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.

Wednesday, December 11, 2013

Another Study

I'm glad today is almost over - it's been a busy, crazy day!  We spent most of it in Rochester.  When I say we, I mean me, Daddy, and Sax since Raine had school today.  It was a day of combined appointments.  And, unfortunately, I have no pictures to share from today.

My first appointment was at 7:15 am, so we had to leave home by 5:30.  Sax isn't allowed to come into the ultrasound room, so he had to stay in the waiting room with Daddy.  By the time I came back out, they had already left to go to Sax's first appointment, which was his PFTs at 8 am.  I caught up with the just as they were getting ready to check in.  Sax asked Daddy to go back with him when it was time for the actual test, so I camped out in the waiting room with my crocheting.  Scot said he did really well and was anxious to get the results, which we wouldn't see until Sax's last appointment.

After he finished his PFTs, we headed over to Peds for an appointment with the social worker.  This appointment was scheduled for 8:45 - but she didn't get there until after 9:30.  Wow.  We had requested the appointment with her because we are having some behavioral issues with Saxon.  We're not sure if it has anything to do with the baby on the way, because he never acted out like this when I was pregnant with Baden.  I've been getting worried because tantrums can last up to 2 hours or sometimes more, and sometimes involve him hitting and kicking people or throwing things.  We've both tried a variety of punishments, depending on the type of the tantrum and the behavior.  Nothing has been effective and we're lost as to 1) what else to try and 2) why he is doing this.  The only pattern we've noticed is that he claims to have "not gotten any rest" or he's "tired" and often correlates when he hasn't gone to bed on time the night before.  

We're also concerned that he has started exhibiting some OCD-type behaviors.  It's normal to wash your hands frequently, especially in the winter and especially when you are trying to avoid picking up germs.  Saxon has starting washing his hands up to 10+ times per hour.  If he touches the floor, if he touches his face, if he touches a toy that was outside, if he throws something away - almost any time he touches anything he insists on washing his hands with soap and water.  His poor little hands are getting chapped from it.

We talked through all of Saxon's behaviors and possible solutions.  She is referring us to some of her psychology associates to see what they suggest.  The first possibility is he is having sleep issues that we don't know about.  The other possibility she suggested was anxiety.  She left us to our next appointment while she checked into what to do next.

Sax's appointment with Infectious Disease (aka our CF nurse Vicki) went well - we found out his weight is 2 pounds, his BMI is up, and he's grown 1/2".  He did pretty good getting his throat culture - although Daddy had to hold his hands down so he wouldn't push Vicki away.  Vicki set us up for our next appointments for Saxon.  He'll be due back the beginning of March, so she put an order in for the first week since Baby Bump may be arriving any time in March.  Sax will be doing PFTs and meeting with GI, ENT, Infectious Disease, Pulmonology, and Social Work.

Vicki also told us that they are in the process of becoming an "accredited" CF center.  Currently they treat CF but are not accredited, but that doesn't matter to us.  We were told the only way it really changes is that at his appointment around his birthday, Sax will have all day appointments (which we already do anyway) from about 7:30 am - 2 or 3 pm and will be meeting with a few more specialists than he normally sees now, like Respiratory Therapy and seeing Dietary more frequently.

Dr P was Sax's last appointment.  We got his PFT results - 117%!!  And it's only the 2nd time he's ever done PFTs!  Overall Dr P thinks Sax is looking good, but is concerned about his keratosis.  Saxon and I both suffer the same skin condition where our skin doesn't shed right, which results in dry skin and the appearance of bumps on our arms and legs.  We are trying another kind of lotion to see if that helps, but we may end up vising Dermatology at some point.  

Dr P also decided that, since Sax's sinuses cause so many problems, we are going to put him on a regular regimen of antibiotics to prevent his polyps from becoming infected.  He's on a nasal inhaled steroid to help slow the growth of the polyps, but they don't prevent the infections.  Most of his colds originate from his sinuses.  Sax is currently on Bactrim 2x per day for a cold that he's just coming down from.  For the next 3 months when this round is done, we are going to be doing Bactrim 1x per day, every day, for 2 weeks on then 2 weeks off, to see if that prevents some of these colds and sinus issues.  If he gets sick in spite of this we will try to supplement with Augmentin.

