Apple Juice and Graham crackers = Heaven :))))))))

YES!!!!!! Finally !!!!!! look below .. smiles , food and drinks and painting.... just like his mommy sometimes ..lol

Maybe maybe turning a little corner

He is still draining from chest tube but it has dropped some ... hate to get our hopes up. Keifer has been less grumpy the last 24 hours ... he has been singing and painting and smiling and walking. He still talks about food all day and night but ow he tells me what he is going to eat when we get home. We had a few visitors the last few days .. Cherrylynn and her family ... Keith everyday and Bre and Granny stopped by. I was out of protein and my friends in my support group for weight loss surgery brought me some when we met for early dinner today ... yes .. I got out for a few hours !!!! It was great !!! We went to the Grand Lux at the Galleria .... I guess they are owned by same company as Cheesecake Factory... almost identical .... very good! Keifer also got SIX new DVDs from his cousins ... thank you Sarah, Kevin and family. They are playing nonstop as we speak. Tomorrow we will see what Dr. has to say about drainage and how much longer on TPN. Below is a new pic of Keifer and one of me !

Glad the holiday is over...

Yesterday was no party around here. It was very difficult to hear and read about everything going on. We are extremely isolated. I appreciate everyone's messages and encouragement ... sometimes there is just not much you can do to make it better. Thank you to Lisa and her family for stopping by last night when they could have been out watching fireworks ... Lisa was able to engage Keifer in some puzzles and get his mind off of food and he walked around ICU a few times..... also I was able to step away for a minute for a quick small bite to eat. Keifer was up till about 4am .... and he is still asleep now...... I can assure you there is nothing more painful and emotionally draining to hear your child all night long calling out your name and telling you he is hungry ..... and he wants to go home ..... and he wants peanut butter and graham crackers ....... and to please go get it for him. I simply cant put into words the torture we are both going through. Please give me strength to make it through this. Dr. will reevaluate on Monday where we stand.

Me on Facebook... Keifer on You Tube

Pics from today

Latest pic of Keifer

Keifer is settled in his heart ICU room.... he is still sedated..... they had to do extra sedation because they had to do the picc line over again because xray showed it was looped inside him. Nothing else to say but wait for him to wake up. Here are some new pics meanwhile....

It's a Yes ......

We are headed to ICU soon .. been waiting all morning .... the pic team is standing by. The pic line will go in his arm rather than shoulder and he will be out during the procedure. Seven days in ICU and then several more days back on floor to re introduce food and see if fluid comes back again before we can go home... I known others who have to do this and after that first initial reality check of no food .. they start to adjust and accept it. But .... imagine the heartbreak as he sits here waiting and he is begging me for food as I write this ..... sandwiches .. peanut butter and jelly. :((((

Tomorrow morning is decision time.....

