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.

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!

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 :)

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!

Day 16, Post Op Fontan (May 3)

Yesterday I wrote that Eli's wound vac dressing would be changed today.  This morning we found out that in addition to the wound vac he needed another chest tube.  The fluid built up again on the right side where his chest tube had been pulled out (accidentally) the other day.  Instead of just getting Versed like he did yesterday, he had to be knocked out for all of it.  

Once they had him asleep I had to leave the room.  I waited about 30 minutes before they came to get me.  He was still asleep but starting to wake up.  The wound vac was pretty much the same as yesterday's except they added a piece of foam over the clear dressing.  Through the morning Eli had some breakthrough drainage come out of the dressing.  It was covered with gauze & Tegaderms (clear dressings usually used over an IV site).  I noticed his blanket moving over his chest at one point this morning and found he had picked a hole in the Tegaderm.  He had two fingers underneath it just feeling around!  He wasn't close to his incision, but close enough!  This foam might help prevent some of his exploration.  

Dr. Abraham placed a chest tube in almost the same spot the other one was.  He drained off 130cc of fluid (4 1/3 ounces) and sent a specimen for culture.  They want to see if there's any infection in the chest fluid that may need an alteration in antibiotics.  As of now, because of what was seen yesterday in the OR, Eli is being treated as if his sternum is infected.  That's an osteoitis (bone infection).  The treatment for that is 3-6 weeks of antibiotic therapy.  You know, kind of what we're already doing.  If the chest fluid is positive for anything, we'll have to add another antibiotic to our routine.  

We'll stay in the PICU again tonight because Dr. Abraham wants another dressing change tomorrow.  He won't be here for this one so the hospitalist and wound care team will do it.  He said he would leave it up to the hospitalist to decide how much sedation Eli has (Versed versus just getting some morphine).  After that's done we'll find out if we'll stay longer in PICU or go to the floor.  We're okay wherever he is, it's just weird not knowing.  They're working on setting a time for tomorrow's dressing change.  He'll have to stop eating and drinking four hours prior to it, so we have to figure out what time frame he can have food and feed him.  It's funny because nutrition is extremely important to wound healing but we have to keep him NPO so much because he has to be somewhat sedated for the dressing changes.  Thank God he has a feeding tube.  

Dr. Belcher didn't round today but his nurse practitioner did.  We even knew her because she used to be the nurse practitioner for the PICU during Eli's first two surgeries.  We had noticed she wasn't here when we were in PICU after surgery a couple weeks ago and now we know why!  It's nice that she's the NP for infectious disease because she really knows Eli's history. 

Eli's now resting in his crib.  He's craving diversion and is watching a movie on the portable DVD player and demanded the tv be on also.  He was finally able to get some milk (first bottle since about 6 this morning) and I can order him a tray soon.  He was hurting a little but ago but a dose of morphine made him almost talkative!  The nurse pulled another 35cc from his chest tube (just over an ounce) so getting that fluid off has to feel better.  

Bryan and Zachary got the yard/jungle mowed today and even squeezed in some golf time (in the yard).  Bryan said Z had a good day at school and they ate leftover Bobe's for lunch.  I think some Daddy time was exactly the medicine Zachary needed.  They're going to come up here on Saturday to visit.  The last time I had to wait a week to see Zachary, he looked like he'd grown a lot in that week!  I'm sure it will be the same this time. 

Thanks for all the prayers and encouragement.  They really do help.  I was having a very rough morning.  I felt so sorry for myself but kept trying to remember that Eli is the one who is physically suffering.  At just the right time, I got a text from Caleb's mom and she was saying some very sweet things.  Reading things like that and all the messages you leave on Facebook and in the cards you're sending really help me cheer up.  And we get to see Zachary tomorrow!  That will help cheer all of us up!

