy. Right now, he is on a c-pap machine, just like someone with sleep apnea. This machine pushes air with high pressure to help keep the lungs open. You can tell how he feels about having a tornado blow up his nose in the picture below.  It does seem that it is not getting any worse, but it is just taking forever to see any improvements.  I really think this is going to be what keeps us in the ICU for the longest.

Darn C-Pap machine!

Another scary thing that happened was an irregular heart rhythm.  When this happened the first time, it was one of the scariest days of us being here.  He was getting his breathing treatment when our nurse noticed his heart rate above 220 (normally, it is between 130-160).  When it didn't come down quickly, she called the doctors in and they noticed the EKG (you know that squiggly line that shows your heart beating...that actually means something!) was abnormal.  He was having something called SVT.  Basically, the upper part of his heart was beating faster than the bottom part, so blood was not circulating properly.  In order to get it back to a normal beat, they had to inject a medication that basically stops the heart for a millisecond and then it starts beating again at a normal rhythm.  When they use this medication, they have to be ready in case the heart does not start again.  So, they brought the "crash cart" right outside the room.  This is the cart that holds the infamous "shocker" so they can shock the heart back in case it didn't start on its own.  Fortunately, the medication worked just like it was suppose to.

You can imagine I was a little overwhelmed with all of that, since I was sitting in the room when it happened.  I spent the rest of the day decompressing with music and watching TV...and it really did take all day to get my heart rate down and my mind to stop racing.  It definitely made me nervous about life at home with this little guy...when I don't have the nurses, doctors, and monitors to tell me what is going on.  But, I guess I will just have to trust that the Lord will help me with all of that.

Anyway, they were able to figure out what happened with his heart.  Apparently, Joshua's heart has an extra piece of tissue on the edge of his atrium that conducts the electrical impulses of the heart.  When the heart beats just right, this extra tissue gets the impulse and cases the atria to get into an abnormal beat.  The cardiologist has him on a medication that decreases the chances of this happening again, but he is monitoring everything by having a 12-point EKG done every day.  He is quite the looker with all the leads on for that...

All the leads for is 12-point EKG.  I sort of think he looks like something out of a comic book...you know the bad guy in Spider man 2?

Octo-man!

The breathing tube came out this morning!! HUGE milestone! He seems to be tolerating life without it pretty well. They will still keep a close eye on him to make sure they don't need to put it back in. So far, he is doing great :)

Wow...the last 72 hours have been some of the best Joshua has had so far!  They have removed all his chest tubes, his catheter (hurray for changing diapers again!!), and his pacer wires.  He is WAY down on medications he needs and cuts them down more and more each day.  The hardest part for me to watch is them taking him off the pain medicine. Apparently, it is very easy for them to get used to taking the medicine and they can go through some mild withdrawal symptoms.  Even those seem better today, since they started cutting back a little slower.  All in all, things are looking so good!

Wide awake! He is awake more and more.  All the nurses comment on his bright eyes :)  I just love that I can see those eyes again!  The more they take away his sedation, the more I see my sweet boy come back.

They were able to take the bandage off his chest incision.  Check out that manly scar!  He will have an awesome story to tell his classmates someday!

It is amazing to me how many people are working so hard to get him better.  This picture was taken when they were trying to fix his Arterial line.  They had our nurse, the fellow, the lead tech, and two surgeons in the room!  They tried for about 2 hours to put in a new one, only to have the surgeons come in and fix the one he already had.  Crazy!

Our next big milestone is getting his breathing tube out!  I am hopeful it will happen today, but it could be tomorrow.  They are still a little concerned because he has had some fluid in his lungs that makes them nervous.  His lungs sound better every day, but they don't want to take the breathing tube out only to have to put it back in.  Apparently it can be difficult to out it back in because the neck can be inflamed and swollen, making the airway smaller.  So, while I hope it comes out today, I do not want them to take it out early.  So we will just have to wait and see. 

We have also had some fun decorating his room.  It is fun for Logan to see all the fun decorations and it makes it a little more fun for all of us! 

The window of his door.  We love monkeys!  Thanks to my mom, we have some serious monkey business happenin'!  As soon as she heard we could decorate, my mom took care of finding the perfect things for us :)

More monkeys inside.

Our checklist!  We are slowly making progress and working towards these milestones. Can't wait to cross more off!!

Thursday was a pretty good day for Joshua. Right now, Te doctors have a few goals for him each day: (1) continue getting rid of fluid and hopefully become less swollen, (2) get the fluid off the lungs and work towards getting off the ventilator. (3) keep his intestines from getting worse.

So, lets just go through each goal. He is doing really well with getting rid o fluid. On Thursday, he was negative 140 cc...meaning they minus what they put into him, he got rid of a total of 140 cc. It was not as much as the day before, but as long as he is negative, we are heading in the right direction. It is a very slow process, but we are all about baby steps right now!

