Tricuspid Valve Repair

WEDNESDAY, FEBRUARY 13, 2008 05:03 PM, CST
Nephi is doing good. His chest tube output has decreased a lot. He should be back to school, church and other activities in a week or two depending on when he gets the tube off and when we feel it's safer for him to be exposed to all those germs out there.
I'll probably keep this site open for another week and then I'll Deactivate it.
I hope you have all enjoyed the updates. We have enjoyed the jokes, good wishes, prayers and everything you have done for our family. Thank you all so much! We really appreciate having so many good freinds and family.
Thanks again
edie

SATURDAY, FEBRUARY 09, 2008 06:49 PM, CST
They put in a new pleaural cath or drainage tube. It is on his right side in his back. They got 250 cc out of it just after they put it in which is about the amount in a can of pop.
It has caused him pain so lots of tyelenol and IB profin. Not enough pain to want to stay another day at the hospital though.

THURSDAY, FEBRUARY 07, 2008 08:53 AM, CST
Tuesday night at 6:30 Nephi said he couldn't breathe. (not the call 911 right now I can't breathe) He was breathing, a little shallow not quite right, but he wasn't in a lot of distress. I tried to drain his tube. Nothing came out. So I called the doctor and talked to him. He thought since it wasn't that bad we could wait till the morning and come in.
Yesturday we went to Dr. Kings office at 1 oclock and he did an echo (like an ultra sound) he saw fluids still around the lungs. Dr Hagop (the surgeon) came in and said the tube wasn't in. It had pulled out. So they pulled out the tube, took pictures of the fluid and we have to go back friday to see if the fluids have decressed. He will probably need a new tube put in.
I am really hoping the fluid will decress because that last tube was so hard to put in.
On a brighter note. Dr Hagop looked at his handy work on the echo and was extremely pleased with what a great job he had done.

THURSDAY, JANUARY 31, 2008 02:55 PM, CST
We saw the doctor and he sent us home. Nephi is playing the wii at home right now. Yeah!!!
He still has 1 drainage tube and doctor advised no contact with sick people. But other than that we are just so happy to be home!!!

THURSDAY, JANUARY 31, 2008 10:49 AM, CST
No news this morning. They did a blood draw which was about the same as 2 days ago. I haven't seen the doctor yet to get a real update on what he thinks. We did a chest x-ray too. So I'll post more after we talk to him.

WEDNESDAY, JANUARY 30, 2008 06:25 PM, CST
Nephi went to school at the hospital. He didn't have any home work to catch up on so he played a United States game then he did a computer game then did a beady buddy or whatever they are called it's a lizard made out of beads. He wasn't very happy yesturday when he found out that they had school in the hospital but was a lot more cooperative today.
At 1:30 it was bingo at the hospital Nephi played from our room while eating a 6" subway sandwich his aunt bought for him (thanks). He won! so we went down to the starlight lounge and picked up his prize he picked a star wars lego.
It's 6:30 and tonight they are playing wii in the star light lounge. He is happy to walk down to the star light lounge (yesturday he would walk 1/2 way and tire out) today he's back probably won't be running any time soon but has the walk to the star light lounge and back down to a tee.
edie.

WEDNESDAY, JANUARY 30, 2008 10:52 AM, CST
Dr. King is in Longview today and won't be back in untill tomorrow.
Nephi has an x-ray and blood draw tomorrow so we'll still be here for at least another day or two. Just have to wait and see what Dr King says tomorrow.
Meanwhile the trick will be keeping Nephi from getting board.
Congratulations Cole baby's!
Congratulations Grandma Mellissa!
We'll be praying for you Scott and Mellissa, We hope that everything will go well!

