The peadiatric surgical ward

 

In the paediatric surgical ward, you can more easily stay in your child’s room. When your child begins to get out of bed, to eat and to buzz around, he will very soon want to play with you. This is the beginning of a learning process for you with respect to his new condition (his needs, his limits etc.) and the treatments that he needs. He must take a large number of drugs and you will familiarise yourself with them little by little: the names, the doses, how to take them etc. You will also learn to take the blood pressure and you will know the value and the significance of the different examinations better and better. You will thus closely observe the development of the transplant. Little by little, your child will be able to leave his room, go for a walk and resume a normal activity.

You might see a change in the physical appearance of your child due to the taking of drugs. Do not worry, this is temporary! His face and his cheeks may get bigger and red due to cortisone and he may also show tremor due to Prograf®. These side effects vary from child to child, but after some months – when we can reduce the drugs – all these effects will diminish and disappear little by little.

YOUR EVERYDAY LIFE

The transplant team arrives in the ward in the morning at about 8 o’clock. In general, the physicians then decide which analyses and procedures should probably be carried out during the day. For you, this is the first opportunity to ask questions and to express your concerns towards the nurse or the physician who is in charge of your child. The doctors’ round takes place between 10 and 11 o’clock and we encourage you to be present at that moment since this is the best opportunity for you to get answers to all your questions. We recommend you to make a note of the questions that come to your mind throughout the day so that you can ask them during the daily doctors’ round.

Other activities take place during the day. The nurses check the vital signs several times a day. The respiratory physiotherapist gives treatments that encourage your child to breathe deeply and to cough in order to prevent pneumonia. When your child is not able to get up, he must turn round in his bed on one side, then on the other, every few hours. Sitting up and walking contributes to accelerate recovery after the operation, this is why your child is encouraged to move as soon as possible.

You will very quickly be able to assume your child’s routine care, such as washing, feeding, brushing his teeth and change his nappies, in case of a young child. In order to prevent an infection as a result of the transplant, we remind you that good hygiene is essential when caring for him. Until the incision has completely healed up, you must always use a washcloth to wash your child. We will then evaluate together with you from what point in time on you can give him a bath or a shower. It is also important that your child’s nails are clipped close to prevent him from damage his skin and to scratch or to pull away the dressing from the scar.

A good nutrition favours healing and growth. In general, when the liver works properly, your child can eat normally after the transplant; special preparations are normally not required. It is important to brush your child’s teeth after every meal and before he goes to sleep in order to prevent caries. Finally, the nurse will quantify your child’s urinary losses to help the physicians observe his fluid balance. To this effect, your child’s nappies must be weighed and children who use the toilet must urinate into a special receptacle so that the urine can be measured. So remember to ask the nurse whether you should keep the nappies for weighing!

HOSPITAL HYGIENE MEASURES

Your child is alone in a hospital room. When he leaves his room to go to areas with a high density of people (cafeteria, US room, garden,…), he must wear a mask. He may take it off in his room.

The parents can wash their child with filtered tap water and normal soap.

Food should not be kept too long in the room, it should rather be consumed quickly. When your child does not eat his meal at once, give it back to the nursing assistant or the nurse. After the meal, you should get into the habit of performing your child’s dental hygiene. Put the pacifiers or soothers as well as the nursing bottles in a cold sterilisation solution for one hour. The solution is changed once daily by the nursing assistant. Bedding is changed once daily (sheets, pillowcases, undersheet,…) and the complete bed once per week.

While your child is hospitalised, you should give him Henniez bottled water. Once opened, you can keep it for 24 hours at room temperature and then you must throw it away. YOU MUST NOT GIVE HIM HOSPITAL TAP WATER! After his return home, your child may again drink tap water.

RETURN TO NORMAL LIFE AT THE HOSPITAL

Even before leaving the hospital, your child and you must start trying to return to a more normal lifestyle. As the most important team members, you, the parents, have high responsibilities. Several team members will thus teach you how to take over a large portion of your child’s care.

