Tuesday, October 7, 2014

Oh Happy Day!

CJ had appointments this morning with the Infectious Diseases doctor and the surgeon.  For the last 6 weeks, we've been taking CJ to the hospital to have blood drawn.  He continued his oral antibiotics.  Our hope was that since his blood work has been within normal levels the last several times, CJ would be released from the ID doctor's care.  We were ALL tired of antibiotics!

Happily, Dr. Han agreed to let CJ discontinue his antibiotics.  He wants CJ to have some blood drawn in a month to make sure the levels are staying within normal range and the infection isn't coming back.  Yay!

When we checked in to the surgeon's office, they sent us for an X-ray.  After looking at it, Dr. Dassinger said every thing looked great, and he was pleased with CJ's progress.  Of course, he hates that we were the 1% that has to deal with an infection, but he was glad to hear CJ had been able to discontinue antibiotics.

So, we go back for blood work the first week of November, and hopefully, the results will show that we truly are finished with the staph infection.  We love Dr. Han, but we really don't want to see him again!  LOL!

Unless problems arise, we are on a normal post-op schedule with the surgeon.  We'll see him in May 2015 at the year mark of the bar insertion.  Assuming all is well, we won't see him again until May 2016.

I'll post again when we hear about the blood work next month.

Thursday, August 14, 2014

A Quick Update

Just a quick update to say that CJ is continuing to do well!  He's still on the oral antibiotic 3 times a day, and the healing at the incision sites is progressing.  His last lab work showed everything staying in normal ranges.  We go back to the Infectious Diseases doctor next week.  I'll post again after that.

Wednesday, July 23, 2014

Freedom! And summer finally begins!

CJ had an appointment with his ID doctor today, and we were VERY hopeful that the PICC line would be removed.  The lab work showed everything within normal ranges!  And since the incisions were closed and not draining, we had every reason to have that hope.  CJ was so confident, he actually wore his swim suit to the doctor's office, so I could drop him off at the pool on the way home!  Remember, he hasn't been able to swim yet this summer.  And he usually practically lives at the pool during the summer.

The doctor came in and talked to us.  He asked if there had been any fever or pain.  We were pleased to be able to answer no.  He then asked both of us if we were comfortable with removing the PICC.  We both said yes.  Then the doctor said those words we were longing to hear:  he was going to pull the PICC!

CJ had been really nervous that the process of pulling the PICC.  He was worried it would hurt.  That was the only apprehension he was feeling when the nurse came in to pull the line. 

When the nurse came in, it took a few minutes for her to get set up and remove the tape & stuff securing the line into the arm.  When that was done, she told CJ to take a deep breath.  He looked away and took the breath.  What he didn't know, was that while he was breathing in, the nurse was pulling the line, wrapping it around her hand like yarn.  As CJ let out his breath, the nurse said, "OK.  That's it."  CJ's eyes got wide, and he was completely surprised that it was already done!  I really wish I had a picture of his face; it was priceless.  Obviously, it didn't hurt; it was a quick and painless procedure. 

Here's a picture of the PICC line:

While CJ held a cotton ball on the hole where the line was, the nurse measured the length of the PICC line.  It's important that the length of the line that was pulled out equals the length of the line that was inserted; obviously, no one wants any pieces of the line left in the body.  I'm not sure what would happen if the measurement didn't match; thankfully, ours was spot-on.

The doctor prescribed CJ an oral antibiotic that he'll take for another 2 months.  It's a hefty dose:  1000mg cephalexin 3 times a day.  Unfortunately, we are still on a 6:00AM, 2:00PM, 10:00PM medication schedule, but at least it's just quickly swallowing a couple of pills instead of a 30-minute hook-up.

CJ was so excited about the PICC line being out!  Then came the words that completely deflated him.  The doctor said he didn't want CJ swimming for another couple of days while to make sure the site for the line was healed.

As we left the doctor's office, CJ's attitude was on a downhill slide.  He wanted me to just drop him off at the pool anyway; he'd waited to swim long enough.  I was afraid we were about to have a long argument, when a thunderstorm rolled in to the area.  Thankfully, this took care of the problem; the storm closed the pool for the rest of the day. 

Wednesday, July 16, 2014

Recovery Continues

Got a couple of great reports today!

First, we got a call from Dr. Han with the results of this week's blood work.  Everything looks really good!  All the inflammatory markers are back within normal range!  We're hoping that since his incision finally closed up, the doctor will pull the PICC line next week when we see him.

Secondly, we went for a follow-up visit with our surgeon today.  CJ had a couple of x-rays taken, then we saw the doctor.  Dr. Dassinger was happy with where CJ is in his recovery, and he was glad to see both incisions had finally closed.  The x-rays looked good.

The doctor said that CJ was free to do whatever activities he felt comfortable with, except things like organized football and, of course, no swimming with the PICC line.  Normally, he would have us come back in 6 months, but since CJ had the bar infection, he wants us to come back in 3 months.

That's about all for now.  Hopefully, next week, I'll be able to report that the PICC line is out, and CJ is able to enjoy the rest of his summer without any limitations!

Friday, July 11, 2014

Quick update with good news

Just wanted to post a quick update.  Last night, CJ's right incision finally scabbed over!!!  We really are on the road to healing now!

Tuesday, July 8, 2014

Post-Camp Report

CJ spent last week at camp and did great!  He enjoyed himself, rode his bike, and even went a couple of days without pain medication at all.  By the end of the week, he was starting to feel it, though, and decided to come home Friday night instead of Saturday morning.  Sleeping on the cot, and more specifically, getting up from it was his chief complaint.  He continued his IV infusions all week, never missing a dose.

It only took a couple of good nights' sleep at home to recover, and CJ was regaining his activity level.  He's continuing to ride his bike and feel better overall.

On Monday, the home health nurse came by to change out CJ's PICC wrappings & valve and to draw blood for labwork.  During the week at camp, CJ's left incision closed up.  The nurse took a look at the incisions, and changed out the bandage on the right side.

Today, we went to see the infectious diseases doctor for a check-up & got the results of the labs.  CJ's labwork looked good.  His inflammatory markers were all normal.  Dr. Han said that he probably would've discontinued the IVs and gone to oral antibiotics, but since one of the incisions is still open and draining, he feels we need to continue the IV.  We'll see him again in 2 weeks & reevaluate.  He was going to email Dr. Dassinger & update him, just in case he wanted to see us before our scheduled appointment next week.

Friday, June 27, 2014

Friday Report

We went to see the Infectious Diseases doctor today for a check-up.  He says CJ is doing well, although he's not healing as fast as he'd like.

They did lab work first, so that they would have the results before we left.  Dr. Han, the ID doctor, thinks CJ may end up on antibiotics longer than initially expected: 3 months or more.  However, after 6 weeks, he may be able to switch to oral antibiotics if the infection in responding well.

The labs came back, and & overall, Dr. Han was pleased.  The white blood count, liver & kidney functions were all normal.  His sed rate was elevated, as expected, but it was still 10 points lower than when he was in the hospital, so that's good.  Another marker that Dr. Han follows is the C-Reactive Protein (CRP).  A normal rate for this inflammatory marker is below 10.0.  CJ's CRP was 12.1.  Unfortunately, we didn't have a previous test to compare this to, but Dr. Han said that most of the time when people have bad infections like CJ's, the CRP is in the 100s.  So, he's very pleased with that.

We also talked to Dr. Han about CJ going to camp next week.  Since we knew he would be post-op, he isn't signed up for any strenuous activities.  CJ's dad will also be there all week, and there is a medical facility where CJ can get his infusions and go inside if he gets overheated.  Dr. Han wasn't thrilled about the idea, but since we'd thought things out and had things arranged, he was ok with it.  He gave us a permission slip stating that CJ could be there but that he could not participate in strenuous activities or swimming.  He also told us to make sure the incision sites were well covered and cleaned daily.

We asked him about the pain that CJ still feels in the lower left side of his chest.  The right incision is still draining a lot, but the left incision doesn't drain as much.  He said that it's possible the left side is hurting more because there is still more infection on that side due to the lack of drainage.  He didn't seem too concerned about it; we'll revisit the subject at our next appointment, and of course, if it gets worse, we will call.

After our meeting with Dr. Han, the nurse came in and changed out CJ's dressings.  She sent us home with some extra supplies in case he needs them at camp.

We have a follow-up appointment for the Tuesday after CJ gets back from camp.  The home health nurse will come that Monday to draw labs & change his dressings.

The IV supply company came by and dropped off another week's worth of CJ's Ancef AccuFlo balls.  We had requested extra, since he will be at camp next week, but apparently the shelf-life of the medicine is only 7 days.  Because of this, they couldn't bring us extra.  They said they could deliver to the camp, but we know some people going up toward the end of the week and could just take the few he'll need to finish out the week.

