Mastoiditis

Here is the REALLY long story of Benton's adventure in Mastioditis.  The mastoid is the bone behind your ear.  Before antibiotics, mastoiditis was a leading cause of death in children.  Now it is very rare for an ear infection to spread to the mastoid, let alone cause all the drama you'll read about below.

I warn you, this is long, but it seemed easier to just put it all together and this is mostly for my own record.  Also, I included somewhat graphic details and pictures.

Monday, Feb 4:  Benton has had a fever for 5 days.  He is normal and happy with Tylenol.  The nurse at our pediatrician’s office said it is probably just a virus, and unless he shows other symptoms, just give him some TLC.

Tuesday, Feb 5: Benton, day 6 of fever, wakes up from his afternoon nap with swelling behind his ear.  The bone running behind the ear (mastoid) was puffy and his ear was sticking too far away from his head.  It was even noticeable in front.  I called the doctor and they asked if I could get there in 20 minutes.  I dropped Ethan off at my neighbor’s and made it in 30 or 40 minutes, oops.  The doctor looked in Benton’s ears and said they didn’t look “impressive” but the swelling behind was mastoiditis.  He said mastoiditis was very common before antibiotics, but almost always comes from an ear infection, so he was concerned that Benton had it without an ear infection.  He said he would be sending us to Phoenix Children’s Hospital (PCH) for a CT to find the source of the infection (so close to the brain, extra caution is needed).  He had a Nurse Practioner and another doctor come in and look at it too.

I drove Benton to the hospital where they quickly took us into an exam room.  He was not allowed to eat in case any sedation was needed.  We were told in the ER that he would definitely be there over night for heavy antibiotics, but they wouldn’t know more until they saw the scans.  Mike arrived before the scans and Benton (who had been signing all done/bye and trying to escape his ER room for quite awhile) rode on Mike’s lap in the wheelchair to get a CT scan).  He watched Baby Signing Time (which saved us many times in the hospital) on Mike’s iPod while getting the scan.  The nurses had to try quite a few times in several locations to get an IV placed in Benton.  I think it had to be replaced once in the ER as well.

Super taped, trying to make it Benton proof.

 CT

 It is kind of hard to tell without the other ear to compare it to, but his ear is popped out away from his head.

Here you can really see how asymmetrical his ears are.

Waiting in the ER.

 As we were waiting for the scan results, one doctor told Mike in the hall that Benton could eat, but another said no before Mike got back to the room.  As we waited for over an hour for results, Mike gave Benton some fruit snacks and a few sips of water.  I sent a text to who I thought was my home teacher.  He was no longer our home teacher, but still helped us get in touch with our new one who came down and helped Mike give Benton a blessing.

The results of the CT showed that Benton had a lot of pus in his ear/mastoid/surrounding area, as well as two epidural abscesses.  The dura is the leather like covering of the brain.  Epidural meant that it stayed out of the brain (thank goodness) but was inside the skull.  The doctors wanted to do surgery that night and were on their way in from home.  We were taken from the ER to the pre-op area.  The surgical nurse did her best to answer our questions, but most of them had to wait for the surgeons to arrive.  She was very nice and tried to be comforting, but, as she said, “this IS a major surgery.”

The ENT, Dr. Gujrathi, arrived first.  He explained the mastoidectomy he would perform.  He said that the neurosurgeon would cut across Benton’s scalp from ear to ear, go through the skull, push his brain aside, and drain the infection.  Fortunately, that was not the case.  Dr. Bardwahj, the neurosurgeon, was really great.  He explained that he would drill through Benton’s skull above his ear and drain the abscess there.  He wanted to leave the one behind and below Benton’s ear because it was in an area much more prone to damage during surgery, so we would wait and see if it could clear up on its own, or drain with the other “evacuation”.  Dr. Bardwahj continued to affirm that this was a major surgery, but he said, “kids get infections, parents cry, and we fix them; this is a major surgery, but on the scale of what we do, it is not.” He and the nurse were very comforting, confident, but literally holding my hand.  The surgeon asked us a lot of questions about Benton’s behavior trying to find out whether or not the infection had entered the brain (he did not think it had).  We said good bye to Benton as they wheeled him into surgery.  The nurse took Curious George (who Benton had become even more attached to during his week of fever and Benton’s pacifier so he would have them as soon as he woke up).  They told us they would take care of our baby.  The lullaby I usually sing to him is “You are My Sunshine”, which is a really sad song in this context.

