Thursday, May 30, 2013

Days 42 & 43, Post Op Fontan (May 29 & 30)

Wednesday, May 29:  An easy, laid back kind of day.  We had therapy, lots of play time, food, and no x-rays or testing to do.  The hope was that the effusion seen on the previous x-ray would dissipate as Eli was more active and that his lung function would fully return since having the diaphragm plication.  The plan was to do a chest x-ray in the morning.

Thursday, May 30:  Transport came to get us before we were even awake!  That's the first time that's happened to us this admission.  They let me go brush my teeth & put on shoes as the nurse got Eli ready to go.  It was nice to get it over with so early.  Once back in the room we ordered breakfast and ate a little.  Our nurse was in the room as we were eating and she got a phone call.  I heard her say "he's eating now."  Immediately I knew Eli needed a chest tube and they were discussing his NPO status.  I was right and we let him take a little more milk as I cleared away the food. 

His chest x-ray actually looked worse than two days ago.  Dr. Abraham wanted to proceed with another chest tube in addition to the JP drain Eli already has in place.  It was tentatively set for 2pm in the PICU.  I had four hours to distract him from food and drink.  We went to the playroom, played baseball outside on the play ground and walked many laps in the hallways.  At one point, a volunteer came and sat in the room with him so I could go eat lunch.  It's really difficult for me to get away & eat when he's NPO because I don't want to eat in front of him.  He was screaming when I left, but she said he settled down quickly and actually fell asleep.  When he woke up he was asking for "bot" and "bites" (bottle and food).  I have developed several ways to lie to my toddler when we have to withhold his food and drink.  The easiest is to tell him we're out and I have to find some.  He'll even send me out to the hallway to look for it while he waits.  When he thinks I've been gone long enough he'll start yelling and I go back.  We try another method of distraction for a while before returning to that one.  Yes, I lie to him because I've tried reasoning with him and found it doesn't work.  Who knew?

Just before we were supposed to go down to PICU for the chest tube, I posted a prayer request on Facebook letting people know what was going on.  Five minutes later our nurse came in the room and said we had a change of plans.  Throughout the morning and early afternoon, she had emptied his drainage bulb and "stripped" the tube several times.  She had removed over 100cc in the few hours she had been his nurse.  Cardiology said they wanted to see if anything was different from the chest x-ray he'd had a few hours prior, so an ultrasound of his chest was ordered.  The tech saw NO fluid.  Eli is still making and draining fluid, but the large effusion that was seen this morning had drained off!!!  ELI DID NOT GET A CHEST TUBE TODAY! :)  We came back up to the room and (after making sure he was allowed to eat) he got a bottle.  I asked what he wanted to eat and he immediately said "burger."  We ordered him a burger & he ate several grapes while we waited for it to arrive. 

The plan now is to wait and see.  There is some talk of sending him home with the JP drain.  He will definitely stay through the weekend and we'll re-evaluate on Monday.  He's been in the hospital so long and it's amazing he hasn't gotten sick from being here.  The risk of him getting sick while he's here increases the longer he's here.  Even with everything Eli's had going on, he's not sick.  He's still getting antibiotic therapy while he's here, but Dr. Belcher says he would have stopped that had we already been discharged. 

Specific prayer requests:

- for the JP drain to keep draining and no new pockets of fluid to develop
- for Eli to stay healthy and not get sick because of being in the hospital so long
- for us to be home soon! 

Thank you for the response to our prayer requests via the blog and/or Facebook.  Thank you to the visitors we've had today and yesterday (fellow heart baby Caleb's parents came Wednesday evening and today we had a long-lost family friend, a relative, and a new family friend).  They've all helped boost our spirits in their own ways.  In no way have I felt that we've been forgotten, but it was a wonderful, visual reminder that we are remembered and loved.  Thank you all for that through your visits, comments, and prayers!  Today's experience with the vanishing effusion is evidence that prayer works!!!!!

Tuesday, May 28, 2013

Day 41, Post Op Fontan (May 28)

Today's been a very up & down kind of day.  Eli woke and wanted to walk so we played in the play room.  While in there he pooped!  I took him back to the room and changed him.  His breakfast had arrived so we ate together.  I didn't push for him to eat because he hadn't been eating much due to the constipation.  He asked for and ate two bites of scrambled egg with ham bits and a slice of bacon along with drinking two ounces of juice.  That took 30 minutes.  A little later he threw up.  :(  He was resting in bed when therapy came by to see if it was a good time to try some PT.  At first I said no but Eli started being silly so we asked him if he wanted to play.  He immediately said "Shoosh" (shoes) and started to sit up.  We took that as a yes!

The therapist knew he was having belly issues and is only 4 days post op, so she was planning on just following his lead.  His lead included playing basketball, bowling, climbing some therapy stairs, pushing a shopping cart, going into the stairwell and climbing a full flight of stairs, coming down said stairs, and pushing a shopping cart (with Pablo inside) the length of the hallway.  When he stopped and wanted held, I said I couldn't push him to do more and she was shocked at how much he wanted to do.  Before we got back to our room, transport had arrived to take us to radiology for his chest x-ray.

We got back to the room and sat together on the couch.  I thought he might fall asleep in my arms, but he said he wanted to walk.  We went out to the playground for a long time and enjoyed hiding from each other.  Sara (surgical NP) found us out there and checked in on Eli's weekend.  She hadn't seen him since before the plication and probably had hopes that his drainage would be less and/or he'd be off the oxygen.

After we got him back to the room he finally took a nap.  I slipped out for an hour and came back just as he was waking.  It was 2pm by then and I hadn't ordered him a lunch tray because of how his stools and belly had been.  He ate some Goldfish crackers and jello.  The nurse came in and we gave him a bath.  At home, he loves baths.  Here, not so much.  He screamed at us the whole time but, as usual, as soon as it was over and I was dressing him on the couch as the nurse changed the sheets, he was fine.

Sara & the unit's hospitalist came in to talk while I was lotioning him and getting his clothes on.  Eli's chest x-ray actually showed more fluid in his chest.  It's above the area that his JP drain is reaching.  Because he'd been up and active prior to the chest x-ray, we can't really even entertain the thought that gravity will "pull" it down.  Dr. Abraham is aware and will let us know what he wants to do.  He was in procedures all day.  Sara said he may get with us tonight about what he wants to do or he may sleep on it and we'll know more tomorrow.  My suspicion is that they'll have to place another chest tube, but that's me guessing.

I told you the details of our day just so you understand what I meant by "an up & down kind of day."  He played a lot and did very well, but he's also still somewhat constipated, threw up because of it, and has a lot of fluid in his chest.  I'm mad, annoyed, sad, getting disheartened, etc.  I'm not any of those things at anyone, just the situation.  I feel like we're doing everything we are supposed to and his body is still not responding right.  I get that every case is different.  I know the doctors and nurses are almost as frustrated as we are.  I'm just getting tired of making lemonade with all the lemons we've had.  Thankfully, the things that are happening aren't really going wrong, they're just not going right.

We'll be okay.  I'm just having a moment!  Please pray for Eli's chest fluid to magically/by the grace of God clear up & never return!  Pray for that to lead to increased oxygen saturation levels so we can go home without oxygen!  Pray that we all stay strong for each other and get through this long trial.  Thank you.

Days 39 and 40, Post Op Fontan (May 26 and 27)

Back in early April when we were planning Eli's Fontan, I never dreamed my hospital updates would go to 40+ days.  We've been here longer than Noah was on the ark (some days it probably smells similar).  I think we try to just go day by day and that's a big reason why I haven't lost my mind (much) in here.  However, when I think about it, I can't believe we're still here.  It's frustrating at times, but we know Eli's not healthy enough to come home yet.  Even though he's not healthy enough, the things keeping him here are not super serious either.  We've said all along "he's breathing and he's beating, we can deal with the rest."  That's still true, but it's surprising to us the variety of problems we've encountered.  It's been interesting to say the least!