TUESDAY, JANUARY 29, 2008 08:16 PM, CST
Edith posted that tubes were pulled out yesterday because they weren't draining anymore. Once the tubes were removed, the wounds near his belly button started leaking fluid. Bandages were applied, but continued to saturate quickly. By this morning, Nephi's bedding had to be changed and his belly button, to Nephi's horror, was filled with a liquidy substance. Dr. King is concerned that the leakage may cause some sort of infection, so Nephi won't be going home until the drainage issue is resolved. In addition, he still has a tube draining fluid out of his back. That also has to clear up before he can go home.
Nephi's red blood cell count was higher today, so he didn't get a blood transfusion. We'll see how anemic he is tomorrow. Since his arterial line was moved and they have had to draw blood, they put in another IV line in his left hand today. They'll leave that in until it's time to go home.
Nephi was feeling good today. The hospital had a puzzle party and Nephi got to pick one out to keep.

MONDAY, JANUARY 28, 2008 12:57 PM, CST
Nephi got 3 of his 4 chest tubes out today. Dr. King scheduled a blood lab for tomorrow and he may need a blood transfusion as he is very anemic. They continue to pull fluid out of the chest tube in his back. His spirits are high and he loves visitors.
edie

SUNDAY, JANUARY 27, 2008 05:18 PM, CST
This morning the medical staff came in and drained the chest tube on Nephi's back. Regular readers of this blog may remember a few days ago when inserting one drainage tube was such a problem that it took about six times and an ultrasound to get it in. The final location of this problem drainage tube ended up on his back near his shoulder. He was recently at a zero drainage amount, but when they drained him today, they pulled out between 50-100 cc of fluid. Nephi has four drainage tubes in all: this one on his back, one on his left side, and two near his belly button. The two near the belly button cause a bit of discomfort as they dangle and pull every time he moves. This makes walking a less pleasant experience than it could be. Edith thinks that the left drainage tube will be removed tomorrow since nothing has drained out of it since Nephi was in ICU except for a bit of air. She also thinks that perhaps one or both tubes near the belly button may be removed soon. Someone has described the removal as having snakes pulled out of your body -- not too painful but a bit wiggly and disconcerting. After Nephi's last surgery, he went home with drainage tubes still in him and Edith drained him. There is a strong possibility that Nephi will go home with the drainage tube still installed in his back.
Nephi had a chest x-ray this morning and Dr. Chang took out the IV arterial line and the IV hand line today about 1:30. Hooray! Fewer things poking out of him!
Finally, the respiratory therapists put Nephi on oxygen because his oxygen saturation levels weren't high enough for them. Most people have oxygen saturation levels of 100. Nephi never has. In his charts, Dr. King wrote 93 as the magical number for Nephi to achieve. The respiratory therapists have been trying to get to this number, which may be unobtainable for Nephi. Today Edith talked to one of the respiratory therapists who confirmed what Edith thought all along -- the other respiratory therapists are working with a shortage of information about Nephi. Edith took Nephi off the oxygen and tomorrow will ask the doctor to post what the lowest number is Nephi can drop to without alarm instead of the highest number so the respiratory therapists will get alarmed only when they have sufficient reason to do so.
Ann

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SATURDAY, JANUARY 26, 2008 01:58 PM, CST
Edie reports that both she and Nephi slept well last night. The surgeon's assistant came in this morning and pulled out Nephi's two pacemaker wires. She says it didn't hurt too much as Nephi didn't cry, but Nephi has requested that when those drainage tubes which were so difficult to get in come out, he wants to be inconcscious! There are four of those drainage tubes and they are a lot bigger than the pacemaker wires. Edith speculated that the next thing to come out might be the central lines, but says the medical staff has been talking about that every day and nothing has come of it. The problem is that while the central lines are uncomfortable, they are convenient for administering medication. If they are removed, they will have to poke Nephi. So which is better? Discomfort now, or frequent needle pricks? Dr. King came in last night and ordered another chest x-ray for Nephi, which he'll have on Sunday morning.
Heidi came up to the hospital today to visit Nephi with two of her cousins: Ella and Ingrid. Heidi stayed at the hospital after the cousins left. She hasn't seen her mother or brother since Monday. She's been a real trooper for a six year old. Edie told Nephi he had to walk to the Starlight Lounge today, but she took a wheelchair to get him back with. Half way to the Starlight Lounge, Nephi plopped himself in the wheelchair with a twinkle in his eye. He wasn't going to walk any further if he could get a ride. Edith says that his sense of humor is returning. She printed off all the jokes again this morning and read them to Nephi. His favorite today was the one about the porcupine. All in all, Nephi seems to be feeling better.

