Tuesday, February 28th

Will gave us quite a scare this morning.

When I arrived to his room this morning, his nurse said that Will had been keeping her very busy... not a good sign. Apparently, 10 minutes before I got there, he had another "spell." His heart rate, blood pressure, and oxygen saturations dropped suddenly. They gave him some albumin and turned his pacer wires on to keep his heart rate up.

At first, no one knew exactly what caused this, but it now seems that his blood vessels were dry. The reason why this happened is because his TPN and lipids (IV nutrition) had to be turned off because they were not compatible with some of the other meds they had to administer through his PICC line. Normally, you could have the TPN and lipids run through another line, but Will only has one point of access (PICC line). Since he is a cardiac baby, it is extremely difficult to get a line in him... not to mention that he can't have lines in certain areas because of the different issues he has (trach, VP shunt, clots, infections, etc.).

So, for now he seems stable. It is possible that this will happen if he gets "dry" again. Usually they can correct this in a hurry. In the meantime, his diuretic drug, lasix, has been turned down to only 1 dose a day so that his urine output slows, which has worked thus far.

We'll just have to wait & see... something that we have become quite familiar with.

Monday, February 27th

Will had a decent day... he remained stable. Not much really changed.

He hasn't had anymore bloody stool, and he seems to feel better than he did over the weekend. He had a couple of small spells this evening where he was very mad... it seemed to me that he was suffering from withdrawl since his morphine drip has been turned off. They have been giving him doses here and there, especially when they do his chest dressing changes, which are every 4 hours! They have to do it so often because the docs want his incision to stay as dry as possible so it can heal. The bad part about doing so many dressing changes is that his skin is raw where the bandages are taped down and removed over and over again.

Will's hermadocrite dipped down again, so he required another blood transfusion today. This wasn't that big of a deal. In fact, the pediatric general surgical team said they won't come back to check up on him unless something happens and he isn't stable anymore.

The docs also had to increase his ventilator rate from 30 to 34 because his CO2 level had increased when they did a blood gas this evening. This should be easily weaned down when Will is feeling better.

Sunday 2nd Update

Will & Wyatt "Heart Buddies"

Checking Each Other Out

Wyatt: "Hey, I Remember This Place!"

Will & Cass Lowrie

Lori & Wyatt

We had a wonderful visit with the Lowries this afternoon. Wyatt looks great!

Will is still stable... nothing new to report.

Sunday, February 26th

Will remained stable overnight.

Pediatric surgery came by again this morning and recommended that Will have abdominal x-rays done everyday; remain off feeds for 10-14 days; keep all his meds going through IV (instead of orally).

He was awake for a little bit this morning, he was in a good mood until he had another bloody diaper and his trach needed to be suctioned. After that, he fell asleep.

On a good note, we look forward to seeing Lori, Cass, and Wyatt Lowrie who are coming to visit us this afternoon. I can't wait to see them!

Saturday 2nd Update

Something serious is definitely going on with Will's digestive system. It could be his colon or his intestines, but they don't know exactly what. It could be an infection; it could be that he has bowel shock - meaning that parts of his gut may not be getting sufficient blood flow.

When the general pediatric surgical fellow examined Will's anus with his finger, he had more blood come out. He also said that Will's stomach felt more distended. The surgeon decided to put an N-G tube through Will's nose and into his stomach. This tube is suctioning anything that may be in his stomach. Will's feeding tube is draining as well.

The surgeon also said that it will be another 14 days or so before Will can be started back on his feeds again.

The key for Will right now is to stay stable. So far he has done so.

The surgeon said that Will has been through a lot, but with him being such a fragile patient, a serious infection could be "catastrophic" for him. Not something I want to hear. We're going to "wait & see" what happens. I'll keep updating as I get new information.

Saturday, February 25th

Will is experiencing some problems this afternoon, and the docs don't seem to know what's causing them.

A little after 4:00 this afternoon his blood pressure and oxygen saturations dropped suddenly for no apparent reason. When they did a blood gas, it showed that his hermadocrit was low (27) so they decided to give him some blood, in addition to some albumin. They also stopped his feeds. It seemed to work and his blood pressure and sats went up. They also did a chest and an abdominal x-ray, and neither showed any changes.

Just a few minutes ago, his nurse was changing his diaper, and Will had a very large bloody stool. This explains why his blood pressure and sats were low, but they don't know what is going on.

