The longest day EVER

I have officially lost track of the days. So let me start at the beginning to figure it out. First thing Monday morning we have to get mr man ready to go. Not a problem he is set and can not wait. ( As you can tell he understood what was going to happen but not fully the extent of what it would be like. Before he is able to get dressed we have to wash him down with some special wipes. Will is not going to have that. He informs me that he does not need to do that because he is not stinky since he took a good shower sunday night. Now mind you that this is being said while he sniffs himself and says see not stinky! I informed him that this was not to help him not stink but to kill the germs. He reminded me ever so sweetly "mom the shower washed the germs off!" Long story short there I Won he was washed down and then we were on our way. We arrived here for surgery at Stanford's Children's hospital. We got here at about 10 am after getting stuck in some nasty traffic. Everything went very smoothly that morning until they told us that he was not going back for surgery until 1:40 in the afternoon. We were not thrilled but these things happen.

The PACU ( Pre- Anesthesia Care Unit)

We all travel into the PACU where Will gets his giggle juice. This in theory is to help him relax. As you can guess this was not the case for my darling William. Heck no that would be to simple. My son has the reverse effect and starts getting hyper and well extremely goofy. This is great fun for all involved.. no really it was. He soon there after is taken to the holding area that we can not go with him to. He said good bye and that he would see us after his surgery.. then told the nurse that he was ready to be surgeried. We take our leave of him and head to the family waiting room.

The Wait

When we arrive in the waiting room we are told that we will be taken on a tour of the CVICU and that we will meet with our social worker. But seeing as this is going to be such a long process and we were both starving( poor Will was sooo hungry as well) we said that we would go grab a bite to eat and then come back. we took the handy dandy pager and went on a short walk. Come to find out the pager is not worth its weight in plastic! It has such a limited range it does not even work on the 2nd floor! Any way they had our cell numbers so off we went. We walked over to the Stanford mall and back. Ok let me just say the only store that I could afford was Gap... and that was pushing it! Brad and I both joked about me going into Cartier or Coach to pick out my Christmas present! When we returned we took our tour and found out that at what was then almost 3 pm Will had only JUST gotten into surgery. We waited a little while to talk to our social worker and then planned to get walking again. All said and done we had only just started walking when we get a call from my MOM telling us that Will is out of surgery. They called the HOME number to let us know. I think that the Area code being different should have made them check again but what the heck! We RUN back in to talk to the doctor and miss him.

Up to CVICU ( cardiovascular Intensive care unit)

We knew coming up stairs ( to the second floor where the pager does not work) that it would be about 45 minutes from the time he was brought into the room until we could finally come and see him. Seeing as he was out cold it was not going to be an issue. We waited and waited and waited and then finally Brad went in to see why almost an hour and a half later we were still WAITING!!! They were Just coming to get us! SHUUURRREEE that is it. We are able during our wait to talk to the surgeon who was thrilled with the surgery and how well it went. He stated that Will should never need another heart surgery for repair. YIPPEEEE!

Reunited

The first night we were told that they were going to try to remove Will from the ventilator . AWESOME. Or so we thought. If you have never seen this I hope you never have to! They bring down the meds and he wakes up. Combative to say the least trying to pull every tube he can get his hands on. Chest tube included... talk about fun. I am holding him down trying to keep him from ripping everything out as he starts to fight his vent. Bloody foamy phlegm and water come up into his vent tube. If you can imagine the sound of someone drowning this is the sound he is making. Add to this that he is absolutely terrified and out of sorts so he is franticly looking around while gasping. Every time this happens add to that fun rushes of "blood" coming out of his chest tube along with all of the regular bells and whistles that happen in a hospital. Fun right.... well this was the first night over and over and over again. Until that is about 3 in the morning when they say Too much fluid on his lungs... maybe tomorrow. I at this point have been up for almost 24 hours... woo whoo party time!

Less than 24 hours

Well the morning is quickly arriving here. I know it is not even 10 pm but it seems so much later. We got the call this afternoon that Will has been moved up to the second surgery. This puts Will back to the slot that he was in when we left the other day. This is wonderful news for us all!