CJ is continuing to do really well.  He's active and still not having to take a lot of pain medication.  Generally, he can go all day but then starts feeling sore towards the end. 

Thanks again for the continued prayers!

Thursday, June 26, 2014

On the Mend!

CJ has had a couple of really good days!  He's been mostly pain-free & almost back to normal!

Tuesday had a slow start, but CJ ended up spending most of the afternoon at the neighborhood pool hanging out with his friends.  Obviously, he couldn't swim; his two incision sites are still open and draining, plus the PICC line prevents it.  But he was able to have fun being social.

Later, he went to his Taekwondo class.  Again, he didn't actually get to participate, but he was able to reconnect with his classmates & instructors and see what pattern they are currently learning.

We ended the day taking in a family movie.  He was starting to wear out by then, but we all figured he'd just be sitting at home, so why not enjoy a movie!  We had pain medication with us, but he never needed it.

(On a side note, we had the privilege of seeing an advanced screening of the movie "When the Game Stands Tall," a movie based on the true story of the longest winning streak in sports history...The De La Salle High School football team.  It was an AMAZING movie!  It's all about perseverance, teamwork, and overcoming adversity...and what's really important.  I think of it as "Rudy" meets "Remember the Titans."  Anyway, it comes out August 22, 2014...Go see it!)

CJ woke up once during the night needing some pain medication, but other than that, he slept through the night!

Yesterday, he again spent a lot of time hanging out with friends at the pool.  He only had some ibuprofen once!

Last night, he slept in his own bed for the first time in almost 2 weeks.  All of us were happy to have this small element of "normal" back.  He called for some pain medicine around 2:30AM, but other than that, he sleep well...and late!  He slept until almost 10:00AM!  Yes, things are getting back to normal!  LOL!

CJ's antibiotic infusions are going well.  Because he's been on so many antibiotics, we've added probiotics to his daily regiment.  We are giving him Life 5 probiotics by Young Living.  We are big believers in Young Living Essential Oils and the quality of their products.  We are also encouraging him to eat yogurt.

We have an appointment with the ID doctor on Friday.  CJ is feeling well enough that he's decided to go ahead and go to camp next week.  Since we knew he was going to be post-op, he signed up for fairly easy classes, so we don't have to worry about that.  My husband will be at camp, too, and he'll be able to monitor CJ and administer the IV antibiotics.  Of course, we've cleared this with his doctors!

Thanks for the continued prayers...they're working!

Tuesday, June 24, 2014

A Crazy Couple of Days

Friday night, CJ woke up once during the night, but was able to sleep through the rest of the night.  Shortly before 8:00AM, our surgeon's Fellow came by and looked at CJ's incisions.  He thought they looked good; he was happy with the draining and said there was no problem with going home.

A little later, Dr. Dassinger, our surgeon came by to check on us.  He reassured us that we had done everything right; there just isn't a way to know how or why we fell into the "lucky" 1% of Nuss Procedures that gets an infection.  He commented on how well CJ look.  We will keep our previously scheduled post-operative appointment next month.  Then, assuming everything is going well, we will see him at regular intervals that most pectus bar recipients do:  in 6 months, then in a year, then another...until the bar comes out. 

Our ID doctor will oversee the continued staph treatments.  We should see him later this week.

As is usually the case with hospital discharges, it was a matter of "hurry up and wait."  We finally got home around 11:00AM.  After getting CJ settled with some pain medication, I had to focus on a very busy brother was getting married at 5:00PM!  (Yikes!)  And with the last 5 days spent in the hospital, nothing on my to do list got checked off!

At 12:30PM, the nurse for home health care came to go over all the paperwork and to show us how the IV medication will work.  It's actually a really neat set-up.  The PICC uses what's called an "elastomeric pump."  All I have to do is hook up the antibiotic, and it does the rest.  It pumps itself using positive pressure, so there's no equipment, electricity or batteries needed to work it, and it's really small and ambulatory.  Each pump, or AccuFlo Ball, is a single-use pre-measured dose of the medication.  It uses a one-way injection valve that just screws on, so there are no needles, and I don't have to worry about back-flow.  The injection rate is pre-determined, so I also don't have to deal with that.  It takes about 30 minutes for CJ's dose to infuse. 

It's a simple 5-step process:
1)  Sanitize the PICC injection valve with alcohol pad
2)  Push 5CCs of saline solution
3)  Attach AccuFlo Ball & start infusion
4)  Push 5CCs of saline solution
5)  Push 3CCs of heparin (a blood-thinner)
To make sure the correct order is remembered, the nurse told us to think of the acronym SASH:  Saline, AccuFlo, Saline, Heparin.  I forgot to mention the saline & heparin were in premeasured syringes that just connect to the injection valve, continuing to make this a very easy procedure.

About 1:30PM, CJ threw up.  At that point, he decided that he wouldn't be going to the wedding.  We were all sad about it, but we certainly understood.  The nurse helped us through CJ's first at-home dose of Ancef (the antibiotic).  Her visit was about two hours, which I didn't count on, so I was even more frantic when she left.

A dear friend came and stayed with CJ while the rest of us went to my brother's wedding.  I FaceTimed him when the ceremony started, so he was able to attend electronically...I love technology!

While I was at the reception, CJ called and asked that I come home.  He was hurting and just needing me.  When I got home, I gave CJ some pain medication. 

Around midnight, CJ let the pent-up frustrations of the last week out to me.  He was hurting and agitated.  "Why is this happening to me?"  The emotional release & agitation lasted an hour, until he fell asleep.  I assured him that while we don't know why it happened, we can trust that everything happens for a reason.  I reminded him of my favorite passage in the Bible, my life verse:  "All praise to God, the Father of our Lord Jesus Christ.  God is our merciful Father and the source of all comfort.  He comforts us in all our troubles so that we can comfort others.  When they are troubled, we will be able to give them the same comfort God has given us."  (2 Corinthians 1:3-4, New Living Translation)  I told him that sometimes the only person that can truly connect with, reach, and comfort someone who's going through a bad situation is someone who's actually gone through it themselves.  Their experience lends credibility to what they're saying.  Instead of someone who just sympathizes, his experience will allow him to empathize with others.

After his emotional release, CJ had a great night's sleep.  Sunday was up and down with pain and nausea, but there were no major issues.  He didn't throw up again, so that's good.  By mid-afternoon, the past week caught up with me, and I had to lay down for a nap.  My nap lasted two-and-a-half hours!

Our first full day of IV antibiotics at home went well.  The process is so easy that CJ was able to do the infusion himself!  The IV antibiotic is given 3 times a day.  He's also taking an oral antibiotic for at least a couple of weeks that he takes twice a day.  He'll be on the IV for 4-6 weeks.

Monday, CJ was feeling really well.  He had a great attitude, he was joking around, and he was begging to get out of the house.  A nurse came by to draw blood for lab work and to change the dressings & injection valve.  This will be done each week.

He felt well enough to go to a going away party in the evening and then later to the grocery store.  Personally, I think he just wanted to ride one of those scooters at the store!  LOL

The night started well, but at midnight, he needed some pain medication.  At 2:00, he needed more.  I had been sleeping in my bed, but at that point, he asked me to stay with him.  He was really hurting in the lower rib area on his left side; the same pain he had complained about in the hospital.  He was agitated about the pain and lack of sleep.  He moaned a lot during the night, but never really woke up again. 

Overall, it appears we're on the mend and that things are looking up.

Saturday, June 21, 2014

Almost Home - Friday Update

CJ & I both had a great night's sleep.  We slept through the night and only woke up when doctors started making their rounds.

The surgery team came by at 6:45AM.  The doctor wanted him eating more; he hasn't had much of an appetite.  CJ had been concerned about a "bubble" of puss that had developed on his right incision, but the doctor wasn't as concerned about it, because it was draining.

Between 7:00 & 11:00, CJ had a rough time.  His pain level went up again, and the pain returned before he could have more Oxycodone.  His left incision was hurting a lot.  (This is the side that had the I&D yesterday.)  His morale really dropped, he pain wasn't really being alleviated, and he was refusing to eat (even after getting him a milkshake at 9:00 in the morning).  He said it felt like someone was pressing on the upper left side of his chest and at the same time a had was reaching in trying to pull out the lower left ribs.  There was a weird pinching/tugging feeling.  Finally, a little before 11:00, CJ was able to get some Oxycodone and Motrin.

Dr. Dassinger, who performed the surgery, came in to check on CJ.  He said he wanted to make sure the pain was under control with oral meds before we leave.  He wasn't as concerned about the lack of appetite; he felt that would return as the infection and swelling go down.

