Jul 22, 2012

A month of posts rolled into one

Bad, bad blogger!  I have gotten busy in life and neglected the retelling of my life.  There is absolutely NO way to catch up so highlights only will have to do. 

Let's see ... June 8-18 we were in Colorado with family on vacation.  You recall how we entered Denver (Manny's 7 blood sugar) and then trip to the ER via ambulance with police escort.  Then a couple of days of hallucinations but otherwise fine.  The rest of us were in a bit of shell shock.  We then did the touristy things and had a blast.  My last post about Denver was from Breckenridge.  Dan had fallen down the mountain and hurt his knee.  The rest was just plain fun.  (That's all recap.)

All was going well with us doing parks and walks around town.  Then Manny got a high fever out of the clear blue.  100.4 is the criteria for us to go to the hospital and start treatment at home.  But what about vacation?  I waited until he was almost 103 before I started to think that I should go.  What helped push me over the edge was his breathing became labored and his pulse ox started to drop.  We expected a lower number at such a high altitude but he'd been maintaining at about 92 and now he was hitting low 80's.  He just looked sick.

So we all drove to the ER.  They dropped me off and went on a mine tour.  They say it was one of the best things of the trip!  I'm glad they got to go as I wasn't going to go anyway as it's not wheelchair accessible and I cannot carry Manny that long and Dan's knee was still too messed up to hold him either. 

Meanwhile at the ER, I was at "home".  Manny and I knew immediately what to do and how to handle the situation.  I was again impressed that the Doctor listened to me and didn't over read the situation.  They did the standard tests.  CBC, blood cultures, chest xray, urine collection, etc.  They got the initial blood labs from his central line but they couldn't get the peripheral for the blood culture.  They decided to wait for the CBC to see if it was necessary or not.  Sure enough, his normal WBC is 7 and it was 17.5 so they had to do the peripheral.  Thankfully a nurse was there for a few minutes from their life flight (helicopter) and she was able to get the blood draw. 

One silly thing is ... they gave Manny a teddy bear (very sweet) and he screamed!  He didn't want it.  I have no clue why but he objected firmly!! 

Meanwhile, my brother in law is a doctor of radiology at that hospital and he was actually working until 4pm.  He read Manny's chest xray (normal) and then hung out with us until discharge.  I appreciated spending that time with him. 

Eventually, they gave Manny an IV antibiotic and scripts for several things just in case.  By the next day, Manny was feeling better.  Thankfully we were headed back to Denver (a lower elevation) so he could recover.  We never did know exactly what this illness was but the antibiotics and antifungals helped. 

On the last day of vacation, we saw dozens of elk!  They were right there in the backyard of my sister/brother in law.  Manny and I actually sat and watched them for an hour or so from the deck.  So serene.  They didn't even budge!  They just let us watch them. 

The last night we sat out on the deck under the stars in the perfect temperature.  Even saw the most amazing shooting star. 

The flight home was uneventful!  It was Southwest's birthday so we even got free adult beverages.  :) 


Home for a week and a half.  During that time we did laundry, groceries, normal life things and trips to Busch Gardens and other fun places.  Then we got ready for the family reunion. 


Family reunion:  Dan, his parents, 3 sisters, their spouses and kids get together every year for about a week.  It's a blast.  10 adults, 10 kids this year.  Kids ages 1-14.  We rented a lakehouse and a pontoon boat and just hung out.  We all take turns cooking dinner.  We do events for the kids.  We stay up way too late playing games and talking.  We leave exhausted.  But it's fun! 

Thankful to report that Manny didn't get sick or have any issues at all. 

I have pictures galore but just not the time to upload them.  So use your imagination! :)


In other news, Manny had a birthday, Zoe had her party and Jacob turned 14.  I have tons of pictures from those events too.  Maybe someday I can catch up on photo posts.  (Not likely but a girl can dream, can't she?)


Upcoming:  Manny is rescheduled to go to Boston Children's Hospital for motility evaluation on August 7-10.  Then to the NIH in Bethesda to the Neurogenetics Lab on September 5-6 (they specialize in the Muscular Dystrophy that Manny has and are interested in him due to the abnormal presentation of GI issues that he has.)  Hoping between these two specialists, we can get some answers about his condition and treatment. 

Jul 4, 2012

New Allergy

Our adventures continue.  (Like you're surprised.) 

So after we got home last Tuesday (June 26)  after being discharged, we had an uneventful night. 

The next day was a wonderful MDA event.  Manny is too young to attend summer camp (must be 6) but we were invited for the day.  All 6 kids went and we had a blast. 

