An Update from the Homefront

Soooooo....let's see here. I suppose I should update you all on life around these parts. =)

It dawns on me as I review the posts since our last ER trip that Neil and I never told you Oliver's "official" diagnosis: pneumonia possibly due to aspiration (of his own slobber, I guess). Ollie never had a fever per se but we had been dosing him regularly with Tylenol and Motrin to help with his teething. (All four top teeth are trying to break through and have been for a couple weeks. Any minute now I expect to see a chomper on that upper gum.) He just finished his last dose of Augmentin last night. His secretions seem to be back to baseline (i.e., Ollie's version of normal). And he's also back to being his smiley, happy, talkative little self! With SMA, you consider yourself lucky to make it to 11.5 months old before getting your first pneumonia.

My cast came off on Friday 7/24. I may return to light-duty "work" with the restrictions that I should not lift or carry more than 10 pounds (Ollie's over 19 pounds now). I also should not do any repetitive twisting or turning with either hand. Makes for a challenging day, don't ya think? At least I can open my own soda cans again...hooray for small victories! I will be going back for yet another set of x-rays on 8/14. So far, it doesn't look like any surgery is going to be needed.

Due to my injuries, we got a temporary increase in nursing hours through CAP/C. They call them short-term intensive hours; I call them a godsend! We had been getting between 12 and 20 hours per week. Since my fall, we've been getting up to 16 hours a day which usually works out to 10am to 6pm (while Neil is at work) and then 11pm to 7am (overnight - so that everyone can get some rest). With Oliver's pneumonia, this was very helpful since he was getting albuterol treatments, CPT (chest physiotherapy), CoughAssist and suctioning about every four to six hours - including overnight.

Sadly, Grandma headed home yesterday (7/28). We had a great visit. She was a big help getting Oliver's room better organized, keeping the garden watered and harvested, mending clothes, and changing yucky, stinky diapers! Grandma also constructed a puppet show stage (out of a cardboard box) which Ollie and Mama helped to decorate with crayons. Ollie thoroughly enjoyed his Grandma's puppet shows.

I think that is all for now...I better scoot! Have a great day and thank you so much for keeping up with us.

Great News for Family

My little sis got her results back from the SMA carrier screening and she was negative! Little rays of sunshine like that help keep us going as things get harder with Oliver.

Mama's Red Cast

So, here's a nice shot of my cast on my right arm. If all goes well, I should get it off tomorrow. Cross your fingers that the x-rays of both elbows are looking good. (In other words, no surgery required.). I'm anxious to have both arms out of splints/casts so I can hold Ollie again! (Assuming I don't have too many restrictions from the orthopedist.) I've missed being able to hold my little buddy; his dirty diapers, on the other hand, I haven't missed all that much! =).

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Grandma's here!

And she's brought a whole suitcase full of goodies for Ollie! It's like Christmas in July at Ollie's house.

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Spa Day for Ollie

Ollie is SO spoiled! He's had CPT several times which he thinks is a massage. He's had a bath and a lotion treatment. His hair has been styled. I'm afraid he'll ask for a manicure next! (Thank you to our wonderful nurses from Bayada for keeping him content while simultaneously improving his lung health. We truly appreciate all that you do!)

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Ollie's New 'do

Tee hee hee. Mommy had some fun with Ollie's hair before his sponge bath today.

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Good mornin'!

Ollie's so happy to be home. He's got his sofa "bed" and his TV friends and all is right in his world! Thanks everyone for the nice comments and especially all the prayers.

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Home Again

We are home and Ollie is comfy watching toons. We are praying for a good night. More later.

Thanks for the thoughts and prayers and good vibes. We don't know how much longer we have but we know we are loved and Ollie is loved.

X-ray #2

Ollie just got a second x-ray so we can see if any of the gunk we've
suctioned out was what was on the first x-ray. He's doing well on 1
liter of oxygen. So if the x-ray looks pretty good we hope to head
home sometime tonight. Keep on praying!

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Ollie likes Daddy's phone

Daddy can get video of Grover and Ernie on his phone. This makes Ollie quite happy.
Ollie's gotten a dose of Augmentin as a precaution. He's starting to get weaned down on the oxygen. They started him on about 80% and dropped him to 60% and now he's at 28-30%. His sats are around 94-96. He's dozed off right now and his heart rate is lower now which is good.

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ER X-rays

Ollie's x-rays today look a little hazy in the upper lobes of both lungs compared to the x-rays he had done on July 4th (when Mommy broke her elbows). There also appears to be a small spot in the lower left lobe that wasn't there on the 4th. Good news is he doesn't have a fever. We're trying to wean him down on the oxygen. We'll update again as soon as we can. Thanks for your thoughts and prayers.

Ollie's in the ER again

We are back at WakeMed again. He is stable but at high oxygen levels. His eyes are open and he is smiling behind the mask.

Ollie is at Home

It's been so crazy for the last few days that we've forgotten to get a post up about Ollie coming home. There will be something much longer in the not too distant future.

The gist is that Ollie is at home and pretty comfortable. He is now on supplemental oxygen full time, but at a fairly low level. The biggest difference this has made is allowing him (and his caretakers!) to sleep through the night without constant apnea episodes.

Thanks for the thoughts, prayers, facebook posts, meals, companionship and so much else. This last week would've been an even bigger challenge without all of the help.

Thanks, too, to the fantastic staff at Duke. They made our stay in the ER and PICU as pleasant (and as short) as possible.

Ouchie!

Poor Ollie...his bipap mask rubbed a blister beside his nose overnight last night.

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Ollie with Bipap Mask

And this would be a picture of Ollie with his bipap mask on...he's not too sure if he likes it.
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Ollie without Bipap Mask

Here is a photo of Oliver right after his bipap mask came off from overnight.

