January 2, 2013

January 1, 2013 - Update on Kelly

We wanted to give a detailed update on Kelly's road to recovery. Unfortunately the last three months have been the hardest. Kelly was doing amazing after her transplant until Oct. 3rd. Kelly got a severe blood infection and went septic. The first ten days at All Childrens Hospital in St. Petersburg were touch and go. Connie and I (Stuart) both slept in her hospital room and didn't leave her side. We spent the next 38 days in the hospital, most in the PICU. Kelly had to go onto kidney dialysis and liver dialysis. The liver dialysis (MARS) is only available in two pediatric hospitals in the country. This definately saved her life. Looking back on it, after we thought she would be ok, we were worried about Kelly losing several toes, brain damage and a host of other worries. The amount of blood transfusions rivaled her kidney and liver transplant.

The worst was still to come. After 3-4 weeks intubated and sedated, Kelly woke up. After two days we found out that Kelly had lost her eye sight. The infection had spread to her eyes and she was not able to fight off the infection.

We just finished another two weeks in the hospital for another infection. This was not nearly as bad, but she is easily susceptible to infections.

We were able to get out of the hospital for Christmas and had a beautiful day.

On Dec. 26th we were back at the hospital for an eye surgery on Kelly's left eye. This was what we called her good eye. We hope that Kelly will be able to see again, but that keeps seeming unrealistic. Her surgery was postponed because the anesthesiologist was not comfortable putting Kelly under for the three hour surgery.

Kelly is doing the best she can, but her loss of vision has been very difficult.

We will do the surgery on January 2.

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August 28, 2012

August 28, 2012

Kelly is making tremendous progress. She continues with therapy four days a week, labs three days a week and doctor appointments once a week. Her medicines continue to be adjusted due to her prograf (immunosuppressant drug) level. This is to make sure her immune is suppressed enough not to reject her new organs. She is also being monitored for cytomegalovirus (CMV). Although Kelly had not been exposed to CMV her donor tested positive. Her kidney will continued to be monitored to make sure her Blood Urea Nitrogen (BUN) levels are good and that she is hydrated. We are optimistic that in time some of the drugs she is on will be eliminated.

Although Kelly never indicates or complains of being in pain she will not let your hand get near her stomach. Her sleeping is getting somewhat better and I feel her sleeping is connected to the sensitivity or pain in her stomach.

Kelly is scheduled for surgery on August 30th to remove the stint in her kidney, with an ultrasound the following week to insure the stint removal was successful before she can return home in St. Petersburg.

Once Kelly returns to St. Petersburg, she will continue to be monitored by the transplant team returning to Atlanta once a month. She will have weekly labs drawn at All Children’s Hospital that will be monitored with the nurse practitioner in Atlanta.

Kelly’s journey is just beginning.

August 6, 2012

August 3, 2012

Two weeks to the day of a double transplant, Kelly is released from CHOA, Atlanta. She is still under the care of the transplant team and the family will remain in Atlanta at the Ronald McDonald House for Kelly's lab work three times a week and for therapy (OT, PT and speech).

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August 2, 2012

July 30, 2012

Kelly’s had a very busy day. First, the speech therapist came in to work with Kelly on eating and drinking. Kelly completely ignored the therapist so we obviously didn't get anywhere.

After therapy Kelly got her hair washed and a sponge bath. She was getting all pretty to go down to the voice room (radio station located at CHOA sponsored by Ryan Seacrest) to watch The Wiggles perform. The bath totally wiped her out and she fell asleep. She woke up in time to go down and have her picture taken with The Wiggles. This was a great motivation to get her out of bed for the first time in twenty-one days. She sat in her wheel chair and didn't complain once about sitting up straight. Thank you Wiggles for motivating my daughter. It was a great reward for her.

Kelly loves The Wiggles and it was the original cast members. They are on their Farewell Tour. (Murray is suppose to be starting a new group ;~)) I'm very happy she was able to see them. She had always been too sick before to go to any of their shows.

