Tuesday, May 31, 2011

Day 9 Update

THE CHEST TUBES ARE OUT!!!!  I repeat the chest tubes are out!!  This is a big step in Cain's recovery.  Especially since chest tube drainage/Pleural Effusions can sometimes be a setback in the Fontan recovery.  We learned this morning during rounds that this would happen today and around noon they came in the room to pull the 2 remaining chest tubes.  They gave Cain Morphine shortly before pulling his chest tubes to relax him and help with the pain.  I held Cain's legs and a nurse held Cain's arms while the NP removed his tubes.  Believe it or not he did better with having his chest tubes pulled than he does with his daily xrays and medicine doses.  His diuretics will slowly be weaned and we will pray that he doesn't show any fluid build up in his next xray.

Glad I was able to capture this on camera because this is a rare moment.  Cain usually never shows Callie any attention.

Brad's stepsister, Jennifer, arrived from Louisiana late last night.  We were thrilled to see her and so thankful she is here to help with Callie.  I'm just hoping Callie is good for her.

I mentioned yesterday that we were really struggling with Cain taking his medicine.  Thankfully I think we have found a way to get him to take his potassium.  We were first given his potassium in a liquid form that we could mix with his juice to drink.  He wasn't always finishing his drink and after having to give him the terrible potassium drip I was determined to get his Potassium in him without having to do the IV drip again.  They are now breaking open a capsule for us and we are putting the potassium on a french fry and dipping it in ketchup.

He is licking the ketchup and potassium right off the fry.  I has worked like a charm.  Now if I could just figure out another easy way to get him to take his medicines that are in a syringe.

We tried to let Cain walk again today but he still wasn't feeling up to it.  Plus he was still pretty wobbly from Morphine.
Everyone kept telling us that Cain would feel so much better after his chest tubes were out.  I'm not sure I believe everyone now.  I have no doubt that he is more comfortable.  But I think it made him comfortable enough to let us know how mad he is with us and how tired he is of being in the hospital.  He spent most of the day kicking the side of the crib and shaking his head back and forth.  I guess if he's throwing a true 2 year old temper tantrum then he must feel a little better.

As soon as someone walks in our room in scrubs or just looks at Cain he starts throwing a fit.  Getting his Blood Pressure taken doesn't hurt at all but yesterday when he was having his BP he kept making this face.....

Of course, I had to do what any loving mom would do and that is take a picture because I thought the face he was making was hilarious.  It did not hurt at all but he certainly wanted us to think it did.

A sweet girl came in the room last night to sing a song to Cain.  They come by every Tuesday and sing to some of the patients.  

Monday, May 30, 2011

Day 8 Update

The biggest event from our day is that my sweet baby girl turned 6 months old today.  I can't believe she is growing up so fast.  This half of a year has flown by.  I plan to do a post just for her very soon.

The other big event was that my parents had to head back to Louisiana today.  I was really sad to see them leave.  We are so thankful to have family who can drop everything and come help us when we need them.

I know my parents had a blast spending time with Callie but I'm also pretty sure she wore them out.  She can be handful.  Brad's stepsister is driving 11 hours from Louisiana today to come help us with her now that my parents are gone.  I seriously don't know how we would manage this without our families' support.

The worst part about our hospital stay is getting Cain to take his medicine.  Cain has taken daily medicine since birth and has always been a champ about it.     Now he's a mad man when he see me with a syringe of medicine.  It gets worse each day we are here.  He clenches his teeth, shakes his head back and forth, and is now starting to kick and hit me.  It's hard to know what to let him get away with.  I don't want him to think it's okay to hit and kick me but I also can't blame him for being sick of medicine and sick of people constantly messing with him.  This is just a handful of the syringes of medicine he has received this week.

He gets 8 regular medicines a day.  His chest tubes were still draining a lot on Sunday (60cc's) so they decided to increase his diuretics so he gets them more frequently and at higher does to hopefully dry him out.  He gets 3 diuretics; Lasix (4 x's a day), hydrochlorothiazide (3 x's a day), and Aldactone (2 x's a day).  He is also getting Tylenol as needed for pain, Oxycodone as needed for pain, Zofran for nausea, a baby aspirin once a day, and crushed up Potassium.  So that's 10+ syringes of meds he receives every day.  We have tried everything to get him to take them even mixing them with chocolate syrup.  I honestly don't think it's the taste of the medicine as much as he's just sick and tired of taking so much.  I hope he goes back to his normal ways once we are home and doesn't continue to fight me with meds.