By 11:30, the Oxycodone had kicked in, and CJ felt much better and wanted to get out of the room for a while.  We got a wheelchair and went outside to a park/playground area of the hospital, stopped into the gift shop and got some candy, and went to cafeteria for lunch, where CJ actually ate a little bit!

At 1:15PM, we had a bit of a treat!  CJ had asked a Child Life specialist named Emily (who happened to be the same lady that talked to us in pre-op) if there was any way he could go see the hospital's Angel One helicopter.  Emily was able to schedule a tour for us, and we got to go to the helipad on top of the hospital to see the helicopter.  It was definitely the highlight of CJ's day!  He even left with some goodies from the flight team.

At 1:45PM, CJ had a couple of friends came to visit.  He was still in good spirits.  While CJ was visiting with his friends, his dad & I visited with his nurse & discussed discharge.  There was no real medical reason for him to stay (no more fever, and doctors were confident of treatment plan), but CJ was so worried about pain management at home, that he really had a lot of anxiety & didn't want to leave.  We decided to wait a little while to see how CJ felt after his friends left.

We ended up needing to cut CJ's visit with his friends short.  His pain had gone up, and he was getting tired from all the activity.  At 3:30PM, he and I both went down for a nap.  We slept for an hour and a half!!

Around 5:00PM, we talked with the doctor and made the decision to stay another night for CJ's peace of mind and to make sure the pain management is well-controlled with only the oral medications we would have at home.  If all goes well, we will be discharged in the morning.

At 6:00PM, CJ at  2 slices of personal pizza and some tater tots.  Less than an hour later, he was nauseous.  We called for anti-nausea medicine.  In my opinion, the drawer that holds the anti-nausea medicine in a hospital should never be allowed to run out...telling a kid who's feeling nauseous that they have to wait for the pharmacy to send up more is just mean!  Thankfully, CJ was able to make it, and we didn't have any issues like last night.  An hour after requesting it, CJ finally got his Zofran!

At 10:00PM, CJ's pain level was an 8, so he got some oxycodone.  An hour later, it was still an 8, so he got some Motrin.  The pain was especially bad on the left side near the incision.  When I looked at it, I noticed some swelling near the sight; puss may be building again.  Ten minutes later, a writhing CJ said the pain was up to a 10 and told me to "get the pain out."

By midnight, CJ was feeling a very little relief.  His nurse offered Tylenol.  The pain level was still at 8, but at least it seemed to be getting a little better.

It's now 12:30AM, and CJ finally seems to be feeling better.  We're hoping he gets complete relief and we can have a good night.  Prayers appreciated and requested!

Thursday, June 19, 2014

A Better Day - Thursday Update

Well, we had a good night, and both of us slept well. (I apparently slept too well, as CJ had to wake me up to tell me to stop snoring! LOL! In my defense, my sinuses are bugging me a little bit.)

At about 3:00AM, it was time for blood to be drawn for the lab, since it was the fourth dose of vancomycin again.  At 5:30, CJ got up to use the bathroom said he felt like there was a pinching/tugging at the left incision site, like clothes that got caught on the skin.  It wasn't really painful (pain level was about a 6), just uncomfortable.  His chief complaint was still the upper chest.
At 6: 45, Surgery made its rounds.  We told the doctor about the pain CJ had been experiencing on the left side and the red, swollen area around the incision site.  When he felt it, said he could feel puss under the skin.  He said as long as there is puss, there will be fevers, even on antibiotics, which answered my concerns from last night.  He was going to talk to our surgeon that did the procedure about what he wanted to do.  They may use warm compresses to pull puss to surface or may make a small incision to help it along.

A little later, the Infectious Diseases doctor came by and gave us some good news:  the cultures were growing, and they knew for sure the infection was staph aureus.  This is the most common species of staph and what they had been expecting to see.  They still didn't know the strain of the staph, whether it was MSSA or MRSA, but as soon as the cultures were big enough, they will run those tests.  I got the impression it would be Friday morning before we found that out.  (For more information on staph aureus, click here)

Mid-morning, his pain level went up to an 8, but he was still fever free.  He had another dose of vancomycin at 9:00, and his attitude & morale was much better than last night.

Around noon, the nurse came in and said we were changing from vancomycin to two different antibiotics.  This surprised me, because neither of the doctors that morning had mentioned changing anything.  Instead of vancomycin, CJ would be on Ancef (more info here) and Rifampin (more info here).  Since this was an unexpected change, I had the nurse page the ID doctor who ordered the change and ask to come explain it to me.  CJ was feeling a little nauseous, so he also asked for some anti-nausea meds.  When they checked his temperature, it was up a little to 100.8.

Thirty minutes later, the ID doc came by said cultures showed MSSA!!!  (As a reminder, that means the staph is NOT the resistant strain and is more easily treated!)  That was the reason he changed antibiotics.  He said he was hoping to get in to tell us before the new orders went through, but obviously, that didn't happen.  We were so thrilled about this news, it was hard to wait until the doctor left to proclaim it to the world!  We've had so many people praying for us, that we knew they would be rejoicing with us.

Over the next couple of hours, CJ had a rough time with pain.  He had very shallow breathing and sounded winded when he spoke.  He also started getting agitated again like last night.  The nurse took his temperature, and it was 100.5.  His pain level even got back up to 9.  It's so strange to see the change in CJ when his pain & fever start going up.  It's like Dr. Jekyll & Mr. Hyde.

Around 3:00, CJ was feeling much better and decided he wanted to go visit another patient we met our second night here.  This young man is 2 years older than CJ and had the Nuss Procedure earlier this week.  They clicked pretty quickly, and enjoyed sharing "war stories" of pain, recovery, and missing the "cereal bowls" in their chests!  We had a great time visiting and ended up spending a full hour in their room!  Both boys started getting tired at the same time, so we said goodbye and headed back to our room.

Just as we got to the elevator, the surgeon called my cell phone.  He was looking for us, because he wanted to do an "I & D" procedure on CJ.  "I & D" stands for "Incision & Drainage," and it meant they wanted to cut into the wound and drain the puss.  It's a simple procedure, and the doctor could do it bedside.  Instead of making an actual cut, he was going to stick a syringe into the area under wound and suck out the puss.  Obviously, CJ was very concerned about it hurting, but the doctor assured him he wouldn't feel it.  He first gave a shot of lidocaine around the area; anyone who's had to have lidocaine shots before dental work, will know how pleasant this experience is.  However, once the lidocaine took effect, everything was fine.  The doctor pulled out 3CCs of puss and sent it off to the lab for testing.  Our hope is that removing this puss will keep CJ from spiking a fever again.  If he doesn't spike a fever again, there's a possibility we could go home tomorrow.  If he does spike a fever, they may decide to put a drain in to help the infection drain out.

After the I&D, CJ's pain level was 7.  He just wanted to rest for a bit, so his dad & I went to have some dinner.  When he woke up, our old CJ was back.  He was pleasant, joking, and fever-free.  We were having such a good time that he actually ended up having to call for some pain medicine because he'd been laughing so hard!  (Coughing, laughing, hiccups, & sneezes still hurt.)  He actually commented on how much better he was feeling.

A little after 9:00, CJ noticed the right incision sight oozing. It had soaked through the gauze, so he requested a nurse to clean & rebandage it.  The nurse applied antibiotic ointment and a fresh bandage, but said we should wait until the surgeon came by in the morning to see what he wanted to do about getting the puss cleaned out.

At 10:15, CJ said he was feeling a little nauseous again, so we requested some Zofran.  Less than 30 minutes later, he vomited all over himself.  It happened so fast, he didn't even have time to tell me he was about to be sick.  Needless to say, we spent the next 10 minutes getting all of CJ's bandages, sheets, & clothes changed.

Once he got back into bed, CJ felt much better.  He went to sleep shortly after that and is so far sleeping well.  Our prayer is that we both have a good night again and that his pain & nausea are managed well.

As I mentioned, there is a chance we could go home tomorrow, and because of that, the hospital has already scheduled a home health service to come to our house & teach us how to use the PICC.  If we end up not going home, they will reschedule the service.  The "complication" is that the home health services rarely get new patients set up on weekends, so if we don't go home tomorrow, we're pretty much guaranteed a stay until at least Monday.

I'm heading to bed now and praying for another decent night's sleep.

Wednesday, June 18, 2014

Wednesday Update

CJ had a great night. Pretty much slept right through. I woke up every few minutes for about an hour until the nurses got one of his monitors reset. After that, I was able to have a good night's sleep as well! We've had a lot of information thrown at us today, so I'll try to be thorough.

It was a day of ups and downs.

