It's been a crazy week starting from last Sunday (March 3) until today (March 10). I have been beyond exhausted and on days I could I was asleep at 9:00. Everyday...seeming to never catch up on lost sleep. I toyed with not writing about it but then when the kids look back and wonder why there is no March Diary they will wonder why. And wonder what happened to the 'lost days'.
MONDAY
I already wrote about Braden's first trip to the ER (I think?) so I'll move to the next day; Monday. We were going on very little sleep (2 hr) because of being at the ER all night. Braden came home and was hurting. He laid on the couch until I finally had him go to his room at noon. For five blissful hours he did not hurt. He slept from 12-5. Mom came while he was sleeping after being at Matt's for a week. She was stopping over for the night and planning to leave first thing in the morning.
I wondered if I should wake him so he could sleep later in the night but mom said to let him rest. I got school done with the girls and took a two hour nap. I think?? I made a crockpot meal before taking a nap so we'd have dinner. Mom took Cailey to swimming practice, the realtor came to talk to Brian and I in the evening and Braden woke up still in pain. It was tender to the touch again so we decided to get an early start to the hospital and both went with him to Wake Med while mom stayed home with the other kids.
It was super crowded. It's a kids ER and apparently people use it as a dr's office?? Really? Apparently I'm the only one left on earth who didn't know this. After our wait we were taken to a room and met a super nice dr. and nurse. After describing his symptoms the Dr. thought it sounded exactly like pericarditis. Inflammation around the heart..and treatable. Sounded good to me...a diagnosis and a treatment. They did more labs, another chest/stomach x ray, an ultrasound, an EKG, lots of heart labs/workups and it all came back clear. Everything (even his labs) looked totally normal.
*I sent Brian home at that point because he was going on two hours of sleep and had worked all day.
But I was looking at a boy in a LOT of pain and didn't want to make this a nightly ritual of going to the ER..and wanted answers so we were admitted. They game him a stronger version of motrin which took his pain away for a good hour (brought the pain down to a 5...which for him is VERY manageable). He was laughing and smiling again. He still couldn't lay down (since that was the most painful position) but was comfortable sitting up.
After an hour the meds wore off and all we could do was wait until it was time for more. They tried Tylenol eventually but of course that didn't touch the pain. We spent hours waiting..and waiting and waiting.
TUESDAY
We were finally brought to the room at 3:00 am. (arrived at 7:30, Seen by the Dr. at 9:30, Tons of tests/x ray, waiting in between, Ultrasound at 2:15)
Once we left the ER we were switched over to Residents. I know they have to learn but I was tired and not really in the mood to retell his story over and over again. They asked all the SAME questions.
There was lots to do to get settled in the room. Questions to answer, baby in PAIN. The residents gave him a GI cocktail thinking maybe that would help the pain. By the time he got it we were beyond exhausted and it was 4:00am. She said she'd be back to check in 15 min to see if it worked. She came at 4:45 am. That's the last thing we remember.
Until 5:15. I woke to alarms going off because his heart monitor stuff got messed up. The stupid (and I did say stupid...and we don't say stupid in our family...but I was beyond tired and they were stupid) alarms kept going off. I called for someone to come help turn it off. They came 15 minutes later. I was afraid Braden would wake up but thankfully he didn't. I was hoping to go back to sleep. Until they started again FIVE minutes later. This time his oxygen thing came off his finger. This time I waited 30 minutes for a nurse to come and realized 30 minutes of sleep was all I was gonna get.
By this time nurses started coming in to check Braden's vitals (though he was dead to the world and had his head hanging off of one end of the bed and his feet off the other side). I was thankful he wasn't in pain and could sleep.
Around 9 we had to wake him up so he would be ready when the dr's were doing rounds. It was SUPER hard to wake him and he was groggy for a while.
The group of dr's (one 'real one' and the rest residents) thought it was inflammation of his stomach and he should be treated with several medicines. I had been on the phone to Dr. Walker to get her opinion and she thought of several other things it could be...so I insisted they call her. The main dr. was nice but one of the residents will forever be known as "Dr. Cocky Pants" in my mind. Brian agrees.
I think they thought I was crazy. Because Braden has such a HIGH pain tolerance and was such a trooper. Dr. Walker explained this to them and that he had visible ulcers on his eyeball and didn't make a peep. This helped them understand they weren't dealing with a typical (whiny) child.
Brian came around 10:30, taking the day off of work, to hear what the docs had to say. Then Granny came at 12:45 (while Brian picked up E from preschool and dropped him off at home) to visit with Braden. He still hurt a ton. But thought it was nice for her to visit. When Brian got back the doctors had talked with Dr. Walker on the phone and basically said they didn't want to do a CT scan and we should follow up with Melanie two days later.
