Intubated

Will was not settling down last night his sats dropped in the 60s he was really struggling to breathe so they decided to intubate around 430am.He has a 102 temp.He needs to be really sedated or his sats drop in the 70s.
They are doing an echo right now to see if he has an infection in his heart.The docs decided to schedule him for a cardio cath.

Fever

So William has been having his "episodes"since Sunday.Last night around 230am Will had a 104.7temp, desatting in the 70s unresponsive.He was very close to being intubated it took about 3 hours to get him stable and is now on nitric oxcide.I left the hospital around 600am(on no sleep)made the boys breakfast and took Hunter to school.
I arrived back to the hospital around 400pm today.He is just getting worse through the evening.
The plan is to start him on another hypertension med tommorow if he does not get better during the weekend then on Monday he will go in to have another cardio cath.

Still here

William was scheduled to go home tommorow.He had an episode last night and today.Low sats,heavy breathing again.They ordered an echo and it showed his pulmonary hypertension kicked in again.His pressures were at 100. before surgery it was 70.They started him back on sildenifil and hi flow oxygen.

Almost Ready

Wills INR is 1.9 it needs to be above 2 and we can go home maybe Tues:)

Playing

Will is so happy and active he is totally ready to come home

Good Day

Good day for William I cannot believe how well he is doing.Thats what he needed a new valve.He is back on oxygen just a little 1/16 but he really seems to need it.His sats drop to 85% w/out it thats low for him they want him above 90%.They are trying to get his blood level higher he is at 1.2 it needs to be above 2,so that is what the blood thinners are for(coumadin)plus antibiotics till the 25th then we should be able to go home.
I went home yesterday and cleaned all his toys and beddingI am so ready for him to come home

PICC line

On his way toOR for a PICC line so he can have antibiotics for his fever.

Looking Great

Will pacemaker is off.He looks so good .He is awake and alert back to my happy baby.I do miss holding him hopefuly soon.He is still on morhipine,precedex,and lortab.Drs cant believe how well he is doing.

Fever

Will has had a 102 temp all day yesterday.He has cooling pads and is sooking wet:(

Other than the fever he is doing well.Pacer is off and is beating on his own,chest tubes out scars look great.Stii sedated and on morphine but if you sing to him he will open his eyes:)The Docs are saying how well he is tolerating,(my little fighter)

Extubated

YEA!!!!!!

Post-op

William is doing amazing.He is off the ventilator and doing good.He still has the pacemaker on if turn it off his heart rate drops.

They started his blood thinners today its a shot Im hoping he does not go home on that.

Friends and family have been coming by to see Will and very glad for that support.

Thanks to my Mom dad and sis for taking care of my boys at home.

Surgery Day

On his way to surgery

William is in surgery since 730am I cant type Im shaking

1ST BIRTHDAY

Happy Birthday William

Rough Night

William was getting worse all day,low sats,high heart rate.He was having diffuculty breathing.The docs almost put him on the ventilator.He was put on precedex a sedative like to help him calm down.

Heart Cath

Will is scheduled for Fri to have a heart cath done.He is very sick right now.All he does is sleep and cry he is worn out from breathing.I am a wreck right now. I am scared to hear the results tommorow. They are going in to measure the pressure in his heart.The results will then tell if he needs surgery to put in a artificial valve or if its his VSD.We will know alot more then

Back in the PCTICU

Will had been home for 5 days.He was having "episodes"low sats low heart rate since Sat. on Mon. they got worse he was unresponsive it was really scary.I paged Beth our NP immediatley said take him directly to ICU.He is on Hi flow oxygen 7liters when he is usually on 1/4liter.I talked to Beth today the plan is to do a Cardio Cath next week and go from their.