Infectious Diseases doc came by in the morning & clarified some stuff.  Said the "gram test" from yesterday actually showed that there was a bacterial infection, but that they didn't really know for sure it was staph.  But it's consistent with staph, so that's why they were treating him with the vancomycin.  The cultures will confirm staph & what form it is.  The complication is that since CJ has been on antibiotics, the cultures may not grow at all.  When the ID doc was there, he said they hadn't started growing yet.  He was keeping his fingers crossed that they would.  The only other way to confirm staph is by doing a DNA test on the bacteria.  He requested that yesterday, but the lab didn't want do it because the sample came from a wound.  He's going to call and talk to them to try to get it done.  He did confirm that the infection had not entered the blood stream.  This is a HUGE praise! 

Because vancomycin is so strong, and because it can cause kidney problems, blood is taken ever 4 doses to monitor levels.  His fourth dose was a little before 9:00AM, so they had to stick CJ and pull some blood.  He was a little concerned to hear he was having some blood drawn, because of the trouble they'd had getting blood on Monday.  But he wasn't dehydrated anymore, so it was quick and painless for him.  They got it in one stick.  They also started giving him Zantac, because the vancomycin can cause heartburn.

They ordered a "PICC line" for CJ.  It's like another kind of IV that's higher on the arm and goes straight into a major vein.  PICC stands for "Peripherally Inserted Central Venous Catheter."  A PICC line is inserted into a vein in one of the arms and extends all the way through to a location near the heart. This is an area of high blood flow and allows better mixing of the IV medications.  With a PICC line, we will be able to continue the vancomycin at home.  The vancomycin  treatment will last 2-6 weeks, so the PICC line is a big deal.  We will give him the injections 3 times a day, & a home health care service will come by once a week to draw blood & change the dressings.

The PICC line is inserted by a radiologist using x-ray.   About 30 minutes before we went down to Radiology, one of the radiologists came by and put some numbing cream on CJ's arm.  We weren't allowed in the room for the procedure, because it's a sterile environment.  They use an ultrasound to guide the wire into the vein, then cut the line to the appropriate length (so each person's line is custom.)  Once the line is inserted, they confirm the placement with an x-ray.  The whole procedure took about 30 minutes.

Most of the afternoon was pretty uneventful.  CJ would napped a lot from the Benadryl.  He continued his breathing therapy every two hours.  Pain levels were consistently 5-6 .

CJ's temperature was up a little bit later in the afternoon, but everything else was fine.  Then, at 5:30, his pain level really started to go up.  He was complaining about pain in his upper left chest and didn't want to move his left arm at all.  We needed to change his shirt, because 1) he was in the same shirt he wore to the hospital, and 2) it had puss that had drained from his incision.  Since he was hurting so much, we decided to wait until they switched the IV drip to the PICC.

By 6:08PM, CJ was really agitated.  He felt warmer, so I requested temp taken.  His primary complaint was still his upper left chest.  He complained of difficulty breathing & asked for oxygen, even though his O2 level was 96% & his heart rate was 118 bpm.  When they took his temperature, he had a fever of 102.9!  His pain level was up to a 9.  He was in so much pain, that he actually told the nurse to cut his new shirt (that he loved) to keep from having to raise his arm.  When we got his shirt off, I noticed the left incision site was red & swollen.  It wasn't open, but it sure looked like it was infected underneath.  I can't put into words how miserable he was...this was not my CJ.

Almost an hour later, he was still hurting a lot.  The nurse sent a request to the doctor for additional pain medication, and finally, at 7:30, CJ got some morphine.  When they took his temperature again around 8:00, it was back to normal.

Seeing him in the state he was in completely wiped me out.  He was so miserable, and there wasn't a thing I could do to help.  I actually had to leave the room for a few minutes while the nurses worked with him to weigh him and help him to the bathroom.  My biggest concern was the fact that he spiked such a high fever when he'd been on IV antibiotics for 3 days.  It just didn't make sense to me.  It really had me worried.

I was glad that CJ got some relief and was starting to return to his normal self by the end of the evening.   He and I both needed a good night's sleep.

Tuesday, June 17, 2014

Back in the hospital

Well, today is exactly 4 weeks since CJ's surgery, and we're back where we the hospital.

Yesterday was a long, hard day for CJ.  He continued having pain Sunday night.  At 3:30 yesterday morning, he woke me up wanting something for pain.  When I got near him, I noticed he was even hotter than he'd been.  His fever had gone up to 103.5!   After ibuprofen & some moisture to cool his skin, it was still 103.3 an hour later.  He pain also had gone up, and he was having more trouble breathing.

Because he of the high fever and continued pain, I made an appointment for him at his pediatric clinic.  We continued treating his pain & fever by alternating oxycodone & ibuprofen.  When I took his temperature at 10:20, it was normal again.  Since the fever was down, and he hadn't vomited anymore, I hoped that we turned a corner toward improvement.

Unfortunately, at 11:15, he threw up.  At noon, he got some more pain medication, and I happened to notice a small amount of puss oozing from his right incision site.  I put some antibiotic ointment that had been prescribed for him on the incision.  He was still feeling nauseous, so I gave him the anti-nausea medicine his pediatrician had called in the night before.

His pediatrician appointment was at 2:20PM.  He was NOT happy to have to get up and move.  Because he was in so much pain and just felt so bad, anything & everything was an annoyance.  His pain level was up to a 9, and he was just miserable.  He couldn't move without pain, and he was having an especially difficult time moving his right arm.  The doctor ordered a chest x-ray and lab work, which was expected.  She ordered a CBC, strep test, flu test, and sed rate.  Because he'd been throwing up and not able to drink much, CJ was pretty dehydrated.  The lab technician couldn't get a vein to pull the blood, and CJ was getting more and more agitated.  She went ahead and did the strep & flu tests, and I gave him a Valium to calm him down.  While we waited for that to kick in, we went ahead and did his x-ray.  The lab tech ended up having to draw blood from CJ's hand, because she just couldn't find a vein that would take the needle.  Even that vein didn't pull enough blood to do the sed rate, but it was enough for the CBC.  The flu & strep tests were negative (we expected that, but it was good to rule them out.)

The doctor came in and said CJ had pneumonia in both lungs, and the CBC showed that he had a pretty high white cell count of 17,000.  When you add that to the dehydration, she said he needed to be in the hospital where he could get IV fluids and antibiotics.  So, she sent us back to Children's Hospital. 

The ER had been called and was expecting us, so we got right in.  They started an IV, and even after the bag had emptied, CJ still looked dehydrated and sickly.  His fever had also gone back up to 103.  IV antibiotics were started.  After 5 hours in the ER, CJ's fever broke, and he was hydrated enough that they felt comfortable moving him to a room.  (Part of the delay was determining if he could go to a regular room or if he needed an intermediate care room...a step up from ICU.)

We finally got into a room around 9:30PM and settled in for the normal hospital routine of vitals every hour, etc.  I was exhausted from the past two days, so CJ told me I deserved to go home & sleep in my own bed.  Such a sweet boy!  His grandmother stayed with him.

CJ had a pretty good night. He only needed pain medicine a couple of times, and his temp stayed down most of the night. Between 4:00 & 5:00, it started going up again, but by the time I got back to the hospital around 7:00 it was normal. Our biggest issue was getting him to do his breathing therapy to get those lungs opening back up. It really hurt, so of course, he didn't want to do it. We were continuing with IV antibiotics, fluids, and oxygen.  The doctor that made rounds said he wanted to get an ultrasound of CJ's lungs for closer examination.

At 11:00, one of the surgeons came by and examined CJ.  He was very concerned about the tenderness over the pectus bar and the redness around the incisions, especially the right one, which was continuing to look worse.  He wanted to consult with the doctor that actually performed the surgery, but he thought they may want to perform an ultrasound or CT to determine if there was an infection around the bar.

We went down for an ultrasound a little after noon, but it was only of the lungs.

**Warning:  there's some icky descriptions in this paragraph!**
At 1:00PM, our surgeon who worked on CJ came in to check on him.  After telling him what led up to our readmission, the doctor took a look at CJ's chest.  When he examined the right incision site, I noticed it seemed to be seeping fluid.  When the doctor pressed on it, it oozed a thick greenish liquid.  The doctor said he wanted to get a culture of the ooze to see what kind of germs we were dealing with.  He got some swabs and stuck one into the incision.  I was actually surprised how deeply he got the swab in!  Of course, CJ didn't like this at all; it hurt him quite a bit.  When the doctor pulled the swab out, the fluid (now a thick, brownish liquid) literally poured out.  I couldn't believe it; it was at least a good tablespoon if not more.  After cleaning the area a bit and putting a bandage on it, the doctor said that while CJ may have some pneumonia, his gut feeling was that we were dealing with a bar infection.  This only occurs in about 1% of cases, and he's only had one other patient that had it.  (Yay us.)  It would take 24 hours for the cultures to grow for us to know exactly what it is.  He also said he was going to send an Infectious Diseases doctor to come look at CJ.  The reason for this is that, since we're dealing with an infection around medical equipment, the ID doc would be able to determine the best antibiotic for the infection.  He also wanted us to move to the surgical wing...I guess because this is a post-surgical complication.

