Going Home - Thursday

Jace's heart rate and oxygen sats. were okay over night.  He was pretty restless from about 3:00 - 4:00.  He just couldn't seem to get settled.  I crawled up in the bed with him and then it didn't take him too long to go back to sleep.  When they came in to do his labs, his IV wouldn't draw so they had to stick him.  Thankfully, this was the last time he would have to be stuck.

During rounds, they said his chest x-ray looked great and they thought he was ready to be discharged.  That was wonderful news to us.  We asked Jace if he was ready to go home and he said "Naw".  I think he has really liked all the attention he has had from the nurses, except for the vitals and sticks.  He loved them as long as they didn't have on gloves.  When they would get a pair of gloves out, he would start to get upset.  He knew something bad was getting ready to happen. 



Resting up for the ride home.


We loaded up our car, said our good-byes to the nurses, and put Jace in a wagon to leave.  We were finally on our way home!



Getting ready to leave.





Leaving 6-C





Waiting on the elevator.





Almost to the car





On our way home!!!!


We arrived home about 2:30.  I expected Jace to be tired and want to lie down and rest for awhile.  He was so wobbly yesterday we were worried if he would be able to walk.  Boy was I wrong!  It only took him a few minutes after seeing his toys, to get down and start playing.  His legs were still wobbly at first, but he walked a lot better than I was expecting.  We have had to put a few of his things up already because he was trying to climb and carry them around.  I am afraid we are going to have a hard time trying to limit his activities for the next few weeks.  We see the Pediatrician in the morning.  I am anxious to see what she has to say about him.

As far as his recovery goes, we do have some restrictions.  We can't pick him up under his arms for 6 weeks.  Since his sternum was broken for surgery, it needs time to heal.  We also have to watch that he doesn't try to pull up on things.  We have to take extra precautions with his incision.  It has to be cleaned a certain way and we have to try and keep his hands off of it.  It has a dermabond coating over it now.  After a few days, it will begin to crack and peel off.  When it does, it itches, but they don't want him scratching it.  I'm not sure how that is going to go though.  They don't want his incision submerged in water, so that means no pool for him for 6 weeks.  The biggest thing to his recovery is the hardest.  We are basically going on "house arrest" as we refer to it.  We have to keep Jace in and away from people as much as possible.  The only place they want us to take him to is the doctor for the next few weeks.  They also told us to limit our visitors at home as much as possible.  They told us if he gets a fever or catches something, it will put him back in the hospital.  They will have no way of knowing if it is a virus or something wrong with his heart.  I have a feeling we will be going through a lot of sanitizer the next few weeks.  I am thankful it is pretty weather now, so we can at least take him outside in the stroller some. 

Thanks again everyone for all the prayers and calls.  He has done better than we could have ever hoped for and I know it is all because of prayer!!  

Day 8 - Wednesday

Last night was a pretty sleepless night for Jamie and me.  About 10:30, I noticed that Jace's heart rate had dropped to the high 70s.  I called the nurse to come in and check on him.  She said everything seemed okay, but she would call the doctor.  The doctor checked his past monitor readings and told her that was a normal rate for his age and after having the Fontan.  His monitor was set to go off if it dropped below 65.  It still worried me seeing it this low, so I watched his monitor most of the night. 

About 2:30, his monitor went off because his rate dropped to 64.  I was so scared because I had never seen his heart rate that low.  I asked the nurse to have the doctor come in and check on him. When the doctor examined him, she said everything was fine.  His pulse was strong, his rhythm was fine, and she thought he was just in a deep sleep.  She said the monitor would show if he was in "heart block" and it was reading fine.  This made me feel better, but I still didn't rest much for watching his monitor. 

Around 6:00, his heart rate finally came up some.  The nurse was in his room and his monitor went off for low oxygen sats.  She immediately started preparing to put the oxygen back on him.  In a few minutes, it came back up, so she didn't put the oxygen back on him.  I was glad it did because that would mean staying in the hospital longer.

Before rounds were made a couple nurses came by and said the word was we were probably going home today.  This made me very nervous, because I actually wanted to stay another day to make sure his heart rate was okay.  If we didn't live so far away, I probably wouldn't have worried about it so much.  During rounds, they decided to have us stay today so they could monitor his rate and oxygen one more day.  They also wanted to change his medicine to his home dosage today to see how he would do.  So the plan is that if everything goes fine today and tonight, we will be discharged after rounds in the morning.