By the time we got back to Kelly’s room she had visitors. Her Aunt Kimberly, Uncle Kjell, and cousins Emilie, Allison and Jennifer were there. Kelly was very glad to see them but was quite worn out from all the excitement of the day.

It was sad to see them leave since it meant that Kai would be leaving also. Kai was the best medicine for Kelly. He encouraged and helped her with her therapy. I miss him already. The week went by too fast.

So, like all days, even good days must come to an end....Kelly's potassium spikes. Here we go again. Stu and I think...really?? This isn't suppose to happen. She has a brand new kidney!! But, like Dr. Ramero told us before...."Don't take your seatbelt off yet... The ride isn't over..."

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August 2, 2012

July 29, 2012

We have been in the hospital for over a month now. I can't believe the roller coaster we have been on. I'm waiting for it to stop so we can get off but as Dr. Ramero said, "Don't take off your seatbelts yet."

In case you haven't been updated, Kelly received her liver and kidney from a deceased donor. How generous and kind of the family who donated their child‘s organs, I will be forever grateful to this family. Unfortunately, I will never be able to express my gratitude to them. I can only hope that they truly know how many lives they have saved.

The following is a summary of what Kelly has gone through since arriving at CHOA in Atlanta on July 1, 2012.

Kelly was in PICU for twenty days, thirteen days prior to her transplant surgery and seven after her surgery. Prior to surgery, she was on the CVVH machine for ten days and intubated for fourteen days, eleven days prior to surgery and three days after surgery . Kelly had a right chest vascath, a left chest vascath, an arterial line in each wrist, an IV in one arm, an IV in her foot, and four JB drains. She had a chest X ray daily (sometimes up to 2x day), EKGs, echocardiograms, ultrasounds, and an EEG. She’s had forty-seven (47) blood transfusions to date, her second PICC line (the first one came out when the nurses did a dressing change. :( She has scars on her face from tape and was burned on her arm from a high flow oxygen tube.

Kelly also is given methadone and valium to help wean her off the sedation/pain medicine that she had been given. I never imagined watching my (five year old) child go through withdrawal. She didn't sleep for 48-60 hours.

Kelly is now on the transplant step down floor. The surgeons are very happy with their work and say she is doing great. Her internal organs are working well, but now, we have to get down to business and get Kelly back to where she was before she became so sick. This means lots and I mean lots of work. Kelly has low muscle tone and weighs about 14 kg which is around 32 lbs. She is very weak and PT, OT, and speech love to come at the same time or right after one another.

Kelly is not eating yet. Her lipids and TBN were turned off today so now she is receiving all of her nutrients through her NG tube (she’s on her seventh NG tube).

Kelly's spirits come and go. Her brother Kai has been here for a week and he has been the best medicine for her. He helps her participate in her therapies and makes her laugh. It is a great sight to see. I hate to see him go, because I know he can coax her into doing more than I can, but he needs to go have some more Kai time with family.

Over all I know Kelly is going to do well. It is going to be a long process but I know we'll overcome. Ask me if I would do it all over again and I would say, "If it would save my child's life, absolutely!"

Please continue the positive thoughts, wishes, and prayers. The support of our friends, family, and family's friends have been so unbelievable! Having so many people supporting us during this time has helped us to solely focus on our Kelly’s needs.

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July 25, 2012

July 24, 2014

Good news and bad news!

Kelly is no longer intubated. Even though she is on a low volume of oxygen at least she is breathing good on her own and does not need to be intubated any longer.

Kelly is going through withdrawal from all the pain and sedation medicines she has been on for three weeks now. She is not handling this well; not getting any sleep or rest. This is very hard to watch.

July 23, 2012

July 20, 2012

Our morning began very early. Kelly was taken down to surgery at approximately 9AM. They performed Kelly’s liver transplant first and it was completed around 1:10PM then they started on Kelly’s kidney transplant. Surgery was complete by 7PM. All our prayers were answered, Kelly came through her double transplant fine.

