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!

Days 12 & 13, Post Op Fontan (April 29 & 30)

Both days have been busy for Eli.  He's been in a very sour mood since surgery and doesn't smile much.  If he does, it's clearly by accident.  He cries as soon as anyone walks into the room.  The boy is done.  He's been through this before, he's too smart when it comes to the hospital routine and he's not in the mood for it.  So we were pleasantly surprised when he took a liking to his student nurse on Monday.  It was a tall guy named Josh who has a two year old son as well.  First of all, Eli prefers male nurses to the plethora of females who take care of him.  Secondly, Josh knew not to push too hard, but how to get the things done he needed to.  Thirdly (and maybe most importantly) he had pictures on his smartphone of his son and could talk to Eli about him. 

Whatever the reason that Eli was in a semi-tolerable mood Monday, we were happy.  Eli even requested a wagon ride in the morning.  As we made the circle around the hallways, we stopped at the big window and showed him the play area outside.  Yes, we're on the third floor, but there is a playground for patients who are allowed to use it, weather permitting.  Monday was a great day to be outside and Eli said yes when we asked him if he'd go out. 

We brought him back to the room for pants and shoes and took him out.  Josh accompanied us and brought a towel for the leftover rain puddles on some of the items.  Eli stood outside the wagon and started crying seconds into the stand. 

Crying because he had to stand

We asked him what he wanted to play on, thinking he'd point to the little Playskool slide.  But no, our son points to the huge climbing tower and wants to go up.  Remember, this is a child who hasn't stood more than a combined minute since surgery and in addition to not being able to pick him up under the arms, we also have to be careful of his chest tube, carry a telemetry box (heart monitor), and deal with his "portable" oxygen tank on wheels (portable my foot, the thing is half my size).  But, Daddy & Josh scoop him up along with his previously mentioned necessities and climb up a level.  He just wanted held and enjoyed feeling the breeze and sunshine.  I snapped a couple pics of them up there then Josh came down and took a picture of the three of us.

Hanging out on Peyton's Playground (that's not the name of it, just what came out as I typed!)

When we went back in Eli wanted to keep riding in the wagon.  We made a couple more circles and then took him back to bed.  He was a tired little monkey. 

The rest of the day was pretty uneventful.  We did a couple more wagon rides and he had a therapy session which he hated!  How dare this woman bring in a play mat and toys?!?!  She left the mat and a bench in the room.  The bench is to encourage him to sit on it and make it easier for him to bring himself to a standing position. 

Monday night he had a slight fever (100.3) but it was taken care of with a dose of Motrin.  I was concerned because he hasn't had much fever despite the staph infection.  When we talked to Dr. Belcher about it Tuesday morning, he wasn't too concerned.  He said it's common to have a higher temp in the early evening hours, he liked that one dose of Motrin lowered it, and that it wasn't that high to begin with.  He said he'll keep watching him and see if it continues and under what circumstances.  He's a very calm, laid back guy but also knows lots of details about Eli and we're comfortable with him.

Tuesday morning was a little rough for Eli.  Bryan left to come to Washington so he could hang out with Zachary and go to his ball game.  Eli seemed to know Daddy wasn't just going to the store and he was VERY out of sorts all morning.  We took four wagon rides today!  It was difficult for me at first because I wasn't used to navigating the wagon and the oxygen tank, but we're pros at it now.  Unless I have to open a door.  After the first wagon ride we sat on the floor and played with some toys on the play mat.  A dog came to visit (Eli was not a fan) then PT came in.  I told her everything Eli had done by then and he plainly told her he wanted bed.  She said that's fine but he had to walk there.  With some assistance and a lot of protests, he walked to a chair she had placed by his bed.  Then she helped him into the chair, to a standing position, and into bed.  He did a lot of it himself which just showed us he can but it takes more energy than he's willing to give.  After a brief nap he had lunch.  He's tired of being in bed so he tried the big chair. 

He wasn't sure at first but he ended up doing really well in the chair.  He ate a decent amount for lunch too.

After another wagon ride (#2 or #3?) he got a bath.  He REALLY needed one and to have his hair washed.  He screamed the whole time but the nurse and aide worked very quickly and he smelled so good when he was done. 

I wasn't much help because I was laughing at him and taking pictures.  

He snuggled in my arms on the couch for a while before going back to his freshly changed bed.  We took another wagon ride while waiting for supper to arrive.  He only ate 1/2 a dinner roll for supper but he was so tired he fell asleep on my lap.  With Bryan gone, I'm getting a lot more snuggle time!  Eli also enjoyed some candy from his nurse Steph.  There was a chocolate sale in the lobby today and she brought me some Peanut Butter Meltaways.  (I told you they take good care of us here!)  Eli saw me eat one and starting pointing while saying "Choc!"  He ate two by bedtime (he asked for more but mean Mommy thought that was enough!).  He ate 8 grapes before bed and is sleeping now.  Hopefully he's tired enough that he sleeps well tonight and feels rested in the morning.  He's been restless for a few nights now and needs some quality sleep.  He had a low fever again tonight about the same time, but we'll just see what Dr. Belcher says in the morning. 

Zachary and Bryan had lunch together today and did some errands around town.  Z was excited because he got two suckers at the bank!  His game went well and he had three hits :)  They were enjoying frozen pizza for supper and going to sleep upstairs in the big bed.  Bryan will take Zachary to school in the morning and head back up to Indy.  It was hard on him to leave Eli and I know it will be hard on him to leave Z.  It's tough being torn between our two perfect boys ;)

My friend Katie updated her blog today about Caleb.  May 1 will be the six month anniversary of their admission to Riley and the start of their wait on the transplant list.  They are a very positive and faithful family, but that's a lot to ask of anyone!  They have seen three or four children who were admitted after Caleb receive new hearts while they're still praying for their call.  Of course they're happy for those families, but it's hard on them and isn't getting any easier.  Please include them in your prayers.  Just when I'm feeling weary because we've been here for 15 days and counting, I think of their endurance and realize I have nothing to complain about.  Pray for them to be energized with hope and for the call about Caleb's new heart to come soon.  Luckily, he's been pretty stable for a while now so pray for that to continue. 