The Nashville Zoo was here this afternoon.  We took Jace down to the stage area to see what animals they had with them.  They brought a small rabbit and one that looked like it weighed about 50 pounds.  Jace enjoyed them, but I think he liked just watching all the people who were there.  After that, we took him outside for awhile.  He got out of the wagon and stood beside it for awhile.  His legs were still wobbly so he had to hold on to the wagon.  It is going to take him some time to be able to walk on his own again. 

I had asked the nurse if she would help me give Jace a bath.  When we got back to his room, she had everything ready for his bath.  He got excited when we told him he was getting a bath and started pointing to the bathroom.  He wasn't too thrilled when he found out we were doing it on his bed.  We scrubbed him down good and the nurse showed me how to clean his incision.  We scrubbed and scrubbed, but he still has some sticky stuff left from all the tape he has had on him.  It will just take a few baths to get it all off.  As we were finishing his bath, a lady from surgery came up with Jace a new g-tube.  She had checked it earlier this morning and said the size was still okay, but she would put a new one in for him.  He didn't like being held down, but she was quick so it didn't take long.  While the nurses changed his bed, I got to hold him.  It was time for his feed, so it wasn't long and he was asleep.

He spent most of the evening playing with toys in his bed.  Nolan and Judy went to Walmart and brought him back some new things to play with.  He is definitely ready to go home.  I packed most of our things up, so I sure hope we do get to go home in the morning.  It is almost 9:30 and he is settled and watching tv.  Hopefully this will be our last night here.

Finally found a way to keep him in the bed!!

Day 7 - Tuesday

Jace rested well last night, at least as well as you can rest in a hospital. He feels much better this morning.  His eyes look better and his color is much better than yesterday.  We thought he felt well enough to get up for awhile, so Jamie held him during his 8:00 feed.  This was the 1st time he has held him since we have been here.

Afterward, Taylor wanted to go to the gift shop.  They returned with Jace a Scooby Doo balloon.  He loves balloons and Scooby Doo, so he was so excited.

During rounds, they discussed Jace needing oxygen.  Right now that is the only thing keeping him here.  Dr. Moore thought it would be best to just remove it all together and see what happens instead of gradually trying to wean him.  We had asked the nurse about taking Jace out for awhile in a wagon.  She wanted us to go ahead and do it, so they could take him off the oxygen when we got back. 

He loved getting out of bed.  We took him to the outdoor play area on our floor.  We wanted to see if he could walk by himself.  He stood up for a minute or two, but was pretty wobbly.  He wanted to get back in the wagon.  We took him downstairs and walked around the hospital.  We stayed out for about an hour and then it was time for his feed. 

When we got back to the room, they unhooked his oxygen.  His oxygen levels stayed up right where they wanted them to.  Since he was doing so well, Jamie and I decided to go somewhere outside of the hospital and eat.  Nolan, Judy, and Taylor had already had lunch, so they stayed with Jace.

When we returned, they were in Jace's room doing his echo.  They gave him some morphine before they started to help relax him.  Judy said he laid still for quite awhile, but it took so long that he was starting to get squirmy.  The guy doing his echo couldn't get a good picture of his neck area so he called in another guy to help.  They did everything they could to entertain Jace so they could get good pictures. They did everything they could to entertain Jace so they could get good pictures.  They needed Jace to turn his head a certain way, so one of the guys pretended to have Bella, his dog, in the room.  He barked and pretended to talk to the dog.  I don't know who was more entertained, Jace or us.  We laughed until we couldn't.  I grabbed my camera and tried to get part of it on video.  I didn't think he would want me videoing him, so I just pointed it toward the floor.  It may have been one of those times you just had to be there to realize how funny it was, but I wanted Jace to hear it when he grows up. 

Day 6 - Monday

Jace hasn't felt as well today.  His color is not as good this morning.  He has dark circles under his eyes and they look sunken back in his head.  He looks like he is beginning to get dehydrated.

During rounds this morning, they decided to stop his miralax and one of the diuretics to see if that would help.  They also said they would check on his ear since he acts like it is hurting.  The cardiologist said he didn't think that the chest tubes were quite ready to come out yet.

The resident doctor came in to check on Jace's ear.  She said it looked red so she asked another one of the doctors to look at it.  She said it has fluid on it, but it doesn't look like an infection.  The fluid is causing pressure and that is what is making him uncomfortable.  The pain medicine should help with it.  They are going to keep an eye on it to make sure it doesn't go into an infection.

