This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Friday, May 10, 2013

Tune Up 1 Day 1 and 2

WARNING: This post is kinda long somewhat graphic in spots.

I know I promised to update yesterday as things progressed, but honestly, I was 10 kinds of worried and completely exhausted.  I had been up until 11 pm on Wednesday packing and getting things ready for our stay here.  Then I was up at 3:30 am on Thursday to help get the van loaded and be at Mayo by 6:15 am to report for Saxon's 7:45 am surgery.  We got through the drive here without incident, and no complaints of starving from the little man (although I was starving by the time we got to eat breakfast!)  Sax insisted we wait in the family waiting room because he wanted to play on the computer.  

Normally I'd say no because it's full of snotty kids coughing, but since we were the first ones there, that wasn't a worry.  As a matter of fact, he was called back before we even saw any other kids come in!

I love how the OR has a screen that shows the progress of the procedures.  Each patient is assigned a number at check-in, then their number appears on the screen.  It tells if the patient is waiting to go to the OR, is in surgery, when the procedure is done, and when they are in Recovery.  

We took him back to the pre-op room and helped him change.  I was surprised when the doctors told us that he was going to have a PICC line put in.  At first we were both against it after what had happened with Baden.  After the specialist came and explained it in more detail and the benefits of having it, we consented, although we were both near tears.  Then another doctor came in and told us they decided they weren't going to do the PICC line because there wasn't a team scheduled to put it in....  In the end, they did end up doing it.  (Today when the PICC specialist came in, I heard her and the nurse talking, and one said the line is a "peripheral line" and not a central line, which is what Baden's line was.  Apparently that makes a difference when it comes to administering some of the antibiotics.)

Posing before going in to surgery
 Scrappy went in to his procedure at 8:14 am.  Daddy wore the "bunny suit" and took him in.  He stayed with him until he was asleep, then the two of us went back to the waiting room.  Since we had fasted right along with him, we checked out and headed to the visitor's cafeteria for some breakfast.

We hadn't been gone long, but when we got back, one of the doctors was already looking for us.  I was worried until Scot pointed out that they had both of our cell phone numbers and would have called us if it was anything serious.

A few minutes later, Dr Boesch, the pulmonologist from his surgery, came to talk to use.  He said that he had completed the bronchoscopy and lavage, but there wasn't much in there - which is a good thing!  He said there was a small concentration in his lower left lobe and his upper right lobe, but overall things looked good.  They cultured the lung samples separate from his sinus samples.

Another bit of time passed before we heard anything more.  Next was the anesthetist to tell us about the PICC line and get our verbal consent.  He said the PICC line was going to be put in after ENT was done with the polypectomy.  He assured us that there was a lot less risk taking this route with Saxon than leaving in an IV.  For the surgeries, he did have an IV already in, but leaving it in can lead to several problems.  It can cause scarring of the veins, it can blow a vein, or it can more easily become infected.  In the last 2 cases, the IV would have to be replaced, in which case any of those 3 things can happen again, and the cycle would continue.  The PICC line is less likely to cause those problems.

Again, I told them the best bet would be to put the PICC line in his right arm, as I had told them with the IV, because we didn't want it to interfere with his thumb.  His left is the only one he sucks, and when he's tired or not feeling well, you do not want to mess with that thumb!!  From what I can see, they must have attempted to insert it in his right arm, but for some reason it didn't work.  He has a band-aid on his upper arm, and the line is inserted in his left upper arm.  It doesn't seem to be causing any issues so far... thankfully.

They said the seepage is normal.  They cleaned it up today and rebandaged it, plus wrapped it in gauze to keep the line from hanging down.  It looked a LOT worse than in this picture today.
Finally Dr Cofer came out to give us the report on his sinus surgery.  She said there was very little to see in his actual nose, but the left sinus was full of polypoid tissues.  There was a lot to clean out in there, but in the past his actual sinuses were too small to get into.  They are going to culture everything extracted from his sinuses to see what grows.  This will be kept separate from the lung cultures.  She said he was "doing fine" and that we'd be able to see him soon because the PICC team was working on inserting the line.