FRIDAY, JANUARY 25, 2008 02:25 PM, CST
We are so glad all of you are signing the guest book. It really makes my day to read all the jokes and just plain fun. Thanks!
Busy would describe our day today.
After our night of a lot of sleep last night we awoke to nurses and doctors. Nurses with medication and draining tubes and vital signs.
Then we went down to x-ray. This was a lot of work for Nephi!
Followed shortly by Doctor King who told Nephi he could turn off his oxygen, and talked a bit about his chest x-ray which sounded like it was fine.
I told Dr. King that Nephi has a lot of faith in him. Before surgery he asked if the glue Doctor was going to do his surgery (Glue Doctor AKA-Dr King AKA-Cardiologist) Nephi gave him the name glue doctor because he gives Nephi an Echocardiograph each time he goes in (like an ultra sound with that Jelly-Nephi calls it glue) He laughed.
He told us Nephi needed to walk and eat today and he ordered an x-ray for Sunday.
We took to Dr Kings orders ate breakfast (franks red hot and chicken nugets) then, took a walk down the hall. Nephi didn't really want to do it so I asked what he wanted as an incentive in order to make it. I was thinking in terms of a game or something but Nephi supprised me and said I just want everyone to leave me alone. I promised him and off we went. It took a lot of energy to walk down the hall and back. When we got back he got in bed and fell asleep. Mean while nurses came in and put him on a potasium drip for 2 hours in which he just slept and no one bothered him at all.
We did our breathing games I think we did them before x-ray too.
Then we took off for a walk down the other hall. We stopped at the chairs because Nephi needed a break but he was fully determined to go all the way to the starlight lounge. I hadn't expected this and he's not ready for it yet so I told him we would go back to the room and find him a ride on a wheel chair and go to the lounge which we did and he happily played video games untill dad was coming with lunch.
We went back to the room and Nephi ate hot sauce and chicken while I took off to take a shower ummm! And post.
BUSY BUSY BUSY
we still have one more walk to do today but he is doing so well I don't think we'll have a problem.
edie

FRIDAY, JANUARY 25, 2008 08:55 AM, CST
In ICU, the patient to nurse ratio is low, but in the pediatric unit, there are many more patients and fewer nurses. As a result, the nurses don't spend as much time, especially in the the middle of the night, checking on patients. This meant that last night Nephi and Edie caught up on a lot of much needed sleep in the pediatric unit!
Nephi had a chest x-ray again this morning and Edie thought it looked good. The medical staff took him off oxygen this morning. He went to x-ray by wheelchair, but getting into the wheelchair meant standing, and while he was getting the x-ray, he was standing for a while. The doctor wants him up and moving more today, so he has ordered a walker for Nephi. Edie is hoping that they might get as far as the Starlight Lounge today. (Nephi hasn't made it there yet since his surgery.)
If you haven't checked the photo link for a few days, take a peek. There's a photo of Nephi with Jack-in-the-Box chicken and hot sauce. He looks so much better than he did just following surgery -- no surprise -- but it is good to see the improvement.
Ann

THURSDAY, JANUARY 24, 2008 03:32 PM, CST
We made it to the pediatric floor today. Alan brought Nephi some chicken from Jack in the box which he enjoyed (no he doesn't like hospital food!!) Oh it's so good to see him eating!
He walked 2 times today a short distance! Yeah!
He looked so much better after the first short walk. He was a changed man.
I keep making him do the breathing game, it is a plastic toy looking thing that you suck like a straw and a little ball goes up. The idea is to get the ball up to the happy face and keep it there as long as you can. He is doing ok with this and it is working his lungs so he doesn't have to do some really bad evil thing if I could remember the name I would tell you but it is a step down from being intebated (sp?)
His nurses brought him medication this afternoon, after lunch, and gave it to him too fast and he threw up. Then he got tired and went to sleep.
Later today we will try do some walking to the starlight lounge (a place in the hospital with a big screen and games and computer.) We finally got a wheel chair so we are almost mobile enough to go. Yeah!
edie