About an hour later, the ID doctor came in.  The initial results from the cultures came back as staph.  As a result, they would be starting us on a very aggressive antibiotic called Vancomycin.  There are two forms of staph infection:  MSSA and MRSA.  While no one wants staph, MSSA is the preferable strain, because it is more easily treated.  The "R" in MRSA stands for "resistant," and as the name implies, is harder to treat.  If that's what it is, we will also have to be in isolation.  Since staph is taken pretty seriously, and because we won't know what exactly we're dealing with until late Wednesday or Thursday, we were told we'll be in the hospital at least until Friday.  :(

As I mentioned, Vancomycin is a very aggressive antibiotic, so there are several precautions taken when it's being given.  In many patients, it causes a reaction called "Red Man Syndrome" or RMS.  The biggest symptom of RMS is (as the name implies) the patient turning red.  It can also involve fever, rapid heartbeat, and nausea, among some other things.  To prevent this redness and fever, Benadryl and Tylenol are given before the Vancomycin.  Since it's so strong, it can also cause kidney problems, so after the 3rd dose of Vancomycin, blood is drawn and tested.  They keep a close eye on kidney functions as long as your on it.  (More on Vancomycin here:

At 3:45PM, CJ was given the Benadryl & Tylenol in preparation for the Vancomycin.  He received his first dose of Vancomycin at 4:10PM.  About 45 minutes later, we moved to the surgical wing. 

CJ's second Vancomycin dose was given around 9:45.  Shortly after that, we were moved to another room on a different floor.  This was for CJ's protection as well as any other patients, since we don't yet know what form of staph we are dealing with.

CJ is doing better with his pain, and his fever seems to be staying down.  I will update again tomorrow.  Thanks again for all your prayers.

Sunday, June 15, 2014

A bit of a setback

I have been working on a post that went over the rest of our hospital stay and CJs recovery since being home.  I still plan on posting that; I'm afraid life got back into full swing when we got home, and I didn't do a good job of keeping up.

Now, however, I wanted to post an update on our last two days.  CJ had been doing amazingly well.  He until yesterday, he hadn't had any pain medication (prescription or over-the-counter) for several days.  He was active (within reason), and he was sleeping in his own bed instead of in a recliner.

Yesterday, all that changed.  CJ went to a lake with some friends.  We had warned him to be careful and not overdo his activity.  Unfortunately, he did a little bit of canoeing and swimming in deep water.  (He had been to the pool but had been staying in waist-deep water.)  At 2:00PM, he called and asked us to come get him from the lake and to bring pain meds.  (Something you should know about CJ:  this child was born to be outside!  He loves any outdoor activity, especially if it involves water.  If he's calling us to pick him up from a lake outing 5 hours early, he is NOT doing well!)

As soon as my husband got to the lake, CJ asked for medicine.  When they got home around 4:00, he was still in a lot of pain (pain level 9 out of 10) and was complaining of not being able to take deep breaths.  By 8:30 (after another dose of oxycodone), he was so agitated about the pain not being relieved (pain level 8) and not being able to take a deep enough breath, that we gave him some Valium.  At 10:00PM, the pain still had not let up, and he still couldn't get a good breath; his breathing was shallow and rapid.  We decided it was time to go to the hospital.

Thankfully, we didn't have much of a wait in the ER.  In triage, we were surprised to find that CJ was running a fever of 102.7!!!  Quite frankly, I felt guilty as his mom that I hadn't noticed he was running a fever; we were just so focused on the pain & breathing.  Almost immediately, we were sent for a chest X-ray.  The first priority was to make sure the pectus bar had not shifted.  Secondly, they wanted to make sure fluid wasn't building up in the lungs (pneumonia) or around the bar. 

He was continuing to complain about the pain, still at a pain level 8, the highest it had been since leaving the hospital 3 weeks ago.  Unfortunately, he couldn't have anything more than Tylenol, since it was too soon for anything he'd already had, and they didn't want him having anything too strong in case he had to have surgery.  The attending physician called for a surgery consult to look at the X-ray.  Thankfully, the bar was firmly in place and had not shifted.  There also was no fluid in the lungs or around the bar.  The incision sites were healing nicely.  The cause of the fever was a bit of a mystery.

The surgeons said they will have the surgery clinic call on Monday to check on us.  Since we wouldn't be admitted or having surgery, they went ahead and gave CJ a shot of Torodol for the pain.  They also prescribed an antibiotic to combat whatever may be causing the fever.  We came home, and CJ was able to sleep through the night with me next to him on the couch.

He woke up at 7:00AM asking for pain medication, so he got some oxycodone.  He had a temperature of 101.  Two hours later, he got ibuprofen, and we began the regimen we were on when we came home from the hospital.  At 10:50, he threw up.  An hour later, he threw up.  Then his fever went up.  It's been holding steady at 102 all day, even though he's taking ibuprofen.  He hasn't eaten all day, and continues to be sick.

We are frustrated about this.  It feels like one step forward, two steps back.  CJ is feeling down, obviously.  We are hoping this is short-lived.

Friday, June 13, 2014

The First Three Weeks Home

Continuing the update...

We got home Saturday, and everything was going great.  We were all happy to be back home.  CJ's first night was uneventful.  We had him on a strict schedule of oxycodone and ibuprofen to control the pain.

Everything was going fine until mid-afternoon, when CJ threw up.  He threw up a couple of times over the next few hours, but by Monday morning, he was doing fine.  We suspect the pain medication was causing it.  The other possibility is that he just picked up a little stomach bug.  His dad & I weren't really feeling great either, but that could have been sympathetic.

Monday was Memorial Day, and CJ felt well enough to go our neighborhood pool just to say hi to some friends.  He had a good time showing off his new chest to everyone!  You could tell he already had a better self-esteem.  Everyone was impressed with the results of the surgery and amazed that CJ was up and around.

I noticed one morning that the right incision had opened back up a little bit.  When I took a closer look, I saw it was oozing a little greenish puss.  I cleaned it, applied some anti-biotic treatment, and bandaged it back up.  After a couple of days of this, it had closed back up and looked like it was healing nicely.

The rest of the week was really uneventful.  He was managing his pain well with the medication.  He slept in a recliner.  Sometimes getting him to get out of it was a challenge, as was getting him to do his breathing exercises, but by the end of the week, he was moving around well and talking about sleeping in in own bed.

He still tired easily, but he was amazing us with how well he was doing.  He was even able to attend church and a friend's Eagle Scout Court of Honor without a problem.

When we left the hospital, we were told to make an appointment with CJ's pediatrician for two weeks later.  The surgery clinic would also be making an appointment to see them in 4-6 weeks.  I called and scheduled our appointment with his pediatrician for June 6th, 17 days post-surgery.

The second week CJ was home, he continued amazing us with his recovery.  He was starting to go to the pool every day to visit with friends.  Because of the incision I had treated, we didn't let him get into the water yet; we wanted to make sure that was good & healed.  The hospital had said no swimming for two weeks, so of course, as soon as that two weeks was up, he wanted to be in that water!  He wasn't happy with us.  :)  He went to a baseball game with his church youth group (where he caught a ball!), and he even felt well enough to attend his Taekwondo class (without really participating, of course) one day! 

At his pediatrician's appointment, his doctor was very please with how well CJ was doing.  She looked at the incision site that I had treated, and said it was closed & looked good.  She wanted him to give it another couple of days before getting in the water.  Other than that, everything was awesome!

We eased him into pool activities.  He would get about waist deep in the water, but he didn't swim, and his incision sites were covered with waterproof bandages. We continued making sure he changed the bandages as soon as he got home, and that he stayed in water that was shallow enough for him to touch.  Despite the restrictions, CJ could finally start enjoying summer!

The third week, CJ was almost back to normal.  He wasn't taking any pain medications, he had moved to his own bed, and he was starting to do a few of his chores that didn't require much movement or strain.

We were all a bit surprised over this.  Since most literature says the recovery time is 4-6 weeks, we really didn't expect him to be this active yet.  We also certainly didn't expect him to be pain free.  I can't tell you how grateful we were about it.  He would tire a little more easily than he had before the surgery, of course, but it was never very bad.  He was doing a great job of self-regulating.  It looked like everything was on the mend.