The night before Eli's diaphragm plication, we were in the play room.  There was a little girl playing with her mom and Eli had to check out what she was doing.  They "played" together (as well as a two year old and three year old can) and the mother and I started talking.  I found out the daughter was in the hospital overnight because she'd had a heart cath that day.  I couldn't help but get that excited feeling a heart mom gets when meeting another family who's been through it as well.  We're in no way excited that another family has watch their child go through such things, but the fact is that these families are out there and it's nice to meet up and share stories and support when we can.  I found out the little girl was going to have her Fontan in the next few weeks.  Excitedly I blurted out that Eli was in the hospital because he's had his Fontan.  Her next question was "When was it done?"  I've never in my life wanted so badly to lie to someone.  Why would I want to tell her that my son's surgery, the one she was preparing for with her young daughter, was five weeks ago, we hadn't been home yet, and he was about to make his third visit to the OR in less than twelve hours?  I truly debated telling her his Fontan was the previous Monday (as if he'd be out of PICU and playing in the play room in less than four days' time?), but I didn't.  I told her the truth.  I also told her of his complications and why he was still here.  She could see that he was doing well, but understood that he wasn't well enough to go home.  She was very gracious and even introduced me to a Facebook support page for heart parents.  I still feel bad and almost wish we hadn't met when we did.  But I am very glad we met!  Please keep her daughter "B" and their family in your prayers through June as she undergoes her Fontan. 

As far as Eli updates, there's not a lot to report yet.  His bowels are slowly starting to move along, but that's with a couple doses of Miralax and a suppository each day.  His belly is still distended but not nearly as big as it was Saturday.  His appetite is slowly improving and he's feeling better.  The JP drain is still draining fluid from his chest, but we are only on post op day 3 (for that surgery).  Yesterday it was 116cc and the previous day was 155 so we are trending in the right direction.  He hasn't had a chest x-ray since right after surgery, so I suspect they'll do one in the next day or two.  Eli still requires supplemental oxygen (1/2 liter), but again, we're only post op day 3.  Overall, he's feeling well, playing better, and starting to eat more. 

He did have a moment today to make Momma very proud.  Bryan was getting the tire on our fan fixed (it was completely flat & we found out it had a concrete nail in it....that would do it!).  While it was me & the boys in our room, one of the priests came by to check on us.  Father John has been around here since long before Eli was diagnosed, although this was the first time this admission that we've seen him (we've seen others).  He remembered Eli and exclaimed over how big he's gotten and asked questions about his health.  A Mickey Mouse cartoon was on and Eli had been sitting up in bed and Zachary was on a stool beside the bed watching it.  Father John wanted to pray, so he took Eli's hand and my hand while I held Zachary's with my other hand.  Right after he started the prayer, Eli says "Oop-day!" (whoops!).  He reached over to the DVD player and pushed pause before turning back to Father John.  Father John offered up a very nice, somewhat lengthy prayer specific to the needs of Eli and thanked Him for bringing him this far in such good health.  When the prayer was over Eli reached back over to the DVD player and pushed play.  Father stood and stared at him for a moment and then turned to me and said "That was no coincidence!  He knew what he was doing!"  Our nurse walked in right then and Father told her what Eli had done.  He stood there amazed for a few moments before saying he'd never seen a little one do that.  I think Eli remembers us pausing/muting the tv for family "night-night" prayers at home, but it makes me feel good that he hasn't forgotten.  And it's never been his job to mute the tv for prayer time so maybe it is now!  And by the way, after Father left, Eli threw three of his toys out of the bed and pulled Zachary's hair.  He's not a complete angel ;)

Bryan and Zachary had a good time at the Louisville Bats game.  They got to meet up with one of the pitchers, Chad Reineke.  He's a really nice guy Bryan has been following for a while and he's become aware of Eli's story.  He gave the guys an autographed hat to bring back to Eli and they got some pics with him at the game. 

Zachary with Chad Reineke
Zachary wanted to take a picture of Bryan with Chad Reineke.  Pretty good!
Eli with an autographed Memorial Day weekend Louisville Bats hat autographed by Chad Reineke
It was a fun weekend for us.  Eli got his Daddy & Bubba fix, I got to spend time with all my boys and some one on one time with Zachary.  Our dorm room now sports dragon pictures to go with the dinosaur pictures Zachary previously brought.  The four of us were together most the time and that's what's important.  Hopefully we'll have more (good!) news to update with this week.  Thanks for all the prayers and support!

Saturday, May 25, 2013

Days 37 & 38, Post Op Fontan (May 24 & 25)

Bryan and Zachary woke up at 3am on the 24th so they could be here in time to see Eli prior to surgery.  Well, I should say that Zachary woke up when the alarm went off at 3 and told Bryan he was supposed to get in the shower so they could leave.  The boy stayed awake the whole ride to Indy, through the surgery and getting to see Eli in the PICU, and even went to the Children's Museum with Mamaw Linda, Aunt Judy & Aunt Kendra for the afternoon.  He fell asleep on the way back to the hospital but woke in the parking lot.  He didn't go to bed until after 11:30 once he & I were settled at Aunt Ashley & Josh's house for the night.  It took 40 minutes to get him up Saturday morning (after he slept for 11+ hours!).  Poor kid!  Right now, he & Bryan are in Louisville at a baseball game.  Pics of their adventures to come in a later post!

Eli's surgery went just fine.  Dr. Abraham said he took a lot of fluid off when he got in there and then he tacked down the right side of the diaphragm.  The actual operation only took about 45-60 minutes.  Eli was in the OR for about 45 minutes before the procedure started so they could get him to sleep, intubate, scrub the surgical area, etc.  When he left the OR he was taken to the PICU for recovery.  When we talked to Dr. Abraham postoperatively, he said that he hopes this will eliminate Eli's need for supplemental oxygen and another chest tube.  Eli does have a JP drain in place to drain the fluid accumulating due to surgery.  He'll have another chest x-ray Monday morning to check for fluid. 

He spent the night in the PICU.  At first he wasn't peeing on his own.  They had to straight cath him once (straight cath = inserting a catheter into the bladder to drain the urine then withdrawing the catheter.  It doesn't stay anchored in place to continually drain).  He did start peeing on his own and has been doing well on that front.  Our issue now is that he really needs to poop.  His belly is very distended (his belly button is totally flat).  He doesn't want to eat or drink anything, not that we blame him.  He's actually vomited a small amount because his abdomen is so full.  This shouldn't be due to pain meds because he's not getting anything new to him.  Since surgery he's had 4 doses of morphine and a couple doses of Ibuprofen.  He's been given Miralax and a suppository with orders to repeat those tonight if he doesn't have a bowel movement. 

Around 5pm we were moved out of the PICU back to our dorm room on the third floor.  That's what I'm calling it now.  As we left the PICU for the fourth time this admission, I told them we wanted this to be goodBYE.  We're so grateful they're available to us, but we're tired of being there!  We were told only to come back to visit so I'm happy to say the feeling is mutual!  Several nurses & docs stopped in Eli's room yesterday because they were shocked to find out he was still in the hospital. 

Specific prayer requests:

- please pray for this diaphragm surgery to be the turnaround Eli needs to get over the final hurdles before he can be discharged.
- pray that he doesn't accumulate fluid on his lungs
- pray that he can wean completely off the oxygen
- pray for Bryan and Zachary to have a wonderful time at the baseball game and for a safe trip as they leave Louisville to come back to Indy tonight

Thank you all so much!  Hope you're having a wonderful holiday weekend despite the chillier than usual temps.  We'll make our own holiday weekend once the four (five if you count our doggie who's been boarding at my Mom's since mid-April...he may not want to come back home!) are back home together!!!!!!

Thursday, May 23, 2013

Day 36, Post Op Fontan (May 23)

Eli's chest x-ray this morning revealed a large pleural effusion.  That means there's a pocket of fluid in his lung cavity.  Dr. Abraham has decided to proceed with the "diaphragm plication" Friday morning.  He will make an incision in Eli's right side and use a few stitches to tack down the diaphragm in hopes of allowing more room in the chest cavity.  That will allow Eli's right lung to more fully expand.  That should help keep his oxygen levels up & help him get rid of any future fluid accumulation.  While he's in the OR, Dr. Abraham will drain the fluid we know is there and may opt to place a chest tube as well.

The surgery is scheduled to start between 7 and 7:30am.  Eli will be taken from his room on the Peds Unit to the pre op area around 6:30.  The procedure itself doesn't take very long, but he will likely go to the PICU afterwards for the remainder of the day and the night before returning to the general floor sometime Saturday.  The nurses on our current floor are pretty certain they can hold our room for us and we won't have to take everything out for a one night PICU stay.  That's a stress reliever for me! 