Mike and I went into the surgery waiting area and did a lot of crying and worrying.  I tried to comfort myself thinking that whatever the Lord’s will was, it would be done and that the Lord could heal Benton.  Unfortunately, this didn’t calm my fears as it didn’t seem to reduce the chances of Benton not making it through because I didn’t know what the Lord’s will was.  Mike gave me a blessing and I did feel a deep peace for those moments, but I let fear take over shortly after.

The surgeons had said it would be about 3 hours.  After about an hour a nurse came and told us that they were just beginning the actual surgery, so we had hours to wait and to try not to look at the clock.  It was about 11pm I think, so I decided to try and lay down to make the time pass faster.  We put a few chairs together and I laid down with a pillow and blanket (the place was empty).  As I was just starting to doze, I heard Mike walking back towards the waiting room talking to someone.  Dr. Gujrathi was coming in to tell us that his part of the surgery was over and had gone well.  He said that he had evacuated a lot infection from Benton’s middle ear, mastoid, and the tissue beyond that.  He had had to remove part of the infected mastoid bone (which will never grow back, but won’t be noticeable).  He said he did not think any major structures were damaged (facial nerves, hearing, etc.). 

The nurse told us that now that Dr. Bardwahj had started, it would be about 3 hours.  I laid down again, and Mike decided to go home and get some things to bring up.  I think it was maybe an hour later that Dr. B came in and said the surgery had gone well and that Benton would be in his room in about 20 min.  This first surgery left Benton with a titanium plate on his skull.  I called Mike and told him and then went up to the PICU (Pediatric Intensive Care Unit).  By the time I got there Benton was already sitting up and asking for something to drink (sign language).  Throughout his stay at PCH, Benton was never kept knocked out long, much to the entertainment of the nurses and anesthesiologists.  In fact, it was in the immediate “recovery” time from his anesthesia that the nurses called for a climber crib.  Benton actually isn’t the type to climb out of a crib, but the amount of energy he was showing would make you think otherwise.

 Benton slept well that night with the anesthesia still wearing off and pain meds being given. I tried to make sure I was always there (awake) for rounds with the doctors, morning and night, to get all the information.  His white blood cell count had been up when we came in, but was going down.  They had taken samples of his infection and were trying to grow them.  They decided to do an MRI Wednesday morning to see how everything was looking.

Wednesday February 6:   In the morning he felt warm to me and he did have a fever.  They said that was expected both with coming out of surgery and because they had barely started him on antibiotics.  No antibiotics were given before the surgeries because they wanted to get good samples of the infection to grow and test.  I was really worried that the infection wouldn’t go away or that he would get septic shock.  I had asked the pediatrician about the chances of Benton getting a “serious infection”.  He told me, “he DOES have a serious infection; he’s not out of the woods yet”.  That was not very comforting to me.  He and the nurse confirmed that Benton was at increased risk for septic shock because of the infection.  My friend’s infant died of septic shock while going through chemo, so I was really scared about it.  The nurse did say that chemo is a different situation.

We waited around on Wednesday until Benton’s MRI.  It was a about an hour long, so he was put all the way under.  He was intubated for the test, so while he was under they also placed his PICC line, which is pretty much a long term, super IV.  After the test they slowly started letting him try to drink and then eat.  He was happy to oblige, when he stayed awake.  While sleeping, he’d hug his food (he loves food!).  We waited impatiently all day for MRI results and all we heard was “no news is good news”.  If they were planning a surgery soon, he would not be allowed to eat, so we were optimistic.  Benton, from his first appointment at the pediatrician’s HATED all of the poking and prodding, or even being listened to with a stethoscope.  In the ER he even managed a swift kick to a nurse’s face.  It reminded me of stories of my brother in the hospital as a toddler.  My uncle brought him a bat so he could “hit the nurses.” In evening rounds I found out they had decided to do surgery.  They said that second epidural abscess was constricting the venous sinus which handles the blood drainage from the brain (the dominant side in his case).  The doctors thought with a boy as healthy as Benton, he had more to lose from risking the vein being cut off by the abscess than from doing surgery.  They also told us that he had had renal hydronephrosis during the MRI, meaning his kidneys were enlarged.  His bladder was also distended (the anesthesia stopped him from peeing), so they thought it was most likely just a back up in his urinary system.  I called Mike and he was really distraught.