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Slideshow of Professional Portraits

Bianca Palmer of A Moment Like This did a superb job on our portraits! We love, love, love them. Thank you to Jenn for nominating us and to Bianca for choosing us! You can see a slide show of some of the shots at http://www.amomentlikethis.net/ollie/ - and turn on your speakers as Bianca has a great song to go with the slide show. (Tissues are optional.) =)

Thank you everyone for your warm thoughts and your prayers. We sincerely appreciate both!

Ollie's in the PICU

Today (yesterday at this point) has been long and hard for Ollie, Mommy and Daddy. Ollie had a difficult day with congestion and breathing, and Bekka and Shelby (Ollie's nurse today) had a long long day trying to keep his sats up. CoughAssist, Suction, nebulizer, CoughAssist, more suction, more CoughAssist. Even with oxygen they were having a very hard time keeping his numbers where they needed to be.

Bekka called me at 3pm and told me I should probably come home and they were calling the EMS (for the 2nd time in 4 days!). This time we made the decision to go to Duke. He stayed pretty stable on O2 and EMS whisked him away to Duke ER.

After consulting with his pulmonologist, the decision was made to admit him to the hospital. He is in the Pediactric Intensive Care Unit tonight. They have him hooked up to a bi-pap machine in the hopes that oxygen will not be necessary during the night. He is expected to be in the hospital for several days (Monday was thrown around as a goal to go home). Given the number of episodes he has experienced recently despite our very diligent secretion management, they really want to observe and monitor the little guy for several days. He may have had an acute virus or he may just be experiencing a more rapid progression of SMA symptoms.

We thank you for your continued thoughts and prayers as these last few days have really struck home that Bekka and I have important decisions to make.

Not a single one of them is easy. Not a single one of them is pleasant.

Of ER visits and Mommy's Broken Elbow

So last night was a bit eventful.

Ollie had a great day on Saturday - his numbers were good and he was a chatty little guy. Then evening arrived.

After a simple diaper change and being turned over, he began to get the distressed look he often has when breathing becomes difficult. No big deal. We deal with this all the time. Well, this was definitely not a normal event. We cough-assisted and suctioned and even used a bit of blow-by oxygen to keep his numbers reasonable. Even after 45 minutes, without the O2 he would drop immediately to dangerously low saturation levels. When it got to the point that he was dropping even with oxygen, we called 911.

Raleigh FD and Wake County EMS responded with their usual rapidity. These fantastic folks always listen carefully and do their best to understand Ollie's special condition. So we get him loaded up in the ambulance and they are streaming a bit of oxygen and he's doing pretty well. Bekka thinks it's possible she dislodged the worst of the mucus plug just before we loaded him up.

We thought about going to Duke as that is where his doctors are, but learned an important lesson: The Wake County Ambulances do not have pure sine wave inverters. This type of inverter produces power identical to house current rather than the square wave or modified sine wave of the cheap inverters people often use in their car. We've been researching the best inverter/battery/charger combos out there so we would have portable power for all his equipment, but we hadn't bought anything yet (that's about to change!). Without the cough assist, we decided we needed to go ahead to WakeMed since it's so much closer (and they really have a wonderful pediatric ER).

So off we go to WakeMed with mommy in the ambulance and daddy following. It's not exactly routine, but we are pretty comfortable with the process. Our arrival at WakeMed is when it became a bit more complicated.

The EMTs unloaded Ollie from the ambulance and were headed inside. Bekka handed me the cough assist and went out the side door of the vehicle. I suggested we should hurry as they were wheeling Ollie inside.

That's when she tripped over the unpainted concrete bump/stop the ambulances back up to to unload.

She went down hard. Real hard.

Being super-mommy/super-trooper, she dusted herself off and limped into the ER. At first, everything seemed alright and we were focused on getting Oliver stabilized and x-rayed. Once that was accomplished (a big kudos to Barry the Wonder Nurse and all the staff at WakeMed) and Oliver was clearly doing well we had a doctor look at Bekka. He didn't think anything major was wrong, but was concerned enough to have her left elbow x-rayed. I was worried because it had gotten very stiff as the evening wore on.

So Bekka had an x-ray in the kiddy room (apparently the biggest patient the tech had ever seen, lol). When the x-rays came back, it was very apparent Bekka had a fracture at the tip of the radius bone in her elbow. It wasn't broken off, thankfully. The doctor ordered a rigid splint for her to go home in and referred her to the Orthopedics department. She'll need to visit them this week to find out if anything else will need to be done.

Her right arm is doing pretty well - it hurts when she moves it and grip is reduced, but is more functional than the left. If it doesn't get better over the next day or 2, she'll need to have it checked out in more detail when she sees the orthopedist.

As it is, she's going to be the one-armed mommy trying to do a job that can keep TWO people busy. We hopefully we'll be ramping up nursing assistance for Ollie soon, cross your fingers!!!

We got home about 6am. Man are we tired.

Pictures!

OK, so we owe a longer post than this one, but there are a whole slew of new photos of Ollie to keep you busy. Just click on his picture to the right to see them! Ollie even made it to the beach this week (he's really cute in trunks and sunglasses!)

In other news, we have started the medical trial for an experimental treatment (CARNIVAL I). We'll certainly have a more detailed post up soon regarding that. Ollie is on day 4 of the medications and seems to be tolerating them well.

Oh yes, we've been officially approved for CAP-C and even have his cards in hand! As you can imagine that has been a huge load off our minds. Bekka now has nurses coming in 3-4 days a week for a few hours which allows her to catch up on sleep and make all the necessary phone calls!

Little guy has also had a rough few days. We think he's had a head cold and it's made keeping him suctioned out very challenging. So far he's had a great Saturday for daddy while mommy is at work!