Manny was quite the hit.  (He is everywhere.)  And Daisy was too.  The kids there liked her for the same reasons WE like her.  Many of these kids have not been able to hold a dog before because they're too big ... but she is tiny enough for most of them to hold her.  She is patient and kind and willing. 

When we got in the van, I noticed Manny itching vigorously at the dressing/bandage for his broviac.  Oh no.  What did I see?  THIS:

Yes, it's a rash.  I immediately changed the bandages and cleaned the area thoroughly.  What happened?  I use certain products.  They used 2 different ones.  I will sort through which it was later.  For now, I just needed it off his skin.  (And for the record, these were things he's had in the past and had no troubles.  We have just stopped using them.  So now we know more allergies.) 

This is what it looked like the next morning ... even though he was no longer being exposed to the allergen.  (This was all over his chest.)

And by the next day, his skin was seeping.  Remember that from before?  He lost a PICC line from this issue.  This time is different though as we knew immediately what was causing the problem and stopped exposing him to it (versus last time when he was still getting exposed to it).  So I had hope that we wouldn't lose this line.  Meanwhile, last time, we did the watchful waiting method.  This time, I was super aggressive and got ahead of it immediately.

By the next day, this is what his skin looked like.  So while not all better, it's still much improved. 

As I write this, it's almost a week later and he is ALMOST back to normal skin!  Praise God!

So phew!  That was close. 

Wait, not so fast.  Last night (Sunday), he got a fever.  How high?  High enough that I should have taken him in to the ER for blood tests and cultures.  And likely an admission. 

But ... I didn't go.  Why?  hmmm.  Besides the obvious of I don't wanna?? 

Here's my rationale:  Last Tuesday he got blood cultures and tests.  They were all normal.  So the odds of having an infection 5 days later is remote.  And if it is an infection, it will be on the mild side since it has only had the 5 days or less to grow.  Finally, if it is an infection, his fever will continue and he will stay/be sick.  I monitor him all day and night long (even up to every 2 hours overnight).  Finally, we had our weekly blood test first thing Monday morning at home.  I will know the results of that by Tuesday morning. 

So ... I feel safe that we are likely just dealing with another fluke of a fever (like we got in Denver ... oh, wait, I haven't told that story yet.)  I've heard that kids with mitochondrial disorders (like Manny is suspected to have) often have unexplained fevers.  If that is his new normal ... to have periodic unexplained fevers, I will either have to spend a lot of unnecessary time in the hospital for every fever OR have to learn how to differentiate them. 

So now it's Monday afternoon and I'm waiting to see what his fever does.  He's hanging right around that "go to the ER" number.  Hovering near it.  I plan to wait until the blood tests results tomorrow ... unless he takes a turn for the worse earlier of course.

And is that all that is going on?  Of course not!  Remember back in January where I had to get a bone graft for a tooth?  Well, today we were checking to see if it is ready for the implant yet.  I thought it was going to be a simple, quick talking only visit.  But silly me ... I mentioned a problem. 

Remember back in May (when Manny was in the hospital with the flu and needing a blood transfusion), I felt like I lost a filling on my back lower tooth. No biggie I thought. The only problem was that the jagged edges were cutting my tongue. I eventually got used to it and that was that. I figured it would be an easy stick the filling back in at the same time as the implant (scheduled for end of July). So imagine my shock when he said that the filling was actually still there and it was a "sink hole". The whole tooth collapsed in on itself. The nerve was exposed and there was major major decay. He couldn't believe I wasn't screaming in pain. And the infection in it was certainly causing my heart some complications. Great! So I figured today was as good as any day to do it.

Oh, and the only interesting thing was ... he kept having to give more anesthesia as he couldn't find the nerve for that tooth. He stuck me like 20 times and finally just did a block at the whole nerve root way up in my upper lip. I have holes everywhere. And even that didn't work completely and he had to do one right into the tooth itself. And still I could feel it, not just pressure but pain. Yikes! He kept saying I have unusual anatomy! I told him I wasn't surprised that I am "different" ... I am in every area of life, so why not this? LOL

But it certainly explains why the bone graft dry socket was such a problem back in February.  The alternate dentist didn't even CHECK to see if I was numb when he went to repair it. He just assumed and went in. I told him it hurt like heck and he didn't believe me. Yowzers! Now I know why that hurt so much!!

So I sit here with vicodin on board and it's barely taking the edge off the pain.  (And I'm one who doesn't even do tylenol etc. typically). 

Finally, cute Manny story ... All the kids and went to a restaurant and ordered food.  Manny ordered a "Chicken Mouse".  LOL

I guess to a child that doesn't eat and never has eaten, that food makes as much sense as any other!