Wednesday, November 30th

Will had his shunt surgery today, and he tolerated the surgery very well.

The next step is getting him off the ventilator. Hopefully they will try to take out his breathing tube in the next 2-3 days after he does his "sprints."

I'll let you know how things progress!

Monday, November 28th

Not much has changed today... we're just waiting for his surgery. I spoke to a neurosurgeon this evening and he thought the earliest his surgery will be is on Wednesday... they can't say for sure because they have two complicated surgeries to perform that day, so it depends on how well they go. If it doesn't happen Wednesday, they will do it Thursday for sure.

Sunday, November 27th

Will has had a great weekend. Josh & I got to hold him for the 2nd time ever yesterday!! It was a very special day... Will smiled for the 1st time when I held him. It was the most amazing moment.

He is also on his lowest ventilator setting, but they aren't going to "sprint" him again until after his shunt surgery. His surgery will be either Tuesday or Wednesday... we will find out tomorrow for sure when it will be scheduled.

Once he has recovered from surgery they will do his sprints and then try to remove the breathing tube to see if he can breathe on his own.

Will had both his central line and umbilical line removed this weekend. The umbilical line was removed because Vandy docs don't like them in for a long period of time because of the risk of infection and clots. They did put in an IV in his foot that they use to draw blood and to give him any meds that he can't take orally.

Will's feedings are going well... his up from 10 cc's an hour to 15 cc's, and his calories have gone up from 22 to 30.

Wednesday, November 23rd

Happy Turkey Day to Everyone!!

Will did great on his transfer to Vandy... he didn't even require any sedation. He pretty much slept the whole trip.

We got some good news from Will's cardiologist, Dr. Parra. He talked to Dr. Bove (heart surgeon), and he is still thinking that Will may be able to use both ventricles, which would be great for him long term!! We will have to "wait & see" how things progress.

I also talked to one of Vandy's neurosurgeons, and it looks like they want to put in a shunt next week, probably on Tuesday or Wednesday. We knew that he would probably be getting a shunt, but we didn't expect it to be so soon.

Vandy docs are also more optimistic about NOT needing a tracheotomy. They said they will give him a few tries to get off the ventilator before considering it.

We are so thankful that we get to be at home for Thanksgiving. I got to sleep in my own bed last night for the first time in 6 weeks! It was so great... I had a hard time getting out of bed.

Monday, November 21st

It looks like we are still on for coming home tomorrow!

Here is Will's itinerary:

9:00 ambulance team arrives to pick Will up
9:30 leave University of Michigan hosital
10:00 board plane
10:15 take off for Nashville
10:30 arrive Nashville
11:15 arrive at Vanderbilt hospital

Our flight leaves the same time as Will's, so we expect to get to the hospital right about the same time. We can't wait to come home, and I know many of you are anxiously waiting to meet our little man.

I will let you know how it goes tomorrow!

Saturday, November 19th

Will's doctors found something on his heart echo yesterday... he has some effusion in one of his lungs. This means that he has some fluid build-up in his lung. They don't know what caused it. The fluid could be the result of an infection among other things. When they did his chest x-ray this morning it showed an improvement. Right now, they are going to try and let Will's body take care of it on its own. But, if it worsens they will do a tap, or if it gets bad enough, a chest tube. If he gets a chest tube, this will delay his transfer to Vandy... so please pray that this doesn't happen!

The effusion also caused Will to have a minor setback with his ventilator. They had to stop his sprints yesterday and eventually went up on his ventilator settings.

Other than that he has been a happy baby. He was awake for a few hours today looking around and staring at his monitors.

His feedings have also been going really well. No spitting up!! But you have to remember that the feeding tube is going into his small intestine, so that doesn't mean his acid reflux is gone... we will have to tackle that later. We are so relieved because we thought he might need a stomach surgery, and for now it doesn't seem that he needs it.

Thursday Update

Well, we have great news!

Insurance has decided to approve Will's transfer flight to Vanderbilt!!! This could not have been possible without his attending cardiologist, Dr. Gosset at the University of Michigan. He simply would not take no for an answer!

The plan is for Will to leave this Tuesday, provided he remains stable and his heart echo checks out ok (this will be done tomorrow).

Doctors will continue his sprints until his departure, but they will not try to take him off the ventilator. The reason why is if they were to try and take the breathing tube out and he failed quickly like he did the last time, the Ear Nose & Throat doctors would want to immediately perform a tracheotomy in the OR. This of course would prolong his stay, which would be unnecessary considering Vandy docs are more than capable of handling it. Although, Vandy docs may come to a different conclusion, which is good because it allows us to get a second opinion.