Day 15, Post Op Fontan (May 2)

Last night was one of our toughest nights.  He cried all night for a bottle.  He couldn't have anything after 11pm so we had let him eat anything he wanted through the evening.  He had lots of bites of things (one bite of this, two bites of something else, etc) and also had a tube feeding going until 11pm.  His procedure was scheduled to start at 7am, so nothing after 11pm.  It was a long night.  We've been begging him to eat for days and now when he is begging us for something to eat or drink we couldn't give it to him.  But as Sara (surgical nurse practitioner) pointed out, him asking for something is a good sign that he's feeling better. 

He was scheduled to have a chest xray just before going to the OR.  When we tucked him in last night we thought the spot on his chest was looking bigger than it had earlier in the day.  When this morning rolled around he was still covered up and we didn't see it.  The xray tech asked Bryan to hold Eli up a little so she could slip the board under him.  When she put the light on him we noticed his blanket was saturated.  I pulled it down and saw that his incision had opened in an area and fluid was leaking out.  Most likely, it had increased in size overnight and the pressure put on it when Eli was held up for the xray caused it to rupture.  While Bryan and the tech finished the xray, I got his nurse.  She came in and decided to call Sara just to let her know.  It obviously still needed to be opened up, but it was just strange how our day started.  I was able to get his blanket into the washer before we left and miraculously it came totally clean!  We knew it was chancy to bring personal items to the hospital, but you've got to have some familiar things around!

We were taken to the OR area where we've had to leave him for his three open heart surgeries.  It was comforting when we found out his anesthesiologist was Dr. Harrison.  He had Eli for his very first surgery and his G-tube surgery.  Eli was given some medicine (Versed) in my arms which made him relax.  Then he was wheeled to the OR and Bryan and I were escorted to the surgical waiting area (we know the path pretty well by now and I'm not sure an escort was necessary!).  When we got the call that surgery was done we were told to go to the PICU because he was taken there so they could do some dressing changes.  While we waited, Sara came and talked to us.  Then Dr. Abraham came in. 

He said Eli did great and was recovering fine.  The infection was down to the bone.  He didn't think the pacer wires were involved so he did not remove Eli's pacemaker, but made it absolutely clear that it's something that could still happen.  He felt good about the "cleaning" he did.  Initially he was hoping to only have to make an incision about an inch long.  However, after getting in there and seeing what was happening, he had to make a much larger incision due to tunneling (not just one large "hole" but smaller tunnels leading off it).  Eli's incision is about 2 1/2-3 inches long (more than half the length of his surgical incision).  He was brought to the PICU to recover and to get a wound vac attached to him.  Overall, Dr. Abraham thought things went well but only time will tell.

In regards to his chest tube, he did not get one today.  The chest x-ray showed some fluid but it wasn't a large amount and they're hoping he can take care of it on his own.  They really want to avoid more tubes in the boy.  Dr. Harrison also worked on Eli's troublesome PICC line and he pulled it out one centimeter.  So far we've not had any problems with it & we're hoping that took care of it.

When we got to see him he was sleeping peacefully.  He had a large dressing covering most of his chest and we couldn't see anything.  The hospitalist was with him and we asked when we'd know if he was in the PICU or a few hours or if it would be a transfer.  She thought they'd probably keep him overnight, so I went back upstairs and started packing.  It was a little sad to leave our third floor room with a private mini-fridge and our own shower, but we know we'll be back in the area soon!

While I packed, Bryan stayed with Eli as he was waking up.  When I got back to the PICU room he was propped up in his crib drinking a bottle and eating a cookie (cookie courtesy of my friend Jennifer Lee who brought us treats from Paradise Bakery).  Bryan said Eli was asking for a "Blue Cookie."  At first Bryan thought it was the meds talking until he figured out Eli wanted a sugar cookie covered in M&Ms.  The boy knows what he means!  They're huge cookies and he ate almost a whole one. 