Thursday, February 7:  Benton woke up at about 1:30 am as the nurses messed with him.  I offered him food since he wouldn’t be able to eat in the morning.  He was very excited about a pudding cup.  He insisted on holding the cup and spoon and trying to feed himself.  Then he got his pacifier and George (both of which he was very attached to) and had them along with the pudding and spoon.  Eating was hard this way, and he wouldn’t let me help, so we spent an hour and a half in the middle of the night with him wanting to hold the pudding, and wanting to lay down with it, and me trying to minimize the mess.  (Thank goodness my sister-in-law Lauren jumped on finding us another George so that we could sneak nasty crusty George out long enough to wash him!)  

Daddy made sure he always had a soft blanket in his

crib.

Too tired to eat, but he was NOT letting that food go.

 Sometimes sleeping went a lot better on mom.  I think this was after his MRI.

 We waited for surgery on Thursday (scheduled for 1pm), without Benton being able to eat.  Mike was stressing, but I felt pretty calm about it.  Benton sat on Mike’s lap and watched Baby Signing Time.  Mike said when he closed his eyes, it almost felt like they were just at home on the couch.  Our Bishop came to visit and give Benton another blessing.  He blessed Benton that his body would be able to be strong and recover its abilities (I don’t remember the exact words).  When the neurosurgeon came to speak with us, he gave us more information.  He said that if his vein were to close off, we would not know until it was too late and it would result in catastrophic stroke.  He said that we could wait and see if the antibiotics took care of the infection, but, as the Infectious Disease doctor said, abscesses are very hard to treat with antibiotics, especially behind the skull.  Our surgeon, Dr. Bardwahj, said he didn’t feel like he could sleep leaving it and hoping it would go away.  There were risks to the surgery.  One was bleeding because he was doing surgery so near the major vein.  He said that there was a 95% chance the bleeding would stay under control, and only a quarter or half a percent that the level of bleeding would result in death.  He told us that the MRI the day before was a stealth MRI, which gives a very advanced image.  With those images, a computer model of his brain would be created and the doctors would be guided by that model.  The success of the surgery was a matter of millimeters.  Another risk of the surgery was stroke, but that could be handled better during surgery (reacting to a stroke).  The doctor said that there was a 90% chance the surgery would be successful.  Of course, we consented to the surgery, but I was now the one who was distraught.  I don’t think the severity of the situation had hit me yet.  So, off Benton went for another surgery.  Because we were in the ICU, we went straight from our room down to the operating area.  We again cried and said good bye to Benton.  The nurse said she would call when the surgery started and we decided to go for a walk to try and pass the time.

As we walked outside of the hospital, which was probably my second time leaving the hospital since we had come in, we walked right past our surgeon we had just sent Benton off with.  He smiled and said, “See, nothing happens quickly around here.” We walked to the food court because I hadn’t seen it and got some ice cream.  We paced, and I somehow ate some ice cream.  I started thinking about angels.  A friend had posted on her blog or Facebook about angels a while back and it had started me thinking about how much I loved that concept, that our family of angels is here.  She actually sent me a Facebook message while I was waiting with a link to an article about angels being with a child during surgery.  I didn’t see the article on my phone, but her message:

Thought this might bring you some comfort... story from a 1995 Ensign article about a little girl who was in the hospital for a surgery, after she woke up she described for an hour all the deceased family members who were in the room and then later said, "Daddy, all of the children here in the intensive care unit have angels helping them."