He ended up being in surgery a total of 3 1/2 hours - his longest surgery yet.  But he did have a lot of work done, and it's better to only put him under once instead of repeatedly.  When we got to the recovery room, he was still pretty out of it.  He came to enough to pull off the bandage they had put under his nose to catch the bleeding, so his face was pretty smeared.  After a bit, he rolled his eyes up at me and asked for a drink.  The nurses brought him a freeze pop, which worked pretty well.  I fed him as he dozed in and out.  He asked for a second one when he was done, but we decided to wait until we got him up to his room because we didn't want him to have too much too fast.

He dozed for a while when we got to his room.
Buppy and Saxon snoozing.  Buppy is wearing Sax's scrub cap.

When he woke up, he got another popsicle as he was coming around more.  He was not a happy camper at first.  When RT came in to do his first nebby and vest, he freaked out because they brought the mask to use.  We think he was having memories of the anesthesia mask because he said he could smell cherries, which the anesthesia mask was scented like.  He fought so much he caused his nose to bleed again.  

I finally got him to calm down when his lunch tray arrived, and I fed him all throughout his treatment.  We couldn't believe how much he ate!!!  A bowl of brown rice with butter, 5 Twizzlers,  a package of gummy treats, a cup of chicken broth, a cup of rainbow sherbet, and some lemonade.  He asked me to get him some French fries, applesauce, and 2 more sherbet, so I obliged when we were done.  He was asleep by the time it came, but when he got up he did eat both of the sherbets!  The fries were cold, so he wasn't too interested in those.  Can't really say I blame him.

We were getting a little worried when, by 6 pm, he still hadn't peed.  He had fallen asleep at that point, and the doctors had said if he didn't go by 7, they were going to put him back on IV fluids until he did go.  With a little bit of coaxing from me and the nurse, we were able to get him to go when he woke up a little after 7.  But now today he's only gone twice.  With all the fluids he's taking in, he should be going more.  I'm not sure what their plan is about that now.  

The doctors are also a little worried that he has not had a bowel movement yesterday or today either.  I told them that he needs the Miralax and Colace daily to keep him going, otherwise he backs up and we run into more problems.  They are discussing the next step and keeping an eye on him.  I don't think there is a blockage at all because he has been passing gas quite frequently.  He claims he isn't, but I can definitely smell it :( 

There were some volunteers here at the hospital yesterday shortly after we got to the room and were getting Sax settled in.  They had a large tray full of stuffed animals - puppies, elephants, pigs, among others, and told him he could pick out whatever one he wanted.  Of course, he went for a big, fluffy, soft puppy.

Sax named him Muddy Buddy.  Not quite sure why since he's tan, but it's his pup and he can name it whatever makes him happy.

He slept pretty well most of the night last night.  The nurse was coming in to check on him and get his vitals, along with his antibiotics.  At 3 am he woke me up and said he was scare, could I please sleep with him?  How could I say no to that sweet little man?  Of course it wasn't very comfortable, so about an hour or so later I went back to the bench below the window to sleep.

6 am, bright and early, I wake to "Mommy, it's time to get up!"  He was in great spirits, his nose hadn't bled or leaked during the night, and he was ready to GO!  The whole day has been a challenge to try to keep him mellow enough that he doesn't cause his nose to bleed again - which it's done a couple of times.  We've had a lot of doctors and nurses coming through with a lot of information.

Here's the basic run-down (so far):

  • Surgery went well - the basic problem seems to have come from his sinuses - he has probably been having sinus headaches.
  • His cultures started growing h. influenza right away, which he's always cultured.
  • He is NOT on droplet isolation for the first time ever!!! 
  • He is still scheduled to stay 10 days at this point, but could still possibly culture other "stuff"
  • His treatment plan has been decided as
    • CPT 3x daily
    • Nasal saline spray 4x daily
    • IV antibiotics every 6 hours
After a few days, he should be able to go out to the courtyard to get some fresh air.  We just need to wait for his nose to heal.

A few pictures from today's activities:

Playing with playdough

Checking out the fishies in the playroom

They even have a Lego and train table!!

Making a craft at craftime for Mommy

His finished craft for Mommy

Doing thumpies and nebs (you can kind see his nose is crusty from the bleeding)

The view from Sax's room
Well, the little man is sleeping now, and I think maybe Mommy should take a nap too while I can!!  He's definitely going to keep wearing me out!

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