We started him back on bolus feeds today.  He has had some gagging at times, but overall has done well with it.  He drank a lot more water today and that seems to have helped.  His color is looking better and his eyes seem better.

At 3:00, the nurse came in with morphine.  She said they were getting ready to pull one of the chest tubes. Kelly, with the surgery team, came in to look at him.  She decided to first pull the pacer wires and monitor him for an hour.  If his blood pressure does okay and he doesn't have more drainage, then she will take them out.

At 4:30, a charge nurse did a CPR class for the parents on our floor.  We did this before we left after the 1st surgery.  Since it has been 2 years and Jace is much bigger now, we thought it might be a good idea for us to go.  I feel better knowing what to do, but I sure hope I never have to use it.

About 6:00 they came in and gave Jace some morphine because they were about ready to pull his tubes.  Jamie and I stayed in the room to help hold him.  He did much better than I thought he would.  I think he did much better than I would have done.  I couldn't believe how long that tube was when it came out.  I told Kelly that I thought Dr. Bichell must have had it wrapped around Jace several times.  He should start feeling much better now that the tubes are out.  They will watch him for a day or two to make sure he is not retaining fluid and if not then we should get to go home.

No more tubes!!!!!

Shew!! I need a drink after that ordeal!



Getting weighed tonight was much easier without those tubes.

  

Day 5 - Sunday

Jace felt so good yesterday that I think he may have over done it a little.  He didn't rest well at all.  He would sleep for a few minutes at a time and then sit up in bed.  This went on from midnight until about 6:00.  I told him he looked like a jack-in-a-box.  The nurse was hoping that the blood they drew lastnight would work for labs.  They didn't, so Jace had to be stuck for more blood this morning.  I think he may be getting use to it now because he handled it much better.  We had a male care partner in the room at the time and I told him I thought Jace was trying to act like a big boy in front of him.

During rounds they said his chest x-ray looked better than yesterday.  Each day it seems to be improving.  They have stopped the tordal and scheduled tylenol every 6 hours.  He can have oxycodone as needed.  As far as the feeding goes, we are going to try a bolus feed at 12:00 with a smaller amount than normal and extend it over 2 hours.    One of Jace's drain tubes is ready to come out, but the other one is not.  They decided to wait until both of them could come out at the same time.  The doctor thinks they might be ready to come out by tomorrow.  Right now it is just a waiting game.  They have had so much trouble with Jace's IVs that they discussed putting in a PICC line.  This is more of an ordeal than just getting a new IV.  They have an actual team who does them and it has to be done in a sterile environment.  The good thing would be that they would not have to stick him anymore for the labs they need. 

The afternoon was pretty quiet and went smoothly.  Since Jace didn't sleep much lastnight, he napped on and off most of the afternoon.  When he was awake, he played some, but you could tell he was tired.  Jamie's theory at home is when Jace naps, then he naps.  So he spent most of his Father's Day afternoon napping.  I guess that was a pretty good present.  For Jace's 1st surgery, we were here on Father's Day and now for this one too.  So two out of the last three years, Jamie has spent Father's Day here.  Hopefully this will be the last time he will ever have to do that. 

3 generations

Jace's oxygen sats kept dropping at times down in the high 70s so they put the oxygen back on him.  They want them to be atleast 85.  The plan is to leave him on it for awhile and then start to wean him off.  He is on a very low amount.  They took him off oxygen the day after surgery.  It may have been a little too soon for him.  They don't seem too concerned with putting it back on him.  I think it is pretty common for kids to need oxygen for several days after the surgery.

Jace slept better tonight than he did lastnight.  I think he was so tired.  He only woke up a couple of times outside of when a nurse came in the room.  They are in alot during the night, but he was able to sleep an hour or two at a time.  Hopefully it won't be long until we are all at home and sleeping in our own beds.

A Long Road, But Worth Every Minute of It...... From a Mother's Perspective

My mom told me I should write a book, but this is probably as close as I will get.  I've had some quiet time today to think about some things.  During Jace's journey, we have had the pleasure of meeting two other families with boys who have the same heart condition as Jace who are close to the same age.  Brad and Catherine, Cain's parents, are from Nashville and Alan and Anne, Brandon's parents, are from Frankfort.  Cain has recently had his Fontan surgery and Brandon is around 15 months old and will have his Fontan sometime in the near future. We are able to keep in touch through phone calls, texts, facebook, and blogs.  Even though we may not see them often, it doesn't take long to form friendships and special bonds with other "heart parents."  So today I have been thinking a lot about our boys' heart journeys.