We also decided on a new course of GI treatment.  Miralax and Colace can both cause your body to become dependent on the stimulation to keep bowels regular.  However, magnesium citrate does not have this same side effect.  We've noticed since he's started taking it, Sax has been having a lot less tummy discomfort, he is much more regular, and we've been able to eliminate his other 'bowel maintenance' medications.  Dr P agreed that we could continue with this course of treatment and reevaluate in 3 month.

While we were meeting with him, the social worker came back, consulted with him, and advised 2 current courses to pursue.  1) We were told to read a book on strong-willed children, follow suggestions in the book, and follow up with her in a week and 2) we will be pursuing the sleep study.  She also suggested we have Sax's iron levels checked, so labs were added to our day today.  (He did NOT like having his blood drawn - I could hear him screaming down the hall.)

Next week is going to be a bit of a stressful week.  I will be taking Sax to his appointments by myself, which won't be a problem unless the weather gets bad.  We have a consult on Tuesday.  Wednesday he reports for the sleep study at 7 pm.  One of us has to stay with him, which will be me since Scot will have to go to work in the morning.  I'm a little anxious about it.  I got some information about it and it doesn't sound like fun.  I don't think Sax is going to like have probes glued to him along with the other monitors.  We will be getting done sometime Thursday morning, then we'll have to be back on Friday to get the results.  We were told that there is a possibility that we may be able to get the results on Thursday, which I'm going to ask about at the consult since it would save us some driving!  At least we will know if his sleep is affecting his mood and temper after this!  If not, at least we can cross something off our list!

After Sax was done, I had a checkup with my doc for Baby Bump, which everything is looking good other than my blood sugar being slightly elevated still.  I had to get a new prescription for a glucose meter too since my insurance decided it wasn't going to cover strips for the meter I just got 2 months ago.  They made me switch to a more complicated and more expensive meter.  I swear, those people aren't very bright :/

After we were FINALLY done at the doctor's office, we made a few stops - went to the Girl Scout headquarters (which the store wasn't open, like I figured since it's Wednesday - so I'll have to go back next week), then Toys R Us (got a few Christmas presents even though Sax was with us!!) and Barnes and Noble (they didn't have the book, but Scot got a couple magazines and Sax got a few new things for home school!) 

But me.... I was just glad to get home and relax.... It's been a loong day!

Wednesday, October 9, 2013

Santa Needs a Check Up Too

Yup, this one is a few days - a week - late.  After spending all day in Rochester on Wednesday, then the headaches that accompanied such early mornings Thursday and Friday, I didn't have the energy to update.  Saturday after Sax and I got done with taekwondo and Farmer's Market,

we had to evacuate the house because Daddy was cutting a hole in the basement floor so we can put in the extra supports for the new stairway 

and the house was FULL of concrete dust.  Not good for the lungs!!  And since then, it's been cleaning up the dust - but today we got the approval to pour our cement in the basement.  Maybe we will be in our new room by Christmas!!  Although we did take some time out on Monday to help Opa get the boats off the lake.. it was such a beautiful day for it too!


Wednesday morning was a very early morning for us.  Mom was up at 4:30 am because we had to be in Rochester by 7:15 am for Saxon's first appointment for his GI scan.  Since the guy I had talked on Monday never called me back with the timing of the tests, I packed up Sax's suitcase with extra clothes for us both, packed his nebby and vest, and prepared for the worst.  I also packed his little red suitcase full of books, homework, and coloring so he would have something to do in between his appointments (the suitcase was great since it rolled!) and I took a bag of my knitting so I would have something to do too.

At about 7:30 am, the radiologist came out and called Sax into the back room.  I asked her a few of the questions that I had asked the man at the GI's office.  I told her that the sheet I was sent home with only said that he was having a GI test, that he had to fast, he would have to eat eggs, and he'd have periodic testing, but no one could tell me a timeline or what all the periodic testing was going to be.  She asked "Well, what do you think it should say?"  I told her that it should say he's having scans done, especially when day 2 and day 3 only say GI Test and no additional information.  This "Nurse Ratchet," as I later called her, was quite crotchety and rude whenever I asked a question.  SORRY, I'M HIS MOTHER AND IT'S MY JOB TO ASK QUESTIONS ABOUT TESTS BEING DONE TO MY LITTLE BOY!!!  I asked her what the alternative was to eggs since I have not gotten him to eat them since he was a year old.  She said she would check, but they couldn't do the test unless he ate the eggs.  THIS is why I had called on Monday - and was told there was an alternative. "They don't know anything over there - you should have called us over here." Um, if they didn't know, they should have said so.

