Great night

Ava did wonderful over night. She slept most of the night. Her pain has been managed well. She only whines when her central line is being messed with or when Michele gives her suppository Tylenol.

She has an epideral with Hydromorphone   &  Bupivacaine .01% at a rate of 4 an hour. She is also getting Tylenol every 4 hours. She does wake and watch her movies but then drifts back to sleep shortly after.

Her heart rate has been finally coming down. She was between 140-190 beats after surgery and most of the night. I was glad to see by the time I went to sleep she was finally in the high 130’s. That means she is resting much better.

I stayed up until midnight letting Brian take a nap……then I had to tell him it was his shift as my eyes could NOT stay open! I woke a few times asking how she was and all was well so back to sleep I went.

Her tummy last night.

They did give her another central line- a Hickman line to be exact. AND it is in the same spot. I thought the same spot couldn’t be used but they assured me there was no scar tissue and they gained access quickly…..She has been feeling on it. She also has an NG tube in her nose that runs to her stomach, draining the extra fluid. They did hook her g tube to drain so my hope is to get the NG tube out today. She doesn’t need it. The liquid went from green (meaning intestinal bile) to yellow. (stomach bile)

She is already asking for a drink. I did sneak her two small ice chips, as I knew her little mouth was so dry. She crunched on them happily!

Her tummy looks great…for all it has been through. Dr. S just went through the same scar site. Her distention is gone but I can tell she is a tad bit swollen but that will go down in a few days.

I asked her nurse Michele (whom we love) this morning if we could take out the IV in her hand. Her little hand was swollen. It looks much better gone.

This picture was taken about a half an hour ago. She is a little puffy in the face but over all we are thrilled with how well she is doing. She hates to cough but I can’t blame her there.

We are hoping for a very restful, non eventful day. REST, REST and MORE REST! Thank goodness for blankies and sassies!

~Terri

Out of surgery

Is this picture priceless.

Ava is flying and recovering SUPER. I was a little taken back by her looks as I am a little weak still from my own surgery and with no sleep. I had to step back in the hall for a few minutes and gather myself. She did so well they took her off the ventilator. PRAISE GOD! She has an epideral for pain and she is also doing Tylenol. Besides that it is ALL her. I feel so much relief although we are not out of the woods quite yet.

This was taken in the recovery room. She was trying to sit up.

 

 

I couldn’t resist hand and feet shots.

The PICU was pretty busy so we had to wait about an hour before they took her up. It was nice to see so many familiar faces. She immediately settled down and is now sleeping comfortably. I am just so happy.

Doctor Shilyansky said there was three narrow spots. There were three narrow spots. Two were very inflamed and he had to cuff them in order to make them smaller , so they could function well. One section was (inch) taken out due to a small, narrow area.

So the hope is for her to rest and recover with the epideral and get to the regular floor and then to go home. Please pray things progress as they are!

The epideral is bleeding a little so we are keeping a close eye on that. So far we are avoiding Narcotics. She is severely allergic to Fentonyl, Didaudid, and Morphine. So not much more choices. Perhaps Demerol if she absolutely needs it.

She did communicate with me and tell me she wanted her sassy. So that makes my heart soar! God is good!

Here is Ava in the PICU.

Thanks for all the prayers……she NEEDS them badly right now.

~Terri

She is in surgery.

Ava did not want to be put to sleep. I went into the OR with her and was trying to calm her by singing her songs and talking about “Little People”, “Barney” and “Imagination Movers”. 

The “go lytely” didn’t work last night but this morning it ALL came out in the potty chair. I was so glad to see that….;) She didn’t sleep well at all and the IV got kinked go they had to re-tape it, which was NO fun. Daddy got sleep but Mommy no. I kept checking her diaper.

This was her this morning…….bright and early she wanted right out of the bed onto the couch. She was joking with her Daddy.

Ava picks out a movie from her HUGE selection.

This was right before we took her to the OR. She looks so tiny.

Please pray for OUR Ava. She is our life.

~The Helmick’s

Getting started.