Right now, they have turned his g-tube (feeding tube) to suction, so his stomach will be empty and can rest. They have just run some blood work, so hopefully they can find out really soon what is going on.

I pray that this is nothing too serious, and can be corrected quickly.

I'll keep you updated!!

Friday, February 24th

Will has had a minor setback.

His incision on his chest is infected. The infection, like Dr. Bove had feared, came from his trach. It's nearly impossible to prevent this because the incision is so close to his trach site. The attending docs said they want this infection completely cleared before he is sent back to Vandy... they want to make sure this infection doesn't get worse and get in his bloodstream or cause Will any life-threatening problems.

They have put Will on some powerful antiobiotics, but it could take up to 10 days before it is cleared. So, at the very earliest we will be back in Nashville the week after next.

Thursday, February 23rd

Watching Mommy Make Faces

Telling Us What He Thinks

Will has developed quite a personality. Over the past couple of days he has been "talking" to me. He moves his mouth and his tongue like he has something to say.

Will's favorite thing to do is watch Mommy make all kinds of silly faces. He just smiles and smiles. Then, for the first time yesterday Will laughed! It was so special... I just wish Daddy could have seen it.

Prayer Request for Jorianna Nichols & Family

Will is doing fine, but one of our friends that we have come to know and love, is not.

Some of you might recall Josh & I telling you about the miracle baby at the University of Michigan, Jorianna Nichols. She is 10 days older than Will and has been at U of M's ped's cardio-thoracic ICU since she was born. She had a heart defect that has never been seen before, and Dr. Bove managed somehow to "fix" her. Dr. Bove had even said that it was a "higher power" that saved her, not him. Since this surgery, Jorianna had many bumps in the road, and went through a lot of the same things that Will has.

Over the past few months, Jorianna's mother, Ruth, and I have become quite close. Ruth was in the waiting room with us the day of Will's surgery, crying and praying with us, asking that God please restart Will's heart.

Jorianna was supposed to go home on Monday and had been in U of M's stable ventilator unit. Overnight, she became septic (developed some sort of infection) which made her blood pressure drop, and she was urgently taken back into the ICU.

Unfortunately, Jorianna could not win this battle, and went to be with Jesus this afternoon. She was surrounded by her loving family. Her parents are on their way home right now to Grand Rapids, Michigan to tell their two children that she has passed away.

Her mother is going to let me know the funeral arrangements in the next few days. I hope I will be able to make it and show her the support that she has given to us.

Tuesday 2nd Update

Will had a good day. Nothing new to report really.

During rounds this evening, the docs said they thought Will would be ready to be transfered back to Vandy next week. They will discuss this further on Friday when Dr. Bove gets back in town from a trip. So, as long as Will continues to make progress and Dr. Bove is ok with it, we'll be back in Nashville really soon!! Yeah!!

I'll let you know when I get details!!

Tuesday, February 21st

Will is sleeping soundly this morning. He looks like an angel.

Will's blood gases weren't looking all that great early this morning, so they had to go up on some of his ventilator settings this morning... his rate went from 24 to 30. After the changes were made, another blood gas came back and it was perfect... in fact, it is the best one he has ever had.

Other than that, not much to report. Once his pacer wires come out the neurology team wants an MRI done to get a good look at Will's brain anatomy, and to see if any intervention is needed with his VP shunt.

I'll keep you posteed on his progress!

Monday 2nd Update

I just talked with the neurology team and they said that the EEG this morning showed no seizures!!!

They have increased his dosage of phenobarbital, and they'll keep a close eye on him. Praise God!!

Other than that, Will is still doing well. He is off of his milrinone drip, and he is still on a low dose of dopamine. They have removed his foley catheder and one of his picc-lines. The fluid coming out of his remaining chest tube has slowed down quite a bit, so hopefully it will come out soon as well.

I think that I am going to have a head full of gray hair by the time I'm 30! I found 6 grey hairs this morning as I combed it. I guess that's better than Josh... he won't have any hair!!

Monday Update

The preliminary results of Will's cranial ultrasound shows no changes. The results of his EEG may not come back as late as 4 o'clock this afternoon.

I'll keep you posted as I get more information!

Monday, February 20th

Unfortunately, Will has not had a good morning.