I know we just asked this Wednesday, but if you could wear your shirts Friday to show your support for Eli we would appreciate it.  Even more appreciated are the prayers and well wishes!  Please pray for Eli's safety in the OR and during recovery.  Pray that this will resolve the issue of fluid in his chest and make him stronger.  As the day goes on, it's obvious that his breathing is getting more labored.  He's fine, he's crazy and he's active so he is not in any distress, but that fluid is pushing on his lungs and needs to come out. 

Thank you so much!  Hopefully the next time we ask you to wear your shirts it will be discharge day!  I will update as possible on Friday.

Wednesday, May 22, 2013

Days 34 & 35, Post Op Fontan (May 21 & 22)

There's not much to recap for the 21st.  Eli was asleep when Dr. Abraham came to pull the chest tube so he said he'd wait.  He did say that he wanted Eli to go home on Wednesday.  Earlier in the day, Dr. Belcher had been in and said that we would NOT have to continue IV antibiotic therapy when we were home, but would for as long as Eli was in the hospital.  That news was a welcome shock to us!

Dr. Abraham also discussed something he's been watching on Eli's chest x-rays.  The right side of Eli's diaphragm is rising.  That doesn't allow for full expansion of the lung on that side and could eventually impede the growth of that lung as Eli ages.  Instead of Eli's diaphragm rising and flattening as he breathes, his diaphragm "rocks" which doesn't let the right lung work to its full capacity.  It's likely caused by a nerve being cut during surgery.  To fix it would require another surgery.  The doctor would make an incision on Eli's side and then he would "stitch" down the diaphragm.  Dr. Abraham was thinking he would be able to discharge Eli and reevaluate in two weeks at his check up.  He said that he may just admit him from the check up and do the surgery at that time with an anticipated stay of 2-3 days.

Today (the 22nd), Eli's chest tube was pulled and he later went for a chest x-ray.  Prior to the x-ray we were fairly confident we would be discharged today.  After they read the x-ray we realized we aren't coming home today.  The x-ray showed more fluid.  The fluid is either where the chest tube wasn't, or it's possible the chest tube was clogged and would have to be pulled anyway.  Either way, it doesn't matter because the result is the same:  still in the hospital.  Of course I'm anxious to get home, but it would be much harder to have to turn around and come back because Eli's in distress than to stay now and get him completely ready for discharge.

The plan now is to repeat the chest x-ray in the morning & compare it with today's.  He may need another chest tube.  I'm also wondering if Dr. Abraham may go ahead and work on Eli's diaphragm while we're here.  I can't help but wonder if the reason he keeps accumulating fluid and can't kick that last 1/4 liter of supplemental oxygen is because of this diaphragm issue.  That is me playing doctor.  We'll know more over the next 24-48 hours. 

Thank you so much to everyone who said extra prayers for us to get home today and wore their Eli's MVPs shirts.  I'm disappointed, but also relieved that they're obviously putting Eli's health first.  I almost felt bad for them having to tell me we weren't being discharged because they want it as much as we do!  Thanks again, and keep us in your prayers.  We got a nice goody box delivered today to the hospital with some chocolates in it that I will definitely be digging into tonight (probably in the bathroom so Eli doesn't see!  He's still on the low fat diet!)

More updates to come as we learn more over the next day or two!  Thanks again for all the support :)

Tuesday, May 21, 2013

Days 30 through 33, Post Op Fontan (May 17-20)

Friday, May 17, 2013:  Aunt Cara, Uncle Andrew & baby Alyssa came to visit.  Eli was pretty tired by the time they got here since he hadn't napped all day!  He wasn't super friendly, but did show them the play room and his room.  He and Alyssa had fun taking toys from each other!

Eli and Alyssa "sharing" some grapes

Saturday, May 18, 2013:  Big news of the day was the arrival of Daddy & Zachary!  They hadn't seen Eli moving around yet, so to have him greet them when they got off the elevator and escort them to his room was very exciting for them.  The boys obviously missed each other because they sat next to each other on the couch for a long time.  They kept leaning on each other and reaching out to touch the other one.  Very, very cute!  We ate lunch then went to the playground and play room.  Bryan's sister Ashley & her boyfriend came to spend the evening with Eli while Bryan and I took Zachary to the Pacer game.  We had a blast, it was game six of the second round and the Pacers wrapped it up by beating the Knicks.  After the game, Z and I went to my sister's house for the night and Bryan stayed at the hospital with Eli. 

Enjoying lunch together on the couch in Eli's room

New artwork for Eli's room, provided by the young artist known as Zachary.  Yes, it's five dinosaur drawings.  What did you expect?  :)         

The four of us on the playground
Blowing some bubbles
Daddy, Zachary, and Mommy in our Blue & Gold shirts that everyone wore for the exciting game

Zachary with a Tyler Hansbrough bobble head.  

Sunday, May 19, 2013:  Zachary and I came back to the hospital and spent some time with Bryan, Eli, and Bryan's parents.  Then the three of us went to Red Robin (had been given a gift card and we've never been was very good!)  Bryan and Zachary headed back to Washington and Eli & I settled in for the night.  He's not gone to sleep before 11pm for over a week, but tonight he was asleep about ten minutes before 11.  I'll take it!

Mommy with her boys.  This photo was take number seven or eight because Eli kept attacking his brother.

One more "see ya later" kiss from Daddy

Monday, May 20, 2013:  Eli spent a lot of time out of bed today.  As soon as he was unhooked from his morning antibiotics, he wanted to walk.  We (his student nurse for the day and me) took him to the play room, the playground, and around the unit.  Well, really he took us.  We just follow his lead.  When we got back to the room he got a bath.  He had been wearing his Zachary's Fan Club tshirt and dinosaur socks since Saturday morning (by Sunday night we were both too tired to mess with a bath and we didn't really see the point!).  After his bath, the dressing over his incision was changed.  It looks great.  They may not replace that dressing when it comes off in three more days.  After he ate lunch he wanted to walk again.  When we came back he sat on the couch for a long time.  He colored and drew pictures and got his afternoon antibiotic.  Then we went to therapy.  The therapists and I have worked out a deal.  They let me know when they're in the area and are a patient away from coming to Eli.  I get him out of the room to the playground, play room, or wherever he takes me and they will "join us" for play time.  He responds to this much better than if they come in the room and try to get him to participate.  The sense of joy I get from partially outsmarting a two year old is kind of sad.

Found a new love in therapy today...the tricycle!  He did really well and wanted to use it again in the evening, but it stays locked in the therapy room so he had to settle for a Cozy Coupe car!

After a long therapy session he wanted to keep playing but mean ole mommy made him lay in his bed.  He was asleep in a few minutes.  As soon as he woke he wanted to go out again, so I ordered his supper and we walked.  Again.  :)  He wouldn't get into bed for supper so he sat in a chair in the room and ate really well.  Then we had to walk again.  Finally he consented to get into bed and was asleep by 10:45.  That's early for him these days!

Recap:  I realize I haven't given much medical info during the daily write ups in this post.  Overall, they're pretty much the same.  His energy is increasing.  His appetite is pretty good.  He's tolerating the low fat diet.  His antibiotics were changed from Oxacillin (which was four times a day) to Ancef (three times a day) because the Oxacillin was affecting his liver.  Dr. Belcher told us from the start that this would likely happen, but he wanted to use Oxacillin as long as possible because it's the #1 drug against Eli's staph infection.  He's been on it for over three weeks so Dr. Belcher was pleased it took that long for it to adversely affect him.  He's doing well with the Ancef and his liver function numbers are steadily declining.  We'll know more later this week about how long Eli needs to have the antibiotic therapy.

Another good thing that's happening is that his chest tube output is declining.  It's counted in 24 hour time frames, from 6am to 6am.  At 6am Sunday morning his 24 hour count was 68cc (just over 2 ounces).  At 6am Monday morning his count was 13cc!!!!  Everyone is cautiously excited about it.  Dr. Abraham ordered that no one draw off his chest tube today (unless his breathing was labored and we thought he would benefit from having the fluid removed in which case there would probably have been a large amount of fluid....nothing like that has happened for over a week).  He'll have a chest x-ray in the morning to see how much and where any fluid may be.  If there's not much, the chest tube will come out soon.

