A renal or kidney transplant is an operation where a healthy kidney from the body another person is put into the body of a person whose kidneys are not working properly any more. Your doctor will have explained this operation is necessary as your child’s own kidneys have reached the stage where they are not able to do all the functions that are needed in order to keep them healthy.
What to expect
Your child may or may not be on dialysis. Like dialysis, a kidney transplant is a treatment for kidney failure. Unfortunately it is not a cure. But as dialysis is considered a bridge to kidney transplant, it is the best form of renal replacement therapy.
Your family have probably been preparing for this day for quite some time. The transplant means your child will no longer need dialysis and special diets, and, hopefully, they will be able to enjoy a better quality of life.
The new kidney being transplanted into your child may be being given as a gift from a relative (live donor) or may be coming from a person who has passed away (deceased donor). The transplant operation usually takes about four hours and is done under a general anaesthetic.
The surgeon will make a cut in your child’s abdomen low down on the left or right side depending on where the new kidney is going to fit the best. Your child’s own kidneys will be left in place unless there is a problem and you would most probably have already discussed the possibility of this with the surgeon before the day of the transplant.
The blood vessels of the new kidney will be connected to the blood vessels that supply your child’s leg, or if your child weighs less than 20kg, directly to the aorta which is the main blood vessel from the heart in our body. The new ureter (the tube that carries the urine from the kidney) will be joined to your child’s bladder. A small tube called a ‘stent’ will be put in the ureter to stop it from blocking or kinking. Your child will also need a urinary catheter (inserted into the bladder during surgery) for a few days. The surgeon will indicate when this can be removed.
Prior to admission
If your child is receiving a kidney from a relative, a week before the transplant is to take place, several hospital appointments are necessary to ensure the process is a smooth transition. During preparation for transplant, you will meet with the transplant team at the Princess Alexandra Hospital. The living related donor is required to attend a pre-admission clinic at Lady Cilento Children’s Hospital one week prior to surgery. During this visit the donor will be seen by an adult anaesthetist and the adult pre- admission nurses. Consent will also be finalised, and final cross-matching blood tests between the donor and recipient will be performed.
Admission to hospital
If your child is receiving his/her kidney from a live donor, they will be admitted to hospital the afternoon before the scheduled day of operation. The donor will be admitted to hospital on the day of surgery at 6am. If the kidney is coming from a deceased donor admission may be at any time of the day or night.
Day of admission
Your child will be admitted to Ward 10b, a surgical inpatient ward on level 10 of the Lady Cilento Children’s Hospital.
Your admitting nurse will apply an identification armband, which stays on throughout your child’s admission for safety reasons. If the ID band comes off please notify nursing staff, as it will need to be replaced. Please inform the nurse of any allergies that your child may have to medicine, food, tapes or latex.
Your admitting nurse will ask about your child’s medical/surgical history and any particular needs your child may have while they are in hospital. It is important you provide staff with detailed and accurate information about your child’s past medical history, so they can properly plan your child’s treatment.
The nurse will also record your child’s weight, height, temperature, heart rate, respiratory rate and blood pressure.
Please bring to hospital all medications your child is currently taking. This includes herbal or homeopathic tonics. There will be a number of changes to your child’s medication schedule after the transplant surgery.
If your child is having a live donor kidney transplant, you will be seen by your nephrologist on the afternoon of your admission to discuss the transplant operation and they will also be able to answer any questions you or your child may have.
If your child is having a transplant from a deceased donor they will need a number of blood tests to be performed immediately after being admitted to hospital.
Another doctor from the renal team will put an intravenous line into your child. This line will be used to give medicines and fluids before your child’s operation. The nurse will apply special anaesthetic cream to your child’s hand to minimise the amount of discomfort felt by your child during this procedure.
Your family will be taken on a tour of the Paediatric Intensive Care Unit (PICU) if this has not already been done during the pre-admission phase.
If your child is on dialysis they will have overnight dialysis as usual. An anaesthetist will see you before the transplant surgery. This may happen the afternoon before or the morning of surgery.
The anaesthetist will discuss the following with you and your child:
- the best way of beginning the anaesthetic. This includes whether any premedication is required prior to leaving the ward (to combat anxiety); the use of a gas induction or injection to commence anaesthesia; and whether you wish to stay with your child as the anaesthetic begins.
- what kind of pain relieving medicine they will order for after your child wakes up
- what happens if your child feels sick or vomits
- previous experiences with anaesthesia and surgery
- medicines that your child is currently taking.
