March 31, 2015

Addison's March Update... The Not Quite Vacation, Croup, EEG, Sleep Study and the Surgery That Wasn't

Just as Addison was making some great gains on the eating and weight gaining front... just as we dared to think the crisis was over... he woke up with a fever. 

Welcome March. 

By mid afternoon there was a cough.  By evening he was gray.  By midnight he was gasping for air. 

Welcome vacation.

We ended up driving around a strange city in the middle of the night to find a hospital.  Where the physician on duty asked me what was wrong with him.  One might wonder what his purpose there was.  I told him 23 years on the parenting front, including 2 children with asthma and being asthmatic myself, I was going to take a stab at croup or an asthma attack.  But, I reasoned, it was probably croup since he had a fever first and its been my experience that if the fever comes first its viral but if the fever comes after the attack it is usually a bacterial infection secondary to asthma.  I told him we had already tried everything that typically works at home and he simply needed a breathing treatment.

He agreed.   

X-rays showed Addison's lungs were clear but his airways were consistent with croup.  The doctor prescribed breathing treatments with oral steroids and Tylenol.  Does anyone really think Tylenol actually works for their kids' fevers?  And, of course, we simply jumped up and down with joy at the thought of trying to get meds down the inflamed throat of a baby with severe dysphagia.  We asked him to give Addison steroids by injection.

He stared us down. 

To his credit he didn't say a word but simply asked if we wanted his Tylenol in suppository form then. 

Once he was out of respiratory distress we asked to be released.  The doctor says, "If you aren't worried about that blue color, sure." 

We spent the next week taking turns steaming him every couple of hours around the clock.  The girls swear they spent more time hanging out in the bathroom than on the beach. 

Which I think is not far from the truth.  But they all did it together and there was a lot of laughing and loud singing involved so I think it might be a good memory anyway.  By the way, this is not so great for curly hair. 

One afternoon he was struggling and I was really wishing for our rocking chair.  We ended up bundling him up and taking him out to a swing on the beach.  If you have to be sick on vacation, I suppose you could do worse than listening to the ocean waves.

With his little airways Addison already suffers from some, as yet undefined, degree of sleep apnea.  With his airways swollen he could not breath when lying down.  And even when he was upright and his breathing seemed calm and relaxed he would spontaneously stop breathing for a few seconds and turn blue.   For the next two weeks he did most of his sleeping on our shoulders or lying beside us so we could monitor his breathing. 
The steroid injection only lasts for three days so we had to take Addison to see another doctor who prescribed a great cocktail of drugs which we have used with Elisabeth's most severe asthma attacks.  It was very effective in  relaxing his airways.  However, after five days he began to react so negatively we weaned him off the drugs. Which brought on some degree or regression as far as his breathing.

Our original plan was to be away for a week.  However, there was no way he could be reclined in a car seat for 12 hours during the ride home.  Thankfully, God provided us with an opportunity to delay our return until he was well enough for the trip.

Of course, as soon as Addison got sick he stopped eating completely.  Because, really, what else would he do????  I can't say as I blame him.  I don't feel like eating when I am sick.  And if you throw in a swollen throat and medications... yikes!  To say the least, Addison giving up all that hard earned progress at eating and his plateau in weight gain didn't exactly make us happy.

Vacation used to be a lot different.

Exactly one month later, the ENT feels Addison still needs some more time for his throat to recover from the croup.  We are still working to get him back where he was in the eating realm.  Just today we saw the first positive move in his weight since he got sick.  We are waiting to meet with the pulmonologist to further investigate the cyanosis and many episodes when Addison was skipping breaths during this illness.     

Moving on... The third week of March was all about testing.  We spent a few days in DC for follow-up testing including an EEG and Sleep Study.

The sleep study has been on the table for nearly a year.  It took a long time to schedule.  Then it had to be rescheduled.  The test itself went horrid.  I truly don't know if they got any measurable data.  It will still be another month before we get the report back. 

But the EEG.  That was the first positive news we've had in so long... well, I just can't say how long.  There was no Hypsarrhythmia (the brain waves responsible for infantile spasms), which is what the neurologist was looking for.  Nor was there any sign of myoclonic seizures (the secondary seizures Addison had last fall).  There was no evidence that would indicate any sort of seizures or any brain waves indicative of any future seizure issues.  Of course, that can always change, but for now we are resting in the belief that seizures are a thing of the past.  It has been more than 6 months since Addison's last seizure.  Every day without a seizure increases the likelihood he will remain seizure free. 

The last full week of March we cancelled Addison's evaluations at John's Hopkins  in order to travel to Connecticut to visit with the lead Speech and Feeding Pathologist, do pre-op visits and have additional mouth surgery.  But the only thing we can always count on with Addison is things will never go as planned.

When we got to his pre-op evaluation we learned he had a mouth infection.  The ENT who oversees his mouth feels this was picked up during his time at the hospital in Georgia.  He initially said he wanted us to just wait it out a month for the infection to clear up.  After considering it, the next day he approached me and said he had decided to start an antibiotic.  Although, we try to avoid antibiotics with our kiddos, in retrospect I think this was a very good decision, particularly considering his continued refusal of food.  It is very hard to see the area where the  infection settled so it is hard to know if he is improving but what we can see and his improved disposition makes me think he is feeling better. 
.
You might remember he has very tiny ears.  He's never had an ear infection however his tiny inner ears combined with hypotonia rendered him essentially deaf.  In 2014 his ENT in DC put tubes in to open up his ears and give mobility to the drums.  He had perfect hearing following the surgery.

When we were in Georgia none of the doctors could see in his ears to know if they were clear and functioning or blocked or infected or????  This doesn't surprise me because the only person that has ever been able to see in there is the ENT who operated last year.  Sometimes, even he can't see in there.  And, to be honest, if any doctor told me they could see, I probably would not have believed them.  Since we had driven all the way to Connecticut for a surgery he couldn't have after all, we figured we might as well make the trip worth it and asked the ENT to take a look at his ears "just to make sure". 

As it turns out when he got him under the microscope both tubes were completely blocked.  When he was trying to clear them the one tube came out.  This is not too upsetting since we already knew it was sitting in the canal.  There was a lot of fluid trapped so who knows how much the poor fellow has been hearing this last month.  The other ear was not so agreeable.  Dr. K could not clear the tube and in trying to do so the ear sustained some injury.  He started Addison on some topical antibiotic and steroid drops to stop the bleeding, prevent infection, help the ear heal and hopefully open up the tube.  He had a lot of bleeding from the ear for a few days and was quite obviously in a lot of pain.  By the weekend it seemed to be feeling much better.

When we returned to Maryland we went to see his ENT in DC who was very pleased with the way Dr. K handled the situation, even though it was not a great outcome.  He agrees the infection Addison has must have been picked up when he was in the hospital being treated for croup.  He believes under the circumstances Dr. K made the best decisions for Addison in cancelling his surgery and in trying to clear his ears.  And isn't that what we all want... the best for Addison?  He will need to have new tubes put in ASAP so as to restore his hearing and prevent any further developmental road blocks. 

One bright bit of news is that the ENTS have coordinated so that both the mouth and ear surgery can be done at the same time when we return to Connecticut on May 5th and 6th.  This way he will only need to go under anesthesia one time. 

So there you have it.  As is the case with Addison, nothing about March turned out as we had planned.  But hopefully we have come through it wiser, gentler, more loving and with a greater faith than when we started.




 



    

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