Everyone is VERY cautious about this because Eli's chest tube output has decreased twice before only to go back up.  This time they're feeling more confident about it since we know he's got the chylothorax (fats in the fluid which is why he's on a low fat diet).  We'll see.  Of course we want to go home, but at this point what's a few more days or a week?  Whenever the chest tube comes out he'll probably stay for a few more days to make sure he's okay without it.  We will still have antibiotic therapy to do at home through his PICC line.

What is a chylothorax, or chyle (pronounced like the name "Kyle")?  It has to do with your lymphatic system.  That's what helps filter the blood.  The thoracic duct is in the chest.  It isn't really a duct, it's more like a mass of tissue.  It can get nicked during surgery or procedures in the chest area because it isn't an identifiable object.  The doctor can't look at an x-ray before he makes an incision and say "we need to avoid the area lateral to the right fifth intercostal space because the thoracic duct is sitting there."  It's something that is a risk with any type of chest surgery, but obviously not a big enough problem to avoid surgery when your child needs his blood rerouted so he can live.  When that duct his "cut" or "nicked," the contents leak into the chest cavity.  By testing the fluid that is pulled off the chest tube for triglycerides/fats, we know it's from the thoracic duct.  Eli's fluid was checked weeks ago and it was negative.  Either it was a false negative, or the leak just became substantial enough last week to show up on testing because the amount had increased and the fluid itself was cloudier than it had been.  Since switching to skim milk, using Portagen (I think I called it Protogen in my previous post!) for his nighttime feedings, and trying to stick to a low fat oral diet, the amount of fluid has decreased and has gotten clearer.  Once the chest tube is out, he'll stay on a low fat diet for several more weeks.  As a regular diet is reintroduced, chest x-rays will be done to monitor for any recurrence or increase in fluid. 

So that's what's up for now!  We are not talking about any discharge dates because it's still too early right now.  We'll know more after the chest x-ray Tuesday.  That will help Dr. Abraham determine when to pull the chest tube.  Whenever that happens, we'll start discharge planning.  Until then, we've only been told we'll probably be out of here by the Fourth of July!  They're just being funny.  And, no joke, I was given the employee discount in the cafeteria today.  We are not complaining about how long we've been here because it's much easier & safer to stay longer than it would be to have complications back home and be readmitted & have to start all this over again. 

Specific prayer requests:

- for the amount of chest tube fluid to stay low and the chest x-ray to be clear
- for my sanity because I'm now caged in a small room with an active two-year old who has energy again.  I'm not upset about this, but it does make it harder to do some simple tasks:  blog updates, shower, and bathroom breaks!
- for all four of us who continue to miss being together for more than a few hours on the weekends.  Our boys are incredible troopers!
- for the families and patients we have gotten to know here in the past (almost) 5 weeks.  Many have gone home, some have just been admitted for continuing care of an ongoing medical issue, some have just been admitted with a new diagnosis they and their families are trying to understand.  They all need more prayers and guidance as they navigate areas of their child's health they never dreamed they'd be forced to face.  We've been there.

Thank you all for the continued prayers, care packages, cards, messages of encouragement, visits, and for caring about us.  I will try to update more often this week as we gain new information, but as I pointed out in my prayer requests, that's getting harder to do!  Just know that's a good thing :)  Until next time, cherish Every Little Beat....

Thursday, May 16, 2013

Days 24 through 29, Post Op Fontan (May 11 - 16)

Wow, it's been a while!

Saturday, May 11:  Just a lazy day for both of us.  Eli was out of bed for a wagon ride in the morning, but we skipped one in the afternoon because he was sleeping.  He took a long nap (over three hours).  He woke about 7:30 and we ate lunch leftovers and some things I had in the fridge.  Despite the long nap, he went to sleep at a decent hour and had a pretty good night.

Bryan & his mom took Zachary to French Lick to ride The Dinosaur Train!  We told Zachary about it on Thursday so he had a couple days' anticipation built up.  He had a good time and came away with some new dinosaur stuffed animals (one for him & one for Eli) and a Dinosaur Train; Dinosaurs A to Z book that was featured on the show.  He was a happy little boy :)

Zachary hugging the leg of a long neck dinosaur

Sunday, May 12 (Mother's Day!):  I hope everyone had a good Mother's Day.  Even though we were in the hospital, it was still a very nice day.  I got exactly what I wanted which was to have the four of us together.  The guys gave me a pair of opal earrings.  When I opened them and exclaimed how pretty they are, Zachary told me that he picked them out.  He also said Bryan had another pair picked out but they weren't as pretty so he insisted Daddy buy this pair for me!  I like what I have but it does make me curious to see what Bryan's first choice was ;)

We spent part of the day on the playground because Zachary has never gotten to play there before.  Eli just hung out in the wagon and watched for a while but later we lifted him out and put him on Bryan's lap for a photo on the slide.  He rode down on Bryan's lap and sat at the bottom for a minute.  Then he wanted up on his feet.  That's the first time since before surgery that he's shown interest in getting on his feet.  With Bryan's help he toddled around the play yard while I trailed behind carrying the wound vac and tubing.  Eli did really well, but was glad to get back in the safety of his wagon!

Me & my boys.  Eli was ready for a nap and didn't want a picture, but we took it anyway!

Monday, May 13:  I left the hospital about 9am.  Bryan's mom and Aunt Judy came up to spend the day with Eli so I could come to Washington for the day.  I hadn't been home since we left in the early hours of April 16, but I easily found my way back although the bread crumb trail I left had long disappeared.  I'd planned all along to go home for Zachary's preschool program and graduation that night, but was able to leave earlier to pick him up from his last day of preschool.  He was surprised and I got big welcoming hugs from Zachary and his teacher, Ms Angie.  I've known Angie for years, we went to WC together.  Bryan and I knew Zachary would be well taken care of while he was at preschool, but Angie Robinson and Carrie Garland have stepped it up even more this last month.  They've bought and worn Zachary's Fan Club tshirts, taken pictures with him and sent them to me via cell phones or Facebook, given him extra hugs, and sent me little updates about how he's been at school.  It's been so comforting to know how well taken care of he is.

Surprising Zachary at preschool pick up!

Zachary, my mom & I ate lunch at Mi Pueblo.  Then we went home where another surprise was in store, but this time it was for me.  Ms. Yvonne (a retired school teacher from WC who is also the pastoral associate at Our Lady of Hope Church) organized some kids (high school age I think) to come to our house and work on our landscaping.  Our bushes were trimmed, weeds and lots of dead plants pulled from the flower beds, and LOTS of new flowers planted in their place.  It's much prettier than anything I've ever done to our place!  In addition to that, they planted flowers and laid mulch in two new areas for us.  Along the north and east sides of the house we now have new flower beds.  I was so surprised and touched by the beautiful gesture Ms. Yvonne organized and the kids who worked on it.  Just by the chance that any of them are reading this, THANK YOU!
The planter under our front window

A close up of some of our pretty new flowers :)

Zachary's program wasn't until 5:30 in the afternoon so we had some time to spend together.  I did a load of laundry and washed a few dishes.  I also got to take a shower in my own bathroom and a short nap in my bed.  Zachary snuggled up next to me and watched television while I dozed.  I hated to sleep away time I had with him, but I was very tired.  It also counted for some great snuggle time that we both needed.

The preschool program was a success and the graduation ceremony was very cute.

Zachary found us in the crowd :)

Zachary with Ms. Angie, his preschool teacher for two years.  He sure is going to miss her.

Zachary with Ms. Carrie, the teacher assistant he's had for two years.  He loves her too.

Zachary with Ms. Yvonne, the mastermind behind our landscaping renovation.  She is one of the sweetest people I've ever met.  Our community has been so lucky to have her play such a big role in children's lives.  Everyone loves Ms. Yvonne (and not just because of her bread!)

Zachary with Sarah Wichman, a high school helper at the preschool and one of the volunteer workers who helped transform our yard.  In addition to working in our landscaping, Zachary says she chased him around the yard quite a bit!

Proud Mommy & Daddy

The Graduate

After the program we went out to eat and then went home.  I quickly packed up and spent a little more time with Bryan and Zachary before leaving.  I got to look through some of Zachary's school work, including a packet to celebrate Mother's Day and Father's Day.  The kids were asked questions about their parents and the teachers wrote down their answers.  One of the funniest questions/answers was "How tall is your mommy?"  I don't remember the exact number he said, but Zachary's answer was something like "60 pounds."  Too cute!