There was nothing left for them to do. I begged for them to send us with a stronger pain reliever but Motrin was all they would send. I had to watch him suffer and could do nothing to help. We went home at 3:00 pm with no answers.
The evening passed with Braden being in pain. I think I forgot to mention that mom decided to stay after we were in the hospital all night. That was a HUGE blessing. Staying meant she would be trapped until Thursday because of a snowstorm in MD. She had to cancel dr's apts for herself.
Brian just ordered pizza for dinner...mom did school with Kinsey. Cheryl S took Cailey home from Science...we had help, thank goodness. I came home to a sick Ephram. He had a fever and was coughing a ton. From lack of sleep (I'm assuming) I picked something up which turned into a sinus infection. Since I couldn't breathe I decided to sleep downstairs in Brian's chair (sitting up) praying for sleep. Mom says I was dead to the world within a few minutes of sitting down. That was 8:00pm. She says I talked in my sleep:).
WEDNESDAY
I slept hard until 7:30. Braden was able to sleep even longer...until after 9. It made me so happy because that meant less hours in pain. He slept on the floor against the wall in his room with pillows behind his back because of how much pain he was in. Once he fell asleep his body got more comfy...as comfy as you can be on the floor.
We got through the day. It was Wednesday. I was sick. Braden was in pain. Mom was stuck. Planned on leftovers for dinner. Wanted to do as little as possible. I did manage to drop Cailey off at swimming in the afternoon. And I gave up on Motrin with Braden because it didn't do a thing for him. The day was really hard for him. Terrible. We were counting down to bedtime.
Once again he slept propped up on the floor. He had a hard time falling asleep.
I watched some TV with mom and slept downstairs again.
THURSDAY
It was Thursday. Finally. Sad because mom was leaving. Happy because we were going to see Dr. Walker. Happy because we couldn't wait to get real answers.
It's no secret that I LOVE Dr. Walker. We were beyond bummed when we had to leave Dr. Hewitt because of insurance reasons but we are blessed to have another dr. willing to become a part of our family...and do the research...and call us at home on the weekends.
She checked out Braden and got an update from me. She said that he never should have been given Motrin if they thought he had a stomach issue and prescribed Tylenol with Codeine (YAY!). She was stumped as well and said she was going to call the "House" (tv show) dr. of Pediatrics at UNC Children's Hospital for ideas. That was at 10am.
I picked up the script and for the first time Braden had RELIEF from pain. Oh it was glorious! We did school, cleaned for a house showing (yes...we still had those during this madness), picked Ephram up from preschool, ran errands, then went home for more school.
The phone rang at 3:15. It was UNC confirming Braden's 11:00 apt for the next day. Umm...which I knew nothing about. On a Friday..when we have co op, AHG, swimming, and soccer. On a Friday. AGH! I was told that Dr. Seashore (the House dr.) was not scheduled to work and coming in specifically for Braden's case. So I did all the registration stuff on the phone and started to figure out our plans. (I was still sick at this point).
The phone rang at 3:45. It was Melanie. She said Dr. Seashore wanted Braden to have a Barium test at Rex that day and we needed to be there by 4...or 4:15 at the latest. Earlier I told kinsey and ephram they could put jammies on (cuz that's what they love) so we went into crazy mode, the kids changed, and we ran out the door to get there on time.
This was still Thursday. Whew! We ran to Rex (which Braden pointed out was the 4th hospital he'd been to in two weeks (Duke, Wake Med North, Wake Med, Rex)) and made it on time.
Once again Braden was awesome. After a ton of waiting he drank the barium and did the test. I was in with the radiologist watching everything. He was very nice and explained in great detail about each part. The esophagus was fine. There was no reflux. His stomach (at least the parts that weren't filled with food) were fine..no ulcers. His intestines went the way they were supposed to. The barium did it's thing and showed that this was not the pain culprit.
I had all the kids with me since it was so last minute but they did a great job waiting..and a nice nurse agreed to watch them while I was in with Braden.
By this time his pain meds wore off and I was told not to give him more so Dr. Seashore could see him in his 'normal' painful state.
This made for a long night. He had trouble sleeping. It was SO hard to follow Dr's orders and not give it to him but I did it.
FRIDAY
Co op...at least I went there until 10 to help out and bring the kids. Braden didn't go. I didn't feel good. Pam offered to take care of the girls during co op and bring them to AHG. I was sure I'd be back in time to pick them up (3:00) so I wasn't worried about getting Cailey to swimming or Kinsey to soccer.
I left co op and went to meet Brian (with Braden) at his office so we could go together. We were thinking this was an appointment we both needed to be at. And were looking towards answers.
Oh...I also had Ephram because I couldn't find help for him.
