Thursday, December 29th

Grandmother Nancy holding Will for the 1st time!!

Our Sweet Little Man

Will's Christmas Tree
Will got lots of gifts from Santa! He even got a $50 Target gift card from Faith Hill & Tim McGraw!!

Will is doing much, much better today. He is like his old self! He hasn't had anymore "spells" where his sats drop. In fact, doctors have been able to wean him on his ventilator rate to 36 and his oxygen to 45%.

Will is going to go home on a ventilator. Right now, doctors are trying to wean him down to a rate somewhere between 24-30. This should take about a week.

It will be about a month before he will go home. Josh & I have to finish our trach training and learn how to use the ventilator.

Hopefully we'll enjoy a few weeks at home before going back to Michigan for heart surgery #2. We're not sure exactly when that will be... sometime between February and April.

Tuesday, December 27th

We had another long day today. Will has been having spells where his oxygen saturations ("sats") in his blood drop. For most of today his sats have been in the low to mid 60's, sometimes dropping into the 50's. (He should be in the 70's or low 80's.)

At one point today, his ventilator setting was up to 46! But, after a little "tweaking" it is down to 42. Will has also required a lot of oxygen - anywhere from 60 to 90%.

They had to put Will on a paralytic and a strong pain medication to make sure he stays calm. They also took him off of his feeds. Hopefully they will be able to put him back on them by tomorrow.

Doctors still don't understand what's causing this. He shows no more signs of infection. His chest x-ray shows no changes, and his heart echo this afternoon looked normal. It's great to know that it looks good, but we want to know what the problem is so we can fix it.

Christmas Eve Update #3

What a long day it has been! We just got home from the hospital. Josh read Will "Twas the Night Before Christmas" and I read him "A Charlie Brown Christmas." It was very special.

Well, it does turn out that Will has a bacterial infection in his trachea. It is too early to tell exactly what kind of strain it is, but they have already started him on an antibiotic. They don't know if this infection had anything to do with his respiratory problems, but it is a possibility.

We also had a small scare with his pic-line (this is his IV line where they draw blood and administer his various medicines). The line became clotted, which prevented them from drawing blood and giving him his medicines. They tried his feet, legs, hand, and arm for a new line without any luck. But, they were able to use a blood thinner in his pic-line, and it cleared up the clots, so now it works without any problem. If it hadn't of worked, it could have potentially become an emergency situation.

Doctors changed the mode of the ventilator, and so far Will has done well with it. They did have to take his setting all the way up to 36, which is the highest they can go for him. They hope that by "tweaking" his ventilator settings, they can fix his problems. His last blood gas was great. (Blood gas is where they check PH, CO2, and other levels in his blood to see how well his body is working.) They will continueto get his blood gases about every 4 hours or so, and if they continue to be good they can wean him down on his rate.

We wish we could be with all of our loved ones in Memphis, but know that our hearts are with you.

Merry Christmas!

Christmas Eve Update

Doctors performed an ultrasound on Will, and his heart and lungs looked normal.

When looking at his chest x-ray, Will's lungs were a bit bigger in size, which could possibly indicate that his tidal volume setting on his ventilator is too high. Basically, the amount of air that the vent is pushing through is too much. So, they have weaned his tidal volume from 30 to 25, and so far so good.

They have also ordered several types of tests to check for a possible infection. Although, he doesn't show any sign of infection (fever, etc.). Some of these tests will take up to 3 days to get a final result.

We're hoping that the change on his tidal volume setting is all he needs to get better. Hopefully we'll have a better idea of what's going on later this evening.

Saturday, December 24th

We need everyone to pray for Will right now. He is not doing good at all.

Over the past two days doctors have had to go up on Will's ventilator settings all the way up to 32. (The highest setting he has ever been on) And he is on 100% oxygen. They have also put him on an IV drip for sedatives, one being a paralytic in hopes to keep him calm and let the ventilator do all the work. So far, nothing has seemed to work. Everytime they have to suction his trach, he de-sats... which means the oxygen levels inhis blood drop to dangerous levels. Normally, he can bounce right back to where he should be, but for some reason he has had a really tough time doing so.

Doctors can't explain why he is doing this. His chest x-ray shows no changes in his lungs. My biggest fear is that one of his blood clots has traveled into one of his lungs. To rule this out, they are going to do an echo of his chest to see if the clots have in fact moved.

We will update you as soon as we know something.

