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I am a very proud mama of two children. I have done a lot of reading over the past 7 years and worked very closely with our wonderful pediatrician and nurse practitioner and have learned some useful medical information that I hope other parents will find helpful. I believe parents to be their child's best advocate. We know their "normal". I believe it is our responsibility to understand their medical conditions, symptoms, lab results and diagnosis so we can ask good questions and ultimately help in the good health of our children. **I am NOT a doctor nor have I had any medical training. I am simply sharing information helpful in my specific situation.** Welcome to "Pediatric Mama"!

Tuesday, February 28, 2012

Tonsillectomy & Myringotomy

My daughter Abby (age 6) recently had her tonsils removed (tonsillectomy), ear tubes inserted (myringotomy / tympanostomy), ciliary bioposy and sinus irrigation. The recovery has been different for her than someone with just one of those done. Here is our experience and some suggestions if your child has this / these procedures.

We met with the Anesthesiologist (doctor providing sedation) right after check-in. A nurse wanted pre-op bloodwork (per her understanding of doctor's request) before my daughter had received any anesthesia. Fortunately, the Anesthesiologist pushed back and agreed to do the labs after she was under anesthesia (and consulted with the doctor for consent). He gave my daughter some oral "happy / sleepy" medicine and she doesn't remember not being with us. It made me feel a lot better knowing that she didn't have to be afraid of the blood draw, IV or leaving us. We were there when they wheeled her in to surgery and we were there when she awoke from surgery.
TIPS:
1. Before the day of surgery stock up on cold foods (popsicles, pudding, yogurt, jello, applesauce) and ice packs (for use on the neck).
2. If you see any other doctors / specialist, ask them the week before your child goes in to surgery, if there are any labs they would like to have done while your child is under anesthesia. I recommend going and picking up the lab orders from each doctor rather than relying on faxing or mailing to the hospital.
3. Bring anything that makes your child comfortable (wear PJs, bring a favorite blanket, stuffed animal, etc).
4. If your child is having surgery or any procedures where they will be under anesthesia anyway, ask for oral "happy / sleepy" medicine prior to any blood draws, IV insertion or being taken from you for surgery. It make for a much better experience for your child and you.
5. If that isn't any option (but push hard for that first) then ask for numbing cream to be placed any areas that may be poked prior to being under anesthesia.
6. Ask the doctor / surgeon what he is doing on your child (one last check that you are on the same page), ask if there will be any prescription pain medication and anti-nausea medication given for at home use and what you should expect for recovery both in hospital and at home.

Her surgery and procedures took only 45 minutes and then the next 2 hours were in recovery. In recovery Abby had the normal "attachments". It helps to know what to expect when you first see your child. She had an intravenous (IV) tube on her arm, which had plastic tubes delivering fluids and medication in to her bloodstream, three stickers on her chest to monitor her heartbeat, a blood pressure cuff on her arm and a pulse oximeter (clothes pin looking clip) on her finger to monitor her breathing. We spent almost an hour in the recovery "critical care" area which was an open area shared with up to 12 other children. Once "stable" and awake she was moved to a recovery / discharge room where a nurse monitored her pain level and fluid intake. The nurse went over discharge instructions and medications there. Make sure you are very clear on the "after care" and ask as many questions as you have. You should leave with a clear understanding of permitted / expected activity, diet, dressing / surgical site care, bathing, medication and follow up appointment.

After we were discharged we stopped at the pharmacy and got the pain medication prescription filled. The anesthesia was starting to wear off and we wanted to get the prescription pain medication in her system as quickly as possible to prevent a spike in pain.
TIPS:
1. Don't wait to get the prescriptions filled. Do it on your way home from the hospital.
2. Stay on top of the pain medication especially. If it says "every 4 hours as needed" give every 4 hours - don't wait. It is too painful for the child and once they are hurting it can be next to impossible to get the pain under control if you've missed dosing times. At least for the first 48 hours give it round the clock as instructed (in our experience that was the best choice).
3. If you look in the back of your child's throat the day of surgery or day after it may look black. That is from the cauterization (the use of heat to clot the blood after surgery). After the first few days the back of the throat will look white. That is the scab that has formed and will fall off between days 5 - 7.