I also want to say thank you to the Uncle Jay and Uncle Joe for setting up the William Blake Burns fund. I cannot even put into words how much your generosity means to us!

Thursday, November 17th

Will has been doing well. He started doing his "sprints" again on the ventilator. He has passed 2 so far!!

He has also started his feedings again... we just hope he can keep them down. So far, so good.

We'll keep you updated!

2nd Tuesday Update

Will just back from his surgery. He tolerated it very well. He is still out of it though... it takes a while for the drugs to wear off.

His neurosurgeon decided to put in a reservoir instead of a shunt. The reservoir is sort of like a button, and it is placed on the top of his head. Once a day doctors will take something like a syringe and remove the extra spinal fluid from his head. It is a less obtrusive procedure and has a lower chance of complications than the shunt.

More than likely he will get a shunt when he gains more weight (weighing 8-10 lbs.) and when his ventilator issue has been resolved.

Tuesday Update

Unfortunately, we got some bad news today about Will. Neurosurgery has been following Will for the past few weeks with weekly ultrasounds. Unfortunately, Will's brain is experiencing some swelling in his brain because spinal fluid is being dammed up from the intraventricular bleed.

Will is going to have surgery in a few hours to put a shunt in his brain. It should relieve his brain from the pressure by draining out the extra fluid and help prevent injury. The doctor told me that this shunt will probably remain in Will's head for the rest of his life.

I will update later on how his surgery went.

Tuesday, November 15th

I finally heard back from insurance late yesterday and they have denied my claim to transfer Will to Vanderbilt. This didn't suprise me. But, doctors from both hospitals say they are going to fight insurance on this... Michigan may get their lawyer involved. Will's doctor said they have been able to change their decision before. It's nice of them to do this for us, but I'm not counting on it.

At this point I am preparing to stay here for what looks like another month at least. I just hope that we will be home for Christmas. Whatever happens, it is meant to be.

Will is a strong little man, and I can't wait for everyone to meet him!!

Sunday, November 13th

Nothing has really changed since Friday. Weekends are usually slow... I just want to update the page, so everyone is kept up to date.

The 2 main things doctors are trying to tackle are: 1) getting him off the ventilator and 2) his feedings. He has had a hard time the past couple of days keeping down even the slightest bit of food. If they aren't able to make progress, Will may need a stomach surgery that will help with his acid reflux.

Hopefully I will hear back from the insurance company tomorrow so we can make our plans as to whether or not we will stay in Michigan for the rest of Will's hospital stay.

Saturday, November 12th

Mommy & Will

Saturday, November 12th

Will Sleeping

Friday, November 11th

Will is doing good. His ventilator settings have gone down a lot in the past 24 hours. His doctors will probably try taking his breathing tube out again some time early or middle of next week.

Josh and I have also talked with his doctors here and at Vanderbilt about transferring him to Vandy if he fails his next try of removing the ventilator. If he fails quickly like that again, he will more than likely require a tracheotomy. And this would probably add a few more weeks to his hospital stay. I would rather the docs who will be taking care of him on a regular basis at home put it in rather than the docs from Michigan. The only reason we came here was for the heart surgery. Both hospitals are ok with that, provided that Vandy's PICU can make room and our insurance company will pay the $10,000 it will cost to fly him there.

We have already got the ball moving on that. We don't know what our insurance will say. We'll let you know!

Thursday, November 10th

We got the results of the bronchial scope that the ENT docs did yesterday. They weren't able to get a clear look at all of Will's airway structures because he wasn't stable enough to remove his breathing tube. They were able to look at his lower airway and found some secretions (which they sucked out) and a small ulcer (which they say should heal on its own... it was caused by his breathing tube). Everything they did see looked normal, but they didn't get to see his vocal cords. They did put in a smaller breathing tube to help the ulcer, but he has a larger air leak.... hopefully the bigger leak won't affect him getting weaned off the ventilator again.

Essentially we are back at square one with the ventilator. It was at the same settings yesterday as it was when he came back from his heart surgery. It is unclear at this point how long it will take. I do know that when they get him down to the lower settings again, they will want to do his sprints for a couple of days. It's another wait & see game!

Josh... Will & I wish you Happy Birthday!! We love you!

Wednesday, November 9th

Will had a rough day yesterday.