While visiting with us lastnight, Catherine mentioned that she saw a doctor in the hallway who had  encouraged "compassionate care" with them as an option for Cain.  When you find out your child has a heart condition such as our boys have, you do have options.  One of those options is compassionate care.  That basically means that when your child is born you seek no medical treatment for them.  You simply leave the hospital, take your child home with you, comfort him as best as you can, and wait for him to die.  While this option is unthinkable to me, I realize there are parents who make this difficult decision rather than have their child suffer through the long road to recovery. 

Another option you have, the one we all chose, is a series of three operations.  The first is the Norwood which is performed usually a few days after birth.  The second is the Glenn which is around 6 months.  The third and final surgery is the Fontan which is done around 2 to 3 years of age.  Each surgery is done based on when the child is ready.  Some happen sooner if complications arise and others may happen later if the child is not ready.  This series of surgeries basically restructures the heart to work like it is a complete heart, rather than only half of one.  It is a long road to get to this point with many possible risks and complications.  Choosing this option does not always guarantee that your child will be okay.  There are many children who never make it to the completion of all three surgeries.  I've not done a lot of research on survival statistics.  It didn't take me long to know that Jace's life was in God's hands and that was all that mattered, not some doctor telling me what his chances were.  It's a good thing too because the first doctor Jamie talked to when he arrived at the hospital didn't give Jace much hope of living.  If she could only see him now!

This afternoon I came across a comment that Alan had made after our surgery day post:

We have been thinking about you guys all day. I'm glad to hear it is going well. We were eating dinner when I looked up and saw Anne crying reading your update on her phone and well then I had to read it and I be danged if I didn't have happy tears too. Best of wishes and prayers to all of you, it is a long road.


Alan and Anne

After reading this comment, I began to think about his last statement....it is a long road.  It has been a long road for us looking back.  It has taken us 28 months to get where we are today.  Not every one of those days have been easy either.  As well as Jace has done, he has still had his ups and downs.  He had a stroke during his first surgery and seizures a few days after.  He has the g-tube which has been a struggle at times to get his feeds where he can tolerate them.  He had a blood clot after the first surgery that required a port with a needle be stuck into his leg and left so shots could be given twice a day without sticking him each time.  After the 2nd surgery he developed an infection that resulted in a 3 week hospital stay and sent home on IV antibiotics.  So his road has not always been the smoothest, but God has always been right there with us at every stage of his journey. 

As far as our road goes, Jamie, Taylor, and I, along with our parents, have had to make many sacrifices.  Being on house arrest for him, as we refer to it, means not being able to go and do everything we might like to.  As heart parents, there have been times that are almost unbearable.  No parent should ever have to kiss their child good-bye before surgery and walk away knowing that might be the last time you see your child like that.  Or have to sit in a waiting room while your child is in surgery waiting for the phone to ring to hear your child is okay and then wait to hear from the surgeon that everything went well.  Without God and a strong family support, I don't know how you would make it through without literally going crazy.  Despite the worry, there has been a sweet peace that has let me know that God is in control of Jace's outcome.  As his sister, Taylor has not always been able to have friends over at times because we couldn't take the chance of Jace getting sick.  Our parents have sacrificed their time to keep him at our house since he has not been allowed to be in daycare.  They have been with us during every hospital stay to support us and help with Taylor.  We couldn't have done it without them. Jamie and I have been blessed with jobs that have allowed us to be with Jace during each hospital stay and also great health insurance to cover the medical care cost which is getting close to the million dollar mark if not there already. 

No matter what the sacrifices or costs have been during this long road to recovery, it has been worth every minute of it!!  When thinking about the compassionate care option today, I began to think about all the good things we would have missed out on had we chosen that option such as:
*Jace's bright eyes and smile we see each day
*his giggles when Taylor does something funny
*the way he says daddy, mommy, sissy, pa, nanny, poppy, gran all in one breath and the funny way he says Shelby and Scooby Doo
*the snuggling time during feeds and at night when he gets so close to Jamie or I that we can't turn over
*all the cute little tricks that he does daily to entertain us like his mean look, dancing with his head, showing us how pa snores, the difference in how much he loves pa and nanny that of course pa taught him, and my two favorites, where my sugar is (he points to his bottom) and when you ask him what mommy does he moves his hand like he's talking (his daddy taught him that one).
The list could go on and on with all the sweet things he does and even the little mischievous things he does that we can't help but love too. 