The nurse caring for your child will tell you what time your child will need to fast from in preparation for the surgery. While fasting, they cannot have anything to eat or drink (including chewing gum and lollies) before the operation.
Your child will need to take some medicine by mouth on the morning of the operation with a small amount of water.
Your child’s expected length of stay in hospital will be between 10 and 14 days, or until they have met the expected recovery outcomes (listed at the beginning of this information).
Day of surgery
For children receiving a live donor transplant
At 6am, the nurse will give your child a number of medicines. Some will need to be swallowed and some will be given into the line that is in your child’s arm. It is OK for your child to take their medicines by mouth, even though they will be fasting.
These medicines are very important as they are the first doses of the anti-rejection medicine that will prevent your child’s body from rejecting the new kidney that they are about to receive.
For children receiving a transplant from a deceased donor
Medication will be required (same as above), but the time it is given will depend on what time they are admitted to hospital to be prepared for the operation.
If your child is on dialysis they will be disconnected from the homechoice/sleep safe machine in the morning at the usual time at the end of the treatment (except on this occasion there will be no last fill, the peritoneal cavity will be left dry).
We understand you may feel like you are riding an ‘emotional roller coaster’ at this time. This day may have been planned and or anticipated by your family for many months now. We aim to make the following days as comfortable as we can for you and your child. If you have any questions or concerns that you would like to discuss with any members of the renal team, your nurse will be able to organise this.
When it is time for your child’s operation, a nurse will escort you and your child to the operating suite on Level 4 of the hospital. Your child may wish to walk or be carried down by you or your partner.
In the reception area, the theatre nurse will greet your child. They will check your child’s ID band and ask some necessary questions about your child. This area can be cooler than the ward. If your child needs a blanket, please ask. The surgeon performing the transplant surgery will most probably speak to you at this time in order to gain consent for the surgery (if not previously gained) and to give you the opportunity to ask any questions, especially if your child is receiving their kidney from a deceased donor.
While your child is in surgery, you may like to wait in either of the parent lounges (PICU or theatre/recovery). Please inform the nurse where you will be and leave your contact details, so your child’s surgeon can speak with you after the operation. The operation usually takes three to four hours.
Admission to Paediatric Intensive Care Unit (post-operative phase)
Day one to two
After the operation, your child will be transferred to the Paediatric Intensive Care Unit (PICU) on Level 4. This is usually for a period of 24 to 48 hours.
A PICU nurse will call you as soon as you can see your child. You will be able to stay at the bedside with your child whilst they are in PICU. Fold-up beds are provided in the PICU parent lounge for overnight stays.
It is preferred that only two visitors are at the bedside with your child at any one time. Please discourage visitors with coughs or colds or other illnesses from visiting your child.
Please be aware that it can be distressing when you see your child in PICU for the first time after the transplant operation. Your child may be sleeping, crying or be quietly awake. Often children will begin to cry when they see a parent or familiar face.
Being with your child in the PICU is very important — your child will need the comfort and reassurance of your familiar caring face.
While in the PICU, you can expect your child to be connected to the following lines and tubes:
- a monitor to measure vital signs such as temperature, blood pressure, oxygen saturation, and heart and respiration rate
- a central line coming from a vein in the neck. This line is used for giving fluids and medicines and for taking blood tests
- other IV lines in the arms also for giving fluids and medicines
- a urinary catheter to drain urine from the bladder
- wound drainage tubes. These drain blood and fluid from around the new kidney.
It is not unusual for your child to appear very puffy around the face and body in the first few days following surgery as they will have been given a lot of fluids to keep a good supply of blood circulating to the new kidney to keep it working and producing lots of urine.
The cut made through the skin where the new kidney was put in will be completely covered by a dressing. This dressing will stay in place until the surgeon asks for it to be removed. The stitches used to close this cut are usually dissolvable and will be absorbed under the skin. If your child has a Tenckhoff Catheter for peritoneal dialysis, it will stay in place so that it can be used if there is a delay in the new kidney starting to work. An ultrasound scan will be performed in PICU to check on the new kidney.
The physiotherapist will be involved in the care of your child and treatment will commence while they are in PICU. It is very important that your child begins to move, cough and breathe deeply to prevent complications such as chest infections.
During the time that your child is in the PICU they will receive high level care from the specially trained nurses and doctors working there. They will work closely and communicate regularly with the nephrologist caring for your child. The surgeon who performed the transplant operation will review your child’s progress regularly.
The pain management team will be involved to make sure your child’s pain is managed in the best way. Your child will be given some strong pain relieving medicine via one of the intravenous lines for the first two to four days after the operation.