Just so you know I will be updating on Twitter. These are quick updates that are added to the blog at the time I write them. So if you want the latest information you can look at the right side of her blog. (http://avaslifewithcdh.blogspot.com) OR you can follow us on Twitter. I will be using this a lot tomorrow.

We got here (Iowa University) at about 2 pm. I already had to put my foot down about a “single” room. There is no way I will stay in a double. I am crazy enough about germs. I would go home before getting her sick. I know some people think I am overly protective…well I AM! AND I will not apologize for it.

The day started with a bath and Ava is feeling especially good today. As you can see her tummy went down nicely. It is hard to see a “sick” little girl when she is doing so well and is smiling and playing happily.

The girls said their goodbyes and kissed her before going to school. I did not let it all get to me I was going to be strong and I know that Ava will be fine. It will be very soon and she will be back home playing with her sisters.

They sure love her! AND it shows.

So they started the WONDERFUL “go lightly” about an hour ago. Good news is it goes directly to her stomach because she has a g tube. THANK YOU, LORD. I have heard this stuff is horrid tasting. Now with Miss Ava she can’t tolerate high volume so about 6o ml’s an hour is probably where we will stay. (Most people do 250 ml’s an hour.) MEANING we will be at this ALL night. But I am the first to tell anyone we can NOT push this child.

They started an IV and she cried. I don’t blame her. Mine hurt too at the dentist. It is bad when it hits the vein….

We were trying to get her to go to sleep but I don’t see that happening. We are watching Imagination Movers right now. BUT we came with about 40 dvd’s so something different should be on.

I had to show you the picture of Ava on the pot. OH and we brought her princess potty from home!! The smile is STILL there!

We are in room 66 on third floor. Her surgery is scheduled for 7:15 am tomorrow morning. She is the first surgery of the day. That is great news! Following surgery she will go to the PICU. We just talked with Dr. Shilyansky and he is very optimistic that she will come out great. We are hoping the ventilator will come out after surgery but we have to wait to see how well she is breathing and her vital signs are before knowing for sure. Also she WILL have a central line placed, for safety measures. We just don’t know how she will do and it is better to be safe than sorry. I was hoping for just a PICC line but doc thinks she will have another central line.

Thanks for stopping by and I will be updating as soon as I can. I feel a strange sense of calm. As with any hospital stay Ava avoids the bed. SMART GIRL, huh?

~Terri

Ava and Me…… feeling better.

Hello to all of you out there in internet world! My surgery to remove three teeth went well……can one say that? I was in pain for a few days but feel a little more like myself today. It really takes the wind right out of your sails that is for sure! I’m on the mend!

Ava has been doing EXTREMELY well and it is SO hard for me not to think she is ALL better but I do know this is just something she does and that surgery will make her even better. I’m praying this time that the scar tissue and adhesions stay far away! She is eating up a storm and her newest pleasure is PEANUT BUTTER! She has eaten about 7 spoonfuls just today!

“See how small my belly is today?”

We will be leaving tomorrow for Iowa City in the morning. I’m not sure of the time. I am going to call up there and be certain they have a room for her. Last time we waited over 2 hours….yea not fun! She will be getting a colon cleanse for her surgery on Friday. We decided it was best if we just stay overnight. Then she will be all ready for surgery.

A few days ago I noticed she was getting a bad yeast infection. I called her doc and they prescribed Fluconazole. Wow did that ever help her belly go down. I’m wondering if she didn’t have trouble with yeast for awhile. I had asked about it but was always told it wasn’t yeast. Any way she is much better. Her belly is still distended but no where near where it was about 4 days ago. In fact I can see about a fourth of an inch under her g tube. Where as on Sunday you couldn’t see the stem of it. When it gets that distended it pulls her skin, causing her a lot of pain. Josh Ava’s nurse practioner suggested we use the dressing for her wound vac. It has worked like a charm. It holds the skin so it can’t pull so tight.

She loves ice cream! I love that smile!

Thanks for stopping by…..know that we truly appreciate all your support and prayers. I know that her being so well is a sign that God is gearing her little body up for a very prosperous surgery!

~Terri