Wednesday, January 31st

Will has had a good day today. They have started him on Pedialyte and will begin his formula feedings tomorrow. Will hasn't needed any extra sedation, so his docs decided to begin weaning him slowly on his versed IV drip.

We spoke to Dr. Parra a little while ago, and he said that Dr. Moore (an attending cardiologist) called Michigan today with all of the necessary information for them to admit Will. Vandy's lifeflight has already been lined up to take him up there. Now we are waiting for Michigan to get back to us when a bed space is available. Hopefully something will come up in the morning.

We'll let you know!

God's Will

I took these pictures tonight before we left to go home. He was sleeping so peacefully!

Monday 2nd Update

Will got back from his CT scan a little while ago, and he was a good boy. Luckily, the pediatric radiologist hadn't left yet, and we were able to get the results. The doctor said that his belly looked much better, although they would like to see his fluid and edema (swelling) go down. But, most importantly, he is ok to be transferred to U of M.

Dr. Parra is going to call Michigan with the results first thing in the morning rather than tonight because it is an hour ahead there, and none of their day people are on right now.

So, we hope that everything will be squared away for us tomorrow to have Will lifeflighted up to U of M on Wednesday.

Monday, January 30th

Will had a good weekend. He is off Dopamine (pressure med.)... all he is on now is Versed. They give him methadone every couple of hours so he doesn't suffer from withdrawl.

We still haven't received any info. on what the plans are for Will's transport. Vandy is doing a follow up abdominal CT scan to make sure his belly is ok and that it is ok for them to start his feeds back again.

Once Dr. Parra hears back from radiology about the results of the CT, he will call Michigan about when to send him up.

The CT results probably won't come back in time this evening for Dr. Parra to call them, so it's most likely that Wednesday will be the day that Will is lifeflighted up to Michigan. We'll let you know as soon as we hear something!

Friday 2nd Update

Well, we just spoke to Dr. Parra about his conversation with the U of M doctors about Will.

Dr. Bove will be out of town next week until Wednesday. So, they plan on lifeflighting Will to Michigan either Tuesday or Wednesday next week. The surgery will either be late next week or early the following week. Michigan is going to call Vandy Monday morning to firm up the details.

They plan to do The Rastelli Procedure for surgery. This is what they plan to do:

1. Remove his B-T shunt. (This is currently the passageway that the heart uses to pump blood the pulmonary artery and to the lungs.)

2. Patch the hole (Ventricular Septal Defect, or VSD) between his left and right ventricle... they will do it so the aorta exits from his left ventricle instead of his right ventricle as it is now. Luckily his right ventricle is big enough that they can patch it this way... the right ventricle will be smaller, but still a good enough size to function properly.

3. Install a conduit that will run from his right ventricle into his pulmonary artery. (This will basically replace the B-T shunt.)

4. Cut open the part of the right pulmonary artery that is currently narrow and reattach it to make it a proper size.


I hope the diagrams (above) that I drew help you understand what I'm talking about.


This is going to be a very high risk surgery. There is no way to really know how it's going to turn out.

The downside to this type of surgical repair is that he will need more surgeries than he would if we had approached the traditional hypoplastic left heart 3 stage surgical repair. Unfortunately, the conduit that they will install will only last 5-10 years, because it cannot grow with him and will require replacement. He will need surgeries around 5, 10, and 15 years of age. But, Dr. Parra said that better technologies could be developed over the next 10 years, and who knows what they could come up with?

We'll let you know how things progress over the weekend!

Friday, January 27th

Will is doing great this morning. In fact, his ventilator settings are lower than I have seen in about a month. His breaths per minute rate is down to 22 from 32. His oxygen is down to 40 % from 80-90%. His tidal volume is down to 40 from 65. His sats are great! It's hard to believe that this is the same baby! I have a feeling the larger trach being put in yesterday made all the difference.

Since Will is doing good at the moment, they don't want to "rock the boat" and make any changes to his dopamine and versed doses.

He is still very sedated, but he wakes up from time to time. We want him to rest and keep him from getting agitated. The only time he seems to get upset is when he is being suctioned or if you touch his belly, which is really tender to him right now.

They are still keeping an eye on his stomach, which they think is fine for now.

I will let you know when we hear from Michigan, which will hopefully be soon!!