Discharge from PICU
Your child will be discharged from PICU when:
- there are no problems with your child’s body temperature
- your child’s pain level is well managed with prescribed pain relief
- there are no problems with the line in your child’s neck and arm/s that are used to give your child fluids and medicines
- there are no signs of wound infection
- your child is taking some fluids by mouth
- the tube that is draining the urine from your child’s bladder is working well
- the doctors are happy with your child’s overall progress
It is not unusual to wonder if you have brought a different child out of PICU to the one that was admitted. Children are often tired, cranky and difficult to get along with in the first one to two days after discharge from PICU. This is because of the constant interruptions to sleep that they experience in the first postoperative 24 to 48 hours.
Some of the tubes and monitors attached to your child will be removed before your child leaves PICU; others will remain in for a while longer and come out over the next few days in the ward.
Early post-operative phase
Days two to five
Your child will continue to need to be monitored closely when they return to the ward. The following lines will still be in place at the time of transfer:
- intravenous line in arm/s
The nurses caring for your child will be paying close attention to the fluids in the intravenous lines and the amount of urine that is draining from the catheter. It is normal for your child’s urine to be bloodstained for up to 48 hours after the operation.
Your child will be weighed in the morning and evening.
The amount of fluid being given to your child through their intravenous lines will begin to be reduced as your child is able to start drinking fluids by mouth. When the nephrologist is satisfied that your child is able to meet their daily fluid goal, which is likely to be 1.5 to 2 litres (or more), the nurse will remove the remaining intravenous line/s. One line may remain in your child’s arm, capped off, as a precaution in case it is needed again if your child struggles to drink the amount of fluid needed to keep a good amount of urine flowing from their new kidney.
The strong pain medicine in the drip will continue for one to two days but the doses will be gradually reduced and the doctor will order extra pain medicine for your child to take by mouth as this happens. While the pain medicine is running in the drip, your child’s vital signs will be checked regularly, including overnight. The frequency of observations will decrease to every four hours when the strong pain medicine is discontinued.
Daily blood tests will be taken for a number of weeks following your child’s transplant. This is to check how well the new kidney is working and the levels of drugs being given to stop your child’s body from rejecting the kidney are not too high or too low. This blood test is always taken at 8 am—even after discharge home.
The physiotherapist will continue to visit twice daily. Your child will be sat out of bed for a short period of time in a comfortable chair and taken for a walk when the physiotherapist feels that the time is right (often around day two to three). Deep breathing and coughing exercises will be very important and the physiotherapist will probably ask you to encourage your child to do these exercises at various times throughout the day. Children recover faster if they mobilise, so please encourage your child to get out of bed if we recommend this.
The transplant surgeon and the nephrologist will visit your child daily. The nephrologist will keep in close contact with the nursing staff and will phone or visit again in the evening. The surgeon will ask the nurse to take the drains out when he is happy that they are no longer draining a lot of fluid. The drains are usually removed over a two to three day period of time.
Your child should be taking some fluids by mouth when transferred from PICU. They will commence a light diet when able to tolerate fluids and when the doctor gives the order to do so. It will be a great help to your nurse if you can keep a record somewhere of everything that your child eats and drinks.
When your child’s catheter is removed (around day five or six) your nurse will ask that you measure the amount of urine each time they use the toilet. If your child is not yet toilet trained this will mean saving nappies to weigh. This helps the nurses and doctors to check that your child’s kidney is working well.
A daily wash in bed will be given until your child’s central (neck) line and drain tubes have been taken out. When the lines are removed they will be able to bath or shower again.
You will notice that there are a lot of medications for your child to take at very regular intervals throughout the day. It is very important that your child takes their medications. This part of your child’s treatment is not negotiable — they must take their medication.
Failure to take medications, especially medications that prevent rejection, will result in loss of the transplanted kidney. This can all feel very overwhelming for parents, worrying that they will give the right amounts, of the right medication, at the right time of day. The renal nurse and our pharmacist will help you to learn about the various medications long before your child is discharged from hospital.
Day six and onwards
By the end of the first week, most of the tubes that were attached to your child will have been removed. Their pain should be controlled with medicine taken by mouth; the amount of medicine needed should be starting to decrease.
They should be moving regularly around the ward and perhaps attending Lady Cilento Children’s Hospital School for a morning or afternoon. If unable to attend school downstairs the ward school teacher will be engaging your child in learning activities on the ward.
