Tuesday, May 26, 2009

Eat your heart out

Gracie just started trying to laugh and I think that it is the sweetest thing ever, after all she has been through she still wants to laugh and smile. Sorry for having to witness me making a fool out of myself.


video

Sunday, May 24, 2009

We're home

We left the hospital at 11:45 this morning and Gracie is doing well---other than not wanting to go to bed. Grace really is doing well other than being cranky at times, I think she still feels a little cruddy. I'm just hoping that she continues improving and that soon she will be back into her routine.

Saturday, May 23, 2009

We're outta here




So the orders have been written and we are transferring from the PICU to the floor as soon as we get a bed. I tried to work some magic and get them to just send us home, but no go, I don't have as good as a connection with the medical team as I do with the critical care team.

Overall it has been a good stay, Gracie has done great. The first two days we were here all she wanted to do was to sleep in my arms. Yesterday they started weaning her high flow and she came down great at 12pm they finally put her on normal oxygen and within an hour she needed to be weaned from 2 liters all the way down to .3 liters!!! She really is ready to be done with being sick, but they want her to go to the floor for at least another day of observation---we all know how I hate the floor.

I'm just so happy that this stay is proving to be quick and relatively painless. I will say this though I hope we never have to be admitted to the PICU again to the medical team---I really don't care too much for them. The Attendings don't introduce themselves to the parents and really don't involve the parents in their child's care. Who knows maybe I was just spoiled by the critical care team....it really does stink that I have so many opinions about PICU stays and staff.

Here's hoping to being home tomorrow!!!

Thursday, May 21, 2009

Guess where we are now?

If you haven't read the first blog of the night, Gracie is in the hospital she was on the floor for 6 hours before she needed to be moved down to the PICU for higher oxygen needs. So she is now on high flow of 8 with and FIO2 of 90, Gracie is still only sating in the low 70s. There is talk of possible CPAP, but I did warn them of what may happen, so as of right now they are holding put.

I knew the nurse that got Gracie so since I haven't slept really well in days, I got a room over at the Guest house and hope Grace stays stable and we both can rest. So I will post more tomorrow, just wanted to give a quick update.

Wednesday, May 20, 2009

Gracie is in the hospital

After four trips in a week to Primary's Grace has been admitted. Three weeks ago, Grace had a double ear infection and was miserable, but once on antibiotics she quickly returned to her happy self. We started weaning her diuretics and she did fairly well, with her past we knew to go slow. So we went from three times a day, to twice a day for a week and then the following week we went down to just once a day. After being on just once a day diuretics for a couple of days, Gracie started needing more oxygen---Mother's day night she went from 1/4 of a liter to 1 1/2 liters. I was able to wean her down to 1 liter and that is where she stayed till Wednesday night.

Once she was put to bed, her sats dropped down to the sixties and even after increasing her oxygen back to 1 1/2 liters she still only was sating in the low 70s. I felt I needed to take her in, so 10:30pm we take her in, only to have them titrate her oxygen down to 1/2 liter and send us home. I felt stupid! I got her home and again she sated low, so I thought our pulse oximeter was broken and had them bring us a new one. Gracie sated in the mid 80s when we first hooked her up but that night again she was sating in the 60s and I couldn't get her sats up, no matter what I put her oxygen on. As I sat on her floor, in desperation I felt impressed to hook her up to her portable tank and see what happened, she sated just fine on 3/4 liters of oxygen. Turns out her concentrator was acting up.

After all that was taken care of, Gracie did great until Friday night/early Saturday morning, having a fever of 104---by this time I didn't know what to think, we had increased her diuretics back to twice a day---so into Urgent care we went. They couldn't find anything wrong with her but wanted to give her a shot of Rosefin (an antibiotic) I didn't feel comfortable with this and after calling the cardiologist on call he didn't either. We decided to watch her since she hadn't had any more fevers and if she had any more I would take her up to Primary's for a total work up, then Cardiology would follow up with us on Monday since she had an appointment.

Well no fevers for two days, in cardiology on Monday it seemed as if Gracie had developed a plural effusion so we started over with her diuretics at three times a day, since she was still on 3/4 liter. Over night Gracie got worse, had high fevers and needed 1 1/2 liters of oxygen again. After getting the run around with cardiology and not being able to talk to anyone, I brought her up to the ER yesterday afternoon. Lungs were worse, we were sent home and told to watch her again. Today I had to up her to 2 liters and was really getting frustrated. I called cardiology and demanded to talk to the nurse, since I knew I wouldn't be able to talk to her cardiologist directly (which is stupid). I couldn't talk to the nurse but was told she would get a page with and urgent message and she should call back soon. An hour later and increasing to 3 liters of oxygen she calls back, I tell her what had been happening and told her that I needed to talk to Dr. Jou immediately or else I was just going to go to the ER again--he called me back in 10 minutes and decided that we needed to admit her and watch her for a couple of days, but first we would do another echo and see if the heart was causing us problems. Though they suspect more collateral's that will need to be coiled again soon, the heart looked fine. If after this illness passes and Grace still needs more oxygen we will be going to Cath lab for the 5th time.

So the conclusion was that Gracie probably had pneumonia, but when we admitted her to the floor, they said they were going to test for RSV and I mentioned they had done all that in the ER the day before and the results...CROUP!!! So we will stay for a couple of days and get Gracie over this, watching her oxygen needs closely and hoping we won't get worse and need to go to the PICU because we all know once she is there she doesn't ever want to leave. Gracie is currently on 2 1/2 liters and we'll just watch her and hope that she has reached the peak of the virus and will get better and hopefully come home in a two to three days.

This has been such a new experience, we have never been hospitalized without having a surgery first, I kind of have to reassert myself and let the staff know I do know what I am talking about. But hopefully it will go well and we won't be here long enough to hate it.

Just watch out all you heart moms, the nurses her have said that they have seen lots of Croup around the last few weeks, more than normal.

Thursday, May 7, 2009

Look Who's 10 months old!!!








(These are some of my favorites from the last few days.)

Today Gracie turned 10 months old today and I couldn't be happier that she is where she is today...it has been a long 10 months, but completely worth it!
Gracie is doing so well, apart from her double ear infection she is battling. She is now drinking half of her bottles every three hours, eating her toes, and even rolled over from her back to her belly today all by herself. We have started her on solids again, but she is hating every bite and gags on it...I'm not forcing her, but wish she would be able to eat, she does so well with her formula. I give her some grown-up food to taste, she really loves to suck on fresh pineapple. Perhaps Gracie's biggest accomplishment is that she is only on 1/4 of a liter of oxygen, other than before her first open heart surgery Gracie has never been on that little of oxygen.
We have heard her giggle and it is the most precious sound I have ever heard. Gracie still isn't cooing and it worries me, but hopefully she will start soon. I have been assured that her vocal cords should be fine, maybe just strained and still recovering from being intubated so many times and for so long.
Gracie had her first family outing today, for dinner we had a little picnic at the park and for her first time outside she did well. She really loved to watch the leaves on the trees blow in the wind.

Here are a list of her favorite things:
Mickey Mouse Club house on Disney
Handy Manny
Big Sister Morgan
Daddy
Mommy
Her feet
Her Swing
The song 'Itsy bitsy spider'
Kicking her feet
Car rides
Any thing that can go in her mouth, especially blankets and her fingers