So Sax spent another half hour waiting for her to come back.  The result?  He had no choice but to eat them.  I could only hope that his fasting since 8 pm the night before made him hungry enough to eat them.  We went back with her again, where she gave Sax a pill to take (but very important - don't touch it!) and a glass of water.  Then we had to go wait for another hour before the next step.

We found a quiet(er) corner of the waiting room to hang out it.  Most the the people there, sorry to say, were of the geriatric variety, so I tried to keep Sax quieter and occupied.  We started off with reading some stories and playing with his friend Bumble.  The entire time he told me about how he was soooo hungry and why couldn't he eat yet?  His tummy hurt!  I felt awful for him!

FINALLY, Nurse Ratchet came to get Sax so he could do the study.  He had to go to a small room that only had one other person in it.  I asked if he was supposed to get his enzymes or not. "What were you told about meds?" The ONLY thing it said about meds was nothing that affected his stools.  But, of course, I don't know if they'll affect this test! GRR!!

They brought breakfast in as I was giving him his enzymes.  I like eggs, but these smelled AWFUL!!

Maybe it was just being in the small room and the bread smelled funny too, but I tried my hardest not to gag.  Sax really wasn't enjoying them much either.

(See the 'evil one' standing in the corner?)  She left for a while, and I had managed to get Sax to eat almost half of his meal through bribery (and got yelled at for offering him M&Ms because, until then, no one told me he couldn't have chocolate or any other 'caffeine' products.)  He told me he was full, which I believed because he'd eaten more than he normally does, and I thought he'd done pretty well. (Oh, and he only had 10 minutes to eat.) This gal would not accept him saying he was full - took the egg off the bread, and got short and snippy with him, demanding that he eat it.  Sorry, but that's now how you handle kids!  She must be used to dealing with adults all day, because she sure didn't have a pleasant disposition towards this cutie!

We had to wait another hour until Sax's scan.  We killed some time working in his coloring book.

After his 10:20 scan, I took him to the Charlton lobby so he could have a little room to spread out and run around and maybe burn some energy off.  It kept him occupied for all of 4 minutes.  We read a couple books, then he ran around with Bumble again.  About 11 we went back up to wait for his 11:20 scan.  He was given his lunch in a brown paper bag, but was told he wasn't allowed to eat it until at least noon.  What do you tell your child when he claims he's actually HUNGRY (which rarely happens anyway!) and you are standing there holding his lunch?  "Hey, Bubby, let's go find something for Mommy for lunch so we can eat together in a little bit!"  

I decided that, since he was having a sandwich, that sounded good to me too.  We went to Bruegger's Bagels because 1) I love their soups and sandwiches and 2) it is waaaaaaayyyy at the other end of the subway under Mayo.  Unfortunately I didn't think about how we had to walk past The Chocolate Oasis - our favorite treat spot.  I was happy that Sax was starting to understand he wasn't supposed to be eating chocolate, so he didn't ask for me to get him anything.  We chatted with the store owner for a few minutes (she knows us well since we're regulars there) and I promised Sax we would come back soon and get a treat - sometime after his tests were done.

I took my time ordering my meal (I settled on grilled tomato and cheese on ciabatta), passed up any sides since I didn't know what he was getting besides the sandwich, and we headed back to our favorite lunch spot.... slllooowwwwllyyy (we still had time to kill).

The weather was beautiful, it was the perfect kind of day for eating outside.  We usually sit in this garden area.