Prompted feelings of comfort and confirmation that Benton had angels in surgery with him.  I know Benton will never be able to tell me who was with him, so I started thinking about who would be there with him.  My first, very strong impression was that my sister’s mother-in-law, Andrea would be there with him.  She passed away in December, and I feel certain she was there with my baby, because that’s the kind of person she is.  I think Mike’s Dad was probably there with Benton too.  Fortunately, most of my grandparents are here with me still, but I imagine my Grandpa Jack and Great Grandma and Grandpa Robinette were among those ministering to me and Dr. Bardwahj at that time.  It brought me a lot of comfort knowing that my baby wasn’t alone. 

After getting the call saying the procedure had started and that it would probably take 40 minutes, we decided to go up to our room and wait for Benton (they come straight to their PICU rooms after surgery).  We turned on the TV figuring one 30 minute episode would help distract us long enough for him to be done.  We had a yummy lunch prepared by the Palmers (who kept us stocked with healthy snacks and brought lunches and a balloon too).  I walked out of the room for a minute, I don’t remember why now, and the nurse said that he was out of surgery and everything went well.  It had only been 20 minutes.  She said he’d be up in about 10 minutes.  Those 10 minutes passed really slowly as we paced the room, and then it was about 10 more before he actually came up. 

It only took a few minutes before Benton started stirring.  The anesthesiologist gave him more drugs to try and keep him relaxed longer.  Those lasted a few more minutes.  As the anesthesiologist said, “he must have somewhere to go, I’ve given him everything.” Benton started sitting up, asking for a drink, etc.  Dr. Bardwahj told us about the surgery.  He said it went just as planned, they removed a postage stamp sized piece of skull, pushed the vein aside, and pus gushed out.  They washed it well and then closed him up.  He did not put a plate in this time because he said more hardware increases the chance of infection and with the obscure location and strong muscle, he was comfortable leaving it open for the few weeks or months it would take the bone to grow back.  He said that at this point Benton should now be fine, which was much better than the “he isn’t out of the woods yet” that we had heard the day before from another doctor.  Our surgeon predicted about another week in the hospital, probably in the ICU over the weekend (although everyone else kept talking about graduating us out as Benton wasn’t receiving ICU level care).

One thing I LOVED about PCH is that we were always treated like we were Benton’s primary care givers.  As soon as he was signed off with the anesthesiologist (which doesn’t take long), they arranged everything so I could hold him.  We hung out with him sleeping on me for a long time.  That night they gave him oxycodone once and that was the last time he received any pain meds, crazy kid.

Post surgery:

Just like at home.  His face kept getting puffier, which is normal for a day or two after surgery.  At one point he could barely open his left eye.  It was also purple underneath.  We were dreading what it would look like after his second surgery, but it only got better!  He also was much happier after the second surgery.  the compression on that vein must have been uncomfortable for him (causes head aches, etc.).

 Friday February 8:  On Friday Dr. Bardwahj confirmed what everyone else had said; Benton was ready to leave the PICU-yay!  Dr. Gujrathi removed the penrose drain that was placed to drain any remaining infection from Benton's mastoid (rubber tube sticking out behind his ear). 

Benton really enjoyed all the food at the hospital.  Over the next few days he inhaled the Jello, chicken nuggets, mixed veggies, muffins, yogurts, scrambled eggs etc. that we got to order for him from the Cafeteria.  He actually never lost any weight.  By this point he was able to move around as much as he wanted, but it was a full time job for me. 
We heard back that they had gotten a bacteria to grow in the lab called Strep Intermedius.  One of its characteristics is that it causes abscesses, so that made perfect sense.  However, this is a gram positive bacteria and they had also seen a gram negative bacteria in the original culture stain.  This led them to believe that he also had anaerobic bacteria because they are gram negative and rarely grow in the lab.  They kept him on all of the IV drugs (adding one) until they made sure nothing else grew. He was getting 3 antibiotics through the IV; each took an hour to drip and he got them 3-4 times/day (they were given one after another, not combined), so he was hooked up a lot of the time.  I had to run behind him with the IV pole, trying to keep up and keep him untangled.

 Half asleep, but kissing George.

 Grammy and Nana brought books and toys!  He loved dumping out the Legos and then putting them back in the box.  First smiles and giggles!

 Pudding!

Great views from our hospital rooms.

 I opened the blinds for the first time on Friday and Benton stared and begged to go out.

