Cardio visit

Today we saw Dr.Kao at Medical City for follow up. Keifer screamed bloody murder every time someone came near him.... he would not cooperate for the oxygen sats or blood pressure or EKG. Dr. Kao did listen to him and said she didnt hear a lot of fluid and lowered his dosage of meds per day. We go back again in two weeks. I have returned to work and we are right back to our crazy chaotic schedule we had before. We got some very lovely handmade cards and gifts in the mail from Brett and Mindy West's children ... thank you !!! The did a beautiful job on their cards to Keifer and included some of their toys to him. New pic below.....

First day home .... next round of Dr. and hospital visits for Keifer's sister

Now It's Bre's turn ..... luckily not any overnight stays ... but for those who dont know ... my oldest Breanna has inflammatory bowel disease .. its an auto immune disorder .... she has to take IV infused Remicade every 7 weeks to the tune of $27,000 a dose .. yes we have insurance .... but I still have to pay $1750 per person max deductible every year. This time its at Cooks Childrens Hospital ... We saw the GI Dr. today .. Keifer went with us ... Dr.Keng has been both of their doctor. Tomorrow is her infusion all day .... I cant be there with her as I normally do  ..... I have Keifer ... just so happens .. Bre has a new boyfriend and he and I had a conversation this week on Facebook while I was still in hospital and I discovered that he has an auto immune disease too .. he is currently in remission and he at one time was on Remicade also .... he wants to go with her .... she wants him too also .... we have been told before she can have a friend come ... so ...   I am allowing it.... it helps me out. Due to financial reasons .. I am returning to work 2 weeks early .... I was sick to my stomach over this decision..... I am devastated I wont have any down time between leaving hospital and returning to work full time... but I will do what I have to do for my family. This whole ordeal has taken more from me than I can put into words. I will return to work this Saturday. Keith will be home on weekends to be with Keifer and Mon and Tue Bre will be with Keifer. By next week he can return to daycare. He is cleared to return 4-6 weeks after surgery.Keifer follow up with cardio is on Wed.

Home

Yes  we are home ............

Hurry before they change their mind

We got the ok to go ... waiting on Keifer's dad ... he is out on a job right now ... and he drives like an old lady. But I say we need to get the hell up out of here before they change their minds......

GoFundMe

If anyone wants to make a donation I set up a site on GoFundMe at the suggestion of a friend ... to assist in being able to provide Keifer the continued care that he needs. Some of you know I don't like to solicit help .. and if you can't I do understand ... I'm just putting it out there and see what happens.... Thanks everyone ... hopefully we will know more tomorrow. link below
http://www.gofundme.com/3m8pg0

Thats it .. today is a NO. Up meds to 3x a day and try again tomorrow.

No for today....

I really knew this all along .... he has to be on oral meds at least two days before going home and he had a dose of IV meds yesterday morning. So .... we continue to wait and see what tomorrow brings.

Fingers crossed

Within the next 8 hrs we should know ... do we stay or do we go ...... meanwhile new pics below. I will share some Keifer humor while I am here ......  Mommy ? why do you have to sing ? can you please do it more quietly !   ..........  Mommy ? am I awake ?   ....... Mommy ? are you awake ? ...... I feel like I am a long way from home ....... ( I see him throwing something on the floor) Keifer what was that ?   Keifer : Not Me !!  I dont know !  ...... Bre to Keifer : Keifer what kind of soup is that you have ? Keifer : MINE ... lol ... Im going to use that one myself ....  me to Keifer : Keifer can I have a bite of your sandwich ? No .. mommy its not good for you ....

Rachel came by to see Keifer !!

Making snow angels.

Rachel and the girls.

Bday hat, apples, water,
Ipad but no sleep.

Finally 1am .. he is out and still holding the Ipad.

The never ending hospital stay continues......

X-ray today shows more fluid than yesterday ..... Dr.Kort says we will continue IV meds and add more today. I told him we want to go home... but he said it is a matter of finding the right combination and amount of meds to keep this fluid from getting bigger. Now we are talking earliest would be Monday. I asked nurse for a bigger room ... of course they all taken right now... try again tomorrow. Usually they move people to larger rooms when they think they may be here a while and save these small rooms for shorter stays. I would have said something a long time ago if I would have known that we would have been here this long. It also finally dawned on me that I have our stroller with me ... duh ... I put Keifer in it and walked ... much faster than pulling that dang red plastic wagon... we even went outside got some sun. Below are some new pics ... the first ones are the first day of eating again from a few days ago.... the rest is our current small home ... that little couch is my bed next to his.

His dad would be so proud .. he knew exactly what color to use !!

We have collected every Thomas book in hospital except the ones we left in ICU.
I told him I was going to go hide these and we go find them again.

Our room .... and my bed... good thing I'm short.

Watched them all a dozen times.

I'm going to start putting these on every door and window.

No chest tube today

Xray was better today so no chest tube for today ... but .... this was only with the help of IV diuretics. They now have to change him to oral meds  ... what he would be on at home and see if the fluid comes back .. so we bought ourselves at least two more nights here........could have been worse. Keifer has been ok .. eating and drinking the most I have seen him do in a month. Low fat diet around the other kids will be a little difficult when we get home. We go on walks and I pull him in a wagon and walk my route. It's pretty comical I am sure to watch us ...he is sitting there with usually a baggie of food and a drink and the Ipad... he waves at most people and everyone points. laughs, stare and talk to us. New goal for going home is Sunday.

Results of daily X-ray

Keifer has an xray every morning ..... today it shows fluid back again on right side. Not a lot but more than the day before..... the plan is to switch to IV diuretics to try to get rid of it ... but .... if xray tomorrow morning shows it is any bigger then ..... he will go back to ICU and we will have another chest tube put back in. I will update in the morning .... text messages or facebook is ok .. but other than that I need some quiet time... thanks for understanding.

Chest tube out

We moved out of ICU yesterday..... and of course he had to leave them in style .... his style that is. The previous three nights he had been falling asleep about 4am and sleeping till 2p .. so about 10 hrs sleep each night. then Mon night he only got 4 hours sleep .. so yesterday all day he was horrible. He bit someone on the hand when she tried to take his blood pressure. He finally wore his self out and literally fell asleep on his tray table. That was about 830p and he slept for 12 hours !! Thank God !! Because I was beyond my limit......but we survived yet another night. Day 11 today .....they took chest tube out and TPN stopped yesterday. He is on low fat diet and we are free to roam around..... but first Im going to a support meeting and then taking him for a long ride. Earliest we are looking to get out of here would be this Fri. Perfect !! because I have to be at another hospital next Friday with Bre !!! Lucky me ! Thank you for everyone who has kept in touch and sent me messages, cards, gifts, texts.....sometimes they came at a time when I really needed it.

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.........