Dang it  - I knew I waited too long to catch up on this :(  Sax had a turkey sandwich and jello for lunch, then he had to go back for 2 more scans.  He fell asleep in the chair in the waiting room in between appointments.  We managed to make it home by 5 since his last scan was at 3:20.  But then Thursday we had to be back at 7:30 for another scan, and the same thing on Friday.  It was literally a 2 minute scan - and an hour drive each way!!  On Thursday when we were leaving, the guy working at the gate recognized us and looked at the time on the parking card.  We had been there for less than half an hour.  He handed my card back (without punching it) and told us to have a nice day.  I love when good things like that happen :)

As of 12/11 we still do not have his test results, but I'm sure if there was anything serious we would have known by now.  I took Sax back for his followup appointment and was told I had the wrong day, even though I had told them that Thursdays didn't work and I was told it was moved to Wednesday.  Then, to my amazement, I was told I couldn't reschedule while I was standing there in the GI office - I had to leave and call back to reschedule!!!  That made absolutely NO sense whatsoever to me!!  So now it will be March before we go back to see them...

I'm sure everyone is wondering where Santa comes into this, right?  As we were walking into the clinic on Wednesday, a red car with an old man in it drove past us.  The old man had white white hair and a full beard and mustache.  Sax looked at the car, looked at me, and looked at the car again.  (I should mention it was a red car too.)  

Sax:  Mom, did you see that?
Me:  Yes, I saw that car.
Sax:  That was Santa!!
Me:  Maybe it was.
Sax:  What is Santa doing here?
Me:  Well, Christmas is coming, and Santa needs a checkup too.

Monday, September 30, 2013

GI Test

This is going to be a short post.  Anyway, I called Sax's GI doctor to find out what is going to happen at his appointments this week.  The first one says "GI Test," location, time, and fasting instructions, and information about eating foods containing a "contrast agent."  The next 2 say "GI Test Day 2" and "GI Test Day 3" with dates, times, and locations, and that's it.  When you have other children to take care of/make arrangements for, this information isn't very helpful.

I told the guy who answered I had 2 main questions - How long are the tests going to take, and what do they entail?

Here is what I was told:

Sax will have to eat eggs, bread, and milk with a contrast agent.  Then he will have to have x-rays done.  The guy I spoke with was going to double check with the exact times but told me what he thought.  The first will be right after he eats, then they will be 1, 2, 4, 6(?), 8, 12(?), 24, and 48 hours later, which will give them a view of his stomach, large and small intestines, and his colon.

I laughed and told him that Sax doesn't like eggs.  What are they going to do then?  He was supposed to check and get back to me, as well as with the exact times.  Hopefully he'll call tomorrow, but I'll just prepare for the longest day.....  There's going to be a LOT of waiting in between.... maybe Sax and I can head to the park or something if it's nice?

Wednesday, September 18, 2013

You're a CF Mom (Part 3!)

Continuing with our CF Mom series :)  The good, the bad, and the ugly truth.... and a little more serious than some in the past....

You know you're a CF mom if.....

You know there is a smell worse than your CFer's poops - and you KNOW what that smell is - his old gas!!

You know just how valuable each and every day is when your family is healthy.

You have to plan our your child's medication schedule carefully so he doesn't take medications that interact with each other together

You look forward to 'thumpies' because it's an excuse to snuggle with your CF toddler who otherwise never sits still.

When your CFer is potty training, he has 'accidents' for medical reasons, not just because of a 'stage' he's going through.

You get used to the odd looks from strangers as your CFer is asking for "salt on my hand," you oblige, and he eats it straight.

You have told your doctors to do whatever is necessary and actually mean it.

Your child's personal library is built with booked labeled "Yours To Keep" that they received from the clinic waiting room.

The lady that runs the chocolate store at the clinic knows you, your family, and what you are going to buy the moment she sees you walking down the hall.

You and your husband joke about buying a vacation home within walking distance of your CF clinic/hospital because you're there so much.

You know there are worse things than your child having CF and you are thankful that CF is all you have to adapt to.

The Good, the Bad, and the Worrisome


Today was a looooonnngggg - and stressful - day!  Sax had CF clinic - his quarterly checkup.  We also took Opa over because he had some appointments.  Made sense to schedule Sax's appointments for the same day since we'd be there anyway, so it would save us a trip over there.  Because of the early start, the kids gave up their room to Opa and they camped out in the living room.