Thursday 3rd Update

We just got the results of Will's contrast CT scan. It turns out his liver is ok, with no signs of bleeding. But, they did find that his stomach was not getting enough profusion (blood flow). His doctors are a little stumped... they don't know what caused it. They think it is possible that the vasopressin he was on did it. The good thing is that the doctors seem to be underwhelmed about it. They are just going to keep a close eye on it and hope it fixes itself. In the meantime, they have stopped his feeds and oral medications in order to give his stomach a break.

I also spoke with Will's case manager from his insurance company. She said that someone contacted her from Vandy about the possibility of transferring him to Michigan, and she said not to worry that they would cover it. She was very concerned about Will (and us), and asked to call if there is anything she can do. I didn't know that charismatic insurance company representatives actually existed! I even gave her this website address so she could keep up with Will's status. Isn't that wonderful?!

The Vandy docs held their weekly conference this morning and discussed Will's surgical options. Apparently, there are a couple of ways they can do his repair. They can use a conduit and/or do an arterial switch, but that would require heart surgeries every couple of years for the rest of his life, because the conduits are only good for about 5-10 years. They could also put in another shunt (giving him 2) and give him time to grow and see if the pressures in his heart improve. I'm not really sure what route we will take. I have complete confidence in Dr. Bove, so more than likely we will go with what he suggests.

I can hardly wait to hear from Michigan! Hopefully we'll know something tomorrow afternoon!

Thursday 2nd Update

The pic-team was successful in getting a pic-line in the arm that already has the arterial line.

Will's doctor wants to send him downstairs again for a CT scan again this afternoon, only this time they will use a contrast. This will allow them to better see his liver and any bleeding that may be occuring.

We also decided that Will needed a bigger trach, so I changed it out with the next larger size. He seems to be doing fine with it.

That's all I know for the moment. I will continue to keep you posted!

Thursday, January 26th

Here's the latest:

Will's liver may be bleeding out a little. His CT scan yesterday didn't show any blood, but it did show fluid around it. His blood work and tight tummy makes the doctor think that it is bleeding. His hermadocrite level in his blood was low this morning and he needed a blood transfusion. The doctor thinks that when they restarted his aspirin and blood thinner yesterday, it may have caused him to bleed out a little. She doesn't think it is going to cause him any major problems... they stopped the aspirin and blood thinner, and hopefully the bleeding will just take care of itself.

Needing blood brought up Will's IV access issue again. They went ahead and stopped his dopamine and versed in his pic-line for about 5 minutes and gave him his blood through his pic. He seemed to do ok, but they really need to get him another IV line. So, the pic-team was called in, and they are either going to put in another pic-line in his arm with the arterial line or they will try to turn his single access pic-line into a double access pic-line.

We're in the waiting room right now. Hopefully it won't be too long. I'll let you know how it goes!

Wednesday 4th Update

If he isn't being held, he loves to lounge in his boppy or sleep in his bouncy seat!

Just hanging out!

This picture of Will was taken earlier this afternoon. He was actually snoring!!
I think his trach may be getting a little small. You can hear his voice through it sometimes.

I just talked to Will's nurse, Mindy, to get an update. She said that he's doing good tonight. She was able to wean him some on his dopamine and that he hasn't required any extra sedation. That's my boy! Keep it up Will!

Wednesday 3rd Update

We just talked to Dr. Parra a little while ago. He talked with Dr. Bove about Will. Bove should receive the CD with the pictures of Will's heart cath tomorrow, and Bove plans on showing it to the U of M's congenital heart staff during their weekly conference on Friday afternoon. This is when they will discuss his options.

Hopefully, Dr. Parra will hear from Dr. Bove shortly after the conference Friday evening. Otherwise, Dr. Parra said it could be as long as Monday morning before we hear from Michigan.

Waiting for them to get back to us is absolute agony. We just want to get up there and get the surgery over with. We are trying to be as patient as possible, but it is frustrating.

We'll let you know what they say as soon as we know!

Wednesday 2nd Update

Will is doing well. He just got back from his CT scan, where they took a look at both his head and abdomen, to make sure his liver is ok after the heart cath. We should hear the results late this afternoon.