I left two of my boys to head back to my baby boy.  I got to the hospital about 10:40pm.  Eli had a very good day with Mamaw Linda and Aunt Judy.  He walked a little in therapy and was in a good mood most of the day.  I'm so grateful to Linda and Judy for coming all the way up here for a long day so I felt comfortable enough to leave.  I miss being home, but I know we'll get back there soon.  It's just not the same without it being the four of us anyway!

Tuesday, May 14, 2013: His wound is looking better & better.  In fact, when they took the dressing off, they only cleaned it and put a regular dressing over it.  THE WOUND VAC IS GONE!!!!!  He's much happier without it (he did very well with it, but feels better with it gone).  It's crazy to me to think that it only took 12 days to close something that was three inches long and one and a half inches deep (down to the bone).  It looks great and we'll just change the dressing that's on him every three days or so.  The best part of it is that he doesn't have to be sedated anymore and we don't have to withhold food and drink for hours prior to changing it.

While he was still groggy from the sedation, we used the opportunity to change his PICC line dressing.  It has to be done weekly and it's easier while he's not fighting us.  I don't know how we'll get it done at home without drugs but we'll figure something out!  I joked yesterday that the longer we're in here means the less often we have to change it at home (just pointing out an advantage to spending this much time in the hospital!).

Just as he was finished with everything, he had a visitor.  It was Izzy, a pet therapy dog and a volunteer handler.  Eli has had several canine visitors but he hasn't been a fan of them.  Today (with drugs in his system) he was more receptive and even allowed her on the bed with him.  He petted her for a long time and said "Albert" many, many times.  I showed a picture of Albert so people knew who he was talking about.

Eli and Izzy

After Izzy left, Eli had another visit.  There were two players from the Indianapolis Indians (minor league baseball team).  Brandon Cumpton and Kyle Waldrop (pitchers, I believe) were escorted room to room.  Eli wasn't very talkative yet, but he was okay with them being in here.  They asked him a few questions and he stared at them.  He was still groggy from the meds so he was maybe seeing more than two guys in front of him!  We got a picture of them beside Eli's bed and they moved on down the hall.  Eli must have remembered the ball players in his room because he talked a lot about baseball as the afternoon went by.

Eli with the Indianapolis Indians players who visited

He had a therapy session which consisted of walking to his wagon for a ride (we moved the wagon a few doors down which may have ticked him off).  He wouldn't get out of the wagon after we were done so I took him outside.  As we soaked up the sunshine, he pointed to a picnic table.  It was the first time he's indicated he wanted out of the wagon.  Of course I put him at the table and later he wanted to go into a play house.  He did well outside but was ready to come in and get a drink.

When we got back to the room, he had some mail to open.  His baby cousin Alyssa had sent him a care pack with a note and some stickers.  He opened it himself and pulled everything out.  When he was done, he carefully put it all back in the envelope.  It was so cute to watch!  Aunt Cara, Uncle Andrew and baby Alyssa are planning on coming Friday afternoon for a visit.  Eli will be so happy to see Alyssa (and the others as well, but he loves his "bebe!")

He ended the day with more trips around the unit and a stop in the playroom.  Then he wanted me to hold him while he laid his head on my shoulder.  It's so nice now that the wound vac is gone because I can hold him chest to chest again.  Prior to the wound vac he was too sore from surgery and the growing abscess, then he had a large tube sticking off the middle of his chest which made it difficult to snuggle.  Now we can snuggle up the way it's supposed to be!  After 45 minutes of me walking around holding his nearly 30 pounds on my scrawny forearm while my other arm was around him because he was unsteady, I had to call it quits!  The nurse and tech came in and he got a bath before bed.  Then his nurse helped him choose a movie to watch.

Eli with Steph, one of his favorite nurses.  She used to be a tech when Eli was first diagnosed and is now an RN.  She's seen him grow through the years and stages of surgeries.  We've been very lucky to have many of the same nurses throughout Eli's hospitalizations. 

Wednesday, May 15, 2013:  Eli wanted out of bed and into his "pway room" earlier today.  As soon as his morning antibiotic was unhooked we changed his clothes and headed out.  He cried because I made him walk from the bed to the wagon (which a student nurse had covertly moved a few doors down to increase the walk).  He played in the play room, wanted to go to the playground, got out of the wagon and played with other kids who were out there, went back to the play room, sat on some riding toys, and then took over sole use of a car which he rode in for the next hour.  He pedaled that car up and down the hallways and around the entire unit.  I think every nurse, doctor, tech, secretary, and even some parents on the floor were impressed that Eli was up and so busy.  He was all business when he was driving, there were no smiles.  While he was in his car, we had a surprise visit from Brenda and Lee Jones (my mom's cousin and her husband).  They've been Eli and family supporters from the start and it was very nice to see them. 

Eli and Mommy hanging out on the playground equipment

Riding the rocking airplane

Mommy & her crazy driver
A visit with Lee and Brenda Jones

 While Eli was pushing his car around the hallway, we checked his pulse ox.  It was 79-82% while he was active.  We'd like it to be higher, but he was tolerating that level really well and (more importantly?) having fun.  When I finally got him back to bed it was because he was getting so tired he could barely stand, but he wouldn't come back on his own so I had to carry him.  In total he was out of bed and off the oxygen for almost 3 1/2 hours and was busy the whole time.  He didn't argue at all when I picked him up and seemed glad to be back in his room.  We checked his pulse ox before reconnecting his oxygen and it was 85-86%.  Again, they'd like it to be higher, but they do think it will increase over time.  For now, he's on oxygen while in his room, but can be off it when we're motoring around the unit. 

Another reason his o2 levels may be low is because his chest tube is actually draining more fluid.  What comes off is looking cloudier meaning it may have some fats in it.  Eli is being put on a low fat diet and his nighttime tube feeds are changing to something called Protogen.  Everyone says it's a good thing he has his gtube because it's torture to get kids to drink the stuff.  His low fat diet is actually pretty easy to deal with because he doesn't eat a large amount of food anyway.  The biggest change is going to skim milk in his bottles instead of whole milk.  He didn't seem to mind it when we gave it to him so let's hope that he continues liking skim milk for as long as this diet is necessary (perhaps 4-6 weeks?).  Other than the milk, I just have to watch and make sure he doesn't eat a lot of fats.  We're already recording every bite and drink he takes and the dietician said she didn't think we needed to change much about his food diet if he tolerated the milk change well. 

He took a nap and my sister came while he was asleep.  Once awake, we took Ashley on a tour of the unit since she's never been anywhere but our rooms.  It was another nice visit on this beautiful day!

Usually Eli & Ashley are very goofy with each other.  I think that's why I like this pic so much, because they're just hanging out.  I love the way he's looking up at her.

Thursday, May 16, 2013:  Not a busy day.  I talked with his physical therapist yesterday and told her about his marathon of activity.  She was very impressed although I don't know if she believed he really could walk without screaming since that's all she's seen him do.  We agreed that he may be more active in therapy if it's "his idea."  We agreed that I would have him out of the room (either in the playroom or on the play ground) around 11am today and she would just happen to join us for some play time.  I think he caught on in the middle of it, but the session went much better.  He kept one eye on her the whole time, which was very easy for him since he was wearing his awesome Buzz Lightyear sunglasses.  He didn't like being outside this morning, but it was very humid and probably didn't make him feel too well.  We came inside to the play room where he immediately got in the car and started out into the hallway.  We convinced him to go to the therapy room (he's never been in there before, they always come to him).  He only went because we told him there was a basketball goal.  He went in, got out of the car, shot the ball once and got back in the car.  That's Eli for you. 

What a get up he had on today...Colts hat, Buzz Lightyear sunglasses, Zachary's Fan Club tshirt, orange and blue plaid pajama pants, and tennis shoes.  He can pull of any look, any season!

After lunch, the Child Life Specialist told us there was a group in the play room and they were making picture frames for the kids.  I took Eli in and there was a large machine set up to cut names into a wooden mat which was then placed into a picture frame.  These are free for the kids in the hospital.  I liked Eli's so much that I bought one for Zachary.  This man and his daughter donate their time and materials to do this for hospitalized children.  I haven't taken the time to look at their website yet, but I want to learn more about them. 
Personalized frames for the boys
Eli is just waking from a nap.  We're planning to watch the Pacers and just chill out for the evening.  Well, that's my plan.  Eli probably thinks he's going to drive his car again. 

