Mighty Max...Update

3 Weeks Old and finally, FINALLY being held by his Momma.  Mighty Max is doing so well. They are weaning him off his meds slowly and there is a bit of withdrawal going on but that is expected.  He's smiling, hiccupping and making a few squeaky sounds.  He has not full out cried yet because one of his vocal cords is paralyzed but that, they think, will correct itself in time.  A nerve that is close to the surgery spot was affected.  This guy is a champion and we hope soon, very soon he may come home, at least for a time before surgery #2, then home for a few years.  Definitely a long but steady journey to stability.

Pure Love...

 

Mighty Max Update

This is an update/video from our daughter on the progress on Mighty Max:

Max had another good day. I finally got to be back crib-side in the ICU after four days of a head cold. I was wrong the other day in thinking they had weaned him completely from the precedex (his sedative). They had started to wean and he started having withdrawal symptoms, which is common. So they went back up on it today and he was so much more comfortable. They figured that they didn’t give him enough time to adjust to the clonadine (used to help wean from sedatives), so they’re just going to let him wean more slowly. They want to move his central line from his IJ (in his neck) to a picc sometime tomorrow. His femoral line is out and today they re-sutured his the pacer lines without local anesthetic. He did so well.

The new mystery (kind of) is that now that his tube is out, he can cry….but he’s still not making any sound. This can happen. We had ENT come in and do a scope (not fun

) and it looks as though he has partial paralysis of one vocal cord. So it’s not completely paralyzed but “paretic”. Speech therapy will come in soon to do a swallow test to determine if it would cause aspiration during feeds and if so, they can treat it with an injection of something much like Botox. If not, then it IS something that will resolve itself over a few months. This was likely caused by the same stretching of nerves that affected his diaphragm after having his sternum split open for the Norwood surgery. Those two nerves are right next to each other. So the only sounds he makes are the tiniest, itty bittiest whimpers and it’s so sweet and sad and adorable, poor guy.

But overall today was good. We’re managing the withdrawals from sedatives, he’s been weaned from the INO machine (nitrous), his pressures, sats, and HR are good for the most part, and he’s more and more alert every day.

You’ll see in this video that he looks a little cross-eyed, but they assure me that it’s most likely from the weeks of sedation. He’s LOVING his pacifier and even roots for it. It’s beyond precious.

47 Years

Happy Anniversary The Hubby...47 years ago today we said I Do and it was the best decision of my life.  

 

Painting Challenges

Today I thought I would talk art with a smattering of Max.

Trying to get some painting time in lately has been a great challenge.  I started this oil painting last week and this is about as far as I've gotten.  My studio partner, Linda, finally came in and we started talking and talking.  I haven't seen her since November so we had a lot to catch up on.  One interesting thing is she and another friend have gotten a workshop set up for April in Broken Arrow!!!  In fact, it's  Chantel Barber and I own one of her little paintings and have always admired her.  The thing is she is an acrylics artist and I'm not but I will try it.  That said, we signed up right then and there.  Sometimes I NEED a workshop to shift my mind and inspire me.  I think there will be another on in late summer or early fall with a young gun named Kyle Ma (sooooooo good!)  

Since the oil painting thing isn't happening much I decided to whip out the watercolors and colored pencils for a change, because they are fairly portable.

This one turned out really nice.  I started it early Sunday morning, like 6 am, sitting by the fire at the cabin.  Fun.

This one was colored pencils that my best friend from high school gave me for Christmas.  It inspired me to dig out my many boxes of colored pencils.

Now on to Mighty Max.  He's progressing well.  Today I believe they will do a small procedure to tack a part of his diaphragm.  This kind of wrinkle is not allowing his right lung to inflate properly and if they get this fixed then he will be weaned off the vent and onward to being held and eating from bottle or breast.