Will's strength never ceases to amaze us. They have been able to wean his oxygen from 80% to 55%. They have also made great strides in weaning his dopamine (blood pressure med.). His feeds have started back again, and he is resting peacefully. He has had a lot of edema and swelling all over his body from all of the fluids they've been giving him, but in just the last couple of hours he looks so much better.

Apparently, Dr. Parra (Will's Vandy cardiologist) talked to Dr. Bove earlier, and he came by to talk to us early this morning, but unfortunately he missed us. Dr. Parra's schedule is very packed, so I don't know when he will be able to stop by, but I will let you know what he says.

Wednesday, January 25th

I just got word that it will be late Friday morning before we hear anything. Michigan holds a conference every Friday morning with all of their docs to discuss their patients.

In this conference, they will decide what Will's options are. They will look at his cath results and at his heart anatomy to decide what surgery they should do, and if it is even an option... They also need to decide if they're willing to accept him, which we think they will.

The docs also want to do a CT scan of his head today, just to make sure that everything is ok before going to surgery.

Their goal is to get him as stable as possible for transport. This will take a few days. So far they have been successful in weaning him off of one of his blood pressure medicines, vassopressin. They still need to wean him off dopamine. They also want to be able to wean him off fentnyl and versed (both pain & sedative meds). This is a very slow process. I really don't know how this will go with him being so fragile. But, I am going to stay close and watch to make sure they don't push him too far.

It did scare us that they're talking about there being a remote possibility that surgery can't help him. We think he has fought too long and too hard for them to just give up. This is a million dollar baby!!

Tuesday 2nd Update

Here's the latest. Will loves to challenge the docs here.

His IV in his foot started to leak and went bad, so the nurse had to take it out. Well, normally you would stick him somewhere else to get another line, but after several tries the docs couldn't get one. He has a pic-line, but his blood pressure medicines are going through it, and you can't stop them from going through to administer other medicines. If you did stop them, his blood pressure and oxygen saturations would instantly drop. He also has an arterial line in his other hand, but it is only used to check blood pressure and to draw blood for labs.

They can't put in a central line in his leg because it could dislodge his blood clot in his inferior vena cava. They can't put a line in his head because of his shunt. His veins on his shoulders can't have lines in them because they don't want them compromised with an upcoming heart surgery. The only other option is to do a line through his liver, but that is considerably risky given 1) it's a surgical procedure that could cause internal bleeding and an infection 2) he just had a heart cath through it yesterday 3) the liver was tougher than usual and it took 4 pokes yesterday for the doctor to find a vein.

Will was off of his feeds, but they decided that it was ok now to administer some of the medicines orally. They also found that some of them can be given through a shot to the muscle tissue.

The docs here want to wait to hear from Bove to see what the game plan is before they decide to do anything with his IV access. They think for now he is ok.

I want to thank all of you who have visited this site and written these incredible uplifting messages. It means the world to me and my family. I look forward to reading them everytime I log on.

Tuesday, January 23rd

We just talked to the attending cardiologist. He said that there was something else that they found on the heart cath that was very concerning.

During the procedure, they measured the pressures in all of the heart's chambers. One of the atriums pressures was 22. Normal for him would be a pressure of 5-7. The biggest problem with that high of a pressure is they cannot do the 2nd stage (Glenn procedure) surgery to fix his hypoplastic left heart.

It appears that the only way they can fix his heart is to do a 2 ventricle repair, in addition to patching his narrowing right pulmonary artery. Originally this was best case scenario, but we always wanted the option of a Glenn in case his heart could not tolerate it. The cardiologist said that there are about 3 different ways to approach the repair, and it would be up to his surgeon, Dr. Bove on what to do.

They have Fedexed his pictures from the heart cath to Dr. Bove in Michigan, and now we are just waiting to hear what he says.

The attending said that Will would need surgery in the next 7-10 days. It will probably be Friday before we know any details. It takes a while to coordinate everything... insurance; getting Michigan to accept him; getting a bed space available; working him into the surgery schedule; scheduling lifeflight.

When we asked the attending what Will's chances were, he said, "Either he is going to make it or he's not. There's no way to know for sure. But, you have the best surgeon in the world, if not in the top five. If anybody can help him, Bove can."

We're so scared right now.

Monday 4th Update

Will just finished with his heart cath, and he came out just fine.