As long and difficult as this road has been at times, I wouldn't change a thing. It has been worth every minute of it to be where we are today.  I can't help but to think about lyrics from a Garth Brooks song....I could have missed the pain, but I'd of had to miss the dance.

With so many bumps in the road behind us, I look forward to the road ahead of us along Jace's journey.


     

Day 4 - Saturday

Yesterday was such a rough day for Jace.  Today has been a much better day.  He has seemed more like himself and felt like sitting up in the bed and playing. 

Early morning hours were basically a repeat of yesterday morning with the usual nurse visits.  At 12:00 they took his vitals.  At 2:00 he was given scheduled medicine.  At 4:00 more medicine and the nurse drew blood for the morning labs.  They are monitoring his potassium levels and looking for increases in enzymes in his kidneys from one of the pain medicines.  At 5:00 he got his daily chest x-ray.  They are monitoring his fluid levels and making sure his lungs are clear.  From 6:00 - 8:00 he had his usual morning visits from several doctors on the team who are managing his care.  Dr. Christian, who is another surgeon who works with Dr. Bichell, came by to check on him.  She thought he was doing well and seemed pleased with his progress. 

At 8:00 the nurse brought in potassium for him.  His levels are low due to all the fluids he is losing so they are giving him more.  Since he has the g-tube, she was able to just put the potassium in his milk.  This way is much easier on him.  If they put it through the IV it burns and has to go in slowly.  If they give it orally, it tastes so bad that I'm sure we would have a hard time getting it down him.  His g-tube has turned out to be a blessing after all.  It is making it much easier to get all his medications in him.  It seems like they are in here alot giving him meds, so I can't imagine how hard it would have been if they were given orally.

Around 10:00 they made morning rounds to discuss Jace's progress.  They are continuing potassium and increasing his diuretics to help dry up his drain tubes.  Dr. Fish said they could possibly come out tomorrow or Monday.  They decided to leave him on a continuous feed of 1 ounce per hour since he had so much trouble tolerating the feeds yesterday.  In the morning, the plan is to stop it at 8:00 and do a bolus feeding at his normal time of 12:00.

After rounds, while I was in the shower, Taylor was able to get some cute pictures of him playing.  He felt so much better that he was able to sit up in bed and play.  Our nurse brought in bubbles, so he had fun trying to blow them.

She was also able to get one of him playing doctor and listening to his rabbit's heart.  We brought his doctor kit from home for him to play with.  When they come in to take his blood pressure or temperature, then he can pretend to take ours so he has enjoyed that.

We are trying to get him to eat something by mouth.  He hasn't felt like eating too much though.  His pa went to the store and got him and Taylor some suckers.  This seemed to excite both of them.

Later on, Jamie and Taylor made their daily visit for Taylor to Ben and Jerry's on the 2nd floor.  Jamie got him a cone, and Jace just had to have a bite.  He didn't eat much, but he sure liked holding that cone all by himself.

The highlight of our day came early evening.  Cain, Jace's heart buddy, along with his parents and sister, Brad, Catherine, and Callie came for a visit.  We told Jace they were coming, but I would give anything to have his reaction on video when they walked through the door.  His face lit up and he grinned from ear to ear.  He was also excited to see the gift bag Catherine had in her hand.  They brought Jace some of the things that are Cain's favorite things to play with.  He loved the Bob the Builder hat, police car, ball, fire truck, and Thomas the Train book. 

We thought it would be a good time to get Jace out of the bed for a wagon ride outside.  Our nurse, Margaret, came in and helped us get Jace into the wagon.  This is not an easy task with the drain tubes still in.

He loved getting out of the bed and going for a ride around the hospital.  We had planned to go out to the outside play area on our floor, but it was locked.  So instead we just walked down to the 2nd floor out on the breezeway. 