Visit with Max

This kiddo finally got to see her momma and little brother this weekend.  We were not sure it was going to happen because Max had a hiccup on Thursday when they started to extubate him.  His momma was in a bit of a panic and hopefully I settled her down but being away from family hugs was a bad place for her.  She was so worried that it would not be a good time for Min to visit but Max rallied and the visit happened. She is staying with The Hubby's cousin Dee Dee and Jack and it was been an absolute Godsend for Af to be with some kind of family.  They have a cute little dog, Twosy that just loved Min, and Jack and Dee Dee did too.  Min has that effect on people, wrapping you around her little finger.

Her parents were able to let her in to see Max and she was fantastic, coloring pictures, giving him a pacifier and tickling his feet.

The family complete.

I just love this photo of the two together.

Hard for Daddy to leave him again and Af, but life rolls on.

Sweet Max, Mighty Max!

Max & Min Updates

He, Max, is four days old and has already been through a lot.  

While he is challenging the world I've been busy with Min and Christmas take down.  She has been my shadow for 7 days and I've totally loved it but boy am I tired.  There are reasons we have children while young.  It's non-stop 3 year old chatter.  Honestly she was pretty easy but you have to be on, always.  

On Friday one her momma's friends came and took her with her son to their Bouncing Beethoven's music class.  Then she took her back to their house for lunch, play time and a nap.  It was and gave me a much needed break.  Snicklefritz came over yesterday to spend the night and help keep Min busy.

Friday, before Min went to her day out she began helping me to finally take Christmas down.  These broken ornaments were NOT done by her, on no, they were totally my fault.  She was already gone and I was sitting on the couch wrapping ornaments for the box when I tipped the entire box over, face down and CRASH!  Well, just PHOOEY.  Well, I'm okay with it all.  Some were favorites but I can live with it.  

This photo was Min at her friends house.  This kiddo, every morning since she has been with me has awakened at 5:30 in the morning except for Saturday, which she slept in to 7:15.  So obviously she crashes as she did here just as they were to bring her home.  Poor kiddo.

We've really had a great time. 

We've played Candy Land, a 3 year old version.

We've painted...

and we've played on my IPad (sorry she figured out how to do my games.)

It has been a busy and emotionally draining week for all.  She is safely home with her Daddy and I will again be called up to cart her around to her various school things this week.  

Max is doing very well after his big surgery.  They still have to close him up the rest of the way but slowly to let the fluids not build up and wean him off some of the meds and the vent.  He is very strong and we are so hopeful he will be home sooner than later, until the next surgery in a few months.  

I almost forgot that I've revamped one of the guest bedrooms for Snicklefritz.  She had been in the front bedroom, they call it the pink room (formally my studio) but Min has kind of taken over that room and bed.  So I decided the green room need some spiffing up, some life.  All I did was start opening the curtains, new bed covering and some awesome pillow shams from Amazon.  She was so happy.

The Norwood

Max

Today lots of prayers please.  He’s in such good standing that he’s been cleared for surgery today. This first surgery is called the Norwood. It is the longest and hardest but most necessary. This morning we will all be on pins and needles waiting for a most perfect outcome for this big boy. Prayers, lots of prayers please.

 

Max

Max is here all 8 lb 13 oz of him.  What a big boy.  2:29 am he made his presence known to the world.  Now we wait for the next part of his journey to see what the next step is.

Monday

 Good Monday morning.  It's 8:29 am and I'm sitting here waiting.  I decided to add a bit of bright sunshine here with the daffodils photo.  Looking forward to spring already and it's only January 2.  I'm waiting to get an email to pick up a small grocery order.  I'm waiting for little Mini to come and be my companion for the next week or two.  I'm waiting for the washer to stop so I can dry the sheets.  I'm waiting for my energy to pick back up so I can take down Christmas.  I seem to do a lot of waiting.  That's okay, I'm a very good waiter.  