We thank those that donate to save other's lives. The family that gave this most precious gift will forever be remembered by our family.

July 17, 2012

July 16, 2012

They said it would be two to five days after being upgraded to 1B on the donor list that Kelly would have her transplant surgery. It is now going on the eight day. There have been no changes in Kelly’s condition. All we can do is wait and pray that a donor will be available soon.

Thank you all for your continued support.

July 15, 2012

July 14, 2012

Thank you everyone for all the messages, cards, donations and prayers! They mean the world to our family.

The past few days have been very emotional. It has been six days since Kelly was upgraded to 1B on the donor list. The CVVH machine is doing all the work for Kelly’s kidneys but the only alternative for the liver is a transplant. At this time there is no donor.

Kelly is in critical condition. Still intubated and continues to receive blood transfusions and plasma to help maintain her blood pressure. They did an endoscopy on Thursday to determine where Kelly was bleeding from but could not find a source. Her platelet count continues to be low and she is getting fluid in the lungs.

Connie made the decision and started the process of donating to Kelly. This means two major surgeries for both Kelly and Connie; first a piece of her liver and about a month later one of her kidneys. It is possible but not feasible or advisable to take two organs from a living donor at once, especially when one of the organs involves a kidney. If she is accepted and if a donor is not available by Friday then they will proceed with this surgery. We should know Monday or Tuesday at the lastest if Connie is accepted.

Please continue your prayers for Kelly and pray that a donor will be available for both a liver and kidney.

Please remember to sign Kelly’s guestbook.

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July 11, 2012

July 11, 2012

So much has happened since my last update.

Kelly received her third blood transfusion last night and went through a second surgery yesterday for another permanent catheter, the first catheter was placed too high in the vein and kept clotting off. She is also on a Continuous Veno-venous Hemofiltration (CVVH) machine, a gentler form of dialysis, which she will remain on 24/7 until her creatinine numbers are better or until she receives her transplant. She is still intubated and heavily sedated with nine pumps along with two lines running in/out for the CVVH machine.

All I want to do is hold her and let her know everything is going to be alright.

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July 9, 2012

July 9, 2012

Kelly was up all night. It turns out her ammonia level was @ 150. They gave her medicine to help bring it down. The PICU team has decided to move ahead with Dr. Ramero's plan since Kelly's labs are not looking well at all. She is getting a blood transfusion and then she will go into the operating room to get a permanent catheter so they can start Kelly on dialysis. Kelly is upgraded to a 1b on the transplant list, because Kelly now needs dialysis. We are hoping to be transplanted in 2 to 5 days.

Please keep her in your prayers.

July 8, 2012

July 8, 2012

Kelly is being moved to ICU. Her potassium and ammonia are stable but her creatinine has gone up every day since we have been here. This is an indication of her kidney function. If her creatinine does not go down they may have to do a form of dialysis. According to the doctor this will be a bumpy ride. Since this will put Kelly higher on the transplant list, she could have surgery as soon as the next ten days to two weeks.

July 6, 2012

July 4, 2012

Today is the Forth of July and the hospital is very quiet compared to All Children’s Hospital in St. Petersburg. It is very sad and depressing here as there are no planned activities for the children.

Kelly is very sad being away from home and the faces she had gotten used to. Now, more than ever, she could use a sticker every time she has to take her medicines; nine different meds at a time, some up to three times a day.

In the last couple of days, Kelly has had a PICC line and NG tube placed and I realize what a difference giving a toy or bubbles to a child for being brave makes. When a child is sick, scared and doesn’t know anyone, a toy can add a smile on their face and help with distraction. This hospital does not have the stickers, toys or bubbles to give so it makes me sad to think it isn't just my beautiful Kelly going through all this but all the children in this unit as well. I'm not sure the nurses even know how much easier it would make their jobs if they had something as simple as a sticker to help “bribe” a child.

All Children’s Hospital in St. Petersburg has taught me so much but the most important thing I've learned is that you should do all you can to make a child comfortable and try to put a smile on their face.