Jace loved sitting with Callie and watching Cain run around and play.  Cain had his Fontan a few weeks ago and he had to sit and watch Jace run around when we visited, so that was his chance for payback.  Cain was so busy running around that the only picture I managed to get of him was when Brad had him trapped between his legs.  It was so good to see him up and running around.  It is so nice to have another family to talk to that has been where we are.  I look forward to getting the boys together in a couple of months when they are both fully recovered for a play day somewhere other than the hospital.

When we got back upstairs and got Jace out of the wagon and settled, his nurse came in to give him some medicine through his IV.  He had a fit. She said the IV had probably gone bad.  They called in a charge nurse from the 5th floor to do a new IV.  He was able to get in the new IV, but it would not draw.  The nurse said that since they would have to stick him in the morning for labs, they would go ahead and do it then since he was already upset.  By the time they finished it was time for his 10:00 meds.  After that, he was so drained from the IV that he went sound asleep.  Hopefully in a few more days, he will get to go home and be able to sleep through the night without being disturbed.     

Day 3

The best way I can think of to describe today is eventful. 

12:30   Jace woke up startled and moving around.  It didn't take too long to calm him back down.  He slept soundly until about 4:00 so I was able to get about 3 hours of sleep too. 

4:30     He woke up again crying and trying to get up.  As he was settling back down, they came to do a chest x-ray.  They do these so early so the results will be available for the doctors when they make their morning rounds.

6:00      The nurse needed to draw blood from his IV for some tests the doctors had requested.  Much to my fear, his line would not draw.  Since all his other lines had been removed, this meant that they would have to stick his arm.  Jace has always had trouble having blood drawn.  His veins are so hard for them to find that he usually has to be stuck more than once.  On a couple of occasions, they have had to draw from a vein in his head and he looks so pitiful when they do that.  Luckily, the lady we had was wonderful.  She spent lots of time making sure she could find the vein before she stuck him.  When she stuck him his vein rolled on her.  She was able to keep moving the needle until she found it so he was only stuck once.  He cried, but he did so much better than I had expected him to do. 

8:00     Jamie and Taylor arrived and Jace was so glad to see them.  They wanted to get Jace back on the same feeding schedule he has at home.  They decided to try a bolus feed and give him 85 mls (almost 3 ounces) over an hour period.  This is half the amount he gets in a normal feeding.  Before they could get one ounce in him, he began gagging and wretching.  He did not tolerate it well at all so they just stopped the feed and decided to try again at 12:00. 

8:00 - 10:00    This was a pretty rough couple of hours for him.  He would be settled and then all the sudden start crying and rolling around in the bed.  He even managed to stand up somehow a couple of times.  They gave him some morphine and he finally settled down and went to sleep.

10:30    During rounds, they discussed that Jace had not had a bowel movement since before surgery.  I think most of the pain he was having was from gas.  They asked the nurse to give him a suppository and then added Colace to his medicine list.  When the nurse got ready to give him the suppository I told him that I was going to change his diaper.  Jamie spoke up and said that he had just changed his diaper.  I shook my head at him and told Jace that we were going to check to see if it needed changing again.  While I had him distracted, the nurse was able to give him the suppository.  The nurse told Jace that he didn't need changing after all.  Jamie leaned over his bed and whispered to Jace that we had lied to him.  The nurse and I both laughed.

11:00    They told us yesterday that Jace was ready to go to a regular room as soon as one was available on the sixth floor.  6c is the floor where the cardiac patients go to after surgery.  Sadly, we know this floor all too well, but we love the nurses and wonderful care Jace gets there.  Our nurse told us that she just got word that Jace's room was ready and he would be moving up soon.  This was so exciting for us because it means we are just that much closer to going home.

On the elevator going up to the 6th floor.

The board in Jace's room.  Tara, one of the receptionists, made friends with Taylor during our stays.  She is from Alabama and would tease Taylor and try to get her to root for Alabama.  That is where the roll tide comment comes from.  We knew who had written it as soon as we saw that.

12:00   We arrived at 6c.  Jace was greeted and we were hugged by several nurses who remembered us from our previous stays.  When we got to him room I don't know what happened.  I don't know if it was pain or he was scared because there were so many nurses in his room.  He began to cry, kick, roll around, and literally stood up in the middle of the bed.  The nurse couldn't believe he was moving around that much so soon after surgery.  It took Jamie and I both to get him settled back down.  Once he was calm, they were able to get his vitals.  They needed to change his bed so that meant some snuggling time with Mommy.  By 12:45 they were ready to try another feed.  Again he did not tolerate it well so we had several spells of gagging and wretching.  This wore him out so much that he took a nap.