Around 7 am he had a seizure. His right arm and hand twitched for about a minute. This happened again about an hour later. The doctors aren't completely sure it was a seizure... it could have been a normal newborn movement. But, with his history of seizures, brain bleed, and swelling they performed an EEG and a cranial ultrasound. It will be a little while before I get the results.

I can't remember if I had posted anything about this on the blog before surgery, but neurology did a cranial ultrasound before his surgery to get a baseline in case he had any neuro problems post-op. They did find that his VP shunt isn't working as well as it should. A small part of one of his ventricles is still swollen and compressed. This shouldn't occur if the shunt is working properly. Unfortunately, they can't tap his reservior on the top of his head to get rid of this extra fluid because the catheder doesn't go down far enough into his brain to get it out. So, I was already prepared for another neurosurgery to repair or replace his VP shunt. This small bit of swelling could have caused an irritation in his brain, which could have led to his seizures.

It is also possible that his phenobarbital (anti-seizure med.) is not at a therapeutic level, which could have caused him to have a seizure.

The docs also told me that his blood pressure did not change during his "seizures," which could suggest that this was not a seizure as well.

So, right now I'm trying to stay positive. This may not even be something serious. But, even if it is, this is something that God's Will can't handle.

Sunday, February 19th

Will is still moving right along!

A cardiac surgical fellow took out one of his chest tubes this morning. Will's dopamine drip has been weaned down some more... he should be off it soon. He is also down on his ventilator settings. Couldn't ask for anything more. I'm so proud of him!!

Saturday, February 18th

Check out Will's hair! A bad case of bed hair!

Will had another great day. His epi and vasopressin (blood pressure meds.) have been turned off, and now they are weaning his dopamine and milrinone. His ventilator settings are down as well.

Will was wide awake all day today. He liked it whenever Mommy made silly faces at him. His nurse commented that she had never seen a baby respond to his mother (or anyone for that matter) as well as Will does with me. If I am next to him he just stares and stares at me (unless his monitor screen catches his eye). Now that he is more alert, he is starting to look at me like he wants me to hold him. He got very spoiled when I started to hold him all the time. You can't make a baby understand that he has too many lines and tubes coming out of him to be held. Hopefully, it won't be TOO much longer... it's so hard to show restraint, especially when he looks as cute as he did today.

Friday, February 17th

So serious! Will was like this all day today.

Will did great today. The surgeon was able to complete his chest skin closure this evening. Thankfully, Will didn't need a skin graft. He tolerated it just fine! Now, we can work on getting him stable for transfer to Vandy! They will need to remove two chest tubes and pacer wires, as well as wean his ventilator settings and get him off of his pressure meds. There's no way to know for sure how long this will take, but hopefully not any longer than 2 weeks.

I'll keep you posted on his progress!

Sweet Baby Will

Nothing to new to report... just thought we'd share these pics of Will that we took this afternoon.

Thursday, February 16th

Will is doing better this morning. He has been awake for a little bit, and his blood pressure is back to where it needs to be.

I talked with one of the cardiac surgical fellows, and she said that she wants to complete Will's skin closure tomorrow. When I asked her when she thought they would try to close his sternum, her answer surprised me. She said that they were going to leave his sternum open. She says it is rare for them to do so, but in Will's case they have to. She said that when he comes back for surgery in a few years to replace his conduit, they will try to close it then. She said that leaving his sternum open should not cause him any problems; he will have to avoid contact sports for sure.

It does make me nervous that the only thing protecting his heart is some tissue and skin, but they have reassured me that he will be fine.

The good thing about it is that we won't be here as long as I had predicted. Once Will is off of his blood pressure meds and seems stable from a cardiac standpoint, we can be transferred back to Vandy so we can prepare to go home!! What a day that will be! My estimate is that it will be another 2 weeks at least before he will be ready to transfer... if he has no complications. And knowing Will, it's definitely a possibility!

Wednesday 2nd Update

Will hasn't done as well as I would have liked today. He is in somewhat stable condition... he is sort of walking a fine line at the moment.

He still hasn't come out of his sedation from his trip to the OR, which is bothersome to me, but the docs told me not to worry. (easy for them to say) His urine output has slowed down, but this is to be expected since his chest has been closed a little bit.

The doctors are watching his blood pressure very closely. It is a little lower than they like, and when they try to up his blood pressure medicine dosages or increase his volume, it doesn't make a difference. They can't seem to figure out why this is going on, but they aren't too concerned. Typical Will if you ask me. I think he likes being a challenge!