Thursday, December 21st

Santa's Little Elf

Great Grandparents Jim & Parrie Perdue meet Will for the first time.

Will had another great day yesterday. I got to hold him for most of the afternoon. Being able to hold him is such a gift!

They were able to wean his rate down to 8, but they want to wean down his pressure support a bit before they do his sprints.

Also, the follow-up ultrasound from Tuesday showed that Will had another clot near his kidney. The doctor said that the clots are not blocking anything, which is very good. They have started him on a blood thinner which they hope will help. The biggest concern is that the clots could get loose and move to the lungs, brain, or heart, which could be a big problem. They are going to keep a close eye on it by doing ultrasounds every couple of days to see how they progress.

Tuesday, December 20th

Will had a great day today. Josh & I both got to hold him!! It was so wonderful... he slept so peacefully in our arms!

So far they have been successful in weaning down his ventilator rate. He was down to a rate of 12 this evening. They hope to get him down to 8 overnight and begin his "sprints" tomorrow. Hopefully they can get him off the vent for good!

During a rountine heart echo yesterday, doctors discovered a small blood clot in his inferior vena cava. A doctor that I spoke to today said that the clot isn't causing any sort of blockage & that he isn't in any kind of danger. It is something that they want to keep a close eye on. She said that it's "not uncommon" for heart babies his size to get them. A follow-up ultrasound was performed this afternoon to examine the vena cava in greater detail. I haven't heard anything yet about the results. I'll let you know what I find out!

Monday, December 19th

Mommy & Will

Mommy, Will, and Grandfather Larry

Daddy & Will

Larry, Pat, and Will

Santa, Daddy, Will, Mommy, and Ronnie ("Saving Little Hearts" mascot)

These pictures were taken about 2 weeks ago. Didn't they turn out great!

We had a great weekend. Will had lots of visitors... it's too bad that he slept the entire time! It was very special... especially for great-grandparents Parrie & Jim Perdue. It was their first time to meet Will!

Doctors decided to change Will's feedings a little bit because he wasn't getting proper nutrition. He was having several small runny bowel movements, which indicated that he wasn't absorbing the nutrients that he so desperately needs! So, they took him off his breast milk and put him solely on formula. It was kind of a bummer for me, but we need to do what is best for him, and he has already shown improvement!

Today Will was doing better on the ventilator than he had been over the weekend. Yesterday they had raised his rate all the way up to 22! But they took it down to 20 this afternoon and his CO2 and PH levels in his blood started to show improvements, which is great. Hopefully as they continue to wean him on his rate his levels will continue to improve!

Will also had his immunizations today. He took it so well! He has a high pain tolerance... it was nothing to him. Such a tough little guy!!

New Will Pics

Will with his grandmother Kirk.

Mommy and Will.

Will after his tracheostomy procedure.
You can finally see his face!!

Wednesday, December 14th

We made a very difficult decision today to go ahead with the tracheotomy procedure. Will went into surgery around 12:30 this afternoon, and he did very well.

Before putting in the trach, his doctor performed a bronchoscopy to look at his airway structures. It turns out that he had some scar tissue that was flopping back and forth as he breathed. Putting in the trach is the only way to let the scar tissue heal. There was no way he would have been able to get off the ventilator without this procedure.

There really is no way to tell how long he will require a trach... it could be 4-6 months, a year or two... who knows? It depends on a several factors.

We will need nursing care when he goes home, which should be in the next 3-4 weeks. (hard to believe!) We will need a nurse to come at night so we can sleep! We hope our insurance will cover it... the hospital is going to call them to see. We anticipate that they will... they have been great thus far.

I will keep you updated on how everything goes. Josh & I now have to concentrate on learning how to care for the trach, and possibly how the ventilator works... if Will needs it. They have given us a book, a video, and a trach doll.

The good part of all of this is that next week, (just in time for Christmas), we will be able to hold him. We can hardly wait!!

Tuesday, December 13th

I met with one of the PCCU attending doctors this afternoon to have a discussion about their thoughts on Will's respiratory status.

They think that he is not going to be able to get off the ventilator on his own for a little while. They think this for a couple reasons. When he gets down to the lower settings on the vent he breathes faster than he should. And as you know, every time his breathing tube has been removed (whether it be for his bronchial scope or an attempted extabation) he has not done as well.

They think that he will definitely need a tracheotomy. The doctor asked me if I wanted them to try weaning him off the vent again, or did I want to go ahead with the procedure. I told them that I wanted them to try it once more and see how he does.

