Comparison

There hasn't been much change. Will was awake for a little bit today. Grandma and grandpa read him books and he didn't seem agitated at all except for not being able to hold his pacifier. I wanted to share a comparison of Will after his two surgeries.

Extubated this morning

Will was extubated this morning. His lungs are still hazy but better. He has fluid in them, and one is partially collapsed but they expect that all the resolve in a few days. His fever is gone and the bleeding has slowed.

Bad night so far

Unfortunately I don't have good news to report. They planned on extubating as soon as Will woke up, but our poor little man was bleeding a lot, had a fever, and his Sats were very low. He is so feisty he was fighting all of the sedatives; kicking and silent crying and that didn't help anything. I begged for all the sedatives and pain meds he could get because he was miserable. Finally they gave him morphine. He had an X-ray which showed a partially collapsed lung, so they paralyzed him (they want him to stop fighting the ventilator) and are just waiting to see what happens now.

In the icu

Glenn complete

We just spoke with the surgeon. Surgery went well. Dr. Manning was happy. He said Will's pulmonary arteries are very long and were slightly kinked which probably caused the lower Sats but thy connected the svc a bit further over and got it straightened out. He came off bypass well and everything is good. We should be able to see him soon.

Glen update 4

The reconstruction is complete. They are taking him off of bypass. So far so good.

Glenn update 3

Will is on bypass. Glenn started. Still doing well.

Glenn update 2

Will is doing fine. Dr. Manning just made the incision.

Glenn update 1

They took William from us right around 740. They let me ride in the stretcher and cuddle with him on the way down. He was in a great mood despite being hungry and tired. He didn't like when we handed him over.

Glenn tomorrow

Please pray for William and his surgical team. His Glenn is first case tomorrow at 730.

Surgical conference

Will was presented at the surgical conference this morning. We are good to go and probably will be first case on Thursday. Dr. Manning (his surgeon) says he definitely expects William to do well. He will be put on bypass, but they won't have to stop his heart.

Hospital life

We are still just hanging out. Nothing new. We went for a walk today, and he loved it.

Glenn procedure

http://m.youtube.com/watch?v=fUPVkKvPGe4

You can use that link to view a video about the Glenn procedure that William will be having next week.

They will be removing his bt shunt and connected his superior vena cava to his right pulmonary artery. We are hoping he won't be put on bypass, but that decision is up to his surgeon.

Our hope and inspiration

Today, will was visited by Meg Roswick, who is one of the first generation to have the three surgeries for hypoplastic left heart. She is a skier, a gymnast, and a really great person to spend time with. It is impossible to tell she only has half a heart!

The Glenn

William is officially scheduled for the Glenn a week from today (August 30th). Recovery is expected to be smooth and quick. Please pray that it is.

Airplane!!

William and I travelled safely by plane to Cincinnati. We are on the floor now and they did an echo and all looks good. Here's to an uneventful night!

Team Will!

If you are on Facebook, look us up! Search Team Will!

Waiting game

In case I haven't said this- it is pretty clear by now that we are not going home until after his Glenn. We have been here a week (not counting the five days before this stay) and there is just no way he will be able to go home until they take a load off of his heart. That is why we are going to go ahead and transfer to Cincinnati this week. He is still so young for the Glenn, but not impossibly young. Today the on call card is trying to get in touch with his surgeon. I already spoke with one of our favorite cardiologists there, who said we are welcome any time. It's better they observe there so they will have a better, first hand idea of why is happening.

We cannot wait to be post-Glenn. Life will be "easy." We will be allowed to go places and show off our baby boy! We won't need to see the cardiologist every week! We will have officially avoided the dreaded interstage mortality statistics! Oh yes, this post- Glenn world is going to be one to be appreciated.

He is on 3/4 liter of oxygen, and Sats are okay. He still has occasional dips. Come on Glenn!

Big scare

Today was rough. First, they discovered Will's scalp iv was leaking. They put one in his foot and removed the other. He has a bald spot now... Guess it isn't the worst thing that could happen.

Then he had a major desat that was not quickly resolved. He ended up on 1 1/2 liters of oxygen (the most he has been on so far) and the nurse got out the cpap. He is stable again, but that was very scary.

Cincinnati here we come.

Everyone now agrees it is getting to be time to prepare for the Glenn. Will's numbers just aren't improving and his oxygen requirement is increasing. Early next week we will request medical transport to Cincinnati and continue to wait there for his surgery. We don't have a date yet but it will probably be within two to three weeks. Cincinnati prefers to wait until four to six months for the Glenn, but William has exceeded weight expectations and is outgrowing his shunt. An early Glenn is really the only choice.

We started him on a feeding pump yesterday to help with his reflux. So far, so good.

Just hanging out

Today we are just hanging out. No tests or studies scheduled. We tried upping his diuretics... Just to see if that helps. The attending doctor is going to contact William's surgeon today and work on getting a date set for the Glenn. Hopefully it will be within the next three weeks.