He will probably be fine in a couple of hours. It takes him longer to recover than most babies.

I'll continue to keep everyone updated!

Wednesday, February 15th

Will just came back from the OR. It was a long morning.

The surgeons attempted to do just a skin closure, but they quickly realized that he couldn't tolerate it. His lungs couldn't ventilate properly with that much pressure. So, after about 20 minutes they opened up the middle part of his incision to relieve this pressure.

As I expected, Will is back to square one again with his blood pressure medicines. He is on high dosages of epi, dopamine, vassopressin, milrinone, and morphine. If everything goes well, it will probably take another week or so to wean off these medicines.

I haven't been able to talk to Dr. Bove yet, as he has 2 more surgical cases today. When I talk to him later, I should have a better idea of what we should expect for Will.

Will is very fragile right now and we just hope he remains stable over the next several hours.

I'll continue to keep you posted!

2nd Valentine's Day Update

Will's First Valentine's Day

Our Special Valentine

Will is scheduled to go to the OR tomorrow for removal of his chest stints and a possible chest closure. They think he will be first case... around 7-7:30 a.m. But, you never know, it could be moved to a later time. It should only take an hour. We'll let you know how it goes!

Tuesday, Valentine's Day

Will is doing great!!

He is almost down to his dry weight. He looks so skinny compared to what he looked like over the weekend! He is off of his epi drip... he is also down on his dosages for his milrinone and morphine drips.

Dr. Bove stopped by earlier and said that he is going to take Will down to the OR later this week to see about closing his chest. While in the OR, Bove will be able to get a better look inside his chest to see what is Will's best option. He will either do a skin closure, which will leave the sternum open, or, Bove will close his chest completely. Bove's biggest concern with closing Will's chest completely is that he will get sick again and require a lot of support.

Will is a brand new baby since the surgery. He looks better than ever. It's so nice to have a pink baby for Valentine's Day!! We are so blessed.

Monday, February 13th

Will is still making progress!

He is off of his vasopressin drip, and he is almost off of his epi drip. They have also weaned his milrinone, dopamine, and morphine drips. His ventilator settings are the same, but that's fine. He also lost a pound of fluid over a 24 hour period. This is also a big achievement!! Go Will go!

Currently, Will has 2 tubes that are keeping his chest open. Dr. Bove is thinking about removing these tubes later this week and see how he does without them. The main concern is how much pressure his chest wall will put on his conduit and his heart once these tubes are removed. Once they see how he does, they can think about what they should do about closing his chest. They may have to do a tissue/skin graft over the opening until they feel his chest can be closed safely. The main reason they would do this is to prevent an infection, while giving his body time to grow so he can tolerate a chest closure.

Sunday, February 12th

Will has had a good weekend. He is stable and continuing to make progress.

His ventilator rate is down to 28 and his oxygen is down to 40%. They have also been able to slowly wean on his medicines. This is such a slow process, but every small improvement is a big victory for Will.

Will has been having problems with effusion (fluid) outside of his right lung. The chest tubes usually help with removing this extra fluid, but for some reason his chest tubes didn't to the job. This is a concern because it can cause him to have trouble ventilating properly. So, this morning a cardiac surgeon fellow had to go into Will's chest and suction out the extra fluid and redo one of his chest tubes (he has three). The procedure went well and it seemed to do the trick.

Other than that, he is making some headway on getting all the extra fluids off. This takes time as well. We have to be patient!

I'll continue to keep you posted as always!

Friday 2nd Update

Josh & I are on are way back to Ronald McDonald, but we wanted to let you know how Will is doing this evening.

He is continuing to make small strides. His ventilator rate is down to 38 and his oxygen is down to 70%. They have also weaned his epi (pressure med.) down a little bit as well. His urine output is also improving, which is very important because he needs to get all of those fluids out of his body!

He had an EEG and a head ultrasound this afternoon to make sure that he isn't having any seizures like he did with his 1st surgery and that his brain looks ok. We're happy to report that his brain looks good with no seizures!!

He's been awake most of the day and has been happy. He finally went to sleep this evening and he is resting peacefully. He does have a bad case of bed hair though... it is still a little sticky from the glue they put in his hair for his EEG, and it's standing straight up!!

We'll continue to keep you posted as always!!