Opa's first appointment was at 7:30 am, so my plan was to be up around 5 or 5:15, have some breakfast (and a bunch of coffee!!) and be on the road by 6.  The reality was that I woke up about 4:15, snuggled up to my husband, and tried to go back to sleep.  Then I worried and worried that if I did fall back asleep, I would sleep right through my alarm (yes, it's happened before - more than once.)  So, 4:30 am, I was up, out of bed, with my coffee going.  About 5:30 am I decided to finally wake Saxon up and was rewarded to a kick in the jaw.  What a great way to start the day - or not!

The trip over was uneventful.  We checked Opa in for his appointment and headed to Gonda for Sax's very first PFTs (pulmonary function tests.)  At our clinic kids don't start PFTs until the age of 5, and our CF nurses said they are only 'practice' for the first year and don't actually count until age 6.  I understand why after watching Sax trying.  His biggest problem was putting his tongue in the way when he was blowing.  Hopefully he'll get better at it as he gets older.

Practicing his PFTs before the nurse got the nose clamp out.
We had a little bit of down time after they gave him some albuterol (inhaler) and waited 15 minutes before the next set of PFTs.  One of the joys of homeschooling is, when you have a clinic day, you still have homework to do!!

Writing his spelling words
We tried to get some homework done off and on during the day. Some attempts went a little better than others.

His last 2 appointments for today were with Dr P and Marcia and Vicki.  We got his PFT results (which I didn't understand, so they had to explain to me.)  His PFTs came in at 103%, which I understand is really good, especially for the first time.  (For those not in the CF world/not familiar, the best way it was explained to me is - for his age group, say he's supposed to be able to blow 1 liter of air per minute.  If he only blows half a liter, that would be 50%.  If he blows a whole liter, it would be 100%.)

It was very exciting to share our big new with Dr P that we are expecting again in the spring.  I told him I was upset about a conversation with Sax's primary care doctor who, in no uncertain terms, told me that having another baby is not in the baby's best interest because of the complications I had with Baden and his eventual passing.  I had never even told Sax's other doctor I was pregnant, so I don't know how he knows unless he was checking my chart.  He told me "rumor has it."  Whatever.

Dr P's prognosis on the pregnancy was very optimistic though!  He said, in addition to the VX770 and other medications currently in clinical trials (see the CFTR Modulation), there are many more on the horizon.  He believes that, at some point in my kids' lives, they will be able to live a nearly-symptom-free life even with CF.  It gives me a lot of hope to hear him say this.

Dr P asked about Sax's bowels again because I had mentioned that we were having some constipation issues with him again and was getting worried about all the medications we have to give him to keep things moving.  According to Dr P, it is much more common to have looser stools than having massive constipation.  He asked if it seemed to be affecting Sax's appetite, which it does when he complains of stomach aches severe enough that he doesn't want to eat.  His lack of eating brings us back around to the BMI issues (which is down again because his weight is back to 16.7 kg again.)

And now, the worrisome......

There are a few symptoms that Sax displays that Dr P has been thinking about and reviewing with his nurses, which is what is prompting some testing.  When Saxon sweats, especially in the summer, he takes salt tabs because he seems to sweat a ton of salt out.  However, we rarely see any actual wet sweat on him.  Also, when he has been getting constipated, we noticed it seems to be quite dry in spite of him drinking water and PediaSure all day.  One possibility that came up is his body is reabsorbing liquids too quickly or he's not secreting enough water.  The first step he wants to take is GI testing.

Sax will be going in for a series of GI tests that last 3 days.  This means 2 arrivals at 7:15 am (the first of which will be fasting) and one arrival at 8:15 am.  I'm not sure what all the tests consist of at this point.  I know he can't have any of his stool softeners, laxatives, or any other "bowel" medications.  He has to fast after 8 pm the night before his tests start.  The appointment sheet says he will be served "a breakfast of eggs, bread, and milk that contain a contrast agent" and he will be served a lunch the first day also.  I'm going to say good luck to that because, try as I might, I can't get him to eat eggs!  The order didn't provide any additional information for the following days, so hopefully they'll tell us something when we're there.

After we were done with Dr P, we went back to wait for Opa to finish with his appointments.  He had some skin cancer cut out of his neck, some basal cell carcinoma removed from his face, and a biopsy done on his back.  They are pretty sure they got all of it from his face and neck, but believe that the spot on his back may be melanoma.  It'll be at least a few days before he has the results.  He had to have someone there to drive him home.  I think I will be going with him to his next appointment when he gets his stitches removed because they may need to cut into his back some more, depending on what the biopsy shows.