His left chest tube drained 60cc's and his right chest tubes drained 16cc's on Sunday's day shift and on Monday's day shift they only drained 10cc's and 4cc's.  So, we are really hoping the chest tubes will be pulled on Tuesday.

From a cardiac standpoint his heart looks great.  Overall the heart function is great, the rhythm is good and his saturation's are around 89-90.  The only thing that is keeping him in the hospital is his chest tubes but that has started to dry up significantly so if we have no major changes I would think we will be home towards the middle or the end of the week.

Day 7 Update

Sunday certainly didn't start off as well as Saturday.  Cain has lab's drawn every morning around 5AM and Sunday's labs showed that Cain's potassium was really low.  Low levels of potassium can be dangerous, especially to the heart so Cain had to be started on a potassium drip.  The drip was administered through an IV on his foot and sadly it burns really bad.  He was on a slow run drip so it wouldn't burn quite as bad but that also meant the drip ran for 2 1/2 hours.  Cain moaned and winced the entire time which was really sad to see.

We also learned during rounds yesterday that Cain had a lot of fluid build up in his chest.  Which means he has fluid around his lungs so his chest tubes are still draining a lot.  This draining is just part of the healing process of the Fontan's.  Cain's chest tube output still seems to be moderate and improving but still draining too much to pull the chest tubes.  Cain is also having a lot of drainage at one of his chest tube sites so the bandaging has needed to be changed often.  He really doesn't like this considering it involves having to pull tape off his skin and use an alcohol swab around the site to clean it so it really burns.  

We were sad to see Cain feeling bad again after having such a great day the day before but I guess that is just part of the healing process.  We've certainly learned from previous hospital stays that it is a roller coaster ride and this stay has been no different. 

Thankfully Cain had two heart friends stop by to visit him on Sunday.  We tried all morning to get a smile out of Cain and all we could get was this face....

As soon as Colby stopped by for a visit, Cain finally sat up in bed and started smiling a little.  

We tried all morning to help him feel better.  It's amazing what someone his age who has been through the exact same experience can do to raise someone's spirit.  

Amazing to think Colby had the exact same surgery as Cain just 8 weeks ago.  

Colby certainly didn't cut Cain any slack for being in the hospital.  He decided stickers would make a great hat for Cain. 

It was great to be able to visit with Becca, Jason, Brody and Colby.   I'm thankful they could pull a smile out of Cain for us.  

Later that afternoon Cain's other heart buddy, Jace, stopped by for a visit.  We met Jace and his family in the hospital after Cain was born.  They are a day apart and Jace was also a single ventricle kid like Cain (HLHS).  They drove 2 hours one way from Kentucky just to visit us in the hospital.  I can't begin to say how much that means to us.

I think Jace may have been flirting with Callie just a little.  I told Tricia, Jace's mom, that Callie would certainly make a good wife one day to either Jace or Colby considering she would understand everything about Hypoplastic kids and their hearts.

I am so thankful for both Becca (Colby's mom) and Tricia (Jace's mom).   Our kids are all at the same stage and having their Fontan's right now.  We "get" each other and it's great to know I have both of
them to turn to.

Sunday, May 29, 2011

Day 6 Update

1st smile we've seen since surgery!!!

Well it is only 10:00AM on Post op day 6, but our day has already been SO much better.  Cain had three bowel movements (yes, I understand that may be more information than Cain would like for me to share but they are a big deal around here) through the night and he does not seem to be in as much pain from his chest tubes and shoulder/back area that bothered him so much the last few days.  He managed to eat three mini-pancakes and drink a little milk without vomiting.  

He has been spitting out some of his “Cain Japanese babble” to us, acting goofy with his Bob the Builder hat on, and yes…..has even smiled a few times.  

We were so excited to see smiles we did anything and everything to keep them coming.  Even if it took his Daddy pretending to be Elmo.

He did have another IV line go bad so he will have another line put in today, which is never fun.  I actually woke up this morning at 5:30AM to Cain screaming as the nurse was trying to find a vein.  She poked him once and it didn't work so she decided to let IV therapy come in later this morning and do it.  It appears it will be another day before they try and remove his other two chest tubes, but it is clearly going to be a better day just by the way Cain is acting today.  