Monday, June 2, 2014

An Overdue Update Through Discharge

I apologize for not posting an update in over a week.  Naturally, things have been a little nutty, and I've just been too tired to think straight enough to post.

As I've been thinking of where to start, a quote from a favorite movie kept coming to mind:  Let me explain.  No, there is too much.  Let me sum up.  (The Princess Bride)  LOL!

First of all, let me say CJ is doing really well!  He is recovering at home now and is quite frankly surprising many with his rapid recovery!

Our second night in the hospital was another long night.  CJ had not urinated since the catheter was removed the day of the surgery.  He had been asked to try to go, but he hadn't been able to.  This can happen as a result of the pain meds and isn't really unusual.

At 1:30AM, the nurse woke us up, because the surgery team told our nurse that CJ must urinate. He got out of bed to try but couldn't.  CJ was very agitated; which was understandable considering it was the middle of the night, & he was hurting.  He said he felt like he needed to go but couldn't.  He said his pain level was at 8 on a scale of 1 to 10.  Surgery ordered a bladder scan to see how much urine was in the bladder.  The scanner read almost 1000cc (1cc = ml, so we're talking a liter!).  Surgery ordered a catheter to empty the bladder.  CJ got very upset & asked for more time.  He really did not want a catheter again (understandably).  He requested some more pain meds & something for his stuffy nose.  By 2:20AM, still no urination.  CJ was given some pain medicine.  I spoke to the nurse & requested some Valium for CJ to calm him, hoping relaxing would release urine.  After the valium was administered, the nurse gave CJ another 15 minutes to try before she had to give the catheter.  Unfortunately, we never saw any progress, so at 2:45AM the nurse administered a catheter to drain the bladder.  By the time it was done, 1100ccs of urine had been drained!  Even the nurses couldn't believe he was holding that much.  Naturally, CJ felt and looked a lot better!  We were finally able to go back to sleep.

During the day (Thursday, 2 days post op), CJ continued to do well.  He was getting up fairly easily, able to walk around without too much difficulty, eating and keeping it down, pain management was well-controlled...The doctors were even talking about sending us home the next day!

Later in the day, CJ had to be threatened with another catheter but ended up not needing it.  We had quite a few visitors that day, which really wore CJ out.  Between the pain meds and the lack of sleep the past 2 nights, our hospitality was starting to fade.  Thankfully, our friends are understanding.

Friday was a little harder for us.  We finally had a good night last night, but CJ was really struggling more with pain.  They moved him off the IV pain meds to orals, and he was dealing with a little more pain as a result.  He went for a post-operative x-ray to check the bar placement, and the side view required CJ to raise his arms.  This really bumped the pain level up.  They said he would probably be able to go home later in the day.  However, CJ was really uncomfortable going home before he knew the pain was well-controlled (especially at night) with the oral pain meds.

Since he was dealing with more pain after the x-rays (which looked great, by the way), and because he was so nervous about leaving yet, the doctors agreed that CJ should stay one more night to make sure the oral pain meds were balanced and working.

He did pretty good Friday night, and around 11:30AM on Saturday morning, CJ was discharged!  We were all very happy to be heading home.  I could definitely tell he was feeling better when CJ opened one of his balloons, sucked in the helium, and started yelling at me from the other room!  LOL!

Wednesday, May 21, 2014

Post-op Day 1

If I thought surgery day was long, I was very mistaken!  What an incredibly long day Post-Op Day 1 was.

At 12:40AM, the nurse woke me up to tell me we were getting a roommate.  By the time they brought in a bed, the patient, asked them questions, etc., and the new roomie was settled in, it was 2:00AM. 
At 4:00AM, CJ woke up nauseous again, but we were able to get some medication administered before anything happened again.  Sleep was off & on.
At 6:00, doctors, residents, interns, students, or whoever they are started making rounds and checking on us.  I managed to get a little more sleep until 7:00, when shift change occurred. 
Our surgeon came by around 8:00 or so to check on our roommate, so he popped in to see how CJ was doing.  He was pleased with how well CJ looked.  Our roommate was discharged around 9:00, so we had the room to ourselves again.
A little before 10:00, CJ was hit with sudden nausea, and before I could let anyone know, he was sick again.  CJ's attitude has been great.  Despite the pain of throwing up, he said, "Well, at least we know I can sit up."  LOL
The catheter came out at 10:15, which made CJ very happy.
At 10:30, the physical therapist came in and had CJ really sit up & move to a wheel chair for a while.  As soon as he was settled in the chair, he went back to sleep, and pretty much stayed that way until a little after noon, when he had to do his breathing exercises again.  He really didn't enjoy those breathing exercises.  Then, the physical therapist came in to get him back into bed.  He was glad for that.
The physical therapist came back around 3:45 for CJ to get up and try walking a little bit.  As soon as CJ had taken a couple of steps, though, he felt dizzy and needed to sit down.  He sat in the wheel chair for another couple of hours (sleeping most of the time again).

CJ had a long line of visitors, which he loved, but it sure wore him out.  By the end of the evening, he was exhausted & grouchy.  Throughout the day, he struggled with nausea, but he never threw up again. 

We were told of a private room that was opening up and asked if we wanted it.  With the horrible experience of the previous night, we definitely took the opportunity to move.

Sometime between 9:00 & 9:30, CJ seemed to turn a corner, and finally found his appetite.  He had some chicken noodle soup, pudding, and beef jerkey.  And he started drinking even more.

With the knowledge that he was feeling better and that we wouldn't be getting any midnight roomies, hopes were high for a good night's sleep.

Long day...

It's been a very long day.  But it's been a good day.

We arrived at the hospital and checked in at 9:25.  Almost immediately, we went through the admissions process and were called back to pre-op.  Vitals were taken, CJ changed into the gown and scrub bottoms.  We met with the surgery nurse who went over some basics and re-asked questions we had answered several times already.  (I understand the need for redundancy; it just gets to the point where it's funny.)  We then met with someone from pain management to discuss what would be involved in managing pain after the surgery.  The surgeon also came by and checked in, making sure we didn't have any final questions.

A young lady also came by whose job it is to just make sure the kids who are having surgery know what they are going to experience, answer any questions, show pictures of the OR & rooms, and tell about all the cool things the hospital offers for the patients here.  It's a really cool job to have, and she did a great job; she made ME want to have surgery!  LOL!

Everything had gone so smoothly & timely, that it looked like we would be right on time for surgery to start.  The scheduled time came and went, then another half hour, then another half hour.  Finally, about and hour-and-a-half after our scheduled start time, they finally came back for CJ.  We gave him kisses and headed back to the waiting room.

It took about 25 minutes for anesthesia to get him hooked up, intubated, and sleeping.  The actual surgery started at 12:45.

Once we had word that the surgery started, we went to grab some lunch.  We hadn't been back to the waiting room for long when we saw the surgeon walking toward us telling us it was over!  The surgery itself only lasted 45 minutes! 

About 30 minutes later, we got to go back and see him.  It was amazing to see the immediate result of the Nuss Procedure.  CJ was obviously a little out of it, but he was able to respond to us.

We were in post-op for an hour or so, waiting for a room assignment.  We got settled into the room, and we had a couple of visitors come by.  He woke up for brief periods, but CJ slept most of the time. 

Almost as soon as we got into the room, CJ was asking for banana pudding.  Unfortunately, he was told he was on a clear liquid diet for the rest of the day.  So, he was stuck with apple juice.  Around dinner time, he requested some chicken broth.  As soon as I opened it, he started complaining of nausea, so we put it away; I don't think the smell sat well with him.
He is on anti-nausea medicines, because the pain, pain meds, & anesthesia meds could all cause nausea.  That is something we really want to avoid.  Obviously, it's very painful, plus the act of throwing up could dislodge the bar.  We were told that if he felt the slightest bit nauseous, to let them know, so they could give him additional anti-nausea medication.
The respiratory therapist came and gave CJ a device to help him do some breathing exercises.  It's important for him to breath deeply in order expand his lungs & to prevent pneumonia.
A little before 8:30PM, CJ said he was feeling nauseous again, so the nurse went to call for the other anti-nausea med.  Unfortunately, it didn't get here in time, and all 20 fl oz (I know because the bag has measurement lines on it) of apple juice he had had came back to see us.  Blech.

Obviously, that didn't feel well, but CJ went right back to sleep.  I eventually got to sleep around 11:30.

Monday, May 19, 2014

On the eve of surgery

It's hard to believe that we are about 12 hours away from this surgery.   It was a whirlwind day with last minute things to be done, though only one thing had to do with the surgery.