Thank you all for your prayers for us and our friends.  We see that the power of prayer is incredible and inspiring.

Day 11, Post Op Fontan (April 28)

Saturday night was a little rough for Eli.  He was hurting a lot and we gave him a dose of morphine around 9pm.  Everything he did seemed to make him hurt and his oxygen sats were steadily lower than what they had been.  After the medicine took effect he was pleasant to be around!  His nurse even stayed in the room for a long time because he was being so funny.  He slept pretty well, but his oxygen saturation was lower than it had been (although it was higher than when he was in pain).  His monitor is set to alarm whenever his sats reach 91% or lower.  They were going off all night long. 

As Sunday progressed, he was fussy and cranky.  Some of it is just the fact that he's done with being here.  Some of it is the fact that he hurts.  His chest tube only drained about 70cc Saturday (just over 2 ounces), but Sunday he beat that on day shift alone.  Dr. Kumar (cardiologist who was rounding this weekend) said we could think about taking the chest tube out when he had a couple consistent days of less than 40cc.  We're not there yet.  I'm sure it hurts Eli to have that fluid pushing on his lungs. 

A look at Eli's chest tube.  I can't remember if I posted this before.

In happier news, we had several visitors today.  Bryan's Great Aunt Jean and Great Uncle Larry along with their grandson Max came to visit.  Later in the day, Bryan's parents and sister brought Zachary to see us!  As they were getting ready to leave, my sister came.  It was nice to see non-medical adults again.  It was especially nice to hold Zachary!  He looked like he's grown in the past week!  He was a little sad to leave, but he did very well and not too many tears. 

While he was here, he stayed very busy.  He showed us a new game Aunt Judy bought him, we took Eli for a wagon ride (Zachary pulled most of the two laps while Bryan pulled the oxygen tank), the boys each had a popsicle from the nurses station, and Zachary got to help me unload our clothes from the dryer. 

The Veale men

Popsicles from the nurses...Zachary was happy, Eli not so much.

Eli was laboring and fussy after his wagon ride (second of the day) and his nurse didn't like his color too well.  We gave him another dose of morphine which again did the trick for him.  The night shift nurse turned his oxygen up from 0.25 liters to 0.5.  It seems to be keeping him more steadily in the low to mid 90s barring any outbursts from Eli.  Poor lil guy just can't get comfortable in bed anymore.  He'll ask to sit up and then he'll cry and want to move.  We'll move his position then he'll lay back down and fuss a little more.  I can't imagine how he feels.  Even more frustrating is that he can't really tell us when & where it hurts.  We have to guess and I'm always afraid we're wrong. 

Holding Daddy's hand

He needed some comic relief after the morphine started helping him.

Other than seeing Zachary and our other visitors, our highlight of the weekend was getting a refrigerator in our room.  Yesterday morning I made a comment to our nurse that I felt like we were wasting milk and juice because Eli couldn't drink a whole carton at a time and it would sit out too long for him to be able to take it.  She said she'd be right back and within a few minutes came pushing a mini-fridge into our room!  Later she came with several juices and cartons of milk to stock us up for a while :)  They're making it harder and harder for us to leave here... but leave we will when Eli is ready!

Full of goodies!

Here's a quick look at what our room looks like.  It's a little messy given we had just entertained a total of eight other people throughout the day and done some laundry. 

Sink, nurse's work area, computer, IV pumps & feeding pump, crib.

The desk and chair where we post updates & blogs!  Of course that's baseball on tv....every evening it's always baseball and/or basketball!

Our couch (pulls out into a bed.  Comfort level?  Not too shabby!)  Our closet, but it's blocked by all the junk on the floor we couldn't fit into the closet.  Tomorrow is definitely a "pack some crap out to the van" day.

Our bathroom, complete with our very own shower stall.  It's great having our own bathroom, but we'd love it if the mirror was a little higher.  It cuts us both off at chest level.  Granted we're in a children's hospital and most kids aren't as tall as we are, but aren't there a lot of parents who stay with their kids?  And aren't a lot of them taller than 5'2"?  And couldn't you have a pediatric patient who's in their late teens and taller than the mirror?  I do realize that if this is my complaint about the hospital, then we're in good hands....well, the bathroom mirrors and wishing they had Coke instead of Pepsi!

We also opened up some of the mail that has been sent for the boys.  This is a photo of things sent for Eli, Zachary's are back in Washington. 

Thank you to everyone who has mailed cards for our boys!  Some even included Mommy & Daddy!  It's so nice to see the messages people are including with their cards.  Thank you so much for the encouragement and support!

 
Specific Prayer Requests:

- that Eli continues to get stronger and experience less pain
- that his chest tube can come out soon (but obviously not until he's ready!)
- for Zachary to continue to be stronger than a five year old should have to be as he is shuffled among loving family members while Bryan and I are with Eli
- for things to be going well enough with Eli that Bryan can go back to Washington on Tuesday for Zachary's ball game & to spend the night with him
- for a fellow heart baby in Tennessee (Braxtyn) who is having a really rough time right now and was flown to Vanderbilt this evening because of some very serious complications.  His parents have become very vocal CHD advocates
- for all the doctors, nurses, and therapists involved in Eli's case, that they continue to provide excellent care and see all the pieces of the puzzle that is Eli

That's not asking for much, is it?  ;)  Thanks again for reading and caring about Every Little Beat...