First Week at Home

     Our first day at home went really well.  It didn't take Jace long to seem like his old self.  It wasn't long before he was playing and trying to climb again.  We had to put some of his toys away because we were afraid that it might be too soon for them.  We all pretty much crashed for the rest of the afternoon.  We didn't realize just how tired we were until we got home.  It felt so good to sleep in our own beds and not be woke up every hour or so.
     On Friday morning, we were up early to see Dr. Hansford.  We were in Somerset by 8:00.  Jace's weight was 25 pounds.  I was really pleased with this because I was afraid he might lose several pounds in the hospital.  He was down only a few ounces since his last visit.  Dr. Hansford could not believe how good he looked.  She said you would never know what he had just been through unless you looked under his shirt.  She said he had some fluid on his ear and she didn't want to take any chances on it getting infected so she gave him an antibiotic for it.  She wants to see him again between the week that we see Dr. Bichell and Dr. Janssen.  That way he will see someone each week for check ups.

Jace & Dr. Hansford

     When we got home from the doctor, Jamie had some yards to mow so Mom came over and stayed with us.  She watched Jace so I was able to get the car unpacked and things put away.  Jace seemed to have a really good day without pain.  I gave him Tylenol with his morning and night meds and that was the only pain medicine he had to have.  He got a case with lots of hot wheels cars as a gift so he entertained himself with them for most of the day.

     Taylor had a birthday party and sleepover that night.  She was so worried that we would not be home from the hospital for her to go.  I've got a feeling somebody would have been making a trip to Columbia to bring her home for it.  I'm so glad she got to go.  I know it has been a long week for her in the hospital but she handled it well.  Sometimes I forget she is only 11 because she acts so much older.

     The rest of the weekend was pretty quiet and restful.  We took some drives to get Jace out of the house, rode him on the mule, and sat outside.  I'm so thankful the weather is nice and we are not having to stay in the house the whole time. 

     On Monday, Jamie had to go back to work.  He is on 2nd shift now so he goes in at 1:30.  That morning we decided to work on our swing.  He got his papa and memaw's swing that was on their front porch. It needed some work so we thought we would tackle that project.  I was so pleased with the way it turned out.  We hung it on our back porch.  I think we will really enjoy it.  The swing turned out so well that we also painted an old rocking chair too.  It is amazing what some sand paper and paint will do.

     Most of our mornings this week have been spent outside working on small projects.  We go out about 9:00 and are back in before 12:00 for Jace to eat, take a nap, and Jamie to get ready for work.  We have also worked on the patio furniture and painted some on the deck around the pool.  There is still lots to do, but we are slowly getting some of those things done.  It makes having to stay at home easier when I can get out in the mornings and feel like I am getting something done. 

being so good while Daddy & Mommy work

     Mom came over on Wednesday and watched Jace.  Jamie and I worked in the yard that morning.  He had someone give him pine needles from the trees they cut down.  We have been taking his trailer and getting loads for our landscape.  We have almost got everything finished in our yard.  There is about one more load left and that should finish the rest of what we want to do for this year.  When we finished that, Taylor and I spent the rest of the afternoon in the pool.  It was so nice to lay on a float and soak up some sun for awhile.

     Taylor stayed busy for the rest of the week.  She made lots of trips up and down the driveway and through the yard on the mule.  On Wednesday night, she spent the night with Lauren.  They went swimming on Thursday and Lauren spent the night with her.  Since we are trying to keep Jace sheltered as much as possible they spent the night at Pa and Nanny's.  They spent most of the day on Friday in the pool.  Late that afternoon, Jeremy, Danielle, and Shelby came down.  It was Shelby's 9th birthday so we all had supper together.  Taylor went home with them to spend the night and be there for Shelby's party on Saturday.  Taylor has been busy this week, but I think she has had fun.

one of many trips this week

ready for church

     We have had a great first week at home.  We are resting up today to get ready for a busy week ahead.   

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.