Another ear infection

I wish I was kidding...but I'm not.

Last Wed night (Sept 21) her right ear started bleeding.

On Thur I called the ENT (I skipped the pediatrician) and the nurse called in drops.

We have been doing the drops.  But I am still getting blood on the cotton ball every morning and night.  Yesterday (Wed Sept 28) she had an ENT appt (it had been scheduled for months as a follow up for her surgery she had on July 13 replacing one of her ear tubes).

We first went in to have her hearing checked.  The checked it in the fall of 2010 (I think???  I'd have to look it up) she failed.  She has always passed the pass/fail test until this one.  I was supposed to get it rechecked a month later...but...well...here we are (it never got done).  I wasn't worried about it.  I know she can hear.  And I know she has hearing loss.  So I wasn't worried about it.  Maybe I should have been...but it seemed like just one more Dr.'s appt.  Water under the bridge.

Anyway, back to the current story, we took her in (before the ENT appt) to get her hearing checked.  Because of her current ear infection and a lot of debris in her ears the audiologist couldn't do it.  She said go down to ENT and maybe after he cleans things out he will send you back up here.

So we went down to ENT.  He cleaned a bunch of stuff out.  They have these freaky attachments that they hook up to the suction machine and he sucked out a big blood clot.  He said that the tube was blocked so the drops we had been using for a week weren't really getting to where they needed to be.  He said to continue the drops for another week.  We have another appointment for a hearing test and ENT appt in 3 weeks.

If it comes back or doesn't get better...then he wants to culture it before we start more drops.  If the culture is resistant to antibiotics then we would have to treat with stronger drugs.

Dr. Gabrielson (her pediatrician) has done at least 2 ear cultures in the last 6 months.  They have shown infections but nothing that is resistant to antibiotics.

If she keeps having ear infections and it is not resistant then he wants to do a CT scan to see if there is some sort of abnormality growing there.  If there is then it would require surgery (about on the level of tonsils and adenoids---which was a really rough one).

I asked if her earwax (she always has a ton) could be blocking the tubes thereby causing infections.  So do we need to use drops or other methods to clean her earwax out regularly.  He said no.  It is unknown if it is safe to use the earwax drops when you have tubes in.  He said it was not an earwax problem.  It was an infection.

This morning her cotton ball was soaked through with drainage...which is good...we hadn't been seeing that for the previous week.

She was also crying this morning and she has slept all day.  I don't think she is feeling good.

The other appointment we had yesterday was Dr. Nancy Murphy's Special Care Clinic.  It was our first time at this clinic.  I had heard good things about a year earlier from Chris R.  (another special needs Mom).  But it just seemed like another appointment to fit into a busy schedule.

During her most recent hospitalizations Dr.'s and nurses and social workers and chaplains etc, etc...kept bringing it up.  And saying we should try it out.  So we agreed.

It was a great appointment with a great Dr.

The purpose of the Special Care clinic is to help families with complicated medical needs and make their life easier.  It is kind of like the concept of a "medical home"  if you are familiar with that.

A Medical Home is where the family and all Dr.'s communicate and are on the same page.  So for example if Ellie is sleeping more than usual all of her Dr.'s work together to figure it out.  Neurology says maybe it's seizures.  Rehab says maybe it's pain.  Pulmonology says maybe it's lack of sleep.  Etc...Then they work together to form a plan of attack.  It is a great theory.  But I don't see how it could possibly work.  The Dr.'s are overly busy.  So I have never put much thought or effort into the concept of a Medical Home because I don't think it is an attainable reality.  So the responsibility falls on me to coordinate all of her medical needs and concerns, get her into the appropriate Dr.'s and sort out what I think is the best plan of attack.

For the first appointment in the Special Care clinic they schedule an hour (we took 2).  Dr. Murphy was so patient and kind.  I was very open and honest with her such as...I told her that she has night arm splints but we haven't been using them because they are a pain to adjust correctly.  Etc...  She never acted like "You're such a bad Mom, I can't believe you aren't doing everything possible to help your child".  She was more like "It's fine, you're busy, Ellie is happy and healthy and you are doing such a great job taking care of her."

I cried several times during the appointment because it is hard to rake through so many hard issues in such a short amount of time.

We discussed her diarrhea/constipation issues.  We give Ellie lactulose morning and night and a suppository every morning.  It takes all day for the suppository to work.  If we put it in at 7:30 in the morning, she won't have a bowel movement until 4-6 PM.  She said that is way too long.  Maybe we need to try something else.  First she thought we should try giving the suppository at dinner time to hopefully work before bed.  I don't know...I still like giving it in the morning.  I don't want her to go during the night and be sitting in it all night. It's a complicated thing that we're still thing to sort out.  She gave us a few things to try.

We talked about her spine and surgery which will be sometime in the future.

We talked about Ellie growing bigger.

We talked about her contractures and muscle tone.

We talked about "growing up".

A few of the Dr.'s that we follow up with she said...I don't think you need to go to them...I can write your prescription refills and save you a trip.  Wow!  Yea!  Like she said Gastroenterology (Dysphasia) meets on the same day as me (Dr. Murphy) I can just talk to Molly (Gastro) and have her pop in rather than having a whole appointment with her.  These steps are fantastic.  Ellie has 15-20 specialists that all want to see her (mostly every six months) (a few are every year) it is a lot.

She is going to call one of her Dr.'s (endocrinology) and see if we can start a plan of action right away rather than wait until our next appointment with endocrine in Dec.  I know that was vague...but I'll talk about it another time.  The point is...she is doing some of my leg work for me.

Another HUGE help that her clinic is offering is to try and schedule appointments back to back on the same day.  This is difficult to do.  But she thinks she can work it out and pull some strings.  Woo Hoo. We love those kinds of strings.

They also try and help you acquire any equipment you need though applying and appealing insurance.  Or other funding sources.

They let you know about resources that might help or be of interest to you.

She said we can call or email her with any questions or problems or anything.  I am so excited.  It was great.  She is truly trying to help and I believe she will succeed.

Have any special needs parents seen an immunologist at PCMC?  Who? and would you recommend them?  We see one in Layton, but he is not a pediatric one and is not used to dealing with complicated medical issues so I need to get a second opinion.