1:30 Since he was sleeping, the nurse decided it would be a good time to split his drain tubes.  He has two chest tubes but they both led into one big drain tube.  They said if they split them into two tubes then they would be able to tell which tube was draining more.  When they finished, Jace slept for about another hour.  When he started having more pain, the nurse said we should try and vent him.  He has an extension on his feeding tube to connect the milk bag to his feeding tube.  To vent him, we take a large syringe and hook it to the extension.  This allows any air in his stomach to escape.  We spent a lot of the afternoon doing this.  Whenever we would see that he was getting restless, we would vent him and it seemed to really help with the pain. 

One of many venting episodes during the day.

4:00  Jace hadn't drank much today so we tried getting  him to drink something.  We tried several different things.  Of all the things, he wanted Ski.  He drank about an ounce of it and it didn't take long to kick in.  We were able to vent him again and get lots of gas off then.  I hope that wasn't enough Ski for him to acquire the taste for it because he is active enough without it.  I can't imagine how he would be if he drank very much of it.  He was then able to settle down again and rest for awhile.  The nurse said the doctor wants to wean him from the oxycodone except when needed and get him tordal on schedule to help with the constipation.

Taylor climbed into bed with Jace to help settle him down and watch Scooby Doo with him.  She is such a great big sister!

5:30  Jace's surgeon, Dr. Bichell, stopped by to check on him.  He thought he was doing great.  He actually thought that it had been 3 or 4 days post op for him instead of just two.  That didn't surprise me that he would be confused on the number of days considering that I had seen him pass by Jace's room lastnight at 10:30 in his surgery attire.  He said in that case then Jace was ahead of schedule so far for recovery.   He told us that Jace had done so well through all of his surgeries that he should be their poster child.  I know the reason he has done so well is because of all the many prayers that have been said for him.

6:30   The nurse came in to give Jace some medicine through his IV.  When she started with the saline flush, she realized that his IV was no longer working and that it would have to be replaced.  So once again today he would have to be stuck and hopefully find a vein.  She warned us before she started that she always got shaky when she did this, but she could usually get it in.  Since she was the charge nurse (the one over the floor for the day), I felt more comfortable with her trying.  Sure enough she was right.  She found the vein, but by the way she was shaking you would have thought it was her first time doing it.  I was sure glad she told us ahead of time or I probably couldn't have stood it. Jamie and I couldn't help but laugh at her.  She said she had always been that way.  I told her it made me nervous just watching her shake.  Luckily, it turned out great and the IV is working just fine.

7:30    So I mentioned earlier that today has been an eventful day.  Other than getting to move up to 6c, the biggest event for us was that Jace finally pooped!!  Yes, we laughed too just like I'm sure you are laughing now at reading that.  I guess that is just part of parenting when you get excited over something like poop because you know it is going to make your child feel better.  After the day Jace has had with pain, it was a welcomed sight!  After that, he has been able to sleep and get some much needed rest.  It is almost 11:00 now and he has only had one other pain spell and that also resulted in more poop.  Hopefully he will be able to sleep for the rest of the night.

On a final note.....Our room is close to the helicopter landing pad so you can hear each time one lands.  As I have typed this I have heard one fly in about three different times.  That sound still sends chills up my back.  That sound means that there are families somewhere whose lives have been turned upside down just like ours was two short years ago.  So as I say my prayers tonight I will pray for those families and also thank God for how far Jace has come since his flight here.  What started out as little hope for his future from some doctors has now become great hopes and expectations of what God has in store for him!!

Day 2

After the breathing tube came out, from 12:30 until 3:30 was a pretty long time.  We thought Jace was in pain, but soon discovered that he was thirsty after having the tube removed.  The doctor wouldn't okay anything to drink until 3:30 because of the risk of aspirating.  So every 30 minutes, he would wake up fussy wanting something to drink. The nurse put some water on a sponge and let him have some that way and that seemed to help.  I think we were all glad for 3:30 to arrive.  Between 3:30 and 6:00, he drank 11 ounces of water by mouth.  This is great for Jace since he usually doesn't drink more than an ounce or two at a time.  We are hoping that when we get home we can start weaning him from the feeding tube.