For her sore throat due to the tonsillectomy and adenoid biopsy we had lots of cold foods ready and a couple of ice packs for the outside of her neck. Abby didn't ask for food or drink so we kept ice water ready and offered her sips often.
TIPS:
1. Drinking is more important than eating. Offer your child sips of something often and round the clock to prevent dehydration.
2. Call your doctor with any questions - better safe than sorry. Don't worry about being annoying. It's your child - do what you need to.
3. Your child will lose a little weight during the recovery period due to decreased eating. The weight will more than likely come back when your child fully recovers.

Because Abby had ear tubes inserted and some biopsies done she had some bleeding from her ear and nose. I called the doctor a few times over the first week to be sure I understood what was normal and when to be concerned. She had prescription antibiotic ear drops to use and it was crucial we used those to encourage healing and prevent infection. We also were instructed to use saline in her nose to keep it moist, encourage healing and rinse out blood.
TIPS:
1. Be aggressive with the ear drops and nasal saline.
2. Talk to your child about the color of the drops when they run out of the ear or nose. They may be blood tinged but explain that it is ok and it is just cleaning out the "junkies".

The first few days were rough...and normal according to others I've talked with who had this done. Day 3 seemed to be our worst. Abby didn't want to eat or drink, was nauseous and ran a fever. We were afraid she would become dehydrated and in addition didn't want to give her pain medication on a completely empty stomach. The following couple of days were improvements then came the falling off of the scabs on the back of her throat. Sounds gross but is completely normal. For some reason she seemed a little more sore than the previous couple of days. I understand that the ups and downs for pain and improvement are completely normal. For the average child they will miss 1 week of school and be recovering for 10 - 14 days (no recess or PE during this time).

She is now on Day 9 and is expected to return to school tomorrow. She would have gone sooner but developed a cough / possible upper respiratory infection. We are waiting on the results of her labs and biopsies but she seems to be improving overall with pain decreasing each day.
TIPS:
1. Get a "School Excuse" from your doctor for missed days and orders for limited activity at school (no recess, no PE, etc).
2. Email the school nurse, your child's teacher and PE coach so they know your child is recovering from surgery and has limitations or medical needs / concerns.

I have high hopes for Abby's improved health after this. I initially thought I wanted the procedures, then doubted myself then re-talked myself back in to it because I want good health for her. These procedures were a decision (not made lightly) with input from my husband and me, our daughter's pediatrician and specialists.

The next steps for Abby are a full recovery from this and then the beginning of weekly immunotherapy (allergy shots). The idea being that with the removal of the adenoids and tonsils (where bacteria had been collecting), the insertion of ear tubes (to properly ventilate and prevent infections), the irrigation of the sinus cavities (to clean out the area) and then the weekly immunotherapy we can get her and keep her healthy.

I'll keep you posted!

Sunday, February 12, 2012

After 6 years of recurrent infections (chronic sinusitis, allergic rhinitis and asthma, lung infections, strep and a hospitalization for Pyelonephritis - kidney infection and now chronic dermatographic urticaria - hives) we FINALLY have a plan to stop the allergies, prevent the infections, calm the immune system, cease the hives and provide my child with a healthier happier life...my hopes are high!

This week we visited a new ENT (ear, nose and throat doctor) and a new Allergist. While I'm scared of the "action plan" I'm more scared of her continued illnesses so the plan is:

1. Allergen immunotherapy (allergy shots for 3 -5 years)
2. 2nd Myringotomy / tympanostomy (ear tubes inserted)
3. Ciliary biopsy (check to see that the mucus is being moved out adequately)
4. 2nd Adenoidectomy (removal of the adenoids if regrowth)
5. Tonsillectomy (removal of tonsils)

This plan was agreed upon after our pediatrician, infectious disease doctor, ENT doctor and allergist unanimously agreed.

TIPS:
1. Ask LOTS of questions - of doctors and of parents with children who have had these treatments and surgeries.
2. Research / read several articles on the treatments and surgeries. Don't rely solely on information from others.
3. Keep your binder updated and write notes after each visit so you don't forget anything you learned.
4. Make copies of labs, doctor's notes or medical history you have for the doctors you see. Don't assume they already have the information or have talked to your other doctors.
5. Stay as optimistic as possible. Talk to your children as honestly as is age appropriate...you want them to always trust what you say.