The doctor suspects that Will would only need the trache for 4-6 months just to help him get off the ventilator. Most likely he would be in the hospital for about 3-4 weeks after the procedure, in which time Josh & I will learn how to care for the trache and how the ventilator works, because he will most likely be on it when going home.

This is definitely not what I wanted to hear. I am praying that he will defy the odds and prove the doctors wrong. If anyone can do it, Will can. When there's a "Will" there's a way!

Monday, December 12th

Will has had a rough day.

The doctors didn't like the positioning of his breathing tube this morning, so they changed it's position and retaped it. Unfortunately, it required them to sedate Will heavily, thus turning his ventilator setting up to 27. They also had to turn up his oxygen as well.

He also had an episode this morning when the o2 levels in his blood dropped down to the upper 30's (it should be 70's-80's).

Despite all of that, he seems to be resting more comfortably now, and his stats seem to be ok. Hopefully it will stay that way so they can begin weaning him off the vent again.

Saturday, December 10th

It looks like we have another setback.

Will's cultures showed yet another infection... this one was around his breathing tube. The bacteria they found can cause the flu. But, thankfully this was caught early and this is in no way life threatening. He is being treated with another antibiotic, and this should be cleared up in the next 10 days.

Also, he had a problem arise late this afternoon with a mucus plug at the end of his breathing tube. It made it very difficult for him to breathe and the doctors had to take out his breathing tube and put another one in to get rid of the plug. This procedure required numerous medications, including a paralytic. So, Will is going to be out of it until late tonight. Also, since these medicines took away his drive to breathe, his ventilator setting had to go all the way up to 28.

They will be able to begin weaning him off the ventilator again tomorrow. Hopefully by the end of the week, they can try removing the breathing tube again if everything goes well.

Thursday, December 8th

Well, it looks like Will has a small infection. The blood culture came back showing that he has some bacteria in his bloodstream. As of now, doctors do not know what the source of the bacteria is, but they are treating it with antibiotics. It should be completely gone in a few days.

This explains why they have had trouble weaning him off the ventilator this week. Once the infection is gone, he should be as good as new!

Wednesday, December 7th

Will is taking longer than expected to get off the ventilator. He got down to a rate of 10 two nights ago, but he didn't handle it as well. His C02 numbers were increasing and his respiratory rate was too high.

So, they started raising his ventilator rate and it topped off today at 24. His doctors started to worry that he might have some sort of an infection because he was also running a slight fever this morning. (Which may explain his needing a higher ventilator rate.) They took all sorts of cultures... urine, blood, etc. Most of them may take 3 days or so to come back, but the initial results have come back negative for any infections.

This evening things have started looking up because he no longer has a fever and his last 2 blood gases have looked really good. So, if everything continues to go well, they will begin to reduce the rate on his ventilator. I'll let you know how it goes!

Pictures from Saturday, December 3rd

Will with Big Uncle Joe and his cousin Adam

Grandmother Kirk with our sweet Will

This cross was made by my labor & delivery nurse at Vanderbilt.

Will's "paddle feet"
...just like his mom and grandfather

Our Tough Little Man

Will with his proud Mom & Dad

Sunday, December 4th

Will has had a good weekend. It was especially good for me because they let me hold him for a few minutes today!! It's the best feeling in the world.

Since Friday they have weaned his ventilator setting from 26 to 16 and he hasn't required any extra oxygen. They want to get him down to a setting of 8 before they begin sprinting him again. Hopefully that will happen within the next 24 hours or so, but we'll see. He will let us know when he is ready.

I'll let you know what happens!!

Friday, December 2nd

Well, unfortunately around midnight last nite they had to put Will back on the ventilator. It's not uncommon for babies his size, especially after having a couple surgical procedures. Will's C02 rate continued to go up, and he was working too hard.

So, the plan is beef Will up! They have increased the fats in his milk. They also set his vent at a higher rate to give him a break. They will start weaning his rate down and eventually start his sprints again to give him a workout. Then, they will try to take his breathing tube out again in another 5 days or so.

I'll let you know how it goes!

Thursday, December 1st

Great News!!!

Doctors removed Will's breathing tube this afternon and he's doing great!! I could hardly believe it myself. They are going to watch over him for the next few days in the pediatric critical care unit, and if he does well, they will send him to the floor. That means he could come home sometime really soon!

We will hold him again tomorrow, and it will be so much easier since his breathing tube will be out. I can hardly wait!