Our Physician assistant Harold called this evening with this news. Due to the situation that we are in with the 4 different schools and my mom being here and all of the planing... yadda yadda.... Well that was of enough interest to the Surgeon that he decided to move Will up. He also told us that it would take a problem with ICU or a Transplant to stop his surgery.

We are as you can imagine very nervous about this surgery. There is no good way to get ready for this. We are telling ourselves each in our own way that we are prepared but truth be told there is no way that we truly are. I have done everything that I can to wrap my head around what all I am going to see and what Will is going to got through.

Will is as ready as he can be for all of this and I am sure that he will be able to go through this with genuine Will Flair! He is a riot and I am sure that he will come up with some big comments to lighten the mood. As of right now tomorrow after the surgery I have to wake Will up by crowing like a rooster. Yes that is right cock a doodle doo!!!! Hey bonus is that I no longer need to DRESS like one!

Well off to try to get some more stuff strait for tomorrow and try to sleep.

I will try to keep this updated while at the hospital. depending on connectivity that may not be easy but we will see what I can do.

It is ok to scream... RIGHT??

I am having that day. You know the day that I am talking about.. the one where everything is just that little bit off. Then you get that one piece of information that just pushes you to the edge. Well that would be my day today.

I have been trapped in my home with my toddler for several weeks now for the most part. I get out very little just to get some sanity and then the other things that are needed for life in general. Now I am locked in the house with my Mother and a 3 year old. Did I mention how small the house is... oh yes... we are all right on top of each other all the way around. I love that my mom is here to help out with all of this and God knows that we could not be doing this with out here but... Well let me be honest we all have nothing to do right now but wait. And well that is not something that either of us do well.

Now with that said let me tell you about my evening... I went to pick up Eric from football practice. Something that I was looking forward to ... it means going out of the house and normally 10 minutes of peace to my self. Well this time Mom needed to go with me. Not a big deal but this effectively took away my little piece of downtime. While on my excursion to the high school Bradley is back at the house with the kids and on the phone with the hospital.

Will had started out as the first surgery on Monday morning. Then before we had even left the hospital he was the second surgery slated for 11 am. Well now as of 6 pm this evening Will is now the third surgery. This means that he will not be going in until 4 pm. and God willing no one else needs to be placed ahead of him for an emergency. If this is to happen they for some reason can not tell me when they would be able to place him back on the rotation.

I pray that they do not pull him for something. Mom being here and all of us being forced to be trapped in the house and scrubbing everything to keep Will from getting sick is not an easy way to live. Let alone the fact that all of us have to stay healthy. If anyone is sick Will can not get the surgery for 3 more weeks. With 4 people in 4 different schools it makes it hard to keep everyone healthy. Brad and I have both taken time off from school as well as other responsibilities for the time that is needed for Will. We have no problem doing it but may have issues if we have to do it again in a few weeks. School for Brad being the most difficult. Not even touching on mom having to be be here until this is figured out. I know that she does not mind but we all know how hard it is to be away from home for some time. And with the added stress of the surgery it just makes everything more intense.

Now for the plans if Will is able to remain ( as we are praying) the third surgery. With this he can not eat after midnight and can only have clear fluids for some time there after. That is going to be a ton of fun to try to explain to him when he can not eat all day! For a child that loves to eat constantly he is going to have a big issue not having anything at all. Now once we get to the hospital he will be in pre-op until 5 pm and then the operation there after. The surgery will take about 4 to 5 hours. This means that Will is going to be out of surgery at 9 pm give or take.

When Will gets out of surgery he will be on a ventilator and will have quite a few tubes for the first 24 hours or so. From there we will have 1 to 3 days in ICU and then 1-3 days in the intermediate care and then a few days if that in the regular room. All said and done they say that he could be home in anywhere from 3 to 10 days.

So Please pray that Will is kept on the Monday rotation for the surgery and that all goes well!