Specific Prayer Requests:
- for Eli's chest fluid to decrease so we can get his chest tube out
- for his oxygen saturation levels to come up to be in the low to mid 90s
- for good, restful nights of sleep...the past few nights haven't been bad, but not good sleep for either of us.

Friday, May 10, 2013

Days 22 & 23, Post Op Fontan (May 9 & 10)

Thursday was a pretty easy day.  He didn't have a dressing change scheduled so he didn't have any feeding restrictions.  He's been getting tube feedings through the night to supplement his oral diet.  Protein is a huge factor in wound healing and that's something Eli doesn't eat a great deal of.  He eats some, but not what they would like for "proper wound healing" so they've added protein to his nighttime feeds.  Well, Thursday morning he had a burp that got a little.....oh, shall we just say "messy?"  He only had about 45 minutes left on the feed so we just shut it off.  Overall the doctors and dietary have been very pleased with his oral intake, but more vitamins and minerals won't hurt!

After most of his doctors saw him in the earlier part of the morning, we went for a long wagon ride and visited the play room (Eli's request).  He won't get out of the wagon, but enjoys going in there to look at the variety of toys and possibly touch a few.  Today was also the first day he's worn a real shirt since surgery.  It's nearly impossible to find a button up shirt in his size that isn't dressy so we just went with this AWESOME Eli's MVPs shirt which is a few sizes too big. 

Eli sporting his Eli's MVPs shirt in the playroom
We have to be careful because his right arm has the PICC line with two short "tubes" coming off it.  Those dangle a little and we can't get them caught.  We also have to observe sternal precautions with him for at least 6 weeks after surgery.  One of those precautions is that we can't lift his arms over his head, especially at the same time.  He can do it because if it hurts he'll stop, but we can't do it to him.  That makes getting dressed a little tricky at times. 

After his wagon ride and some lunch, Eli took a nap.  I used the chance to run out and be outside the hospital.  I had no plans and wound up at Staples and JC Penney.  I bought a few shirts for Eli with characters on them that were on clearance.  When I got back he was still asleep.  The boy took a three hour nap!

Thursday night we had some visitors.  Longtime friends of mine stopped by as well as Aunt Ashley Veale and her boyfriend.  The five of us walked the halls and pulled Eli in his wagon.  I think our visitors enjoyed their tour ;)  After they left we started getting ready for bed.  I was worried that his three hour nap would make it hard for him to fall asleep.  He was out before 10pm.  However, he woke up when he had to poop.  Then he was up until 12:15am.  He was playing, kicking his legs, laughing, teasing me, and just being an adorable pest.  I tried explaining that he had to be quiet because there are sick children here who are trying to sleep.  He understood and complied exactly like you'd expect from a two year old.  Eventually he did fall asleep and slept pretty well through the night.  He woke once when the nurse had to check his vitals, pull off his chest tube (drain it) and start his antibiotic, but he went back to sleep once she was done. 

His feeding was stopped at 4am because his dressing change was scheduled for 9am this morning. Today started off kind of rocky.  Earlier I used the phrase "wonky" and I think that's pretty accurate for the events of the morning. As he was waking up and doing his stretching thing, I was in the bathroom getting washed up.  As I walked from the bathroom to his bed, my eyes, out of habit, drifted to the monitor.  It showed a heart rate of 90, which is what he is paced at.  As I put some clothes away his monitor started beeping.  It showed a rate of 160!  It hadn't been but a few seconds since I saw the 90, so I really didn't worry because I thought it was "misreading" and would go back down.  It didn't.  His heart rate was 145-160.  Eli was just laying there watching tv.  He was a little annoyed by the beeping monitor, but otherwise not showing any signs of distress.  I was getting worried because the last time his heart rate rose he got up to over 200 beats per minute and almost had to be cardioverted/shocked to get out of the rhythm.  He wasn't that high, but we didn't know why he was doing 160.  When we looked at the monitor, it looked like he had two pacer spikes for every complex (heart beat).  That means he would have been pacing atrially and ventricularly even though his pacer is set for atrial pacing.

The aide came in and got blood pressure, O2 and temperature.  As she was doing that, three nurses came to our room.  They were soon followed by our nurse (who we hadn't seen yet simply because she was tied up in another room...that's why nurses work together!  It's a beautiful thing!), the hospitalist and the nurse practitioner for the floor.  Keep in mind, this rate had been going on for all of maaayyybeee 3 minutes by the time they were gathering in our room.  They take care of him here!  One of them paged Dr. Steinberg who said he'd be right over as soon as he went to the electrophysiology lab to get one of the computers that controls the pacemaker.  He was here within 10 minutes.  While we waited for him, some of the nurses cleared out because things were under control and Eli was getting very agitated with all the people.  Our nurse stayed in the room while the hospitalist and NP stayed in the doorway.  He was actually fine and calm through the whole thing with the exception of too many people in his room looking at him.

Literally as Dr. Steinberg walked through the double doors to our unit, Eli's rate immediately went to 90.  The unit staff teased Dr. Steinberg about it and as he set up his computer he made a silly comment in response, but there was no smile on his face.  It wasn't as serious as the Sunday night when Eli was in SVTs and atrial flutter, but he wasn't playing around either.  He asked a few questions and began looking through the telemetry strips that had been handed to him on the way into our room.  He started working on the computer and changed a few settings.  After several minutes of this and monitoring Eli, he basically said he didn't think it would happen again.  He said what happened was due to the pacemaker settings.  It's very confusing, but in a nutshell, the atrial wires picked up Eli's ventricular rate.  A setting on the pacer drove Eli's atrial rate higher which kicked on the ventricular pacing, which is why we saw both pacer spikes on the monitor.  The setting had a cap on it of 160 which explains why it didn't go any higher.  He doesn't have an explanation as to why it quit sensing when it did and returned to 90 (other than sensing his presence on the unit, him having the magic touch, and other BS because he was now smiling and being a joker again...which was a relief to me!).  I may not be explaining it well here, but what he said made sense at the time and he isn't worried about it.  He simply said there are things to tweak with Eli's pacer while he's still here and we'll still be doing some minor changes over the next few months.  We have to remember that although Eli was junctional for a year and a half prior to getting the pacemaker, his rhythm could be changing.  The amount of surgery he had could have changed his baseline rhythm to an extent, and it could still be changing since he is only three weeks out.  The pacer will be adjusted accordingly. 

The point is that Eli is fine.  The bad news from all that was we missed our 9am wound dressing time and the team had to move on to other patients.  Dr. Steinberg assured us Eli was okay to continue with the sedation for his wound vac dressing change and our nurse worked on getting that set up again.  Eli was asking for a bottle but we couldn't give him anything.  We didn't know if they could come right over and do it, if they could do it in the afternoon, or even yet today!  We had to keep him NPO until we knew more.  In an effort to distract him, we went for a wagon ride.  He was okay with it for a while but then he kept pointing out the doors toward the family room.  The family room has a refrigerator.  The refrigerator has our half gallon of chocolate milk.  No one has ever said Eli was stupid. 

As I pulled him through the halls he was yelling "choc milk!"  As we passed the nurses station we were told they were trying to get a time from the wound care team and would let us know as soon as possible.  I didn't have to tell them anything, they wanted it changed or to feed him as much as I did!  After a couple more laps I happened to see the lady from the wound care team headed toward our room.  We got back there and found out they were preparing to do it as soon as everyone necessary could be gathered.  They started a little before 11.  I was floored at the difference since the dressing change on Wednesday.  It's definitely almost healed.  The PT doing the change said she agreed with what Dr. Abraham had hoped would happen:  That this may be the last time placing the vac.  The next time they come in it will likely be just to take it off and determine the best way to finish closing it (stitches or natural). 

Originally the next change was scheduled for Monday, but in an attempt to coordinate chest tube removal while sedated for the wound vac change, it's being moved to Tuesday.  At this point we don't know that his chest tube can come out, but he's definitely moving closer to that and by delaying until Tuesday gives him one more day. 