Ok...the lungs. Honestly, his lungs are the biggest concern right now. His right lung has a lot of fluid in it, which is really affecting his ventilation. Through the last few days, they have been suctioning out quite a bit of mucus (I know...it's gross, sorry!). They so have him on a ventilator (his breathing tube) so they can make sure he is getting what he needs. They did have I change him to pressure control instead of volume control to be more safe (look it up...it is pretty fascinating what they can do!). So, we are working towards getting back to volume control and having him do more and more of the work in the breathing department. I am guessing it will be a few more days before we see any huge changes, but we are once again looking at the baby steps.

Finally, his intestines. We have been very encouraged that his x rays have been looking really good for the past few days. They decreased the number of x rays to every 12 hours instead of every 6. They have still been giving him the antibiotics and the general surgeons come in every few hours to do an exam. I am hoping we are past the worse scare for any serious problems, but it is always on our minds because it is so serious. Just keeping an eye on everything!!

Another thing that happened was his arterial line stopped working. This is one of the many lines Joshua has going into some vein or artery. This was one in his hand that was in an artery. They use this o measure his blood pressure continuously and also I draw blood for certain labs.

Now, putting in an arterial line is quite the process. It is a sterile procedure, so they have to get out he gowns and have someone their to assist to ensure it stays sterile. They bring in an ultrasound machine and use that to did the artery and make sure the line is in the artery instead of the vein.

The attending doctor and fellow decided to try putting a new one in his leg, but Joshua's arteries were so small, they were not able to do it (and they tried for about an hour!!). Finally, they called the surgeon to come do it and they were able to fix the one in his hand. So, after about a total of 2 and a half hours, Joshua had his original arterial line back.

So, we move on to the next day. Like I said, we are hoping for baby steps forward. Even though Joshua is progressing slowly, we are just grateful he is not moving backward. Please keep him in your prayers!!

On Tuesday morning, we were pleasantly surprised when Dr. Burch (our surgeon), was able to close Joshua's chest.  The procedure was done first thing in the morning (around 8am).  When he went in for the procedure, they were expecting to do three things: 1-clean out the chest cavity, 2- put in an abdominal catheter to help with drainage, 3- remove an arterial line that was no longer working right.

We didn't think they would be able to close the chest because he has been so swollen. However, when they put the catheter in, they were able to drain a TON of fluid and that allowed them to close the chest. This drain continues to help with the swelling a TON! We are grateful for that.

After the procedure, it was a pretty quiet day. All the way through today, we have just been waiting for the swelling to go down and his breathing to improve. The extra fluid in his body also affects how well he can breath on his own (hence the breathing tube). Hopefully in a few days, he will be able to get the breathing tube out.

Over the next few days, our goal really is to have Joshua keep his stats in a good place and keep draining as much fluid as possible. It has been slow progress so far, but we are encouraged that it will continue to improve. Hopefully he will also get off more and more of the medications. I feel that he is in a great place for only being a few days post op. We just keep telling Joshua to keep it up!!

A view of his room with the x-ray machine.  He was getting x-rays every 6 hours for a while.  Now they are doing them every 12 hours.

Check out that manly band-aid!  He is going to have a very manly scar to brag about someday :)

Opening his eyes!  He is starting to do this more often and he moves around a little, too!  Don't worry, they have him on some pretty awesome pain meds, so he doesn't feel any pain.  It was so good to see those bright eyes again!!

Monday ended up being a little more exciting than we would have wanted. The first 24 hours after surgery are some of the most critical hours of the recovery. The body is at it's weakest, especially the parts that were operated on.

For the most part, Joshua was handling things well. They had him on a number of different medications for his blood pressure, heart rate, a diuretic to help draw out the fluids making him swollen, pain, and sedation and he also had a breathing tube. All of this seemed to be helping and he was right where they expected him to be.

However, around 4 pm, he had a messy diaper which had a lot of blood in it. This really scared the medical team because bloody stool is a sign of a very serious problem in the gut. Sometimes after heart surgery, the heart has a hard time pumping the blood far enough to get to some of the lower parts of the body, including the intestines. Plus, the intestines require a lot of blood flow to to the energy and nutrients it needs to work properly. When it does not get the right amount, the inside walls can start to get eaten away by the bacteria in the gut and start to sluff off, thus the bloody stool.

They immediately started him on some antibiotics and scheduled an x-ray every 6 hours to check his intestines for any holes or dead tissue. If either of those things happened, he would require emergency surgery. The general surgery team came to assess him and determined no surgery was required at this time, but we were to keep a very close watch on him.

Fortunately, nothing else gave any clues that his intestines were getting any worse.  They continued to watch this very closely throughout the night.

Here are some pics of our little man on this day!