 Jello!

 He had a lot of fun with this toy from Aunt Lisa!

 This balloon lasted weeks.  He loved it (and learned to say and sign balloon).  Thanks Palmers!

 This was after the Friday MRI.  They didn't intubate him, but he had a thing in his mouth holding his tongue and stayed like this until he woke up (at least that never took long).

 This is in the regular pediatric room.  At this point the turban was taken off, but he kept messing with his bandages which gave me anxiety, so we ended up putting it back on.  The stuff in his hair and on his face is used to prepare him for surgery and they leave it on because it keeps its antibacterial properties for a few days.

 Saturday and Sunday:  I’m having trouble remembering much of Saturday and Sunday.  The nurse got us a wagon that had a pole on it so I could move his IV pump to the pole and Benton and I would go for rides around the hospital.  Benton LOVED riding the elevators and pushing the buttons-he was back to full entergy.  There is a rooftop garden he could go to, but it was a little chilly.  They also had a playroom where we would go play with toys and try to keep Benton from eating the paint while he “painted”.  He mostly like playing with the lids on the paint bottles.   We also had to move hospital rooms.  I wasn’t exactly gracious about this, but it was a stressful time.  The room we were in had seizure monitoring equipment installed that they needed for another patient, but it also had a fridge, which was nice for us.  We had a lot of stuff at the hospital, so it was a pain to move. 

Ethan had stayed with my neighbor Sarah when I first took Benton to the doctor.  Jessica took him that night and then my mom flew in.  Ethan spent the weekend with my mom and Grammy and we decided he would fly back to Kansas with my mom.  I asked my mom to bring Ethan by on Saturday before they left and I went down and played with him all over the first floor of the hospital.  Because it is RSV season, kids were not allowed up, so Ethan could not see Benton. 

On Friday and Saturday we heard more about Benton’s MRI results; it always took a while to get all of the information.  They told us that there was a lot less puss so the antibiotics were working!  These were the residents telling us that, so I reminded them that he had surgery between the two MRIs and that was probably responsible for the decrease in pus “oh yeah.” The ENT came in and said everything looked fine in the MRI, so with antibiotics, Benton should be fine, yay!  There was still some pus left in the last surgery site, but they thought it would be taken care of with antibiotics.  We also found out that the venous sinus was still narrowed and showed some signs of clotting, so they were going to put him on aspirin, which is usually not given to children.  They scheduled an MRI and MRV for Monday to check on the pus and the vein (MRV) to make sure it was getting better.  They started talking about when we could be discharged.  Infectious disease was the team we were waiting on as they made sure they had the right bug.   They grew the same strep bacteria from the second abscess, so that was good.  The fact that they could still grow it meant that the day of IV antibiotics he had before that last surgery had not really affected the bacteria, so it was good that we removed it instead of hoping it would not grow anymore.

We asked for everyone’s prayers as we hoped the vein would open up and the bacteria would respond to the antibiotics.  We fasted on Sunday and I was really touched by how many people joined us in our fasting and praying and how many people put Benton on their temple prayer rolls.

He was really excited about these Cheerios.  It was the first hard thing he ate.

He kept wanting to play Elmo's ABCs on my iPad.

 I'm glad we got Ethan to leave Tidmouth shed in AZ, because Benton loves driving his cars on it.

 While in the hospital, Benton started putting his hands up like his as in "where'd it go?" I'm glad he does sign language because it made it that much  more clear that he was still himself mentally.

 He likes to hide the cars inside and then ask where they are.

 He climbed up on my "bed" despite all his tubes so he could get my iPad.

 This was difficult to maneuver, but once I attached start transferring the pump to the wagon pole, life got easier.

 It was great to get some sunshine in the rooftop garden!

 His appetite could not be suppressed, even in the hospital!  :)

Ethan and I found a really fun playground.

 Climbing under his crib.

 The floors are kind of gross in the hospital, plus Benton spilled a lot (just like at home).  While Benton was gone for one of his tests I used wash cloths to wash the floor and then went over it again with antibacterial wipes.
The nurses weren't used to doing turbans, and it kept falling down.