THURSDAY, JANUARY 24, 2008 01:35 PM, CST
Last night was a little rough, as Nephi's breathing was shallow and the medical staff decided to wake him (and Edie) up every two hours to breathe deeply into something to keep his lungs from collapsing. He had a chest x-ray this morning around 6 am that looked good. He's apparently doing well enough to be moved out of ICU, and they moved him into the pediatric ward around 10 am this morning. The plan for today was to get him up three times to walk and keep his breathing deep enough so that his lungs continue to function properly.
Ann
WEDNESDAY, JANUARY 23, 2008 09:26 PM, CST
This afternoon the surgeon and surgeon's assistant came in to install the drainage tube. The area had to be numbed first, which isn't painless, and then the surgeon's assistant poked Nephi three times trying to get the tube in. After failing three times, the surgeon attempted to get the tube in. After two or three more attempts, Dr. King (Nephi's cardiologist) came into the room and told the surgeon where to insert the tube so that it would go in. It finally went in. Over 200 milliliters of fluid, which is a lot, was drained from his chest.
Nephi has been up and walking today. The first time he walked about 40 ft, but the next time he went to the end of the hall and back, which is about two or three times as far. He is still in the ICU ward, but he was asking for pizza for dinner tonight, so he is feeling better.
Ann

WEDNESDAY, JANUARY 23, 2008 11:18 AM, CST
Nephi has some fluid accumulating on the right side of his chest this morning. The doctors will install a drainage tube around noon today. He already has a drainage tube on the left side, but the left side has an abundance of air. They will try to suck the air out of the left side. I may have the information about the right and left sides reversed, but the ideas remain the same. I remember that Nephi had these drainage tubes during previous surgeries, so I am surmising that this is not abnormal at this point in time.
Ann

TUESDAY, JANUARY 22, 2008 02:01 PM, CST
Nephi's nurse just told me he will probably stay in ICU as they have no room for him on the floor (Pediatric and School age rooms are all full)
Nephi got out of his bed this afternoon and had a change of scene from the bed to the recliner rocking chair next to the bed. It was a bit rough. He had a good dose of Morphine when he made it back to his bed, and he is now drifting in and out of consousness.
He asked me how come the tv is upside down, later he asked why we were up on the ceiling? Which is a little different from last night when he was trying to pull off all his lines, and then saying he found the lines already pulled out.
Sammie came up for a visit this afternoon with Alan. Nephi was glad to see her and is asking for brothers to visit later today maybe Heidi too.
edie

TUESDAY, JANUARY 22, 2008 09:45 AM, CST
Last night Nephi thought his projectile vomiting was pretty cool, but it caused a lot of work for the nursing staff as they had to change all his bedding. Some of his comments last night as he was drifting in and out of consciousness included "Let's go home," and "I want some chicken." I'm not sure they sound all that loopy -- isn't that what he always says?
Edith was able to get some sleep (about 6 hours total in two different shifts, as you might notice from the time stamp on the last post) in the Quiet Room (a room with 6 or 7 beds in it) last night. This morning Nephi is awake, alert, and coherent. Edith found a printer and printed off all the jokes from the guestbook and read them to Nephi. He really enjoyed them. He's had a banana, jello and gatoraid so he's back on eating food this morning and keeping it down. Edith thinks he'll be out of the ICU sometime today, and also thinks that the nurses will get him up for a walk today.