Wow

Thank you all for the power prayers. They really came through. It was a miscommunication. One that I had no idea about! When I told Dr. Cooper his function was 34 % he thought I was referring to an ejection fraction, which is how right ventricles are usually measured. Dr. Kavanaugh measures a fractional area change. 34% is a reasonable number for that and his ejection fraction is 48% which is also reasonable.

We still aren't out of the woods, because we need to find out why he still has this oxygen requirement... but he is not in heart failure. Now I will probably be able to sleep tonight.

Falling apart

I got a second opinion from one of our cardiologists from Cincinnati today. It was really discouraging. He is very concerned with the mysterious decrease in function and said all symptoms sound like heart failure. It is questionable whether or not the Glenn is even an option right now. I hope this is somehow a big misunderstanding.

What else?

Woke up around 600 am after a restless night. Will threw up around 200 am. This morning when I felt him he was clammy and warm. I called the nurse and they checked his temperature, which was mildly elevated, as is his heart rate. We gave him tylenol. He slept almost all day yesterday, and all night. What else does my sweet baby need to go through? I just want him to feel better. Yesterday, a volunteer musician had good timing and came in while William was awake and played him a song. He loved it. I hope she comes back.

Not much to update

We are still in the hospital and still needing oxygen. Doctors are trying to rule out every other possibility but I really feel like the glenn will be the answer.

What's happening?

They just keep having to turn up his oxygen. Something isn't right but we don't know what. I feel like he is telling us it is time for stage two. Doctors want to see how tonight goes before we make a plan. It's going to be a long night.

Poor little man

Emesis must be William's way of telling us he needs help. Once he was hooked up he was satting under 75 for about an hour then began sitting around 59-64 which just is not acceptable. They have him on oxygen now and he is barely staying above 70 and still dipping into the 60s.

Admitted... Again

Haven't heard the official measurement from his echo but dr. Kavanaugh said it actually looks good. Unfortunately, will has had two episodes of Emesis since last night so we are back in the hospital for observation. We hope to be back home tomorrow.

Echo Monday

Will is doing pretty well. He is not throwing up anymore, but still fussing during bottles. We are just offering, but not pushing them. He takes anywhere from 10-40cc now. He used to take 80.

Monday we have an echo to check his function and see if the digoxin and enalapril are helping. Please pray that they are.

Meds

Will takes a total of seven meds a day now. Two for reflux, a diuretic, one for motility, aspirin, and two heart failure meds. I hate pumping his body full of drugs every day. I hope after his glenn some of these medicines will no longer be necessary.

Home!

We are home!

Reflux

All of the doctors agree that it is reflux that was bothering him (haven't I been saying that all along?). They switched around his meds and he is doing much better. We hope to go home today.

Better

Will is having a much better day. We have gone 24 hours with no emesis. The gi consult went as I expected: again agreeing it is probably reflux. Adjusted his meds. He is on seven different medications now. Hopefully after the Glenn we can get off of some of them.

He sat in my lap and played for a while and is in a much better mood. They allowed him to get his iv removed. We hope to be home tomorrow or Wednesday.

Off 02

I guess I should let y'all know how he is doing. Still in the icu. He is off of the oxygen and they just removed his nasal cannula. He is satting Perfectly, even when he was upset. He is still throwing up, so we are basically back where we started, considering that is what they admitted us for in the first place. Hope to be moved to the floor today.

Mornings

At home, Will loves mornings when I wake him up at 7. I sing to him as I change his diaper and he smiles. We get a bottle and cuddle. Then I lay him in his bouncer and tickle him tummy and we talk until he falls asleep for his morning nap.

In the hospital, mornings start at 4am. He gets a blood draw. We are lucky if they can get it from his iv, but some days (like today) require them to stick a vein in his head. He screams. Then it's time for an X-ray. By this time he is so hungry. Usually X-rays don't bother him but at 430 am it's meal time and his tummy hurts. So he screams.

I hate missing out on our morning routine, which is so special to me.

So I just have to remember how far we have come. How lucky I am to have had 7 weeks at home with him, and many more to come. I look at him now and it feels bittersweet to think of all he has been through; the pain and fear that has saved his life.

I'm glad to be able to remind myself that his life is flooded with joy and good memories.

William Jude, you are loved more than you could ever know.

Another update

There are giving Will some extra blood. We hope this will help him get off of the oxygen. He is being such a trooper.

Cath recovery

Will had a rough night. He was not allowed to eat until 1am, and extremely tired. He kept falling asleep, then the blood pressure cuff would wake him up every half hour and he would remember he was hungry. Poor little man. He did vomit again this morning. Also, he has been having trouble keeping his Sats up. For a few hours they were running in the 60s. Now they are a little better. Let's hope they stay that way.

He looks great still and the nurses even said he looks way too healthy to be in the icu. Once he comes off his milrinone we will be moving to the floor.

Cath update

William's cath is finished. We received the best possible news: the echoes were not accurate. The doctor said, "if only all my Norwood patients looked as perfect as he does." His heart function was better and everything looked great.

Now we just have to figure out why he is throwing up.

Cath

They just took Will back for his cath. It was a million times harder to let him go this time. He was crying and they still took him from me.