Post-Op Update

I was completely exhausted yesterday, so I never updated after the surgery.

 

The procedure started at 12:04, and the doctor came out to talk with us around 12:25.  I was shocked!  He said CJ did great.  There was no bone growth around the bar, and they were able to just straighten it a little and pull it out as planned.

 

We were able to go back to recovery once he woke up a little bit.  Sitting on the bed with him was his pectus bar!  Thankfully, they had cleaned it up really well for us!  It's narrower than we expected.  Here it is:

 

The recovery nurse gave him some apple juice and vanilla wafers.  He needed some food in his stomach before taking the oral pain medication.  He needed to have good pain management on the oral medication before we could be released.  We stayed in recovery until almost 2:30.  At that time, we were discharged and able to head home! 

 

CJ spent the rest of the day alternating between sleeping and eating.  I think he was making up for all the eating he couldn't do between midnight and after the surgery!  (He is a teenage boy, after all!)  We were told to avoid heavy/fried foods for a while until his digestive system was able to get the anesthesia completely out of its system, because it could have caused nausea.  Otherwise, there were no restrictions on his diet.

 

He had some pain and a little swelling at the left incision site, but they said to expect that. That was the side the stabilizer was on.  I don't know if that's why that side was more swollen & sore, or if maybe that was the side the bar was pulled out.  Overall, though, the pain meds were doing their job.

 

CJ slept through the night without needing additional pain meds.  He woke up around 9:45AM asking for some, though.  The incision sites look good.  He still has some swelling & tenderness on the left side, but it's nothing to worry about.

Today's the Day!

It's finally time for this journey to end.  We arrived at the hospital and checked in at 10:00AM.  CJ's surgery was scheduled for 11:30.  They did the usual height/weight/BP stuff, then they took us to pre-op where we met with the anesthesiologist, had the IV put in, and saw the surgeon.  CJ reiterated to just about everyone that he wanted to keep the bar...looks like that is going to happen.  LOL!

Thankfully, things were running fairly on schedule, and they took him back just after 11:30.  The procedure should take about 30-45 minutes.  There is a possibility that some bone has grown around the bar.  If that is the case, it may take a little longer, because they will need to chisel around the bar to get it out.  Overall, though, it's a fairly simple procedure of straightening the bar, and pulling it out.

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!

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 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.

Back in the hospital

Well, today is exactly 4 weeks since CJ's surgery, and we're back where we started...in 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:  http://en.wikipedia.org/wiki/Vancomycin)

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.

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!

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.

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.

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.

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...

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 Healthline.com, "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."  (http://www.healthline.com/health/allergies/nickel#2)  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.

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

Lunch

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!

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.