After he was comfortable and napping, Bryan and I went to lunch.  We needed to talk about Zachary.  I guess he had a rough time at bedtime last night.  He was crying and asked Mamaw Betty if he was in trouble for crying because he missed us.  Of course she told him he wasn't and tried to comfort him, but she didn't quite know what to tell him about when we'd all be together.  He loves his grandparents but he needs his parents.  We decided Bryan would go back to Washington and be there in time to take Z to his ball game tonight (he was 3 for 3 but told me he had five hits?).  They ate supper at Bobe's and Bryan will take him to school tomorrow.  Depending on how things are going they will come up here either Friday or Saturday.  Bryan will stay with Eli while Zachary and I spend the night at Aunt Ashley's.  We'll do something fun together (either three of us or four of us) before they come back to Washington.  Even though things are still busy with Eli, they're not bad enough that we need both of us here all the time.  We hate being apart and having to decide which parent goes with which child, but that's the point we're at now.  I know this time with Bryan will be good for Zachary I cannot wait to see him this weekend.  I'm also looking forward to spending the night with him :)  His snuggles can't be beaten! In order for Bryan to be back to Washington in time for Z's game, he had to leave before Eli's wound vac.  It was hard on him to leave us, but easy because he was going home to Zachary! 

At 11am Eli had to be NPO (nothing by mouth) again for his wound vac application.  When they told us he'd be sedated we thought that meant he'd be asleep again, but instead he was given Versed and morphine.  He was very groggy and out of it, but awake the whole time.  He cried but was easily soothed.  I held his hands and kissed his head a lot while the medicine took effect.  Then Dr. Abraham removed the dressing he'd placed in the OR.  Next he took out packing from the wound.  It was bleeding and he used lots of gauze pads to dry it up and assess the area.  Since I was still holding Eli's hands I had a great view into the wound.  This sounds gross and some of you may not like it but it was neat to see.  Not many people get to see in their child's chest.  I saw something silver and asked if that was one of the sternal wires (wire used to hold the breastbone back together after his surgery two weeks ago).  Dr. Abraham looked up with a smile and seemed surprised I was looking in.  When he was done I grabbed our camera and actually took a couple pictures.  Don't worry, I'm not posting them.  I took them for Bryan to see and to put them in a file for Eli to look at someday if he wants to.  The tissue looked very clean and healthy to me.  I was worried it would look infected and "drippy" (used that word in an effort to not gross some of you out with other words I could have used!)

After Dr. Abraham was done the wound vac team stepped up.  One lady put special tape along the edges of the open incision.  Then she measured and foam was cut to her measurements.  White foam that was moistened with something (didn't see that part) was tucked into the big open area.  Two layers of black foam were laid on top of that.  A clear dressing was placed over all of it.  Then she took scissors and cut a hole in the middle of the dressing.  Another piece of black foam with the vac attached to it was laid on top of the hole and a clear dressing placed over the whole thing.  The tube was attached to the machine and it was turned on.  The result was like watching an infomercial for those space saving storage bags.  The extra air was sucked out and it will keep constant suction on the wound.  The hose will drain any blood or drainage produced by the wound.  The dressing and foams will be changed tomorrow (Friday) and then probably every other day after that.  The idea is that it will remove any pus or drainage produced by the wound and promote quicker healing from within. 

As he gets used to them changing it, less and less sedation will be used.  They will judge Eli based on his response and proceed accordingly.  I want to get another picture tomorrow because I wasn't able to get one showing the wire I saw.  I don't know if I'll be able to, but I definitely want to try to add that to our collection.  After it was done I asked Sara & Dr. Abraham for a photo with Eli.  We've never done that before and it's important to us to document these two who are some of the most important people on his healthcare team.  I'll load those on another post.  Sometime I'd love to get a picture of Eli smiling with one or both of them, but that probably won't happen for a while!

Since then, he's been sleeping peacefully.  When he's awake enough to eat he's allowed a regular diet, but he's still too tired.  We gave him another dose of morphine an hour ago because it was obvious he was hurting a lot.  Who wouldn't?  A tube feeding was started for him.  Good nutrition is always important but its importance increases tenfold when it comes to wound healing.  Dietary will consult tomorrow to determine the most optimal formula for Eli and that will be given every night for at least a week.  Of course we'll encourage him to eat whenever he wants, but this will give him an added boost. 