At 6:30 they decided to move us to another room on this floor.  When you are on this floor you usually have your own nurse until you are well enough that you can be paired with another patient.  This meant that Jace was improving enough that he could share his nurse with someone else.  Once he was settled in, they decided to put the pacemaker on a backup mode and set it at 80.  This would mean that he would pace his heart himself unless it dropped below 80 and then the pacemaker would take over.  As long as he is awake it seems to be fine.  At times when he sleeps is when it has to kick in for him.  They told us it is very common for this to happen after the Fontan surgery and sometimes it takes a day or two to level out to normal.

Around 9:00 Dr. Bichell's nurse, Katrina, came in to remove an atrial line.  Any time a line is removed that is a good thing.  That just means one more step closer to home.

At 10:00 the team came by to discuss Jace during their morning rounds.  As far as medicine goes, they are going to start giving him a whole aspirin once a day instead of  a 1/2 that he normally takes.  His enalipril will be started back and they decided to start giving him oxycodone for pain every 4 hours.  This should last longer than the low doses of morphine he has been getting.  They also decided to turn the pacemaker down to 70 to make sure that Jace would not drop below 80 when he was asleep.  If it does not drop, the plan is to remove the pacemaker today.  What a relief that will be!!

Around 11:00 he started to become uncomfortable and trying to scratch his face and neck.  The nurse told us that when they give a lot of morphine sometimes it will cause them to itch.  They gave him some benadryl to help with the itch and his 1st dose of oxycodone so he could rest.

At 12:00 they unhooked his oximeter.  This machine measures the amount of oxygen that his brain is getting.  This is the machine that I watch closely.  I guess that is the teacher coming out in me and wanting to make sure there is no chance of damage to his brain that could affect his learning.  His numbers have been great so it was time they could remove those strips on his forehead and hopefully make him more comfortable.  They also removed his catheter.  I know this will have to make him feel better.  They are also going to start his feeds back.  He will start to get his pediasure again.  They are going to start out very slowly to hopefully avoid him getting sick.  The plan is to do a continuous feed for 24 hours.  He will start out getting 1/2 ounce per hour for 4 hours.  If he tolerates this okay, then they will move it up to 1 ounce per hour.  He should get back to a normal feeding schedule before too long.

At 1:00 they decided to remove the pacemaker to see what would happen.  Thankfully, everything went great with that and his heart rate is staying right where they want it to be. 

At 2:45 they began unhooking more lines.  His central line in his left shoulder was taken out.  The arterial line in his right arm was also removed.  This means he is now ready to be moved out of the ICU and up to the 6th floor to a regular room.  This is a major step getting us closer to home.  He is ready, but it could be awhile before they actually have a bed available for him.  So we get to hang out here and rest.

While the nurses were removing the arterial line, some blood got on the bed.  His sheets had to be changed so that meant I got to hold him for the 1st time since before surgery.  That was the best feeling to get to have that snuggling time for awhile.  When we went to put him back in bed I think it may have hurt him to be moved.  He got really upset and had to have more pain medicine.  It is so hard to move them after surgery because of the lines, having to watch his incision, and not being able to pick him up under his arms.  For 6 weeks we will not be able to pick him up under the arms to give his sternum time to heal back.  That means getting in and out of the car seat and just picking him up at all is going to be difficult.  He settled down and Jamie and I were able to go out to the waiting room and eat some supper.

When we came back from eating, Jace was sleeping so I decided it would be a good time for me to get some much needed rest.  There is a chair in the back of his room that lays flat down that we can sleep on.  Around 6:30 I heard him wake up and start talking to Jamie.  He was asking for Sissy, Pa and Nanny, and Poppy and Gran.  We are only allowed three visitors at a time in his room so they all took turns coming in to see him awake and talking.  He also wanted to watch his Scooby Doo movie we brought with us.  This was such a good sound to hear him trying to talk and happy.  About an hour later I heard Jamie wrestling with him to keep him in bed.  Jace decided it was time for him to get up so it was also time for Mommy's nap to be over too.  He settled down and after they gave him some more pain medicine he went right to sleep.

Sound to sleep with his blanket in his mouth

We were fortunate enough to get a room at the Ronald McDonald House.  Visiting hours are over at 9:00 so Jamie and Taylor left the hospital and went to the RMH for the night.  Today has been a big day for us with lots of  lines and things removed and progress made to get us home.  Hopefully we will have a quiet night.  It is almost 11:00 now and Jace is asleep and doing great.  I will post more tomorrow about how the rest of the night goes.