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!