With this thought in mind, I will continue to decorate her room, to make it her own and hope to put a smile on her face when she’s awake.

If you would like to send stickers, art supplies/craft supplies, stuffed animals, toys, bubbles, throws, pillow cases, or stuffed small pillows (all in fun kids themes) to share with other children in this unit, please send to:

CHOA Egleston

Attn: Kelly Whitten

PICU, Room 4116

1405 Clifton Road NE

Atlanta, GA 30322

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June 30, 2012

Kelly's Journey

Friday, June 29, 2012

Well I guess it's go time. Kelly will have an air ambulance to the ATL at 3 am from All Childrens in St. Pete. Connie will fly up with her and I will drive up on Monday. We will be in the ATL for at least a month or two for Kelly's kidney and liver transplant

July 25, 2012

July 23, 2012

We thought Kelly would be extubated today but it looks like it may be tomorrow. She is awake a lot today. She will shake her head yes or no if you ask her a question. She is sedated but not as much as before. To extubate her they need to have her less sedated and will wean her slowly to make sure she can breathe on her own.

So sweet this evening when Stu and Kai came into the room. We told her Kai was there to see her and she cried.

July 21, 2012

June 19, 2012

Good news today! The transplant team indicated a possible donor. Before we can get excited and share the news, a member of the transplant team has to inspect the organs to make sure they are suitable for donation. We may not find out until just prior to Kelly going to surgery.

Kelly’s surgery could take place at midnight, then the time was moved to 2AM, now they say between 6 - 7AM on Friday. We understand this is typical since the retrieval process requires a lot of organization. All donated organs must be in place before the retrieval process begins. When organs are removed from a donor, there is a limited period of time in which they can be preserved before being transplanted.

Our hopes are for Kelly and our thoughts are for the family of the donor. Its going to be a long night.

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July 8, 2012

July 6, 2012

Kelly has been moved to number 30.

July 6, 2012

July 5, 2012 UPDATE

Good News!! Kelly has officially been listed for a transplant.

July 6, 2012

July 5, 2012

Kelly is beginning to look better than when we first arrived. The nutrients she’s receiving through her IV is making a difference. She will continue with the IV until her potassium is at a level where they can begin with the NG tube. She seems to tire easily and at times we see small moments of her being herself. At this time we are taking baby steps which seems to be working.

We met with “the team” this morning. Although we still have not met with the transplant financial counselor we were advised that they were going to proceed with listing Kelly on the donor list. Dr. Greenbaum, the Nephrologists, confirmed that Kelly will also be getting a kidney transplant as well, which Stu and I already expected.

Kelly has pretty much gone through all the testing needed prior to finding a donor. Now we are working on getting Kelly healthy and to lift her spirits.

We thank you for your donations and your thoughts and prayers. Please continue to post Kelly’s story on your face book page and tell your friends. I will continue to update Kelly’s progress on her website: www.helphopelive.org (patient: Kelly Whitten).

If you would like to make a tax deductible donation, please make it through the HelpHOPELive website. If you would like to organize or host a fundraiser for Kelly or need ideas for fundraising, please let me know.

July 6, 2012

July 2, 2012

The transplant team (“The Team”) came in and introduced themselves. I had no idea what all a transplant entailed and all the doctors involved. We have a transplant doctor, Dr. Romero; transplant surgeon, Dr. Knechtle; Nephrologists, Dr. Greenbaum; transplant coordinator, dietitian/nutritionist, transplant pharmacist, psychologist, two social workers (one for liver and one for kidney), and a transplant financial counselor.

The transplant surgeon said their first choice for Kelly is transplanting one kidney and one whole liver from a deceased donor within Kelly’s age range; this is the ideal choice. Their second choice is one kidney and a half liver from a deceased donor and last option is to receive one kidney and a half liver from a live donor. Both of Kelly’s kidneys and her liver will be removed. Normally they will leave the kidneys but since Kelly’s kidneys have a tendency to get infected often hers will be removed.