The surgeon called in a special soap that CJ needs to shower with this evening and tomorrow morning.  It will kill any bacteria or other little bugs that are living on the skin and add an extra layer of protection against infection.  CJ just needs to use it on the torso (between the neck & the waist) and under the arms.  So, it's a shower before bed, a clean shirt to sleep in, and a shower in the morning before we leave.

CJ is in really good spirits.  He has a dear friend spending the night with him tonight that will go with us to the hospital with us.  We are all doing well, just ready to get this over with.

A Prayer...

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.
And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
--Philippians 4:6-7

Funny how God gives you what you need when you need it.  I have a list of things a mile long that I need to get done today, but I knew I needed to spend time in the Word.  This was the passage I read.

I am struggling with some anxiety.  I didn't think I was, but I realized yesterday when I started crying for no real reason and snapped at my family for small things that I was.  I think I'm more worried about CJ's surgery tomorrow than I want to let on...even to myself.  Of course, I'm also stressed because of all I need to get done today.

But what do I really **need** to do today?  Yes, preparations need to be made for a hospital stay.  School needs to get done.  A doctor's appointment needs to be attended.  But really, the fridge doesn't NEED to be cleaned out.  The dining room doesn't NEED to be straightened up (even though I've been trying to work on it for a week).  The checkbook doesn't NEED to be balanced today...I can do that tomorrow at the hospital; it might provide some needed distraction.

No, what's really NEEDED today is for me to love on my family.  What's NEEDED is for me to rest in the peace of God that surpasses all understanding.  THAT is what is most important.

Father, take my anxiety.  Take my fear.  Take my worry.  Thank you for the gift of being a mother.  Thank you for the gift of my precious son.  Thank you for the medical advances & knowledge that you have given that allow for procedures like this one tomorrow to take place.  Abba, I ask that you protect CJ during his surgery and recovery.  I ask that you guard my heart & mind in Christ Jesus.  Mostly, though, I ask that you be glorified through our family during this time.  May others see You in the way we conduct ourselves and in our conversations.  Help me to keep my focus on You today, and guide me through those things that truly need to get done.  If I'm able to get to the other things, that's a bonus, & I thank you in advance.

Thursday, May 15, 2014

Got the time!

So, we got a call from the hospital this morning.  After asking some medical questions (does he use medical equipment, what medicines does he take, has he been exposed to various diseases, etc.), they made sure we knew that CJ was scheduled to be admitted after the procedure and asked if we had any questions.  I did have a couple of questions about what kind of things to bring from home and some clarifications about a parent staying in the room that they answered for me.

Now for the specifics...
We check in at 9:25AM.  His procedure is scheduled to start at 10:55AM and should take about 2 hours.

The typical pre-surgery rules apply:  no eating after midnight, can have a cumulative total of up to 8oz of water or apple juice until 8:45AM, then nothing in the mouth after that.

During pre-op and recovery, a parent will be present with CJ and only one other person 12 or older can visit.  This is good news for CJ's brother, who just turned 12, but bad news for his 10-yr-old sister.

How long he is in recovery will depend, of course, on CJ and how he's doing.  It may be an hour, maybe more, maybe less.  From recovery, he'll go to his room & new home for the next few days.

Family & friends will be allowed to stay in a special waiting area in the hospital overnight if they want.  One parent can stay in the room with CJ where there is a pull-out bed for them.

So, that's that.  I guess the next time I post will be the night before the surgery, unless something else comes up.

Prayers for the next few days:
1. Health...please pray that our entire family stays healthy prior to the surgery.  Pray that we stay healthy while he's in the hospital, too.  I'd hate for any of us to be unable to visit him.  CJ isn't feeling well today, but I think it's more from allergies & not enough sleep the last few days.  Also, his chest is really hurting today.
2. Anxiety...please pray against it for all of us (including grandparents & close friends!).
3. Doctors, nurses, & technicians...pray for their health.  Pray that the procedure goes as planned.

Tuesday, May 13, 2014

One week and counting

It's hard to believe that we have only one week until CJ's Nuss procedure.  It's also hard to believe we still don't know exactly when it is!  My husband and I are used to hospitals that are more firm in their scheduling.  I guess with all the unexpected surgeries & procedures a children's hospital has, their schedule needs to be more fluid.

Since we hadn't heard anything & we were just a week out, I called today to see if I could find out CJ's surgery time.  I was afraid I'd missed something in the mail or a phone call.  They told me they don't find out surgery schedules until 3days out, which means for a Tuesday surgery, they will know on Thursday.  So, it'll be another couple of days before we know our surgery time.

As we get closer, please continue praying for our family.  Specifically, we need prayers for continued health for all of us and any anxiety to be calmed.  This mama has had a few anxious moments, and I know CJ has had some, too.

Oh, one good thing, we received a letter from the insurance yesterday stating that our precertification was approved.  Still wish we knew how much this was gonna cost, though...

Thursday, May 8, 2014

This is really happening!

So, we got CJ preadmitted to the hospital.  Basic info: insurance, name, birthdate, etc....and of course a payment worked out since we haven't met the deductible yet.  I also got a call from one of the nurses at our insurance company wanting to make sure we understood the procedure and to see if we had any questions.

Suddenly, this all seems so real.  Hard to believe we're just a couple of weeks out.  We've known this was coming for years, and yet, it feels almost like it's just rushed up on us!

Please be in prayer for us as we gear up for this big day.  We've got a busy couple of weeks before the surgery, and my prayer is that we'll make the most of our limited family time.  Also pray for our nerves and that we are able to rest completely in the peace of God.


Thursday, May 1, 2014

All clear!

Well, CJ went back to the doctor today, and the nickel allergy test was negative.  All the other tests were negative as well.  With that done, we are all clear for surgery at the end of the month!

Here is a picture of CJ's back after the patches were removed.

Tuesday, April 29, 2014

Nickel Testing

CJ began his nickel allergy testing today.  It was quick and painless.  The doctor asked a few questions, then he placed a set of 3 patches on CJ's back.  Each patch is divided into 12 squares.  Each square had a different substance that was being tested.  The first square is nickel, but the patches also test for cobalt, latex, and several other substances (see the complete list below).

CJ must remain dry while the patches are on.  He cannot shower or participate in activities that will make him sweat.  He finds the patches uncomfortable from a movement standpoint, but they aren't painful.

We will return to the doctor on Thursday afternoon.  The doctor will remove the patches and look for reactions.

Here is a picture of CJ's back:

Here are the allergens tested on the patches (I have no idea what most of these are):
1. Nickel sulfate
2. Wool alcohols
3. Neomycin sulfate
4. Potassium dichromate
5. Caine mix
6. Fragrance mix
7. Colophony
8. Paraben mix
9. (Negative control)
10. Balsam of Peru
11. Ethylenediamine Dihydrochloride
12. Cobalt dichloride
13. p-tert-Butylphenol Formaldehyde resin
14. Epoxy resin
15. Carba resin
16. Black rubber mix
17. CI+Me- Isothiazolinone (MCI/MI)
18. Quaternium-15
19. Methyldibromo Glutaronitrile (MDBGN)
20. p-Phenylenediamine
21. Formaldehyde
22. Mercapto mix
23. Thimerosal
24. Thiuram mix
25. Diazolidinyl Urea
26. Quinoline mix
27. Tixocortol-21-Privalate
28. Gold Sodium Thiosulfate (GST)
29. Imidazolidinyl Urea
30. Budesonide
31. Hydrocortisone-17-Butyrate
32. Mercaptobenzothiazole
33. Bacitracin
34. Parthenolide
35. Disperse Blue 106
36. 2-Bromo-2-Nitropropane-1, 3-diol (Bronopol)

Wednesday, April 23, 2014

It's Official!

So, here's a recap of the day.

We left our house and dropped our sweet dog off at the vet for his surgery.  Then we headed straight to the hospital.  We checked in a few minutes early, and CJ got that wonderful souvenir bracelet hospitals love giving out!

The day went really well.  The staff at the hospital in every department were wonderful!  Everything went smoothly and on time, if not early.  It turns out we didn't need a chest X-ray, so that wasn't done.  We started with the CT, moved to the Heart Station for the echocardiogram, then went to the Pulmonary Lab for the Pulmonary Function Test.  (It's amazing how much like a maze hospitals can be!  I actually got lost at one point!)

We were done with everything by noon, so we went to the cafeteria for some lunch.  This made CJ very happy, since he had chosen not to eat breakfast.  Even though our appointment with the surgeon wasn't until 2:30PM, we were told we could check in as early as 12:45PM, and they would work us in early.

Unfortunately, as I mentioned in the previous post, being early for that appointment didn't give the radiologist enough time to review the CT and determine the Haller index.  We still discussed the surgery, making sure we understood all that was involved, and when we would want to schedule it.  We have a busy few weeks ahead of us, so we are looking at May 20.  This would give him time to heal before summer and would let him enjoy his break and summer camp more.  We left with a tentative date, and the doctor said he would call us when he had the report from the radiologist.

