For all at Vr -- about Eric

[tantekay]

We're at UVA and the fontan is complete! We are just playing the waiting game and keeping him comfortable. Sorry for a short post but you can check his carepage at carepages.com - littleEszipperstory

I'll be back soon! Thanks to all you wonderful people out there!!!!!

 

[Ross]

Praying that it holds up and things work out. Thanks for the update.

 

[geebee]

You are all in my prayers. Hugs out to you.

 

[Phyllis]

Here's the care page

Here's the care page

8 June 27, 2006 at 06:11 PM EDT
What a day!

We went for our pre-op yesterday and everything was good. All the doctors we saw said that things looked good and he was ready for his Fontan. After several hours of waiting to see all the people we needed to see and getting all the appropriate paperwork signed. We were off for the night. We found out that we were second case of the day - 8:30 check-in time. So needless to say we were worried that we may have problems with little E sleeping in and not wanting something to drink. So he took a short nap, and then we went out running errands and took care of stuff and topped of the evening with some Ben & Jerry's ice cream YUM!!!!!!!!!!!

This morning we reported at 8:30 - went straight to the admission suites and by 9:30 I was carrying my little E down the halls to the OR. I was able to stay with him until he was sound asleep. We then went for breakfast and then up to the waiting room on the 7th floor - where PICU is. The waiting game began. We got a call around 11:20 saying that the surgery was started and they had gotten started around 10:50 and things were going well. Then we got another call at 1:30 saying they were 2/3 of the way through and that the next person we would see would be our surgeon. Needless to say, I was getting ants in my pants because it wasn't until about 4:30 until we got to see the surgeon. He said the short story was that he was doing fine. The long story was that they had some complications when completing the fontan that Eric didn't seem to be tolerating it very well. They took time to look around and check things out and for some reason he just started doing better on his own. He said that we may be in for a bumpy road the next few days - with possibly several ups and downs while his body adjusts to the new circulation. But the good news is that they are already able to wean the epi just a bit and things are looking well. He's still on the ventilator, but that's because they are keeping him prett sedated. Every time he seems like he's starting to wake up a bit he seems to get a bit frustrated and quite wiggly. So it's the balancing game of keeping him sedated enough to be comfortable, but that could mean being on vent longer to keep him sedated well. If they extubate they have to cut back on the sedation.

We also had a full house today!! Waiting for Eric today was Mommy, Daddy, Sissy, Oma, Opa, Tante DiDi, Nana, Lillian (Nana's long time friend) and Mr Houff, the pastor of our church braved the rain to drive up to see us today!!!! Thanks to everyone!!!!

I'll let everyone know more tomorrow. Take care and I'll also try to update the pics ASAP!!

Thanks to everyone and thanks for all the prayers. Karen

 

[Karlynn]

You all have my prayers.

 

[Andrew'sMom]

Praying for you little Eric ... you are doing a great job! Keep up the fight!

 

[Mary]

Prayers are coming your way for the very best of outcomes.
Mary

 

[francie12]

Thanks for the news. Keep up the good work. You are much in our thoughts.

 

[twinmaker]

Eric continues to be in my thoughts and prayers. Thanks for keeping us posted. LINDA

 

[Yaps]

Many prayers coming your way..

 

[EVELYN]

So glad all went well......we'll keep him in our prayers.

Evelyn

 

[JeanneImp]

Kepping Eric and you in our hearts, thoughts and prayers!

 

[Phyllis]

care page update- looking good

care page update- looking good

June 28, 2006 at 12:41 PM EDT
Well, we had a good night. He stayed intubated (sp???) overnight. The were concerned that his acid levels were still rising. But by this morning they had come back down to 1 point something, can't remember, but just glad that they were back down. They were planning to take the ET tube out, but then the chest x-ray showed a small pocket of air down the right side of the right lung. They were thinking that it's just a complication of surgery and planned on aspirating it with just needle. When they got started, they got some of the air out, did a repeat chext x-ray and then had to take some more air out. When they finished, he ended up with a little bit of bleeding and they put a small chest tube in place to drain out any excess fluid. He's resting very comfortably now and the plan is to let him rest this out and when the meds start to wear off, they may go ahead and try to remove the ET tube this afternoon. All of his blood gasses are looking good. His hematocrit is at 40!! YEAH!! GO ERIC!!!!!!!! And then ------------drumroll----------- if all is well and he has no more et tube, this afternoon he may have some apple juice!!!! He's gonna love that!

As for Eric the person, he's awake at times and very aware of what's going on. He looks at us and tries to cry -- get's to gagging on his et tube and coughs. Although all this is good for his lungs, it's hard for him to understand what's happening to him. So we do our best to "hold" him as he lies in bed and talk to him and talk him through everything. That seems to work -- as long as you talk to him things get better. Not to mention the fact that they give him phentonyl to help him rest. Once this morning, I had stepped out to the restroom and he woke up. His nurse Barb, just stroked his hair, told him to relax, mommy had just gone pottie and would be right back and he just calmed down and things were better. I've had some playhouse disney on this morning and that seems to make him feel more at home. He would focus on the TV for a minute and then drift back off to sleep. He's not very happy that we let this happen to him. But later he'll understand.