Even though Kelly has kidney disease, it is the liver that is deteriorating and needs replaced. At this time they are not positive if Kelly will or will not receive a kidney. Dr. Romero, the liver transplant doctor, has the final say.

I have been working on decorating Kelly's room to help cheer her up. The transition to a new hospital has made her very scared and sad. She won't look at anybody that comes in and isn't talking. I didn't realize the affect this would have on her. Kelly is a child that doesn't normally cry and if she does, she is very easy to console. She has broken down twice already.

Kelly will have a PICC line inserted, this is an IV that goes into one of her main veins that leads to an artery. It will keep her from being poked every time they need to draw labs. They can use it to place fluids through IV as well.

July 6, 2012

July 1, 2012

Arrived safely to All Children’s Hospital of Atlanta around 7:00 a.m. Lots of people in and out of the room all day. Kelly and I both are very tired. We have been up since 2:00 a.m.

Kelly's ammonia level is up. Very scary being in a new hospital dealing with this without Stu.

August 17, 2012

August 16, 2012

Kelly‘s progress is unbelievable! She has therapy four days a week, labs three days a week and doctor appointment once a week (liver one week, kidney the next).

Kelly begins each day either at 6AM or 6:30AM; depends on whether or not she has lab work done. We pretty much have a routine going; wake up, breakfast, medications (nine), dress, brush teeth, out the door. By the time Kelly is through with therapy for the day she is pretty much worn out and usually falls asleep before we get back to the Ronald McDonald house. She is eating well but not sleeping well at night. She is walking, still a little unsteady on her feet but she is progressing.

Continuing with fun therapy in the evenings with coloring, painting, signing and puzzles. One thing Kelly loves is watching Baby Signing Time and Caillou. These are her favorites.

Evening routine consist of bath time, brushing teeth, combing hair and oh, can’t forget the medicines. Each night she takes her medicines for her daddy, brother Kai, GG, Aunt Cece, Aunt Pat, Aunt Kimberly, and so on……..

What a joy it is to see how much progress Kelly has accomplished in such a short time.

July 23, 2012

July 21, 2012

Kelly is doing great after her double organ transplant. Her new liver started working right away as did her new kidney, she no longer requires being on the CVVH machine. She is somewhat pale so they may need to give her blood products. Since she is still intubated she is kept sedated. They are hoping to extubate her by Monday weaning her a little each day.

July 6, 2012

July 3, 2012

Stu arrived yesterday evening and Kelly, along with mommy was very happy to see him. Although Kelly is a mommy’s girl you would not have thought so once daddy arrived. She is perkier this morning having both mommy and daddy with her.

Today Stu met with three members of the transplant team and we both met with the transplant pharmacist. The transplant team reinforced what I was told the previous day and answered the questions that Stu had. The transplant pharmacist went over all of Kelly’s medications that she is on now and will educate us on medications that she will be on after her transplant surgery. She will continue to follow Kelly after the transplants and then annually.

We also had a very emotional meeting with the psychologist.

Dr. Romero confirmed that Kelly will be listed within 24 to 48 hours for a donor but prior to getting the ball rolling, there will be a meeting with a transplant financial counselor.

Kelly’s potassium level has been extremely low and she has not been eating. She has an NG tube but Dr. Romero is working on getting her potassium level up before he can start using the NG tube. In the meantime, she is getting all her nutrients through an IV.

To summarize, once Kelly is listed the waiting begins. This could take up to three months but we are hoping for sooner. Ideally we would love to go home and wait but unfortunately Kelly is not healthy enough to leave. In the meantime, we will work on correcting Kelly’s electrolytes and getting her stronger.

So until then, visitors are welcome!

July 23, 2012

July 22, 2012

Kelly is still kept sedated due to being intubated but she is more alert. She received blood yesterday along with albumin and platelets today.

Kai got to see his sister for the first time in three weeks. Connie prepared him before he went in so he would not be alarmed with all the tubes. He did great!

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August 2, 2012

August 1, 2012

Good news today. Kelly had the NG tube removed.