William is critical but stable.Hes on sedatives to keep him comfortable.He is going infor heart cath and lung biopsy this week to see if he has the deadly pulmonary hypertension or to see if their is anything else we can do for him.
I cant loose my baby boy

William is not good.He is in distress.He is on 10 liters of o2 hi flow and nitric,the docs dont want to put him on ventilator cause they dont think he will come off of it.
Cardioligist wanted to perform a lung biopsy to see if he has the deadly disease in his pulmanory hypertension.The pulmonoligist does not want him under sedation thinks he is very critical.William also as pnemonia and 102 fever.He needs lots of prayers.

William had been home for a month when he got admitted again.He was sick 3 weeks out of the four.He has a new pulmonoligist.the drs put him on a new med he will go in fot a heart cath next week.

William has recoverd very well from surgery,he is a little cranky but I dont blame him.His incision in his head is healing nice.

Will is off Cpap today and doing very well.He woke up and smiled

CPAP

William is on Cpap.He was having difficulty breathing his blood gas was elevated,the cpap is really helping him.The blood cultures came back positve again so he is on vanco antibiotic.
Hes on very good sedation meds to keep him comfortable the docs also said his kidney is in his pelvis whatever that means

So where do I begin.William had emergency surgery on Wednesday the 7th.His Inr was 9.1 on Monday so they did a head ultrasound and it was normal.He was v ery lathargic and mentally not himself so the docs ordered a ct scan of his whole body.On wed around noon we headed to the 2nd floor for his scan by the time we made it to his room radiology was on the phone w/ICU Doc.About 10 docs and nurses came into the room doc said he has a significant bleed in his brain I need to intubate and give meds for swelling.I was in shock luckily Molly was just arriving to visit.He went in 5 hrs later to remove the clot.
He also has the infection and respitory distress they thought he was going to reintubated last night we were up till 4am.Our dear friend Jenna Lilys mama was here till 230am keeping me company and also Santis mom Tammie.Thx guys

It has been a rough month last time I blogged Will was home,He did so well at home for 3 weeks then one night he had a 104 fever low sats high heart rate.I callded B our NP and she suggested I call 911.Will was in the PCTICU for ` 1 week then discharged April 1st.The sameday we went home he had a 103 temp up all night w/fever high heart rate lips pale blue.I waited till the am to call B we headed to the clinic where he turned purple and gasping for air He was immediatly admitted.
His cultures came back positive for infection in the blood possible endocarditis infection in the heart.Will is going in the OR tonight to get a broviac line.Tomorow the cardiologist will be in to decide what the next step is.
I decorated his room w/easter stuff and took lots if pics.

William is home:)

Extubated:)

Will was extubated this morning around 11am.He is doing very well.He needs to be on atibiotics for 4 more weeks.

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.