 He loves buttons!  He was always trying to get his pump.  "Boop boop boop!"

 He woke up with a scarf and everyone thought he looked very stylish.

Rooftop garden again.

 Happy boy!  I spent a lot of time sitting in his crib with him to play/keep him company.  Apparently this isn't that common because I got a lot of comments about it from the medical staff.  It is sad to hear how many kids don't even have parents in the hospital with them.  I offered to hold crying babies while Benton was asleep, but they never took me up on it.  I'd love to be a volunteer so that those poor babies could have someone to hold them or play with them!

 Looking repetitive yet?  Why yes, yes, it was, but it was fun to play with him and see him being himself.

 Hospital play room.

 WARNING: Incision pictures coming up.

 When they first removed his bandages, it was really hard for me to see.  We had been giving him a sponge bath in his bed and trying to scrub and comb his hair clean.  He was not happy and it was at the end of my fast, so after standing that long, when they uncovered his incisions, I had to have Mike take over because I was getting woozy.

Benton had a blood/pus mixture leaking from his ear for about two weeks, which I think was the most noticeable part.

 They didn't shave much hair.

 Sweet baby loves George.

 SO cute walking the halls in his little hospital gown (they have one color for each size, so purple was his only choice).

 He has 3 incisions.  The one in front of his ear was the first craniotomy and has a "Y" shaped titanium plate.  The one you see behind the ear is the second craniotomy.  The mastoidectomy incision is similar in size, but behind his ear.  The two behind his ear get within half an inch of each other, so the surgeon watched the site carefully to make sure it healed ok.

 Monday, Feb 11:  When Benton woke up he was not allowed to eat or drink anything.  That was hard for him after several days of freedom.  He knew where all the snacks were and wanted them.  When he was distracted by the TV, I would hide out of sight so that I could eat because I knew he would NOT be happy if I ate in front of him.  The neurosurgeon talked to us in person about the last MRI and told us the vein was looking good and they just wanted to check, making the situation sound more positive.  He said that once infectious disease was ready, we should be good to go home, but it would take a day or two to get everything set for that.

After his MRI Benton had to wait in the recovery area since we were no longer in the PICU.  The nurse freaked me out by doing extra heart monitoring because of his low heart rate.  Apparently he has an irregular heart beat, which isn’t that unusual for someone his size, and they ended up sending him back up as soon as the anesthesiologist got to check on him again.  When he woke up he got to go right back to eating and playing.  He also got to Skype with Ethan.  Benton was SO excited being very giggly.   They played peek-a-boo and were very cute.

He stood in his crib on the way to his MRI.  This was the only time that happened: a good sign of how well he was doing.

 We spent SO much time at the elevators!!!

Tuesday, Feb 12:  We started talking about and planning Benton’s discharge.  The vague results of Benton’s MRI started to come in.  Things like “it looks better” and “no news is good news.” The neuro surgeon resident told us that there was no residual abscess and that the radiologist’s report (since he/she views the images and writes a report that is the basis of what the doctors say) said there was “very slight compression” on the vein and nothing was said in the report about clotting. 

At some point on Tuesday Dr. Bardwahj cleared us to go home.  Infectious disease was confident with their plan and we started preparing to leave.  The plan put in place for Benton was that he would have in home medication for 6 weeks.  One would be administered twice/day through an IV for an hour at a time (ceftriaxone).  The other would be given orally 4 times/day because it absorbed well through the GI tract (flagyl).  He would be on aspirin once/day.  It was important to keep his PICC line dry and the bandage would have to be changed each week by the home health nurse.  That night our first delivery from the home health company arrived with the supplies we would need.

Also, that night, we had a notary come to the hospital so that we could sign on our new house!  Getting that house is another long story (although not this long), but we were very grateful that the title company was willing to come to the hospital.  Otherwise it would have been just Mike’s name on the title because I wasn’t going to leave.  The sellers were also kind enough to offer to let us delay closing if needed.  We had renters set to move in the next week though and ward members ready to move us on Saturday, so we moved along with the close.

Waiting in the ultrasound room.

 Leaving!

 I must stand on every light!

 Goodbye PCH!

 This could have been executed better, but I love this picture!