After the wound vac was done I got his toenails trimmed.  Nothing like using a little sedation to my advantage!  I did his fingernails Wednesday!  He was very very funny today as he was coming out of it.  We're very fortunate that he's done so well with all the sedation he's had to go through.  Today he was laughing easily and making funny noises.  I got some of it on video but I can't figure out where to find it on our computer and therefore can't post it here.  Just know that he was doing some silly and adorable things.

He ate a good lunch.  Most of it was mine as he found out he liked my taco salad.  As long as he's eating, right?  Then he fell asleep for a long nap.  When he woke up the good mood was gone and he screamed at me for an hour.  He couldn't decide on a movie, he was uncomfortable in the bed, he didn't want me to move him in the bed, he was hungry, he didn't want a bottle, he didn't want to sit up to eat anything (would have eaten laying down if I had let him), etc, etc.  As soon as he was unhooked from his antibiotic I got his little bitty butt in the wagon and we went for a long ride.  Several stops in the playroom, countless trips around the circle, a long stop to look out the big window at the front of the hospital and parking garage, and a chocolate milk later he was happier.  We came back to the room where he screamed at me for getting him out of the wagon and into bed.  Then he got happier and ate some of his cold supper at 8:30.  Now he's lying in his crib, watching Rio and sucking a bottle.  Hopefully he'll stay awake a little longer because the nurse needs to come pull off his chest tube again and he's due for a couple meds.  Then he can sleep uninterrupted by nursing until almost 5am.

It's been a busy couple days, but he is showing improvement.   His "nicer" attitude is breaking through more and more each day.  I really think he's getting tired of me.  That doesn't bother me because this is a long time to spend with one person.  Hopefully he'll get to see Daddy & Zachary this weekend to help lift his spirits more.  Speaking of those two guys, they are going to ride The Dinosaur Train tomorrow at French Lick.  We heard about this and bought tickets back in March.  We only bought three because Eli's surgery date wasn't set at the time and even if surgery were over, he couldn't be out in that type of crowd.  Zachary, Bryan and Bryan's mom will take him tomorrow.  We didn't tell him about it until last night.  It was so nice to hear the excitement in his voice. 

Zachary's preschool program and graduation are Monday night.  I can't believe he's finishing preschool and is signed up for kindergarten!  My baby is growing up so quickly.  I'm incredibly proud of the big boy he's turning into, but I just want to keep him a baby!  Especially these days, since I only get to see him for a few hours once a week :(  Each time I see him I think he's physically grown and he has new vocabulary.  Last weekend he was using the word "brilliant" quite a bit.  Not sure where he picked it up or what prompted it, but it was cute.  I had a very sad moment yesterday when I realized that I will never again drop him off or pick him up at preschool.  His last day is Wednesday and I'll still be here with Eli.  It's probably for the best because I'd be a crying mess (more so than his very first day, which I am proud to say I handled very well!).

Well I've worked on this post off and on for the past 7 hours!  It's all done during Eli's "happier" moments that don't involve a wagon. 

Specific prayer requests:

- for a good night's sleep for Eli & myself.  Hospital life isn't made for quality sleep.  They're doing their best to cluster his duties, but there's only so much they can do. 
- for Eli's pacemaker to have all the "kinks" worked out before discharge
- for Eli's mood to continue to improve and for him to let himself have some fun!
- for Eli's chest tube drainage to decrease and stay down so that his chest tube can be removed at the same time as his next dressing change. 
- for continued healing of his chest wound
- for our next "Specific Prayer Requests" to include a plea for starting the process of discharge planning (hey, a momma can dream, right?)

Thank you all!

Wednesday, May 8, 2013

Day 21, Post Op Fontan (May 8)

This moment three weeks ago we were sitting in a waiting room as Eli was in surgery.  That day he endured two major reconstructions to his heart, placement of a pacemaker, and several units of blood all totaling over eight hours in the OR.  After talking to Dr. Abraham in the late afternoon he asked if we had any questions.  I blurted out "Did you get lunch?"  He smiled and calmly (because I've never heard him anything but calm) said, "No, we just plow through and get the job done." 

Eli's wound vac dressing change went fine today.  His sedation was even better than it was Monday.  Monday they put a dry washcloth over his eyes because he didn't like the bright lights they needed.  Today we did that as soon as he was starting to "phase out" and aside from the occasional grunt or hand motion he was very quiet.  The wound looks great.  I am astounded at how well it is healing.  The wound vac is a miracle invention.  The other day I told Dr. Belcher my only wound vac experience was on the backside of people who were eighty and older.  He just smiled and said, "Now you see how they're supposed to work!"  Dr. Abraham wanted to be present for today's dressing change so he could assess the wound.  He hadn't seen it since last Friday.  Eli's next change is scheduled for the day after tomorrow, which will be Friday.  Then they'll do it again on Monday.  Today, Dr. Abraham said he wouldn't be surprised if they don't replace it when they take it off Monday.  At that point he'll have to make a decision about how to close the rest of it (let it granulate/"fill in" with new skin or use stitches).  Just the fact that Eli's healing so well and we can even think about stopping using the wound vac is mind blowing to me.  I don't even care if they need to put the wound vac on for a few more days after the change on Monday.  To be that close is exciting!

Eli's chest tube is still draining a fair amount.  The past three days he's averaged 100-120cc/day (between 3 & 4 ounces).  That's not a lot but too much to handle on his own without a chest tube.  Hopefully he starts putting out less and less and we can talk about setting a day to remove that.  Things are moving along slowly, but he's getting better.  We just keep saying that we knew his surgery was going to be huge and it ended up being an even bigger surgery by the necessary mitral valve repair.  Chest tubes and infection are not to be taken lightly, but we keep saying at least he's beating and breathing.  We'll deal with the rest as it comes!

Eli is sleeping now.  About 15 minutes before his nap the nurse turned off his oxygen.  That hasn't been done in days and we need to assess how he does on room air.  He quickly went from 95% to around 90%.  Basically he's ranging from 89-91% with the occasional 86 (that's the lowest I've seen).  Once he got up to 92%!!!!  I took a photo of that and sent it to Bryan!  Ideally, they want him to be in the low nineties without supplemental oxygen, but if he stays in the upper 80s Sara's phrase was "we'll deal with it."  As the fluid from his chest tube decreases his oxygen levels may stay a little higher.  Time will tell and we've got plenty of that in here!

Today is National Nurse's Day.  I want to thank all the wonderful nurses I have the privilege of working with (when I get there!).  I also want to thank all the incredible, caring, intelligent, quality nurses who've taken care of Eli not only throughout this hospitalization, but the last two and a half years.  I couldn't begin to name them all and I'm afraid I'll leave someone out.  Let's try it this way:

- the nurses at Cullen Medical who take care of all four of us and many details of Eli's care so we don't have to mess with it
- the nurses at Peyton Manning Children's Hospital.  There are too many to name so I'll attempt by department (and I'm afraid I'll leave one of them out!):  Sara Bodenmiller (cardiac NP) and the nurses in the cardiac office, the OR nurses (especially Susan who was Eli's surgical nurse for his Fontan and the abscess drainage), the preop nurses, PICU nurses and NPs, the nurses in the vascular lab where Eli's PICC line was put in, the third floor nurses and NPs, case management nurses, the nurse liaisons who keep us informed during Eli's procedures, the recovery room nurses, and all the behind-the-scenes nurses who do things I don't even know about!
- Tracey, nurse at Dr. Kumbar's office (Evansville cardiologist) and the others who we don't see as often but always help out when we need it
- the nurses at Williams Brothers HealthCare Pharmacy who help coordinate Eli's feeding tube supplies and will be coordinating his home IV therapy (whenever that may be!)

So, if you know a nurse, give some credit to him/her.  I think I saw that it's also Teacher's Week as well as Nurse's Week.  Isn't it funny how teachers and nurses are celebrated around the same time as Mother's Day?  Parenting, teaching and nursing have to be the most rewarding careers that can emotionally drain you five minutes into your day!  Thanks to all teachers (including my momma!) for all your hard work as well :)

In yesterday's post I had alluded to the fact that there may be a shortage of blood (just me speculating since it took so long to get Eli's unit for transfusion).  I don't have any more info regarding blood supplies, but did find out that there is a blood drive in Washington this week for anyone who's interested.  It's at the Birdcage (Washington Catholic gym).  The Red Cross will be there collecting units on Thursday, May 9 from 12:30pm - 5:30pm.  If you want to help out, this would be a good chance. 