Around 1130 ish we were done with all ours and Opa's appointments.  I had planned on taking Sax to the Zollman Zoo as a little field trip, but decided against it.  We'd had a long day and Sax was getting crabby.  Instead Opa was going to treat us to lunch, but we were going to wait until we got back to Albert Lea.  Sax loves Yamato - the Japanese steakhouse, so that's what he picked.  We got within a block of the restaurant.... and Sax got carsick :(  He was so upset because that meant we couldn't go to the restaurant.  I didn't want him to get sick at the restaurant.  We ended up going home and ordering Yamato to go.

He dove in to his fried rice and miso soup (can't forget the Yummy sauce!)  I'm going to have to try to make this because he loves it so much.  I had gotten the California roll because it doesn't have raw fish in it, just the imitation crab meat.  He wanted to try it and ended up eating a whole piece.  I'm so glad he's finally trying new things :)  Now if only we could get some of these tummy issues taken care of....

Wednesday, May 22, 2013

Tune Up 1 Days 4, 5, & 6, Followup, and a Crappy Conversation

Insert disclaimer here because of a 'crappy' conversation!  You've been warned!

Sunday morning, Scot told me he had seen some police-type sedans and SUVs in the parking lot.  Eventually a Sheriff and a City K9 Unit  showed up out there with, literally, hundreds of pedestrians dressed in colorful, dressy clothing and robes.

This is what we could see from Saxon's room.  A friend of mine later messaged me and told me that the Dalai Lama was at the hospital!!  It's kind of exciting to be able to tell him that he was there at the same time, once he's old enough to know who the Dalai Lama is.  We watched the motorcade leave on Monday too.  That was a pretty cool display of flashing police lights and sirens.

Daddy and Sax played with Legos for a while in the playroom on Sunday.  

Saxon also made a special bracelet for me for Mother's Day out of beads and a pipe cleaner.  He was so proud of that bracelet, I wore it for the rest of our stay.  But I love making my little man happy.

That itself was quite a challenge as time went by.  Saxon was feeling better, but he was also getting restless.  His IVs had changed to every 8 hours, but he still had to do frequent vitals checks and 3 CPT treatments daily with his nebulizers.  We compromised by going to the playroom when we had time and watching movies when we were stuck in the room.  I let him play on the Wii for a while.  He LOVES Mario Kart...

... and managed to talk Daddy into buying for him after he got out of the hospital.  He also got his picture taken in an elephant!

There was a tiger picture too, but Sax wasn't interested in that.  Not when there was a Wii just begging to be played.  We had a couple arguments about needing to go back to the room - and eating - and napping - because the Wii was so much more important!  Oh my!!!  But he usually gave in and crashed eventually.

He did NOT want to eat and he did NOT want to drink his PediaSure.  The nurse even threatened to have a feeding tube put in, but that didn't seem to matter to him.

Sax's cultures came back and, in Vicki's words, "his lungs look beautiful."  The only additional culture that showed up was some yeast in his lungs.  So h. influenza, staph, and yeast.  Not as bad as we thought.  The thought is that his sinuses were a majority of the problem.  He even got out of the hospital early!!!  Daddy came to get us on Tuesday instead of Sunday.  Sax was discharged with 3 new prescriptions: Bactrim in pill form 2x per day for 10 days, an anti-yeast pill 1x per day for 10 days, and a nasal nebulizer 3x per day for 21 days

He does NOT like the nasal nebulizer!!!

This is before his PICC line came out.  He was such a big boy when the nurse took it out - didn't cry or anything.  He just said ouch when she was pulling the tape off, but that tape can be pretty painful!  The nurses said they were going to miss him, but how can you not miss (and LOVE) this adorable little boy??

It wasn't much of a surprise when this little boy decided to take full advantage of Daddy being there and getting him ready!

It was nice to get outside and get some fresh air.

He even talked Daddy into taking us to Red Lobster for lunch cuz Scrappy wanted some crab legs - and insisted on cracking them himself....

..... and cracking mine too.  Such a nice little helper.