They had to do the cath through his liver, which proved to be more difficult than most patients. His liver was tougher than usual and it took a couple of pokes to find a vein. They will have to watch his belly closely to make sure that he doesn't bleed out. But, so far so good.

This is what they found: the right pulmonary artery to his lung is narrowed, which may explain his problems with dropping his oxygen sats. This will definitely require a surgical repair by a heart surgeon. The Vandy doctors will discuss it tonight and will call Michigan as well to tell them their findings.

It may be as long as Thursday before we know anything about the surgery.

I'm not sure how soon they will want to do the surgery. I just hope they can wait until he is more stable and his infection is gone, because he can have a lot of problems with his surgery. But, they will do whatever they have to do.

Monday 3rd Update

Will is going to have a heart cath this afternoon at Vanderbilt.

His doctors want to make sure that this is a surgical problem before sending him to Michigan. It wouldn't do much good to go the trouble of transporting him there to do the heart cath if it turned out he doesn't need surgery.

If he does need the surgery, we'll evaluate our options and make a decision.

Will should be going in early this afternoon for his cath. We'll let you know what happens.

Monday 2nd Update

Well, this is what we have found out thus far.

The attending cardiologist is leaning towards Will needing a heart surgery. He said that although blood is getting through the shunt to the lungs, he doesn't think the shunt is big enough. They have talked about doing a heart cath, but there are some things we need to consider.

We really want Dr. Bove in Michigan to do his heart surgeries, but we don't know if Will is stable enough to be transferred there. Vanderbilt still has not found a replacement, but there are 2 surgeons on staff as well as a visiting surgeon who is currently overseeing the department. Right now, I don't know enough about their credentials or success rates to make a judgement call.

Another thing we have to think about is what surgery to perform. Although Will is almost at the point where he can have the 2nd stage operation, his lungs are so sick right now that the surgery would most likely not be successful. What they probably will do is go in and replace the shunt. We hate that, because he will have to go back in the next few months for another surgery.

We are also worried about the heart cath, because that alone is very risky for Will. As you may recall, he has a blood clot in his inferior vena cava. It is possible while performing the heart cath, the clot could get dislodged.

We will have to make some very difficult decisions in the next few hours, and I just pray that we make the right ones.

I have to be honest, it doesn't look good. I am just praying for a miracle.

Monday, January 23rd

Josh & I went home last night to try and get a decent night of sleep, but we got a 3 a.m. call that no parent ever wants to get.

Will's nurse asked me, "How far away are you from the hospital? Can you get here soon? Will is not doing good... you need to get here now."

It was awful. We jumped in the car and raced to get to the hospital as soon as possible. It took about 10 minutes to get there. When we got to his room, the crash cart was just outside his room and the entire staff was inside. The attending physician was bagging him and everyone was watching the monitor.

My first question, "Oh my God, is he coding?"

The attending said he almost did, but they acted fast enough that his heart rate didn't get too low. His oxygen sats were in the 40's for almost 2 hours before they could get him to go up to 60.

His blood gasses were getting worse and worse overnight. But, after their tremendous effort his most recent blood gas showed that his numbers were improving. When I left his room a minute ago, his sats were about 67.

They did another heart echo which ruled out any problems with his shunt or heart. Will's lungs are very sick. He is somewhat stable now. We just pray that it stays that way. I will keep you posted as the day progresses.

Sunday, January 22nd 2nd Update

We just spoke to one of the attending physicians, and they just got word from the lab that the culture taken from Will's trach is growing some bacteria. We won't know exactly what it is for another 24 hours or so, but she suspects that it is pneumonia. Hopefully they have caught it early enough that it won't take but a couple of days for him to get rid of it. We'll just have to wait and see.

In the meantime, they have had to paralyze him and give him fentanyl to get him to rest and let the ventilator and medicines do the work.

Sunday, January 22nd

Well, last night Will did not improve liked we had hoped. They did several blood gases, and his numbers did not look good, so they had to take him off his home ventilator and put him back on the hospital ventilator.

We're still waiting on his blood cultures to come back to see if he has an infection. It is still possible that thet new medication they started him on the other day caused this. Right now we are just going to wait and see what happens.

Since Will is having these problems, we are going to stop rooming in.

