William is Home

Yea!!!I have no time to blog.

Gtube

Surgery for Gtube Today

I am sitting alone in Williams hospital room waiting for him to come back from surgery.I know its a simple procedure but I am still nervous He is so fragile right now due to his pulmonary hypertension.I stayed home yesterday and got the house ready for Will to come home.His NP says maybe Mon Tues he can come home:)The kids are so excited to have their brother home

Gtube for Dec 31st

William is doing great his oxygen sats are 100%.He will get his Gtube placed so we can take the NG out of his nose:)Will is almost one and he just had a tooth come in.And he sat up alone all in one day.Happy Day!

Merry Christmas

Hope everyone had a great holiday!I went home and spent Xmas eve w/the boys we had a great time.Grandma is at home with the boys now,while I spend some time w/Will,he is doing very well.He turned around so quickly.Hes laughing,playing with all his new toys.

Respitory Distress

Yesterday Will was having trouble with his breathing his heart rate was170 which is normally 120.His color was off. The docs gave him extra oxygen more frequent breathing treatments.He became worse through the night.This morning the Pulmonoligist and cardiologist finally decided he is not stable and needs to be in the heart unit ICU.

Back in the Hospital

I am not very good at keeping up with my Blog.I have my laptop in the hospital sitting here next to Will.This is our 3rd time here since Nov 10th.He keeps having episodes where he turns gray-blue sats drop everytime he is diagnosed with respitory distress.On Thanksgiving he was put on the ventilator he had low blood pressure low sats.We stayed in PCTICU for a week 1/2 he recovered pretty quickly.I took him to his Pulmonoligist appt on Fri Dec 18th and was immediatly admitted again for respitory distress.I was just told he will spend his first Christmas in the hospital:(

Echo Appt

W e had a echo today and follow up w/Beth.Will has been sick for the last few months he has cold flu like syptoms Breathing hard low sats .I was very worried and fed up. Beth admitted him to PTICU. on 10-27.He was negative for every virus.Everyone in the unit took care of us they are awesome.He had strep throat how does a 10 mo old get strep throat 2x.\
So back to our appt today he is great His echo better than the last.I wonder how he could have gone from worse the Drs not knowing what was going on w/him needed other Drs opinion.God is watching over my Baby William.He weighs 16 lbs.He is is rolling over not crawling yet.Jack my 3 yr old was walking at 9 mo.Will is getting his G tube pretty soon cant wait Im sick of the nasal tubes .

Congested

Will has had a cough the past few days so I took him to Peds to get a flu shot but did not recieve one because he is sick.Our Doc sent us to get a chest x ray and found that he has a tiny Pneumonia.He is on antibiotics breathing treatments 3x daily.He is doing pretty well.I think we caught it on time before it got worse.Any little sniffle or cough Im off to docs to make sure hes fine.

Photo Shoot

My sweet baby William what an angel.He is doing very well at home this is the longest he has been home.I took him off the oxygen slowly i check his sats every night.Will is going to get a G tube placement so I dont have to stick those darn tubes down his nose.He pulls them out at least 2x a day.We went to our first Down Syndrome dinner meeting and met 4 other families and they were also heart babies.Lovely ,strong Mothers .What an inspiration.of .We also had our photo shoot for our St Joes calendar what an honor that was. Beth Rumack our wonderful NP did such a great job.As I was leaving all I could think of was our dear friend Ethan and his beautiful mom Heidi.