After 2 days home, we got to take his bandage off.  He was supposed to take it easy, but how do you tell that to a 4 year old boy as active as he it??  Fortunately he didn't have any problems with bleeding or anything like that.  He seems almost as good as new!!

Yesterday we had to go back to Mayo for his post-op followup.  Everything was looking good except....

There's  always an exception.

Except he hadn't pooped in 2 days, and his BMI has dropped by almost 20%.  Once we get him all cleaned out, it will probably go down more.  Dr P ordered an abdominal x-ray, and it wasn't pretty.  He is fully of poop and gas again.  (I'm going to post the x-ray as soon as I get it from the clinic.)

Dr P thinks it's all sitting low enough that we should be able to get him going with suppositories and enemas without having to have an ng tube placed and pumping him full of Golytely again.  This time we are using pediatric suppositories instead of the glycerin ones we had been given before.  I gave Sax one last night and we made a little progress, then a second one this morning, and made a little more progress.  Unfortunately from the looks of how much was on the x-ray, we still have a ways to go.  Sax tried fighting me when it was time to do the morning one, but when I explained that it was either that or the ng tube, he gave in, even though he squealed most of the time.

Hopefully in the next day or so he'll make more progress without needing the enema.  If he doesn't go enough in the next couple of days, I have to get back to the clinic, but we're hoping not to have to go that far!!!

Saturday, May 11, 2013

Tune Up 1 Day 3


This little boy really needs an off switch or button!!!  He is bouncing off the walls today!!  That must mean he's feeling better.  But I've had to threaten him with time-outs and taking away toys because he's taking things a little too far.  He started to do the gator death roll while getting his antibiotics.  That can cause his PICC line to come out if he pulls too hard on it, which would mean another surgery to put it back in.  We've tried explaining that, but he's just not hearing us.  

I know it's a little taxing to spend so much time in the room, but he hasn't been confined.  We've been going down to the play room, but we've also explained that he has to do his treatments and medications or he will be here longer.  Sax has also been chewing on his feet and sucking on his toes which, of course, is not a good thing either.  Hopefully when he gets to go outside in a few days he can run off his pent up energy.  I don't think it helps that, as much as I tried, I couldn't get Sax to take a nap.

I slept by Saxon for a little bit last night, but I just couldn't stay comfortable, so I went back to the window seat.  I'm glad I did, because the night nurse said his nose had been bleeding during the night.  She cleaned up his face pretty well but it was still on his pillow and blankets.  After some breakfast, nasal spray, and morning meds and treatments, we figured a bath would be the best way to get him really cleaned up.

Have you ever tried to bathe a 4 year old with a PICC line in?  Especially one as energetic as my son?  Let me tell you, it was a very trying experience.  His day nurse wrapped his PICC area in plastic wrap and then wrapped the rest in a stretchy rubbery tape.  

Showing off his arm wrap and a fishy toy behind his back
She told us not to get it wet because he'd have to have it redone.  I only put a couple of inches of water in the tub, but still had to cut his bath short.  He just couldn't understand he shouldn't get it wet.  He would ask me if he could put his arm in the water, I'd say no, and he'd try doing it anyway.  It was hard enough trying to get his hair washed without getting the bandages wet. On the plus side, they gave us baby shampoo to use, so he smelled like baby soap and baby lotion when we snuggled afterward.  

This is his right arm - these spots are where they had originally tried putting in his PICC line.

Being silly after his bath.
Since he had still been pretty good at that point, I agreed to go to the playroom for a while.  I told him he could play until about noon because we had to go back, order, and eat before it was time for his afternoon thumpies and antibiotics.  I was surprised when he didn't go straight to the computer and opted for a tote of cars and Monster trucks instead.  He found a couple different tracks to drive them on and was quite content while I sat back and watched. 

The weekend worker from Child Life came in to visit since we were the only ones in the playroom.  Sax was interested in playing some board games, but we couldn't find any.  All the cabinets have locks so we hadn't even looked in any of them.  She pointed out the board game cabinet and told us it is never locked and we're welcome to take a game or a few back to the room with us if we'd like.  When I asked about weekend activities, she said there would be one around 2.  Unfortunately that is when he is scheduled for his meds.  If we didn't make it back down there, she was going to bring the activity to us.  Sounded like a good plan to me!!!