This is a pretty big setback for us. Once we know what is going on, I'll have a better idea of when he might be discharged. I'll keep you posted!

Saturday, January 21st

We're almost halfway through our rooming in period with Will. So far it has gone pretty well.

Unfortunately, Will had a rough day today. This morning his oxygen saturations and blood pressure dropped to low levels. His oxygen saturation ranged in the 40's and 50's (normal is 70's to 80's), and his mean blood pressure got to as low as 20 (lowest they like him to go is 45).

To help get him where he needed to be, they started him on hydrocortisone, dopamine (for blood pressure), and a sedative. They also had to give him a blood transfusion because his hemadocrite level was a bit low (probably from all the blood they had to draw for labs.) They also took some cultures of his urine and throat to see if he has an infection. And as a precautionary measure, they started him on 2 antibiotics.

This was a bit scary, because we thought that the shunt in his heart was failing. Thankfully, a heart echo showed that he was getting adequate blood flow to the lungs, but it did show some narrowing at the bottom of the shunt. They don't think it is significant enough to cause any problems.

His docs think that what probably caused this episode was a new medication that the endicrinology service put him on to help with his blood sugars and insulin levels. The last dose he got was at 4 a.m. this morning, but it can stay in your system up to 24 hours. So, they will watch him closely overnight and evaluate him in the morning before weaning him off his blood pressure medicines.

Hopefully, this won't delay our discharge on Tuesday. But, I kind of have a feeling that it will. I am just so thankful that this happened here instead of at home.

I'll try to "sneak out" to the family business center again tomorrow to give you an update!

Wednesday, January 18th

Look at those chubby cheeks!! He is up to 8 pounds, 7 ounces!

Will rediscovered his hand the other day and began sucking his thumb.

I don't know who is enjoying this more... "Grandmommy" Nancy or Will?

What a busy couple of days it has been! There is so much to do! I still can't believe he is coming home! He is doing really well. He got moved into a bigger room with it's own bathroom the other day... it's really nice.

We will begin our 72 hour "rooming in" period with Will first thing Friday morning. It is basically set up to mimic what it would be like at home. We will eat, sleep, and shower in his room like we would at home.

Many of you have asked me over the past few months if there is anything you can do to help us. Well, if any of you in the Nashville area would be willing to bring us a meal this weekend, or even the first week or so after Will comes home, we would really appreciate it. Just post a comment and let us know when you would like to do so. And just so you know, we already have Saturday lunch covered.

It looks like Tuesday will be our discharge day! I can hardly wait!!

Saturday, January 14th

What are you doing with that thing Mommy?

Sound Asleep

We got a discharge date yesterday!!! If everything goes to plan, we will be discharged either on Monday, January 23rd, or Tuesday January 24th.Can you believe it??

We will be very busy during the next week. All of his supplies and equipment are scheduled to arrive at the house on Tuesday via UPS. We have to do our training on his feeding tube, which should be a piece of cake compared to everything else. We will also complete our ventilator training on Wednesday. Then we have to "room in" with Will, which is when the parents have to stay in the child's room for 72 hours and take care of him without any assistance from the hospital staff. We will do this on Friday, Saturday, and Sunday.

Wednesday, January 11th

Mommy & Will

I got some WONDERFUL news yesterday. Josh's employer got a new insurance company, as of January 1st. We were a little anxious about what his new lifetime maximum would be. (We were about to hit our $1 million cap with our old company) Will's case manager informed me that under our new plan it is UNLIMITED... NO LIFETIME MAXIMUM!!! Praise God!!

I am continually amazed by God's work in our lives. From day one, he has worked miracles for us.

The inspection of our apartment went well Monday, and his home ventilator is expected to arrive to the hospital sometime tomorrow, or Friday at the very latest. We can't wait to learn how to use it so we can get our boy home!!

I also want to say what a great job Kirk and Robert did today on their trach training! I know it is intimidating at first, but with time and practice it will get easier. Which reminds me, Josh, I am so proud of you too. He had to change out Will's trach today for the 1st time, and he was sooo nervous. He thought that he might pass out. But, you did a great job!

Oh, and I can't forget Will. He was so calm through the whole process. I think he is starting to understand that when we have to take care of his trach, although the process may be a bit uncomfortable, he will feel better when it is over with.