There are several tasks that you will learn to perform at the hospital and that you will continue to perform in part after your return home, including:

DETAILED LIST OF FOOD AND DRINKS

This means that you have to write down the quantities of fluids and food that your child drinks and eats. The quantity of fluids taken in by your child provides important information to the physicians and the quantity of food that he consumes enables them to verify that he receives enough calories and proteins.

DRUG ADMINISTRATION

After the graft, your child must take about ten different drugs and he must continue to take most of them at home. First, the nurses will administer all drugs. You should take advantage of that fact to progressively ask the name of every drug and what it is taken for. In the context of your preparation for your return home, the referral nurses for children with liver disorders or liver transplanted children and the ward nurses will teach you how to administer the drugs. It is your responsibility to learn what every drug is taken for, when it should be administered (drug schedule), how it should be administered (alone, on an empty stomach, …) and in which quantity (dosage). When you leave the hospital, you will be able to administer all the drugs of your child in due time and respecting the indicated doses. As long as you are at hospital, you should always verify the drugs that you give to your child with the nurses. In order to learn how to record the administration of the drugs, it is very important to use the drug table handed over to you by the nurses and to modify it in case of any change of medication. Dosage may change frequently, directly after the graft. This results in the fact that the orders that are stated on certain drugs may not be correct. To help you and to help the other caregivers avoid errors when administering drugs, it is important that you always have the most recent drug table with you and that you use it every time you administer drugs to your child.

One year after the graft, your child will normally have to take 1 to 3 drugs only, depending on his development.

ABDOMINAL SCAR CARE

Three weeks after the surgery, it is normally no longer necessary to put a dressing on the scar. When the wound heals well, you can start to apply Bepanthen ointment, rubbing it gently in along the scar.

CENTRAL CATHETER MAINTENANCE

As it is absolutely necessary to frequently take blood samples and as the children often need drugs administered by intravenous route, an indwelling central venous catheter may be inserted about ten days after the graft. This catheter is generally called Broviac catheter (that comes out from the skin) or Port-A-Cath (PAC, that is completely under the skin). It is inserted into the large vein of the neck and then tunnelled under the skin. Your child will keep it at home and we will explain to you how to live with it. Home nurses will also help you to maintain this catheter. In general, the Broviac dressing should be changed every 7 days and the PAC dressing every 10 days. However, when the dressing is loose, wet or dirty, it must be changed immediately.

TAKING THE TEMPERATURE

The children’s temperature is taken regularly at hospital. Before your child leaves the hospital, we will teach you how to take his temperature. At home, it is not necessary to take the temperature every day. You should do so only when you have the impression that your child is sick or when he seems warm. The temperature of transplanted children must be taken under the arm, that means in the armpit. When you do not have an armpit thermometer (that directly calculates the temperature taking into account the fact that it is taken in the armpit) at home, you must get one. When your child is sick, you must always take his temperature before calling the Centre. A child’s normal temperature ranges between 36° and 37.5°C.

BLOOD PRESSURE

Your child’s blood pressure might be increased after the graft and he might have to take a drug to lower it. Increased blood pressure is a side effect of some drugs that your child probably must take, in particular Prograf® and cortisone. His blood pressure will probably normalise in time and he will certainly no longer have to take this hypotensive drug (able to reduce the pressure in the arteries). When your child’s blood pressure is increased while he is at hospital, a treatment for hypertension will be initiated. As long as this treatment is carried out, it is important to check his blood pressure at least twice daily before administering the hypotensive drug. When you are back home, you must write down the pressure every day and bring this data with you to the hospital to be examined by the transplant team. We will give you instructions on how to proceed in case of increased or decreased blood pressure.

In summary:

  • Always check your child’s blood pressure before you make him take the drug for hypertension. Every time you take his blood pressure, write down the day, the time and the indicated value as well as the time he took this drug and its dose. Follow the instructions given by your referral nurse regarding the administration of the drug for hypertension. Record the blood pressure values in a notebook.
  • Always bring this data with you to the hospital or to your physician.

 

PHYSICAL ACTIVITIES

Children start moving as soon as they feel fit. Three months after the graft, your child may cautiously resume non-competitive and gentle physical activities like cycling, gymnastics, dancing or swimming.