This flu thing is getting better and better.  I thought this morning that if I had NOT had the vaccination I might have been a lot sicker.  Of course the rounds of Tamiflu have helped tremendously too.  Yesterday I felt so much better that I got nearly all of my laundry done.  I cleaned the kitchen, dishes and all and wiped surfaces with Clorox wipes.  Got to get rid of the flu germs before Mini arrives.  I even went around and gathered up a lot of the Christmas decor that was spread throughout the front of the house in preparation of storage for another year.  I've been thinking about how I'm going to keep a 3 year old entertained for an extended time.  If the weather keeps staying warm I think we will get Snicklefritz's old tricycle and clean it up and teach Mini how to ride it around the back patio.  Time spent in fresh air...CHECK!  She will also be in her day school Tuesday-Thursday, so there will be time for me to go to the office a bit or even to the studio.  At home maybe more watercoloring and the tricycling.  I'm going to try and not do too much TV time, keep her busy with other things, maybe helping me.  I'm going to try and get her to help in her food preparation, get the step stool out that Snicklefritz used to use a lot to help.  Got to keep her busy mind and body.  Trust me, I'm going to need a vacation when this all over...LOL!  Cabin time.  Looking forward to a lot of time spent at the cabin and possibly with her in tow along with Snicklefritz.  Feels like being a mom again, just a LOT OLDER!  We will get through this and before you know it Max will be here and a big part of our lives.  Tomorrow is the induction day so stay tuned for updates.

Happy "Flu" Year

 Happy "Flu" Year

Yes you read that right, flu.  Thursday morning I finally was in the studio and hoping to get some quality time in with my easel when I started feeling, off, just not well.  So I headed home for some lunch and a nap, a two hour nap.  Then again on Friday I got up feeling tired with a tinge of a headache.  I had to go to the office to do payroll then home for yet another epic nap.  As the day rolled on and The Hubby came home it was very clear I was sick and he was too.  I had fever, not bad, low grade but enough to feel like crap.  With my girls encouragement I decided to head to urgent care to get tested for the flu.  I have a huge job to do here in a few days and I NEED to be well to care for our little Min when she comes to stay while Max makes his entry into this world.  

Well, the urgent care said it would take walk-in's so I went in to see if I could get a flu test.  When I arrived there was a lady a few steps ahead of me walking in the door.  At the counter she asked the receptionist for a Covid test for work and another test she would not say out loud.  That had me curious but not my business.  The receptionist said there was only one appointment left at 7 which the non-sick lady took.  She left to return at 7 for her turn.  I stepped up to the window feeling like absolute crap and probably looking like it too.  I told the lady I needed a flu test and said I wish I had been in front of the previous patient.  The receptionist all of a sudden said, "we have a 7:30, would you like to wait."  "YES!"  

I sat down and I waited.  A few minutes before 7 the other lady walked back in for her appointment and all of a sudden they called my name!!! SCORE!  Short story, I have Type A Flu and they put me on Tamiflu and cough medicine.  

I came home to find The Hubby snoring in his chair.  He woke up to my entry and I told him I have the flu and that they said he needs to test too.  He got up yesterday morning and went in where he tested negative yet they still put him on Tamiflu because of me.  He is either too early or more over his than I am.  I suspect he's been sick for more days but because he NEVER STOPS for anything he didn't acknowledge it, possibly infecting others.  What sucks a BIG ONE here is that we both got our flu shots, something we religiously do every year.  The news peeps have been all about touting the effectiveness of the flu shots this year against the strains.  Obviously they are WRONG!  

So last night, New Year Eve, when I have traditionally hang with Snicklefritz, I was in my bed at 7:30 pm and he was yet again in his chair, snoring, not dancing.  Happy Flu Year.

This morning, because of all the sleep I was up at 4 am and The Hubby was not far behind.  Just too much SLEEP!  He fixed me breakfast of eggs, bacon, hash browns and biscuits.  While he was cooking I decided to get some stuff done.  My plans were to change my sheets, shower, do laundry, take Christmas down and put away.  I got as far as change sheets, take shower, start laundry before I was called to eat.  I was so exhausted from the exertion I could hardly eat, didn't even touch my biscuit.  So here I am again in my bedroom, sitting in my chair and trying to finish the laundry and then will rest for the rest of the day.  Whew, I have got to get my energy back to deal with a three year starting tomorrow!