Thank you to everyone for your prayers and support for the Lowrie family. Little Wyatt goes into surgery 1st thing tomorrow morning (7 am our time) for his 2nd stage heart procedure. I know he will pull through like a champ! I can't wait until the day when Will & Wyatt will play together.

Prayer Request for Wyatt Lowrie

Will's Heart Buddy, Wyatt Lowrie

I know we use this blog to do updates for Will, but I would like to ask you to pray for a dear friend of ours, Wyatt Lowrie.

Wyatt and Will were both flown to University of Michigan on the same day back in October for heart surgery, and were NICU/PCTU buddies through their heart surgery and recovery. Wyatt also has hypoplastic left heart syndrome and had open heart surgery the day after Will.

Wyatt has had his ups and downs just like Will, but we have just been informed that his shunt is failing. (For those of you who don't know, the shunt is installed in the 1st surgery and it is what provides blood flow to the lungs.) It appears that the shunt has narrowed significantly and will more than likely require an immediate open heart surgery to repair it.

Wyatt was heavily sedated and put on a ventilator today before being airlifted from Grand Rapids, Michigan to Ann Arbor, Michigan.

Wyatt and his parents Lori & Cass need your prayers desperately.

Wyatt also has a website if you would like to check it out. Go to www.carepages.com and sign up to be a member. When searching for his site, type in WyattLowrie, and it should take you right to it.

Thanks!!

Monday, January 9th

Now you can see all of Will's beautiful face!!

Daddy comforting Will after surgery

Will has been doing well since surgery. They have started his feeds back again and so far so good. They have been giving him feeds every couple of hours, but his blood sugars were low this morning so they are starting continuous feedings again to see if it helps.

His ventilator setting is down to 22 breaths per minute, and now we are just waiting for his home ventilator to come in. They think it will be sometime today or tomorrow. The one he is supposed to get is the size of a laptop, so it should be easy to transport.

Our apartment is going to be inspected early this afternoon to make sure it is a safe enviornment for Will.

It's hard to believe we are so close to coming home!!

Friday, January 6th

Will made it out of surgery ok. Its great to be able to see his face without any tubes... he's such a handsome little guy! I'll be sure to take lots of pictures.

If all goes well, they will be able to slowly start his feeds tomorrow. I'll let you know how it goes!

Thursday, January 5th

Will sleeps best when he is being held

Will is scheduled to have surgery tomorrow to have a g-tube (feeding tube) placed and a neissen procedure performed. The neissen is essentially a "stomach wrap" where part of the stomach is wrapped around the end of the esophagus in order to help with acid reflux.

We don't know exactly what time it will be, as his surgeon is working him in to his schedule. The surgery should take about 3 hours.

It looks like Will is coming home in the next 2-3 weeks. We are waiting for his home ventilator to come in, and once it does we will begin our training on it. We also have to complete other training, including CPR and how to use and care for the g-tube. We are in the process of getting prepared for his arrival... setting up his room for his equipment; making arrangements for private duty nursing at night; etc.

It is a very exciting, yet anxious time for us. We can't wait to have our little guy home!!

Monday, January 2nd

Will enjoying his mobile

All he needs is a warm bottle and a remote control!!

Grandmother Kirk holds Will for the 2nd time!!

Great Aunt Sally & Will

Will loves his bouncy seat!!

Sweet Baby Will

Will with his Aunt Annie

Happy New Year!

Will is doing pretty well. He is up to 8 pounds now! We've enjoyed him this weekend. He acted up a little yesterday... there were a few times where his heart rate and his oxygen saturations would drop, which can be normal when a baby gets upset, but he was having a hard time getting them to come back up. This is a little out of character for him. But, today he did better.

I am going to meet with a pediatric surgeon tomorrow about placing a permanant feeding tube in his stomach. This is something we kind of anticipated. It will be much easier on him and on us if he has this done, not to mention that babies tend to bulk up quicker on this, which he really needs for heart surgery #2. We won't have to worry about him pulling out his tubes out of his nose anymore, not to mention will see all of his beautiful face!!

Nothing really more to report other than that. Holidays tend to be slow. Tomorrow should be back to normal.

I will let you know when we think he will have his surgery.