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5/5/92 (Day 171) — Preemies at Home, day 38

May 5, 2011

Here's Molly, finally home after her heart surgery. You can see her chest scar (affectionately known in our family as her "zipper"). Her fair skin turned out to be a big advantage with this scar, as it faded quite a bit is not very noticeable. She has had to be careful about exposing it to the sun, but aesthetically the scar hasn't bothered her. Recently, she has experienced quite a bit of pain around her scar, which is apparently from nerve damage. We are seeking treatment. Rereading the post-surgery discharge instructions (below) brings back a lot of scary memories, and the clear feeling of gratitude that I had at the time that Molly was still an infant (I can't imagine having to go through this with an older child and dealing with all the restrictions), and also that we had help — especially with watching for signs of trouble.

Instructions for Patients After Cardiac Surgery

I. Activity — your child should progress to usual activities gradually, as outlined below.

A. For the first two weeks after discharge from the hospital your child can participate in quiet activities with rest periods in between. If there is one flight of stairs in the house, your child can go up and down slowly, preferably in the presence of parents.

B. There should be no strenuous activities (such as cycling, swimming, or roughhousing) for six weeks after surgery.

C. The major reason for activity restriction is to avoid injuring the area of the incision, so that it may heal properly. (The breast bone or sternum will take six weeks to ehal after surgery.)

D. With infants, there is no need to restrict their normal activity. IN most children, crying is not harmful. If your child’s surgery did not correct his heart and crying causes him to turn blue, then it is necessary to avoid letting him cry for long periods.

II. School — Your child can return to school three to six weeks after discharge from the hospital, but should not participate in physical education activities until permission is given specifically by the physicians. You may ask you physician at the follow-up appointment for permission to return to school.

III. Diet — Regular, unless otherwise ordered. Your child should avoid using much salt. Salt causes your body to retain water. Limiting the amount of salt used is a good lifetime habit.

IV. Bathing — (as below, unless otherwise ordered).

A. At first, your child should be sponge-bathed, keeping the incision dry.

B. One week after surgery, your child may take a bath or shower and the incision should be washed with clean soap and water.

C. Hair may be washed at any time.

V. Care of Incision — (As below, unless otherwise ordered.)

A. All external stitches will have been removed before discharge, unless otherwise mentioned.

B. The incision should be kept dry for the first week after surgery.

C. After the 7-day period, the incision should be washed with clean soap and water. Be sure the incision is dried after washing. The white paper tape (steri-strips) should be taken off after the 14-day period.

D. There will be no need for a band-aid over the drainage tube wound. If a band-aid is used, it should be changed on a daily basis.

E. Avoid over-stretching the incision for about 2 weeks after discharge from the hospital.

F. Your child may need to be encouraged to stand up straight (he/she may want to bend to protect the incision).

G. If your child’s incision is on the side, encourage him/her to use and raise the arm on that side.

H. The incision should be protected from direct sun exposure for six months with the use of clothing and sun block (SPF 45 or greater) to prevent burning and irritation.

VI. What to Watch For — Please watch for the following signs in your child after discharge from  the hospital.

A. Temperature: A fever greater than 101° F or 38.4° C for two consecutive days without any signs of a cold, may be a sign of some type of infection.

B. Rapid or difficulty in breathing.

C. A persistent cough.

D. Puffiness of the face or swelling of the legss.

E. Increased feeding problems.

F. Lethargy, extreme tiredness, loss of energy.

G. Irritability.

H. Excessive sweating.

I. A change in skin color (pallor or blueness).

J. The would should be watched for increased redness or drainage from the incision.

K. Other: If any of these problems occur, or any other illness appears present, please seek prompt advice from your surgeon.

VII. Medications to take home:

1. LASIX — 2 ccs, 2 times a day

2. Nitropaste 2 cml every 2 hours (even hours)

If your child is on medications, bring the bottles with you for doctors’ appointments. The doctor may want to see them to recheck the order. If you need a new prescription, let him know at this time.

VIII. Miscellaneous Instructions

A. It is best for your child to avoid large crowds for the first month after surgery so he/she is not exposed to contagious illnesses.

B. No immunizations should be given for the first month after surgery. After that time, immunizations should be given as your family physician suggests.

C. Your child’s dentist should be notified of the heart condition. It may be necessary for your child to have antibiotics before and after having dental treatment, to avoid spreading bacteria from teh mouth to the blood and to the heart.

D. The Child Passenger Protection Act requires approved safety seats for children under the age of four years. We suggest you provide this for your child if driving home. If you are unable to provide this, check with your nurse regarding the infant seat rental program.

IX. Appointments — (Appointments will be made before discharge, if possible, otherwise you will have to call to make appointments.)

A. Rexamination of your child by the surgeon should be approximately two weeks after discharge. Date: May 15; Time: 1 p.m.

B. Your child should see the cardiologist four to six weeks after discharge. Dr. Cole.

X. A letter will be sent to your physician or pediatrician explaining your child’s condition.

2 Comments leave one →
  1. sydthewyd permalink
    May 9, 2011 3:57 am

    I love your blog. Absolutely heartbreaking but amazing.
    My mom had to go through open heart surgery 3 times with my little brother – at 6 months, 18 months and then 13. He will have to keep having them through his life as well. His next one could be anywhere between 10 and 30 years depending on the rate of calcification… I don’t know how my mom coped.. They even had to induce labor 6 weeks early and airlift her to a bigger hospital because they could tell his heart wasn’t healthy. I guess she and my dad just took it one day at time…
    in good news though, he is now 19 and healthy! Better than doctors ever thought he would be!
    Thanks again for sharing your story! It’s very inspiring.

    • May 10, 2011 9:17 am

      Thanks so much for reading and for sharing a little of your brother’s story. He is the same age as Isaac and Molly! That year must have produced very hearty stock. You’re right, your parents probably did just take things one day at a time. The thing is, when you are a parent, you don’t really have a choice. It’s our job to care for our children … forever. I hope your brother continues to do well. We’ll be thinking of him.

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