Another ruptured ear drum for F

After bringing C home from swim practice I noticed F was coughing.  It gradually began to increase through the evening.  I finally realized he's catching a cold.  Darn!  When I went in to wash his face there was blood on the washcloth.  It was coming from his ear.  So not only had he begun coughing somehow he'd soldiered on through some significant ear pressure and pain to tolerate a ruptured ear drum without so much as a grumble.

A trip to the doctor confirmed a significant rupture in the drum.  Poor F... I worry that scarring could inhibit his hearing.  It is his strongest sense.  This is the second for the year.  He had another in January.  He's such a trooper though.  He rarely complains.  He has such a remarkable attitude.  I just pray that this will heal quickly and we can help him prevent the ear pressure/rupture again.

So F gets a five day course of antibiotic and high dose prednisone burst.  I hope his tummy doesn't give him grief.  I also hope the prednisone burst doesn't bring super grumpiness and insomnia.  He's unbearable when he's under the influence of prednisone burst.

I'm hoping my boy recovers quickly from his illness so that he can enjoy all of the football the Thanksgiving holiday has to offer.

Prednisone and Asthma Update

Yesterday F had a follow-up visit with the pediatric pulmonologist.  We were there to discuss the use of the prednisone.  Prior to the appointment I had asked F if he felt that weaning off the prednisone had a negative impact on his breathing?  He communicated yes to me.  The outcome of our discussion was that it would be in his best interest to begin taking the every other day dose again.

The doctor came in and said that he had reviewed all of F's records and happenings over the last seventeen months (that's how long it had been since F had been to clinic).  We explained F's decision to wean down on the prednisone after being told by a handful of doctor's that the secondary skin infections had to do with immune suppression to which the this doctor replied "Do you have urinary tract infections? Do you have other infections sinus, ear, respiratory? Is your blood sugar out of control?" All questions were answered with a no. Although F has had his fair share of infections this year, he did not have an excessive amount of infections (the cysts by his ears... another story completely), other respiratory infections were secondary to viral illnesses, and his lab work looks great.

In a quick nutshell, the doctor spoke directly to F, Caroline, and I. He  informed us that this dose of steroid is low.  That other doctor's have somewhat of a narrow viewpoint that is isolated to there area and level of expertise.  That they are overlooking what is most important and that is the comfort of the patient.  That if F breaths easier his body is less stressed.  He will have fewer seizures.  He will be more comfortable which is ultimately most important.  He should be breathing comfortably enough to ENJOY his life and his life's daily activities.  Which F admits he's been less comfortable and it has impacted his activities.

I love that the doctor and F interacted together.  The doctor understood by facial expression and F's head turns all of his yes and no responses (we do not use high tech communication at appointments it's too fatiguing and stressful).  F was pleased with the doctor's plan for him. F was not happy when learned he can no longer be a patient in the clinic because of his age, but was relieved and pleased when he told F  he is only a phone call away and that his primary care doctor or any other doctor is always welcome to call and consult with him about his respiratory needs.  We have to be diligent and find a primary care doctor who is willing to put the focus on keeping F comfortable to enjoy his daily life and not on solving whatever problem is right in front of us for that moment be it a skin infection, ear infection, or cold.

F needs to be cleared for surgery to have his preauricular cysts removed.  Due to the increased inflammation he developed from the use of the lower dose of prednisone from the weaning process F needs a five day prednisone burst to get it under control and then he'll return to his regular 10 mg every other day for his maintenance dose.

Overall this was a valuable learning experience for me, but mostly for F.  I think it built F's confidence in himself and his abiltiy to communicate.  That he can make his comfort a priority when it comes to his daily needs and care.  That it is VERY important for him to be able to live the best life he can.

To Leave or Not Leave When My Boy is Sick :(

Last Friday upon my return from swim practice, I walked in took one look at my boy and I knew he was getting sick.  Cough, cough, cough was all I heard him do that day... although not unusual for the spring season the amount of coughing was.  I asked if he felt like he was getting sick and a resounding "yes" response came from him.  I was torn.

The next day I was scheduled to get C up bright and early to be not he road for an out of town swim meet.  We were only traveling an hour away from home.  I knew I could return if needed.  I knew F would be in R's care (his dad)... but the pit in my stomach was there and it was all I could do to think about leaving.  R assured me he would be attentive and on the respiratory care.  R does a good job with almost everything for F, but there are times when he gets distracted or doesn't notice the little signs and signals F's been giving him that say "I need something" until it's too late.  And let's face it, it's a mom thing.

My anxiety was at an all new level after having F wake me up at 3:25 in the morning in full respiratory distress and fever.  He was panting.  Fever 101.6 axillary.  Respirations to many to count.  We have an O2 sat monitor he was at 89 and his HR was 150!!! I was freaking.  I immediately started albuteral. Stripped him down to a t-shirt.  Wiped him down with a cool cloth.  Within just a few minutes of the albuteral his numbers started to rise an fall.  By it's completion he was up to 94/95 and his heart rate was at 132.  I gave him a cup of water and some tylenol.  I got him calm and comfortable and went back to bed by 4:20 or so.  The alarm was set for 5 am!

R thankfully awoke at the early hour upon hearing about the crisis during the night.  He packed our ice chest and filled our thermoses.  He was already on my computer printing a med list.  Had it planned to call on-call doctor and get F to urgent care.  We both knew a prednisone burst would be necessary.  Much to my relief R was on it with a plan.  I was so torn to leave, but knew that R needed to be able to come through for us girls so that we could get away for the meet.  R also needed to show F that dad can come through and take care of business when it needs to be done.  The two of them have been bonding a lot while I'm gone with C at swim practice each night.  I think it's been good for the two guys to not only work on their communication, but for R to work on being a better partner and assistant to F.  It's been nice to see them grow closer.

But the truth is when F is sick... I HATE to be that far away from him. He's pretty stable with his health, but that asthma and respiratory piece combined can cause sudden crisis and I'd hate to not have my opportunity to be with him.  I know what a way to think the worst!  But most kids I've known like F didn't make it to adulthood they died in some state of respiratory illness or distress between 8 and 12.  I've... we've been so lucky to have F almost 19 years now.

To make a long story short... R handled the illness with flying colors.  He pulled night shift respiratory duty the night I was gone.  He did a really good job for F as his nurse/respiratory therapist this weekend.   I didn't worry too much while I was gone.  C and I enjoyed our weekend... only to return with colds ourselves. F hasn't quite returned to his baseline, but he'll get there.  How we all love that kid!