I started this post yesterday (Saturday) and just now getting to finish it up today (Sunday)

The rest of our day was just as great as the morning.  Cain seemed to feel well all day and we saw many smiles throughout the day.  It was so good to feel like I finally had my boy back.  I had missed that sweet smile SO MUCH!  IV Therapy came in and they were able to get a line in on their first try.  I just pray that line continues to work so we can avoid more pokes.  I have not enjoyed that part at all.  

We also had our favorite nurse yesterday so that always makes it a good day.  Since Cain was feeling a little better she suggested we take Cain on a wagon ride.  

We couldn't stay gone long but we were able to stroll him around for about 30 minutes.  There is an outdoor area on our floor so we took him outside for some fresh air.  I think it did us all some good.  

Cain has been on a liquid diet until today.  We finally gave food a try again and by the end of the day he had taken bites of pancakes, a banana, pizza, grilled cheese sandwich, mac & cheese, chicken nuggets, and of course  ketchup...his favorite.  I couldn't believe he tried so much but who can blame him after not eating solid food in almost a week.  

Thank you so much for all your prayers.  I know many of you will enjoy seeing this smile as much as we did.

Also notice that he is not on oxygen anymore.  Completely just room air now and haven't used oxygen in over 24 hours!  

Saturday, May 28, 2011

Day 5 Update

Yesterday was another trying day for our little man.   Cain continued to battle with pain and it had gotten to a point that the tinest movement would get him uncontrollably agitated.   He would begin to cry when a nurse even entered the room.

As for progress, Cain had a post-op ECHO which will more than likely have to be repeated due to his consistent movement and fits of rage during the procedure.   He is so over anyone touching him.  I feel that he is very tolerant considering what all he's been through but I think he has a threshold that has been met.

Afterwards, he had his pacer wires removed followed by one of his chest tube (mediastinal).  This should provide a little more comfort to him; however, the process of getting them out was quite the battle.

He continues to have difficulty keeping meds and fluids down and experienced three bouts of vomiting during the day.  We tried to give him a banana to test out solid foods.  He barely ate one bite of the banana and decided it wasn’t for him.   He was also given another suppository since he has not had a bowel movement since the day before surgery.   Poor guy!  Overall we are making progress and Cain is in stable condition but the stay and Cain’s recovery is taking a toll on everyone.   We continue to be positive, but it is hard to watch him in so much pain.   We hope tomorrow will lead to a brighter day, and if we are lucky we maybe we will see our first smile out of him since the surgery. 

Friday, May 27, 2011

Day 4 Update

We had two big events yesterday.  Cain moved out of the Pediatric Critical Care Unit and up to a regular room on the 6th floor and I was finally able to hold him.  Both were great events.

The day started with Cain throwing up all over the nurse.  Brad and I had gone to a sleep room to get a little rest and the nurse decided to pick Cain up and rock him.  While she was rocking him he decided to get sick all over her.  I guess that's what she gets for holding my baby before I was able to hold him.  Truthfully, I'm not upset about that at all!  I actually like that all the nurses love their patients and want to hold them and love on them if I'm not there to do it.

Cain's "Bob the Builder" hat is normally one of his favorite items.  Not too sure he liked it so much today.

Cain doesn't seem to be able to get a break with his pain.  We have really had to keep him pumped full of pain meds to be comfortable.  Of course, the pain meds can cause constipation so poor Cain is dealing with that on top of everything else he has going on.  We decided to finally give him a suppository to help with....well, you know!

Cain was sick a few more times yesterday mostly around the time he has to take his medicines.  Seeing him sick and in pain just breaks my heart.  I wish there was something...anything I could do to make it better for him.

Towards the afternoon Cain started making a terrible noise and trying to grab under his left armpit.  It was evident that there was some sort of pain coming from that area but we couldn't exactly figure out what it could be.  We finally decided to look at his xray and we wonder if it could possible be one of his chest tubes that it causing him so much discomfort.

We know chest tubes cause a great deal of discomfort but something in this area is causing him unbearable pain at times.  One of the Nurse Practitioners said the pain could possibly be from the way his arm was positioned during surgery.  I guess there is really no way of knowing.

We had been told on Wednesday that Cain could possibly move up to the 6th floor but a room never became available.  On Thursday, we were able to make the move up.  This was very exciting because moving up always means you are improving!!

Our goals by the end of the day were to do whatever we could to keep Cain comfortable, keep him full of liquids to prevent dehydration, and possibly pull a chest tube if his drainage subsides.