Well, I guess that's it for now. Thanks again to everyone. Take care everyone and I'll post again soon.

 

[Phyllis]

Good day for Eric

Good day for Eric

10 June 28, 2006 at 10:47 PM EDT
We've had a very eventful day. Once they got the chest tube in place and he settled down, they were able to pull the ET tube. He's breathing well on his own and they just have him on a nasal canula with a little O2 -- right now he's at 2.5 liters and they are weaning the concentration of o2 - I think its around 80% and going down. He's holding O2 sats of 92 while he's sleeping and quite. When he wakes up it drops some, usually around 88 -- sometimes lower when he's really really fussy! He got his catheter taken out today as well, and he's quite happy about that. He finally had a good we diaper this eveningh while I was out to dinner. (Dinner btw was compliments of my parents who drove down to see us this afternoon and got me out of the room for a few minutes and got me my dinner - Thanks Mom and Dad) We also got the arterial line out today. Not that they were planning on it, but he either got his fingers wiggled around it, or caught it on something and pulled it loose. So since his centeral line was drawing blood well, they are just using it and as of now no need for a new arterial line. YEAH! He was also eating ice chips and sipping water this afternoon, and even got to have some appie juice by syringe tonight. He was very happy with that as well. But the best news of all came for mommy. After they took his et tube out Grandpa came and found me in the waiting room and said that Eric wanted his mama. When I got in here, my husband told me that he said hi to Grandpa and then told him to go get his mama!!! Brought a smile to my face and a tear to my eye! He's finally sedated and sleeping now, so I'm off to get some rest before tomorrow. Take care everyone and thanks for all the continued prayers. We do appreciate it. Karen, Chris, Tori and Eric

 

[Ozmercy]

Praying for Eric

Praying for Eric

Praying for Eric, glad to hear things are progressing.

Randy

 

[Andrew'sMom]

recent updates on Eric ... he's doing great!

recent updates on Eric ... he's doing great!

Here are Eric's recent updates from his Carepage.This little guy is doing great!!

July 01, 2006 at 09:36 AM EDT
Just a quick update for the morning. Little E no no longer has the center chest tube. They pulled it around 9:00 this morning. I held his hand and we watched Mickey Mouse Club on Playhouse Disney while they took it out. They also took out the pacing wires as well while they were there. So at last count the only medical things he has in right are the central line, IV port on the right hand, the right side chest tube, his O2 is still running, and his heart monitors. I think that's everything. So I guess we're just going to try to take it easy for now and make sure he adjusts well to the changes. Take care and I'll be back later. Karen


13 June 30, 2006 at 10:39 PM EDT
Hi everyone! Sorry for the delay in posting, but we've had a busy day. Oma, Opa, Sissy, Tante DiDi, and cousin Catherine came up by 8:30 this morning to say Hi, then Sissy and cousin Catherine went in with the summer school and made cookies to sell later in the afternoon. (After they, along with other children (etiher brothers or sisters of patients, or the patients themselves) make cookies all morning, they go to all the floors of the hospital and sell cookies to the staff and visitors.) Nana and Auntie (Christelle) also came up to say Hi. Then Eric took about a 2 hour nap and then had his afternoon guests which consisted of all the family members that were here already. Then after another short nap, Dr. Peeler, his surgeon, came in for a visit and we got several good pics of them together. And to top it off, Dr. Peeler had us use his camera to take some pics of Him and Eric together. After that family came in to say bye - they were headed out and Ms. Jackie, Mr. Jeff, and Taylor showed up for their weekend visit. They stayed a while as Eric entertained them wtih lots of stories. Also, the preschool teacher here came in and read him a story as well. We've finally settled down for the night and Little E is resting soundly wtih good info on his monitors.

As for the medical news, the milronone is off. The only things he's taking now is Lasix, aspirin, and tylenol, all by mouth. And he's still got his antibiotic going in his central line. He still has the 2 chest tubes and is still on O2 by nasal canula (spelling???)

So, I guess overall things are going ok. We still wait for the dr's to come in daily and tell us that it is ok for our comfort. But he's looking good. I still haven't made it over to the Ronald McDonald House to download pics, maybe tomorrow??? Who knows.

Thanks to everyone for all your messages that have been left here on his carepage. We were reading them to him today and he would just repeat the names we called off as we read them. He seemed so happy just to hear the names of people he knows!! Thanks again. Take care everyone, and we'll post again tomorow.

 

[Mary]

I'm so glad to hear this positive update!
Thanks for letting us know.
Mary

 

[Superbob]

I'm so glad everything is going well for the little guy. Will keep saying the prayers for continued good progress.

 

[Nan]

What good news that Eric is doing so well. Thanks to those who have been posting his care page!

 

[Nancy]

This is such uplifting news. Congratulations to you and your little guy. He's been through so much and is doing so well.