Dr Pianosi came to see us while we were still in the playroom too.  We lucked out that it is his weekend to work.  He repeated that Saxon's lungs looked really good on the bronchoscopy and asked if he'd been coughing.  He seemed happy to hear that he has been quite a bit.  As of right now, Sax's lung cultures are still only showing h. influenza, which is normal for him, along with a large amount of white blood cells.  Sax's nasal cultures have started growing staph.  I was just trying to absorb all the information, so I didn't ask him to elaborate on that.  We'll see him again tomorrow so I'll be able to get more information about it.  Dr P did order a change of antibiotics to treat the staph for now.

When we got back to Sax's room, we played a couple games of Candy Land after ordering lunch.  It took over an hour for our lunch trays to come and they forgot some of the order, so that was a bit of an ordeal.  Fortunately it's the only time it's happened and normally it doesn't take long for most meals to come.

Contemplating where the picture is so he can jump ahead

Loving the game!!

Can you guess who's winning?
After beating me twice in Candy Land, Sax threw a fit - and a few game pieces - because I drew a picture card and was close to winning.  That was the end of playing that game!

Our lunch didn't show up until almost 1:30.  By the time I got Sax's food cut, salted, and buttered, the nurse was already coming in to do his meds.  Shortly after that, the RT showed up.  Sax decided it was a good reason for him not to eat then.  That was disappointing because he'd had such a good appetite the day before.  He also had to have the cap changed on his PICC line.  He didn't like having to wear a mask for it, but to make things easier, Buppy wore one too.

I suggested we nap for a bit since Daddy was coming to visit today.  I told Sax that he would have a lot more energy if he got his nap out of the way, then he could play with Daddy a whole lot more.  Child Life came in while I was trying to get him down.  The volunteer that was supposed to come today didn't show up, so they didn't have a formal activity.  Instead, she brought the planned activity to Sax's room for him to do - a ceramic elephant piggy bank to paint!  That made him happy!!  I still insisted he had to lay down for a bit longer and try to nap before he would get to paint.  After another hour, I gave up and let him work on his project.

He got his own brand new set of paints with the piggy bank

Trying to decide on the next color

The artist hard at work - I love this picture of him!!!!

His finished bank

We played Go Fish until it was time for supper.  

Mommy told him Go Fish!

That didn't cause too many problems because I only won one game, and all the rest we either tied or he won.

Daddy got here after supper and made a certain little boy very happy with the gifts he brought - especially the balloons!

He also got cards from Grammy and Raine, along with a few presents, which he loved.  It was difficult getting him to leave all of his stuff in his room so he could take Daddy to the playroom.  But he forgot about that once he had the chance to show Daddy the trains, aquarium, and Monster trucks.
Which one is the little boy???
All of a sudden Sax grabbed his pants and said he had to use the bathroom.  When he realized there wasn't a bathroom in the playroom and we would have to go back to his room, he changed his mind.  I insisted we go back because I really wasn't in the mood for cleaning up any accidents.  And that is when the tantrum began.  Besides the yelling, which is pretty typical for him, he kicked off both shoes, then kicked them out into the hallway.  I picked him up and started back to the room, and he yelled and cried the whole way.  His punishment?  No more play room for the day if he's going to act like that!!!

At least we had a nice view to accompany his 'musical' talents!

I love sunsets

He finally settled down for his treatments when Daddy laid down with him in the hospital bed.

Like father, like son....

Since Daddy is here, I made a quick trip over to the NICU since it's night time.  I wanted to see if our favorite NICU nurse was working.  I was just going to leave a note letting her know that Sax was here and, if she had a chance to stop over, we'd like to see her.  The receptionist said she was working and brought her out.  She came over to Sax's room and visited with us for a little while.  The kids loved her too, and she was so great with Baden.  We still get cards from her and have sent a couple of our own to her via the hospital.   She said she still thinks about our Little Warrior quite often - that little man who touches so many lives.....  She's going to try to make it back later this week to visit again.  I told her we'll be here all week!

Now, at 10:50 pm, Sax is watching 101 Dalmatians for the 10th or 11th time today... still not asleep....  I'm hoping he crashes soon because he is definitely overtired!!

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!