Logan got to see Joshua for the first time today, as well!  He was very concerned the whole time and kept pointing and saying "Josh."  We were able to explain that Joshua is sick right now and he has to have all that stuff on him because it is helping make him better.  Fortunately, we are allowed to have Logan come see him once a day for a few minutes.  We are really happy about that so we can help Logan understand as much as possible.

A close up of his little face. You can also see his white vest over his open chest and his breathing tube.

All the monitors, medications, and breathing machine he is hooked up to.  There is not much room for us, but we make it work.

Day of the Surgery

It is hard to describe the feelings we had this day.  We woke up having slept amazingly well--at least for parents that had a son going into surgery the next day.  The preparations of surgery started the night before with a sanitation bath and another one in the morning.  Joshua's last feed before the surgery occurred at 3 AM.  More tests were performed and his IV was inserted at 4 AM.  Around 7:15 AM, he went down for an echocardiogram.  In this echo, we discovered his vein was closing even more--another confirmation that we made the right decision.  He came back to the room around 8 AM.

Stephanie's parents met up with us shortly after that.  Many heart moms have told us that they wish they would have gotten a picture of their baby without the heart scar.  Because of this, we decided to take many pictures of Joshua.  Emily brought Logan and we continued to take pictures as a family and got the snapshots we wanted.  Logan was not thrilled to be a part of it.  Another special moment before surgery was the opportunity I had to bless Joshua with the power of God.  I will never forget this moment and experience that I had to bless my child before his major heart surgery.

Check out that cute body.

The whole family the morning of surgery.

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Stephanie's parents made it down from Boise after driving all night.

The time came quickly when it was time to take our precious one to the OR.  Stephanie carried him in our arms as we tried to hold back tears and avoid the thoughts of what may come.  At 10:10, we kissed our little guy one last time before handing him over to Dr. Pribble--the anesthesiologist.  We watched him take Joshua down the hall and into the room.  We stood there and cried for a few minutes then slowly made our way down to the waiting room.  After observing how empty the OR waiting room is on Sunday, we made our way up to our 3rd floor room to where Stephanie's parents were.  At 10:30, we attended the sacrament service here in the hospital.

The sacrament service was a great place to be.  We had just barely left our son to be operated on and our emotions were very tender.  The opening song, "The Spirit of God" got me teary eyed.  My eyes were not going to dry up for the rest of the meeting.  I believe Stephanie was in the same boat.  The Spirit was strong during the meeting and a great source of comfort and peace came over us.  John 14:27 doesn't lie!

Throughout the operation, we received the following updates:

11:30 AM--The prep work was completed.  Joshua was sedated and all the necessary IV's, tubes, and other prep work was completed.  Also, the first incision was made.

1:25 PM--He was not yet on the bypass machine.  Dr. Burch (the surgeon) was working on the BT shunt.  Everything up to that point was going well.

3:22 PM--He was now on the bypass machine and had been for about an hour.  Dr. Burch was done with the shunt and was working on the pulmonary veins.  Everything was going well.

5:24 PM--Dr. Burch was done with the complicated procedures.  He was putting in some draining tubes, ensuring that there wasn't any internal bleeding.  Also, they were about to start a post-op echo via the throat.  In this echo, they would be able to see the back of the heart and ensure there isn't anything wrong.

5:54 PM--The post-op echo looks good.  They will watch him over the next 1.5-2 hours for any signs of negative affects of the procedures.  They continued to look for any bleeding as well.  Everything looked good at this point.  Also, the chest would most likely remain open for a couple days. (With packing gauze on top of the open chest)

7:00 PM--All is done and Dr. Burch will be out shortly to speak with us.

7:15 PM--We met with Dr. Burch.  He looked very exhausted and he seemed in good spirits on how things went.  He explained more in detail on exactly what was done during the procedure.  He also gave us a shunt that is like the one in Joshua's chest.  Dr. Burch went with a 4.0 mm shunt, which is slightly bigger than most shunts they do.  His hope is that it will help promote greater growth in the native pulmonary artery.  The larger size shunt also allows Joshua more time before he outgrows the shunt.

8:25 PM--We were taken into the CICU and saw Joshua for the first time after his surgery.  He looked really good!  He had a lot of tubes and IV's coming out of his chest, arms, and legs, which was a bit hard to see.  We did like the little tux vest that he had on though!  (It was actually the packing gauze over his chest, but it looks like a vest)

During the night, they had to do a 12-point EKG-which looked CRAZY!  Talk about a lot of wires and tubes!

We spent quite a bit of time with him that night and I slept in the sleep room the hospital provided us that night.  Stephanie went to Mark and Barbara's house to spend the night with Logan and her parents.
 
All in all, our joy is full!  Ammon said it best in Alma 26:8;16;35.  No matter how the recovery road goes, we are grateful to our Heavenly Father for being with Joshua through the surgery.