Another organization who coordinates blood drives around the state is Indiana Blood Center.  You can get to their website here and see if they have any blood drives in your area.  Also, you can always contact your local Red Cross to see what their schedule is.  Thanks for all the responses about blood donation from my last post!  Take care and thank you for the support :)

Tuesday, May 7, 2013

Days 17, 18, 19, & 20 Post Op Fontan (May 4, 5, 6, & 7)

Saturday, May 4, 2013:  Eli's wound vac dressing was changed about 1:30pm.  This was the first time I'd seen it since surgery day on Thursday.  I was absolutely shocked to see how well it was already starting to heal.  On Thursday I could see sternal wires and on Saturday they were already covered up!  The tissue was red and healthy looking.  The hospitalist, RN, and wound care team in the room with us were pleased with his progress.  Because he was healing so well they decided to change it again on Sunday.  Originally they thought they'd change the dressing every other day, but he was healing so quickly they felt it was necessary to do it every day.

Bryan and Zachary got to the hospital as the dressing change was starting.  When it was done I called them and they came in the room to help with Eli's bath.  Eli was still pretty loopy because of the sedation (it doesn't make him sleepy, just relaxed and he won't remember what happened).  It was the perfect time to bathe the smelly little critter.  He liked it and also got a bed change.  As he fully woke up, he must have liked having the four of us together in his room.  I thought Zachary and I would leave to do something fun together, but he wanted to stay and watch movies with Eli. 

Eli trying to fit his hand into my bracelet (it's his hospital bracelet that Bryan & I each wear while he's an inpatient)

Pablo (character from The Backyardigans) that Eli is attached to.  Pablo has been through everything with Eli this admission (two OR visits, PICC line placement, chest tubes, therapies, wagon rides, sleepless nights, etc)

Happy boy with a french fry from his daddy.

Eli being silly

We hung out until the evening when Eli was moved from the PICU to the third floor.  Zachary was fascinated with Eli's rolling crib and the fact it fit on an elevator.

After we helped get Daddy & Eli settled in, Z & I headed south to Greenwood.  He decided he wanted Denny's for supper.  In the parking lot he said he just loved their pizza and goldfish crackers.  That's exactly what he ordered and ate.  Isn't the pizza and goldfish crackers why we all go to Denny's?

Once we got to Ashley's house we did a few chores (I had laundry to do as well as some bottles & pacifiers to wash) and got ready for bed.  He had decided that we were going to the Children's Museum on Sunday, even though he'd been there two weeks ago with my sister.  It was wonderful to snuggle him to sleep.  He fell asleep on my shoulder and holding my hand.  I was physically and emotionally exhausted but tried to stay awake as long as I could so I could just feel his hand in mine.

Sunday, May 5, 2013:  We packed up & headed to the museum in the late morning.  When we got there, we bought a membership.  By the time the four of us go two and a half times, it's paid for.  Have you met my son with his dino fascination?  We'll be there many more times in the course of a year!

Practicing our dino roars and stomps before we left Ashley's house

The best way to start any day

The dinos were our first stop.  After that we saw the trains, the blown glass exhibit and play area, Hot Wheels display, Egyptian display, and the gecko area. 

Our young paleontologist asking questions at the dinosaur exhibit.

Climbing like a gecko
Bryan was on his way by then and we left the geckos to meet him at the entrance with our new membership card.  Zachary had to take Bryan back to the dinosaur area, the blown glass area, then to the geckos.  Then he wanted to see the science area and he played there for a long time.  The museum was closing soon and to get him out we told him if he wanted the gift shop we had to leave then so it wouldn't close before we got there.  He picked out a pair of dinosaur chopsticks for Eli to complement the ones he chose for himself when he visited with my sister.  For himself, he chose a small stuffed dino that's similar to the one he got Eli last time.

Mommy & Daddy with their blue eyed boy after a fun day at the museum

We came back to the hospital and after a brief visit, Bryan and Zachary left with Bryan's parents who had sat with Eli so Bryan could join us at the museum.  By the four of them leaving together, I got to keep the van.  Bryan was returning to work on Monday so now I have my own transportation up here if I need it.  Eli & I spent the evening trying to unpack into our new room (our fourth this admission!) and settle in to just be the two of us for a long time.

Monday, May 6, 2013:  Eli was NPO (nothing by mouth) at 6am.  His wound change was scheduled for noonish but it was able to happen a little earlier.  Again, he did well with the sedation, but since he's been sedated so often in such a short period of time, he's starting to build a tolerance to it.  It took a little more medicine today to achieve the same effect.  The whole process only takes about 15 minutes and he does really well.  The meds they use are Ketamine and Versed.  I think they may have used Ativan as well on Sunday (not sure since I wasn't here).

The wound is looking even better than I thought it would after seeing it Saturday.  His next scheduled change is for Wednesday.  They're hoping to let him last until Saturday for the next change, but we'll know more after Wednesday.  Once Eli was awake enough to eat and drink, he had a good lunch!  He doesn't eat a lot at once, but he eats several bites of things throughout the day.  Today, he ate a pretty fair amount in a short time and then took a much needed two plus hour nap.  He did well with supper too and is asleep as I type this.

The plan for Tuesday is to resume some Physical Therapy.  He hasn't had any since last Wednesday, the day his chest tube was accidentally pulled out.  Oh, yes, his chest tube drainage has been steadily decreasing.  Nothing yet has been said about when we may be rid of it.  

As of now, we don't have any guess how long we'll be here.  The wound vac is working great at healing him, but you have to remember he has a three inch incision about an inch and a half deep into his chest. He's doing great, but it still takes time.  No one has ventured any guesses, but I think it's safe to assume we'll be here for at least two more weeks.

Zachary and Bryan went fishing tonight at my mom's pond.  They had quite a catch and Zachary is looking forward to eating some fish!  I know he misses me & Eli, but it's already improved his mood to have Daddy home.  Hopefully spending some time with me this weekend helped him as much as it helped me!

Tuesday, May 7, 2013:  Eli got a blood transfusion last night.  His hematocrit was lower than they'd prefer for a single ventricle baby recovering from two surgeries in three weeks and trying to heal a large wound in his chest.  Blood was ordered yesterday morning.  It was finally available by 3am.  Eli's a type O, so if it took that long to match him I can only guess that the blood supply is low.  {Insert plea for blood donation from anyone who is able to donate.  FYI:  Eli has received 8 units of blood this admission alone.}  Because of his nighttime medication schedule, they've changed when his vitals are taken so they can coincide with medication times throughout the night.  That gives him more opportunity for sleep.  That didn't happen last night though because of the blood administration.  Because of that we slept in this morning (as much as you can in the hospital!).

In addition to his regular visits from cardiology and infectious disease, we met with a social worker who introduced me to some programs that may be available to us for Eli.  Some are financial and some are support systems.  She suggested that we apply for some of the financial assistance simply to get our foot in the door as Eli has an ongoing medical condition and will need care for the rest of his life.  The other meeting we had was with dietary.  They're trying to figure out the best tube feeding for him based on his oral intake.  Protein is crucial to wound healing and that's usually not one of Eli's strong points in a meal.  They're impressed with the variety and amount he does have, but agree we need to be a little more aggressive on his tube feedings.  When we feed at home and so far here in the hospital we've used a formula that is 30cal/ounce (a 1 calorie per 1 cc of fluid ratio).  They're changing it to 1.5 calories per cc formula and attempting to increase the rate of his infusion so he gets more in the same amount of time.  Depending on how he tolerates that for the next few nights they may add some protein powder to the formula to increase his overall calories and protein.  Ideally he should have about 1000 calories/day.  If he tolerates the new formula at a faster rate and the protein powder, that means he'll receive 540 calories via tube feed and his full requirement of protein.  We'll see how the next few days go.

His next dressing change is Wednesday.  We're aiming for it to happen between 8 and 9am so we don't have to keep him NPO all morning.  Based on what they see with the wound change tomorrow, they'll decide when his next one will be. 

I'll try to be better at updating daily or every other day.  This weekend was fun and I wasn't on the computer much, but overall it's easier for me to keep track if I do it more often!  Thanks for your prayers and support!