TUESDAY, JANUARY 22, 2008 02:47 AM, CST
They took Nephi off the ventilator around 7pm, he just didn't want that tube down his throat anymore. He imediatly asked where I was. (mom) followed by I want a drink. Of course he wasn't allowed anything so early in the game, He was finally allowed to have a little bit and he promptly vomitted. His tummy just isn't ready to handle that yet even though his brain is telling him he is hungry and thirsty. They gave him some medicine to help him not feel sick but it made him a little loopy. It has been a little bit entertaining. I don't know if you can all tell there are two authors myself and my sister Ann. She is the english major and the one making it easy to read and understandable. Hey Ann could you please edit this paragraph when you get a chance. It lacks grammer and in general needs help
Thanks
Also thanks for all the jokes keep them coming. I just printed them off and will be reading them to Nephi when he is a little less loopy.
edie
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MONDAY, JANUARY 21, 2008 06:34 PM, CST
Edie and Alan went into the ICU this afternoon and saw Nephi. New pictures have been posted to this website. Edie will be staying at the hospital with him.
Ann

MONDAY, JANUARY 21, 2008 02:46 PM, CST
The surgery is finished and Nephi just went into ICU. They will be stabilizing him for the next hour, and then the immediate family can visit. The surgeon said that everything went well but that the next 48-72 hours are still risky. They were able to replace his baffle, upgrading him from a size 14 to an adult size 18, which should last him for a long time.
Thanks for all your prayers and thoughts and especially thanks for the jokes. Nephi will love them when he is well enough to read them.
edie

MONDAY, JANUARY 21, 2008 01:17 PM, CST
Nephi is off bypass and has a little bit off leaking due to blood thinners he was on for surgery as soon as he stops leaking they will close the chest. Everything looks good.

MONDAY, JANUARY 21, 2008 12:52 PM, CST
The surgeons have put in the annulus ring for the tricuspid repair. (See the link for more information regarding this surgery.) In addition, they were able to replace the baffle, or at least part of it. (I'm not really clear about this yet.) At about 12:30, the surgeons were waiting for confirmation from the cardiologist who was viewing the Echo to see if the repair was working properly. In surgery, Nephi's heart was beating and blood was flowing through it, although not totally up to speed yet. They were beginning to warm Nephi. I think he may be out of surgery by about 2 or 3 pm this afternoon. It sounds like they are almost done and things are going well.
Ann (Edie's sister)

MONDAY, JANUARY 21, 2008 11:16 AM, CST
Alan, Edith, and Nephi left about 5:30 this morning to go to the hospital. By 9:30 am, all of the tubes and other necessary stuff (that's a technical term) had been inserted or installed and the surgeons were starting to open Nephi's chest. The Cardiac Care Manager has been giving Alan and Edie updates while Nephi is in surgery. The next update came about 11 am, saying that Nephi is now on the by-pass machine. It will be about two more hours before Alan and Edith receive another update.

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SATURDAY, JANUARY 19, 2008 08:16 AM, CST
We spoke to the surgeon yesturday. Nephi is still in good spirits and knows what will be happening. We would like everyone to pray for Nephi's surgeon to be able make a good repair to his tricuspid valve and that the surgery goes smoothly. If all goes well his surgeon will also take out his baffle and replace it with a bigger one. We are very hopeful he will be able to do that too. Thank you for all your well wishes, prayers and notes we are great full to have a great support network of family and friends.

THURSDAY, JANUARY 17, 2008 09:33 AM, CST
Nephi's concerns are starting to grow. He is wondering if his surgery is on Sunday so he can skip church. He is also wondering if he can take his game system to the hospital because supper smash brothers is coming out soon I looked it up it's coming out (March 9th)

MONDAY, JANUARY 14, 2008 04:57 PM, CST
This CaringBridge site was created just recently. Please visit again soon for a journal update.

MONDAY, JANUARY 14, 2008 03:11 PM, CST
We told Nephi about surgery last night (he already knew) and he is very unconcered about surgery. We will be doing a preaddmitting on Friday and will meet with his surgeon again. Dr Hagop Hovaguimian and get a tour of the hospital. Surgery will be on Monday we will arrive at 5:30 am. The surgery will last from 5 to 6 hours and he will be in the hospital 7 to 10 days if all goes well and there are no complications.