Friday, February 10th

Will did very well last night considering what he's been through.

A few minutes ago, I was sitting at Will's bedside holding his hand, when Dr. Bove came in from behind me and gave me a hug. (This took me aback because to me, it seemed out of character for him to do that.) He asked how we were holding up, and I said that we were hanging in there.

Dr. Bove said that Will was "a tough cookie." He said he hated to continue to use the word "surprisingly," but he never expected to see Will not only make it off the bypass machine, but to have a relatively stable night. Will had his ups and downs, but he did very well considering what he's been through.

They were able to make progress on all of his medicines, except for milrinone because it helps keep the heart from working too hard. They were also able to make headway on his ventilator... rate down from 50 to 46 and oxygen down to 80% from 100%.

Will has been wide awake most of the morning. He seems happy; not in any pain.

What happened to Will last night was nothing short of a miracle. God continues to hear our prayers. Will is truly "God's Will."

Thank you to everyone for praying. Keep the faith!!

Thursday 5th Update

What a long day it has been... I feel like I have been run over by a truck.

Will made it off of the bypass machine and into the ICU... this surprised everybody, even Dr. Bove. Nobody expected him to make it. Bove said that Will was indeed a fighter!

Dr. Bove said that when he opened Will's chest, his heart muscle was thick and full of fluid. He said that his pressures were higher than what he had anticipated. Bove also found that his pulmonary artery was a bit small, so he made a patch (which did require him to put Will on circulatory arrest... but not for very long; nothing like the Norwood). He said that the artery is still small, but over time it will get bigger. He said that the Rastelli repair itself went very well. The echo afterwards showed that the heart was functioning well.

The pressures inside his heart are at a good level for him. And, amazingly, Will didn't need the pacemaker for very long... he came up without it.

We are still not out of the woods by any means. He is very critical. The next 12, 24, 48 hours will be very telling in how (or if) he recovers. Will is on extremely high levels (even maxed out in some cases) on several medications (epi, vassopressin, milrinone, dopamine, fentnyl). He was also bleeding out a little more than he should, but the blood flow has decreased over the past few minutes.

Dr. Bove had to leave his chest open due to the pressures and mainly because of the position of his conduit. He even placed a tube across his chest to make sure that his chest does not close a little bit on it's own, because even the smallest bit of pressure could cause problems with his conduit. After five or seven days, Dr. Bove (or one of his plastic surgeon colleagues) will take some of Will's tissues to help close his chest up a little. This is sort of a temporary measure to protect his chest opening from getting infected by his trach. It will be a good while we think before Will can tolerate a normal chest closure... even then, Dr. Bove will have to take him down to the OR to do the procedure. (They normally due this at the bedside.)

Josh & I are sleeping in a sleeping room tonight next to the ICU so we will be in close proximity in case he codes. We have asked that they not put him on ECMO (a means of life support) in case this happens. With his history of a brain bleed, ECMO would more than likely cause severe brain damage, and just delay the inevitable.

Will is the strongest baby I have ever known. When I just went back to see him, I held his hand and kissed his forehead. He immediately opened his eyes and looked at me, which is surprising considering all of the sedation meds he is on. Seeing him do that is so reassuring... He is giving it all he has!!

I'll continue to keep you posted.

Thursday 4th Update

We have a little hope.

The next time they came in after the last update they said that Will was not coming off the bypass machine and that they would give it another 30 minutes, before trying to keep him alive long enough so that he could pass away in my arms.

An hour later they came in and said that they have been able to slowly wean him off the bypass machine, and now he is on a quarter flow. They also put in a pacemaker to help speed up his heart. They will try to slowly wean him off the rest of the flow on bypass and take him up to the ICU.

We hope to hear from them soon. We'll let you know what happens.

Thursday 3rd Update

We just got word that Bove completed the patch between the right and left ventricle. He has moved on to placing the conduit from the right ventricle to the pulmonary artery. Bove still feels that it doesn't look good for him.

When Bove completes the operation, he will leave his chest open as he takes Will off of the heart & lung bypass machine. They will observe the heart in action to see if the procedure was successful and if he needs to make any changes to make his heart work better.

We should hear back in the next hour/hour and a half.

Keep the prayers going!!

Thursday 2nd Update

We just got word that Dr. Bove is not very hopeful. He doesn't think the anatomy of Will's heart is going to take this procedure.