So we arrived just on time...barely waited at all (unlike Duke:), and went into the room. Dr. Seashore was SO very nice. And thorough. And stumped. And Braden was in terrible pain. He couldn't wait until he could have more Tylenol3. He was examined again. We told the story again. We answered different questions.
He left and came back with a surgeon to see if it looked like a hernia. She was sure it didn't and was also stumped by this case. They both agreed that a CT scan needed to be done. And if that showed nothing we'd move on to an endoscopy.
A nurse (who happened to be from Korea and shared Kinsey's Korean name of Eun) came in to give Braden an IV. She was SO very sweet and offered to teach them how to say things in Korean and write their names down in Korean. But she messed up the IV big time. The first stick was unsuccessful. But he handled it as well as usual. So she switched arms and got it.
At this point awesome Dr. Seashore said that he could have some Tylenol3...YAY!
So there was more waiting. Lots and lots of waiting for the CT scan since they had to work him in. He drank a HUGE amount of contrast at 3:00 then we had to wait another hour for it to go through him. We were pushing time...and Cailey was gonna have to miss swimming. An appointment we thought would take an hour was now passing 4:00.. the 5 hour mark. Dr. Seashore came down and told us that IF Braden didn't finish the scan before 5:00 we would have to wait until Monday for answers. UGH! It was 4:15 and they finally called him back for the scan.
I went with him. They were surprised to see he already had the IV and said it would only take about 10 minutes. Well then they waited another 15 to start. It was quick once they started. We ran back up to see if we could meet with the Dr. before 5:00...and were told yes..yay!
So at about 4:50 Dr. Seashore came in (after discussing the CT results with other dr's) and was ready to talk to us. Oh...I should add here that we had Ephram with us the entire time. Poor guy was so very patient the entire time. Lots of waiting and doing nothing for a little guy.
The scan was clean of tumors or other terrible possibilities. YAY! But there was one area (the place that hurt) that was abnormal. His transverse colon was in an usual place compared to normal. The barium, contrast, and other food was able to pass through his large intestine. But there was one spot (the place that hurt to the touch) where something was stuck. Again...not stuck enough to prevent other things from going through, but stuck enough to cause labor-type pain. We don't know why it happened (or how) but to solution was to go potty and hope it passed. Now...he had no problem going potty...and had the previous days. And this did not show up on either of the x rays OR the ultrasound. This was something that only showed up on the CT scan. They don't know why. He was allowed to take pain medicine as needed.
We went home thinking we just spent a lot of time/money/pain (for him) on poop. BUT Dr. Seashore assured us that this was very abnormal (and he deals with these things on a daily basis). He hadn't ever seen a tenderness or high level of pain in this area associated with this. It's because of where his large intestine was, etc.
Whatever...I was just excited to hopefully be done with this so Braden could stop hurting. IF for some reason Braden still had pain after the weekend we would have to check about the endoscopy. Because he was still being treated for stomach stuff.
Oh..during this whole thing there were many times Braden was nauseous but never threw up. The dr. said it was because this area was pushing on his stomach. He also had times of clamminess because of the pain. He'd get SUPER hot because of pain too. He never cried. ever. no matter how much pain...I don't know how he was so strong.
We got home late after sitting in lots of traffic. Brian went to pick the girls up from Pam...who watched them FOUR hours longer than planned. Both the boys slept on the way home from Chapel Hill.
Everyday this week I have gone to bed around 9. I am just exhausted then which is rare for me. And I sleep until 8:30! I'm getting a ton of sleep but I guess between stress, worry, sickness, and going it just made me tired? Made no sense to me why I was so tired early in the evening.
SATURDAY
Braden woke up hurting again. But I wasn't worried because we had Tylenol3:)! YAY! He went potty before we went to soccer. Oh...we slept in until 9! (Except for Kinsey and Ephram). On the way to soccer we realized we forgot to give him the Tylenol after he ate (though gave him all the meds he needed before he ate). UGH! Another hour he had to suffer!!
We get to soccer and Caden is there waiting to play with Braden during the girls' game. Brian and I watch as Braden RUNS over to play and is smiling. They play a while before I call Braden over and asked about his pain. He said he didn't hurt. At all. And he didn't have any pain medicine.
It was SOOOO exciting to see him running and playing and NOT hurting! I guess when he went potty earlier all the stuff moved out.
So he went home to play with Caden and never hurt. And came home not hurting. And hasn't hurt again. I tell you...if it's something weird or obscure it's gonna happen in this family. sigh.
I am SO VERY relieved he doesn't have something terribly wrong with him and he isn't hurting anymore. But I wish one of the MANY doctors who saw him in the ER, etc. could have caught this a lot earlier. The tenderness is what stumped everyone...well and where the tenderness was. now we know. whew! what a week.
SUNDAY
a day full of sunshine, warmth, playing, resting, and NO pain!!
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