Today went much better than we thought it could after how crappy yesterday was.  I don't mean to make light of how serious an infection could be, but I still feel that things could be worse.  Yes, we're looking at at least another week in the hospital, but at least he's able to be treated.  He's breathing and his heart is beating so we just need to keep everything in perspective.  I've also talked to Zachary tonight and it was easy to hear, even over the phone, the happiness in his voice.  He had a good time at the game, had a good time at supper, and his easy to please attitude is showing again.  

Thanks again for all the prayers and offers of help.  One of the bright spots yesterday was Bryan bringing some of the mail and packages people have sent for Eli.  Zachary has received a lot while at home and Bryan brought Eli's to us.  Eli wasn't interested in opening them, but he liked looking at the cards when we showed him.  Eli did enjoy some snacks that were in another package.  One friend in North Carolina had her students color pages and cards for Eli and sign their names.  That envelope was fun to open!  Thank you to anyone who has sent a card, care package, or note of encouragement to any of us.  The thought of you taking the time to do that warms our hearts! 

As always, remember to cherish Every Little Beat....

Day 14, Post Op Fontan (May 1)

Just another day in paradise....

Eli's incision has a "lump" that is red.  Sara & Dr. Abarbanell didn't like the way it looked so they were going to have Dr. Abraham look at it for possible drainage and irrigation.  After they left and before he got here, we had PT.  Eli walked quite a bit and got a wagon ride.  When it was over we came back in the room and were persuading him to use a bench to climb up onto the couch.  In the process of holding his oxygen tank, telemetry box, other monitors and helping him keep his balance, his chest tube got pulled out.  It didn't seem to hurt him but we had to move quickly to get it covered because it is an opening into his lung cavity and could possibly collapse his lung if not taken care of.  Sara was still on the floor and she was in the room in no time.  She got it covered and they'll do an xray in the morning to determine if he needs another one placed or if he can handle the fluid on his own. 

Later, Dr. Abraham came by to look at the incision.  He thinks it's infected in that area but doesn't think it's very deep.  He debated just doing it at bedside, but because it's in the area of the pacer wires he wants to take Eli to the OR in the morning so he can clean it out really well.  That way if it turns out to be deeper than he thinks it is, he can deal with it properly.  Also, the chest xray will be done prior to going to the OR so they'll know if they need to place a new chest tube or not. 

So Eli will not have anything to eat or drink after 11pm.  He's scheduled for the OR at 7am.  It should only take about 5 minutes but Dr. Abraham wants to be prepared in case he needs to do more.  If they place a chest tube it will be another 15 minutes or so.  Then he'll go to recovery and back up here to his room.  

In addition to those issues, his PICC line is being troublesome.  There are times when it won't flush at all and it varies from lumen to lumen (he has a double lumen).  We were worried that it was clotting off, but that would be a little surprising since he's only had it for a week.  Not unheard of, but a little surprising.  Throughout the day we've decided it's just positional.  That means the end of it where the fluid/medicine/flush would exit is next to the wall of a vessel or next to a valve that closes it off.  Nothing majorly wrong with that but a pain in the keister (yes, I looked up the correct spelling).  It could potentially be an issue when we have him home and are trying to administer his antibiotics.  We'll worry later. 

Sooooo, that's been our day.  That and the occasional low grade fever they are accounting to the infection along his incision.  We'll let you know in the morning how he's doing!  Sorry this post doesn't have much more info, but it's only 4:30 and it's been a long day.  We've been here for two weeks now and are about to hand our son over to be put to sleep for the fourth time.  I'm upset that his chest tube came out, upset that it came out on my watch, and sad that he just flat out doesn't feel well.  

Brighter news, Bryan's back at the hospital with us and Eli was glad to see his Daddy.  He even smiled at Bryan an couple times.  It was so precious to see that.  

Please pray for Eli as he has another procedure (or two!) in the morning!