The nurses will still be keeping a close eye on and recording in the chart, what your child is eating and/drinking and how much urine she/he is passing each day. They will also be watching for any signs of infection or rejection of the new kidney.
Observations of temperature, blood pressure, heart and respiratory rate will be recorded every four hours and a daily weight measurement will be done.
Blood tests will continue to be done daily. The dose of anti-rejection drug, Tacrolimus, can change from day to day. It is important that the blood test is done before the morning dose of Tacrolimus is given in order to measure the level of the drug in your child’s blood. High levels of this drug can damage the new kidney; low levels can lead to rejection.
The transplant surgeon or a member of the surgical team will continue to visit to check that the wound over your child’s new kidney is healing well, however by this time the nephrologist is the doctor you and your child will be seeing most regularly. The renal dietician will also make a time to visit and talk about any changes you may need to make to your child’s diet following the surgery and when you go home.
You will be learning about your child’s medications: what times and how they are given and what side effects to look out for. The pharmacist will also help you with this learning process.
You will also learn about the complications that may occur following transplant and when and how to contact the hospital for help or advice.
The renal nurse will be the person responsible for most of your education before discharge.
Transition to home/hospital-based accommodation
Discharge from hospital will be considered by your child’s nephrologist when:
- your child’s temperature and blood pressure are within normal limits
- your child is eating and able to drink to target volumes
- the surgeon is happy with your child’s wound healing
- the nephrologist is happy with the function of the transplanted kidney
- your child is moving well with minimal pain
- your child’s weight is stable
- the nephrologist is happy with your child’s daily blood results and medicine schedule
- you feel well informed and comfortable enough to care for your child outside the hospital.
It is very important to continue to very closely monitor your child’s health and the function of the newly transplanted kidney for the first year following transplant.
Visits and blood tests are especially frequent for the first three months i.e. daily for the first month, with less frequent visits and blood tests as time passes. However, your child will need at least monthly blood tests indefinitely.
If you and your family reside outside Brisbane you may need to spend the next five to six weeks staying in accommodation close to the hospital. This can be arranged through the hospital’s welfare team and your renal nurse.
If you are staying at the above mentioned accommodation your child (and siblings) will be eligible to attend the Lady Cilento Children’s Hospital School. Ask our staff for more information about this.
It is very important that you are on time for your blood test at either Outpatient Pathology (Level 3), Medical Day Unit MDU (5b) or ward 10b.
It is also important that your child’s medication be given immediately after this morning blood test.
If for some reason you were late giving the medication, please advise the person taking the blood as this needs to be noted on the pathology slip.
Have you discussed the following with your nurse before going home?
- contact details at the hospital in case of questions or needing medical attention
- the plan for follow-up after discharge
- When and where to go for blood tests
- how to get blood results
- how to avoid infection
- dental care
- caring for your child in the sun
- healthy eating after a renal transplant
- giving your child’s medications safely and side effects of which to be aware
- going back to school
- does your child play sport and need a referral for a kidney guard to be made.
When to seek help immediately
- If you notice any redness, swelling, bleeding, increasing pain or discharge from your child’s wound
- If your child has a temperature of more than 37.8oC
- Vomiting soon after medications have been given
- Any ongoing vomiting or diarrhoea
- Pain or burning when your child passes urine
- If your child’s urine is smelly or cloudy looking
- Decrease in the amount of urine your child passes
- Your child has had a close contact with chickenpox virus
If any of the above concerns occur during business hours please contact the renal team via the hospital’s switchboard – 3068 1111.
After hours or on weekends, contact the medical registrar on call via the hospital switchboard.
If you need to bring your child in to the Lady Cilento Children’s Hospital’s Emergency department, it will help staff if you contact them to let them know that you are coming.and give them your child’s UR number.
Child and Adolescent Renal Service
Lady Cilento Children’s Hospital, 501 Stanley Street, South Brisbane
t: 1300 762 000 (8.30am – 4.30pm, Mon to Fri)
Ward Clerk Medical Day Unit (MDU)
t: 3068 1717 (8.30am – 4.30pm, Mon to Fri)
t: 3068 1626 (8.30am – 4.30pm, Mon to Fri)
t: 3068 1721 (8.30am – 4.30pm, Mon to Fri)
After hours, contact the nephrologist on call through the hospital switch
t: 3068 1111
In an emergency, always call 000.
If it’s not an emergency but you have any concerns, contact 13 Health (13 43 2584). Qualified staff will give you advice on who to talk to and how quickly you should do it. You can phone 24 hours a day, seven days a week.