When his doctors removed the breathing tube, Will did not tolerate it. His body was working too hard to breathe, so they put it back in. So now, the doctors need to find out why this happened since his sprints were going so well. They have already ruled out an immature diaphram. Now, they need to rule out an injury in his airway as a result of the ventilator... unfortunately a risk you have to take. The most troubling injury would probably be injury to the vocal cords, which unfortunately the only way to cure would be to do a tracheotomy.

The ear nose and throat doctors are going to a procedure today to find out if there is any injury. They are going to take him to the OR (only because this is where their tools are) this afternoon to do this procedure. They will take out his breathing tube and put a scope down his airway to see if there are any injuries. The ENT doctor I spoke to last night said he didn't think he was going to find anything, but obviously can't guarantee anything.

A good thing about Will going to the OR today is that they are going to take out his dialysis catheder while they are there.

If they don't find anything, they will take Will to the OR next week when they reattempt to take out his breathing tube so that the ENT doctors can be present with their tools in case he has difficulty.

Monday, November 7th

Will's kidney doctors have given their ok to take out the dialysis catheder. Will's heart surgeon, Dr. Bove will be taking it out. Only thing is, his operating schedule is jammed packed. Will's cardiologist is going to get with him on coordinating the surgery. It could be a week, it could be tomorrow... who knows? The sooner the better, cause we are getting so close to coming home! The surgery itself is very simple... in fact, a lot of patients have done it as an outpatient in one day.

More than likely, Will's doctors will remove his breathing tube tomorrow morning. They usually like to keep the patients in the peds. cardio-thoracic intensive care unit for a day or two afterwards to make sure that there are no complications. And hopefully, he will be moved to moderate care later this week. This is also assuming he does better with his feedings.

Will did have his upper GI procedure this morning and it showed that his digestive anatomy was normal... he just has acid reflux, which they hope to treat with medication.

Sunday, November 6th

Will has had a decent weekend.

He did fail two of his sprints yesterday... the 1st one after 30 minutes and the 2nd one after 45 minutes. This is not uncommon for a premie, that is one of the reasons why they wanted to run the sprints throughout the weekend. He has been breezing through today's sprints.

Will continues to have problems with his feedings, even though he has a feeding tube going into his small intestine and is on 2 acid reflux medications. He spit up 11 times last night. So, his doctors have ordered what is called an upper GI. This is a procedure where radiologists put dye down his feeding tube into his digestive system and see what could be causing this problem. It could be a number of things... acid reflux, immature sphincter muscles at the top and/or bottom of the stomach, an obstruction, etc. Once they know what is causing it, the doctors will know how to treat him better.

I haven't met up with his kidney doctors yet, but I will tomorrow. Hopefully, they will be able to tell me when they plan on removing his dialysis catheder. I hope it's really soon!

Will's doctors did say that they will keep in his ventilator if they plan on doing the surgery within the next 2-3 days, but if it will be in a week or later they will go on ahead and take it out, perhaps tomorrow if continues to do well on his sprints!!

Friday, November 4th

Will is doing great!! He has been doing wonderfully on his sprints... his doctors will continue to do the sprints over the weekend and they plan on taking out his breathing tube on Monday.

But, I still have to meet with his kidney doctors about removing his dialysis catheder (it requires a surgical procedure). I want to make sure that they don't remove the breathing tube if they will have to put it back in all over again for the surgery. So, it may be a little longer before they remove it... we'll have to wait & see. Hopefully it will be sooner because I can hardly wait to hold him again... it's been 3 weeks.

Will is off all of his blood pressure medicines. He is also down to just one anti-seizure medication.

Wednesday, November 2nd

Will continues to do well... his ventilator settings have gone down considerably, and his doctors plan on doing "sprints" tomorrow if he continues to do well. Sprints are where the doctors will turn off the ventilator for one hour intervals over a day to see how the patient will do before taking the ventilator tube out.

Will continues to have problems with acid reflux, so they have placed a different type of feeding tube in his nose... it goes past the stomach and straight into the small intestine. He is also on two medications now, one of which is Zantac.

Will had a head ultrasound Monday, and his bleeding and swelling has not gotten worse. So, they have decided to do the ultrasounds only once a week now. Looking good!

I will let you know how things progress!

Tuesday, November 1st

Will had some feedings yesterday... the first few were pedialyte and then he got some breast milk. But, he threw them up. This happens a lot with patients like Will... it just takes some time for their digestive systems to get into the swing of things.

Will has been weaned off of his morphine and dopamine medications. (morphine for pain; dopamine for blood pressure) Another step to recovery!! Doctors are still working on taking him off the ventilator. One step at a time.