Please pray for him.

Thursday, February 9th

We just got word that they opened Will's chest and are now starting his surgery. So far so good!

They will update us in an hour!

Mommy kisses Will goodnight

Mommy & Will

"Hey! You're not Mommy!"

Just thought I'd share these pics of our special time with Will this evening. They let us hold him one last time before surgery. He was so happy. We cherish every moment with our little guy!!

Keep checking the site throughout the day tomorrow... I will be making several updates!

Wednesday, February 8th

We just talked to Dr. Bove, and this is what he had to say:

The surgery will be tomorrow, and it will start sometime around 9 or 10 in the morning. This will be his only case, as this procedure will take several hours.

He has decided to do the Rastelli Procedure. As you may recall, he is going to insert a conduit from the right ventricle to the pulmonary artery, patch the hole between his left and right ventricle, and remove his B-T shunt.

Dr. Bove is going to use a cow's jugular vein for the conduit. This is a new type of conduit that Michigan started to use... it has been used in the U.K. with fabulous results. This conduit has not been approved by the FDA yet... it is currently part of a study. Bove said that he has used it on around 80 patients thus far, and all seem to be doing very well with it. This conduit will have to be replaced in about 3 years.

I told Dr. Bove that one of my biggest conerns about Will's surgery was him having another brain bleed or stroke. I asked him what his thoughts were, and it kind of surprised me when he said that he didn't anticipate that it would be a problem. He said that this procedure does not require Will to be in circulatory arrest like his first surgery, the Norwood. He said that the Rastelli will not be as hard on his brain, and he thinks Will is healthier (and bigger) than he was for his Norwood.

Overall, Bove was optimistic about Will's procedure. This totally blew us away. Obviously, there are no guarantees, and disaster is only a breath away.

These are some of the possible complications:

1. (low-risk) the conduit isn't big enough and blood is blocked from getting through
2. (higher-risk) Will bleeds out during the surgery
3. Infection after the procedure due to his trach.

(Will's chest may have to be left open after the procedure, either because the pressures inside his chest are too high, or the placement of the conduit makes it too risky. If it is left open for a few days, it is quite possible with the trach being so close to the incision that germs get in the chest, causing an infection.)

4. stroke or brain bleed
5. nerve damage
6. death

The first 24 hours after surgery will be the most telling of how successful the procedure is. What we can't wait to see is a pink baby! He will actually have oxygen saturations in the upper 90's to 100!! No more blue/cold hands and feet!

Tuesday, February 7th

We finally got to speak with Dr. Bove. We didn't speak to him until late this evening... he had a surgery today that took 8 hours!! He told us that even though he hasn't had an opportunity to really look over Will's heart cath and echos, he is working him into his surgical schedule this Thursday. He said that he would speak to us tomorrow evening about what he plans to do for surgery.

Will had a good day today. He was awake most of the time. He seemed to be really happy this afternoon. He smiled while mommy held a pacifier in his mouth. (He doesn't really know how to suck on it yet, but he does like to chew on it)

I'll let you know what the plan is after I talk to Dr. Bove!

Monday 2nd Update

No news yet! Dr. Bove had a long day today and he hasn't had an opportunity to sit down and really analyze Will's heart cath and heart echos. I know he went to look at them this evening, and I prefer that he takes his time to think about what is best for Will since this is not a cut & dry case. You can't rush it!

I'm pretty sure we'll talk to him tomorrow. We'll keep you posted as always!

Monday, February 6th

Will is doing better.

They started him on Dopamine, which helped him get better blood flow to his kidney, which helped him pee! He has already gotten a lot of fluid off, and as of last night he weighed 9 pounds, 9 ounces.

Right now they are concentrating on weaning his ventilator settings and getting his blood sugar levels in order before surgery. They are also going to slowly start his feeds back again.

Dr. Bove has two surgeries today. We hope to speak to him later this afternoon. We do know that he has no surgeries scheduled for tomorrow, so it could be less than 24 hours until Will goes into surgery.

We'll let you know as soon as we hear something!

Saturday, February 4th

Will is not doing as well as I would like.

This morning his blood gasses were not very good, so they had to go up to a rate of 44 on his ventilator before he would get where he needed to be.