Shortly after my previous post, we heard from the surgeon's office.  CJ's Haller index was 3.3.  It needed to be at least 3.25, so his PE is severe enough to warrant the surgery.  We confirmed the date we wanted for the surgery, and the nurse gave us the names of some allergists/dermatologists that do nickel allergy testing.  This is not a test every allergist or dermatologist does, apparently. 

With the surgery in just under a month, it's important to get the testing done within the next week-and-a-half, so the hospital can order the correct bar for the Nuss procedure, for which they need about 2 weeks.  As I mentioned in the first post, if CJ has an allergy to nickel, a titanium bar will be used.

The nickel allergy test actually takes several days.  The doctor will do what's called a "patch test."
According to, "in a patch test, the doctor applies a very small amount of the suspected allergen (in this case, nickel) to a small patch that is then placed on the skin and checked for a reaction."  (  As I understand it, we will go in and get the patch on CJ, then 2 or 3 days later, we return to see if there was a reaction.

As soon as I got off the phone with the nurse, I called one of the allergists and got CJ scheduled for nickel testing next week.  The ball is really rolling now. 

We appreciate your prayers for us today.  We are relieved that the Haller index proved to be enough to get this condition repaired, and we are hopeful that CJ's shortness of breath, pain, and low weight will all be on the mend soon.  OH!  And thanks for the prayers for our dog Louis.  He came through the surgery wonderfully, and he is home recovering (unhappily with a cone on his head).  His prognosis is good.  Between the successful surgery and the successful tests for CJ, we are feeling blessed and thankful.

What's next:
April 29 - Nickel allergy testing
May 20 - Nuss procedure

Here are a couple of pictures from our day...

CJ in the CT machine
CJ getting his echocardiogram

The Waiting Game

Well, we finished all the tests early, so we were able to meet with the surgeon early.  This was great in that we were able to finish our day earlier than expected and get home.  The down side, though, was that the radiologist had not had a chance to review the CT and get the Haller index to the surgeon before we met with him.  So, we are still waiting to find out if we will be having surgery.  Boo.  :(

The surgeon will call us later today with the findings.  His scheduler was out today anyway, so she will call us tomorrow (hopefully) to schedule the surgery.  At this point, we are looking at the end of May.

I'll update as soon as we know more.

Tuesday, April 22, 2014

Big Day tomorrow

Well, tomorrow is the big day.  Actually, I guess the surgery day will be "THE" big day, but tomorrow is the long-awaited day.

As of now, we anticipate being at the hospital at least 6 hours.  Ugh.  Here's the schedule we have, so you can be praying for us and kind of know where we are during the day:

9:30AM -- Chest X-rays
10:00AM -- CT
11:00AM -- Echocardiogram
12:00PM -- Pulmonary Lab
2:30PM -- meet with the doctor
Obviously, we're going to have some down time between the last tests and seeing the doctor.  We'll probably work on schoolwork at that time. 
We are hopeful that by the end of the day, we'll have an acceptable Haller index to continue our journey and a surgery date.  Speaking of which, CJ's schedule is so busy, we really need some guidance on scheduling the surgery.
Please pray for us as we go through our day.  Pray that CJ remains calm.  Pray that everything goes smoothly.  Pray that we can find a date that works well for everyone.
While I'm on the subject of prayer requests, please pray for our dog tomorrow, as well.  He has a large tumor being removed.  He will be in surgery while we are at the hospital.  Because of the size & location, it will be a rather complicated surgery.  We love our sweet dog, and we would greatly appreciate prayers for him and his doctor. 
I'll post again tomorrow after all the procedures.  Hopefully, we'll know a lot more!

Wednesday, April 9, 2014

By the way, I've added a "Follow by email" gadget to the left.  You can put your email address in there and be notified by email when I post again.  :)

Two More Weeks

So, this time, two weeks from now, we will be spending the day getting all the pre-surgery tests done for CJ.  It will be pretty much an all day event.  Our first test is at 10, we have another at 11, we are still waiting for one to get scheduled...I'm not really sure how many we'll have or how long they'll last.  I do know we meet with the doctor at 2:30, so I would assume all the tests would be done by then.

CJ has been complaining more about his chest hurting in the last couple of weeks.  Please be praying for his comfort level.  He's also feeling anxious waiting for all this testing to get done.  I think it's just the unknown.  I'm sure he'll feel better when we have a definite course of action.  So will we!

Thanks for checking in!  I'll post again after all the testing on the 23rd.

Wednesday, February 26, 2014

The Next Step

We have received our appointment time for our follow-up at the surgery clinic.  Presumably, this is our appointment that will consist of the x-ray, CT, echocardiogram, etc. that will tell us the severity of CJ's condition.

Currently, we are scheduled for the end of April.  As I mentioned, CJ is hoping for an earlier surgery than we had discussed with the doctor, so I'm going to see if they can move this testing appointment up.

Thanks for your prayers!  We'll keep you updated.

Tuesday, February 4, 2014

And the journey begins...

CJ was born in January, 2001.  As he grew, we noticed a dent developing in his chest.  We mentioned it to his pediatrician, who said it was something we would keep an eye on. 

At another check-up a couple of years later, our doctor confirmed it was pectus excavatum (PE):  "a congenital malformation of the chest wall characterized by a funnel-shaped depression with its apex over the lower end of the sternum; it is caused by shortening of the central portion of the diaphragm, which pulls the sternum backward during inhalation, and by the growth of ribs. Except in mild cases, it decreases the ability of the child to engage in sustained exercise. It also delays recovery from coughs and colds, reduces the ability to eat a full meal (so that most patients are underweight), and often produces a functional heart murmur. Noisy breathing may occur during sleep. A child may develop an emotional problem because of embarrassment over the deformity. It can be satisfactorily corrected by surgery. Called also funnel breast or chest and koilosternia." (  Often, PE causes the heart to move to one side, lung development is hampered, and breathing problems can occur.

However, because most treatments don't occur until patients are at least 13-15, we knew it was just a waiting game.  The cartilage of the sternum is still fairly pliable and isn't hardened, so this is the age when it's easiest to correct. 

As CJ grew & developed, the dent in his chest also grew.  He became winded more easily that his peers.  He frequently complained of chest pains; not major or long-lasting enough to cause us to take him to the hospital, but enough to take note of.  He probably has pains 3-5 times a week for a few minutes.  (Because we had researched PE, we knew this was part of the condition.)  His posture grew wasn't the typical "just sit up straight" kind of lazy posture one often sees in kids; this was obviously more than that.  Another issue was self-esteem.  He had started becoming self-conscious about his chest.  Thankfully, around this time, he met a boy in our neighborhood who was born with a heart condition and had undergone several heart surgeries.  He had quite a scar on his chest, and CJ figured if his friend wasn't self-conscious about his chest, then he didn't need to be self-conscious, either!  His friend & the timing was a God-send!  I should also mention that, as is consistent in PE patients, CJ's weight percentile is low.  He's always been thin, and is currently in the 30th percentile for his age.

A couple of weeks ago, at CJ's annual check-up, our pediatrician decided it was time.  We went to Arkansas Children's Hospital for a consultation.  After measuring his chest, talking with CJ, and discussing concerns with us, the doctor agreed that CJ seems to be a candidate for correction. 

The procedure we plan to have done is called the "Nuss Procedure."  It is a procedure that basically puts a bar under the chest wall, and "flips" the sternum out.  The bars are secured at the sides of the ribcage and remain inside for 3 years.  During this time, the cartilage hardens, and the sternum is basically retrained to stay put in this corrected position.

Before the surgery, CJ will need to have an x-ray, CT, EKG, and some other tests to confirm the severity of the condition.  They will use the CT to determine his "Haller Index," which is the ratio of the distance between the inside of the ribcage and the distance between the sternum and vertebrae.  A normal Haller Index is about 2.5.  Patients with PE often have indexes from 3.25 to as high as 5.5.  Obviously, the higher the number, the more severe the deformity.  The doctor will also order allergy tests for CJ, to make sure he isn't allergic to Nickel.  Obviously, we don't want to find out AFTER a metal bar containing nickel is inserted that he has a nickel allergy!  If he does have an allergy, titanium bars will be ordered.

Because a lot of growth can occur in a short amount of time at this age, the x-rays, CT, EKG, etc. will be done closer to the surgery.  As of now, we are planning the surgery in mid-July, but it hasn't been scheduled yet.  CJ is actually thinking he'd like to have it done sooner, in order to enjoy more of his summer. 

So, that's where we are now.  I'll post more as we know more.