Sorry .. I didnt realize I forgot to update .. lol. We left ICU yesterday and was taken to step down unit ... rooms were all full so we got a small room they knicknamed the closet ..... no joke ...
I had no bed ... just a chair that kinda reclines .. only if you apply pressure nonstop to back of it ...my body is in so much pain. Keifer last night ate a bunch of grapes and graham crackers with peanut butter. During the night his oxygen dipped in the 60s and they had to put him back on oxygen thru his nose. They also noticed his tube was full of liquid not draining.... he has a morning xray bedside as well... shows his right side again was full of fluid again .. it came back. This makes his lungs not able to expand enough and get oxygen .. so thats why it went down. They readjusted his tube and kept him on oxygen for a while .... another 400ml drained out .. we are over 1400ml now ...after that he slept half the day .. was told because he didnt get good sleep overnight with all that liquid sitting there .... I layed my head at foot of his bed and slept some too.  He didnt want to eat or drink till late this afternoon..... that also is a struggle because they put him on a low fat diet and I have to call room service and use a special menu and they count the fat grams when I order.... well ... he didnt eat his breakfast he was sleeping ... and the lady taking lunch order told me I had reached my limit and wouldnt be able to order more ... like dinner ... they dont count that he doesnt eat it ... I spoke to nurse and told them to fix it .. or I will go buy my own food for him ... he needs to have access to food and drink at all times so when he does finally eat .. it is here. (DUH) Oh thats handled. Now the big thing .................. Dr.came in to see me ..... lol .... I could see on her face she didnt have the best news to tell me...... so ... the plan is this .. he is still draining too much fluid ... they added some meds today to help dry him out and IV fluid to replace some so he doesnt get too dry...in the morning they will do the next chest xray and check the fluid amount of drainage ..... and if it is still too much ... they will send us back to ICU and he will go on TPN ..total parenteral nutrition .. basically everything you need from a tube.... he would get a pic line put in his shoulder .. again .. and he would be NPO.. meaning nothing by mouth ... for ... get this ...........SEVEN days !!!!!!!!!!!!! and then he would still be here for several days after that to be watched after he begins to have food again and see if liquid comes back ...... we could be here for two weeks !!! Damn !!! The Dr. is pretty certain this is going to happen and already has the pic team in place and scheduled and everything lined up .... we got to move to a bigger room down the hall so I have a bed now ....we made him walk to new room ....its actually bittersweet to watch him .... he is struggling to walk and in some pain and makes these noises like a baby lamb or something... but its also comical at the same time .. he is just a diaper and his Thomas socks and tubes and IVs and stuff coming out of him .... and as we get him settled into the bed .. I help arrange all his medical equipment and I see the long chest tube ... filled .. entirely with fluid ..... and as I look at it now .. it is filled again...... we shall see what the morning brings ............ until then ...... good night

used to be my Ipad

my bed last night

Reality Check

We have been really lucky over the past few years compared to others..... not a lot of issues with his heart and cardio check ups every 3 to 6 months. I read about lots of others who require more care..... and ours is about to increase. This fluid build up is no joke ..... they take it very seriously .. in patients like him with the fontan surgery fluid is crucial ..... too much can cause problems and he needs to stay hydrated at all times. He will need to be closely monitored for I dont know how long ..... we are talking weekly visits with his cardio Dr. here at Medical City .......chest xrays , etc .... wow. He also will need to be on a low fat diet for at least 6 weeks. The fluid is serous which has fat in it .... his body is having a problem processing fat .. can happen when his body is disturbed by all these surgeries .. his lymph nodes are effected and secrete this liquid. Here is one article that sheds a little light on it http://www.buzzle.com/articles/draining-fluid-from-lungs.html . We had a new GI dr come by that I have heard good things about ... he was very nice Dr. An and  I will be switching Keifer to him. He thinks it is wise to do a scope .. upper GI on him again because last one was Jan 2012 .. so not right now this stay but a future time this year at Medical City. We may do a swallow study as well and ENT consult soon. I just keep telling everyone thank you. Since I'm in ICU i cant talk on my phone so sorry Im not very accessible that way right now .. text is always best for me anyways. But that is also why I have this blog so you can come here for updates.... (Hi Mom) ... so please everyone understand ... I also dont feel like talking alot .. Im still trying to absorb all of this stuff. So we will be spending the 4th of July in hospital .... Dr. Kao said we will be here 5 to 6 days...... this is my second time to spend July 4th in hospital last time was with Breanna in 2011. Our support group Amazing Little Hearts will be serving a meal that I plan to go to. We usually are in St.Louis for this holiday but will be there next year for sure. We are ok ...... he is stable .... they want to keep him in ICU a little more .. but may go to the floor later tonight or tomorrow. No new pics right now ..... A lady came by with music and a guitar.... he was very annoyed but he didnt want her to leave or stop singing either ... he put his hand over his mouth so we couldnt see his facial expressions.... and she had a student following her that did hand motions and he would yell at her because he wanted her to stop ... LOL .....now that I will admit is his mother in him.........