Will is also struggling with his kidney function. They always want him to pee out more fluids than what he takes in. But, for some reason he isn't. His weight is up to a whopping 10 pounds, 3 ounces. I suspect that his dry weight is close to 9 pounds. That is a lot of fluid for a little guy like Will! His eyes are so swollen, and his belly is much bigger than usual. The doctors have addressed this issue by giving diurel in addition to lasix, every 6 hours. They have also given him a blood product (albumin??) that is supposed to help remove fluids from the tissues and put them into the bloodstream, helping him pee the extra fluids out.

I worry about his kidney a lot. This is not good for someone who is about to go into heart surgery. His kidney will take a big hit. I'm sure they will want to insert a PD cath into his belly again during his heart surgery, so they can dialyze him if they need to.

Friday, February 3rd

Will is doing okay. He was very alert this morning... if he wasn't looking at mommy, he was staring above at his baby warmer, which has little mirrors that are great for babies to gaze at.

His hermadocrite is a little lower than they like, so they are giving him a blood transfusion. They think that giving him blood will improve his numbers on his blood gas, and then they will be able to wean him on his ventilator rate, which is still 40.

Pain Management did a consult earlier, and they decided to put Will on a morphine IV drip. Since he is on morphine, they are going to stop his methadone. They are also going to give him ativan (pain/sedative med.) as needed.

The doctors are holding their weekly conference this afternoon. If Bove's schedule permits, he will join them. They hope to come up with a plan for Baby Will.

We're staying in my Dad's hotel room at The Residence Inn until a room comes up at Ronald McDonald House. With the superbowl going on this weekend, we really have no idea when that will be.

I'll let you know if we hear anything!

Thursday, February 2nd

We have finally arrived in Michigan!

Will did not tolerate his transport very well. He had a couple of spells where his oxygen saturations dropped, and his flight nurse had to administer some sedation during the flight to help.

When he arrived in Michigan they had to do some "tweaking" with his ventilator settings because his blood gas was not very good. They went up on his rate from 24 to 40. This should only be temporary... he should do better once he is better situated.

It was so weird for us being back at Michigan. It feels like it was so long ago that we were here, but it has only been 2 months! It was very reassuring to see the nurses and docs that we got to know so well. We are in such great hands!

Now it seems that the docs don't know for sure that they want to do the Rastelli Repair. They are still considering 3 options:

1. Repeat the Norwood Procedure and replace his shunt

2. Do the Glenn Procedure (2nd stage surgical procedure for hypoplastic left heart)

3. Do the Rastelli Repair

Each has it's own benefits and risks. I think the doctors' biggest fear about doing either the Glenn or the Rastelli is that both require Will to be on the heart lung bypass machine for a long period of time, which puts him at a high risk of having another brain bleed. If they did a repeat Norwood, it could buy him more time and would require very little time on the bypass machine.

The Michigan docs are not very convinced that the pressure reading of 22 from the heart cath is accurate. They think that the blood pressure medicines he was on at the time may have increased his pressure. Still, there is no way to know for sure. I know Dr. Bove can do a pressure reading once he opens Will's chest, but I don't know if he will want to wait until then to make the call on what to do. If the pressures are reasonable, it may be better for him to do the Glenn.

Dr. Bove has a jammed packed surgery schedule tomorrow, so we probably won't have an opportunity to speak with him until Monday. In the meantime, the other docs are going to watch him closely and continue to discuss his options.

Once we talk to Dr. Bove we should have a better idea of what is best for Will at this point. We'll let you know!

Sweet Baby Will

As I tried to take Will's picture this afternoon, his attention quickly shifted to his nurse when she walked up to his bed. He learned a long time ago to watch them closely... you never know that they might do!
But, in all seriousness, we have been so blessed to have such wonderful nurses! I don't know what we would do without them.

Wednesday, February 1st

I just noticed that on yesterday's post I thought it was Wednesday instead of Tuesday. It just goes to show you how easy it is to lose track of time...

Anyway, I just spoke to Dr. Parra and Dr. Moore, and they let me know that Michigan called to tell them that a bed space is now available in the pediatric cardio-thoracic intensive care unit. Vandy lifeflight will pick Will up at the hospital at 7:00 a.m. tomorrow morning to take him to the airport.

The earliest we could schedule our flight is for 9:30 a.m., so Will is probably going to beat us there.

Dr. Parra said that it will more than likely be early next week when Dr. Bove does Will's surgery.

We'll keep you posted!