Sunday, February 26, 2012

Doctors, testing, hospitals...OH MY! ~ Looking for a diagnosis

Thank you for all the love and prayers from everyone who has been following along with Brayden's crazy fevers and sickness stuff!  I've been meaning to get online and post details as far as what has been going on but I just haven't found the time or energy to sit down and type it all out. I'm going to try and keep it abbreviated but knowing me that's probably not likely, it was a LOOOONG week!

Brayden has been having recurrent fevers since December. They are very high, usually at their lowest is around 103 and has spiked well over 106.  The fevers usually last 5-7 days and aren't accompanied by any other symptoms. Although one time he did get an ear infection in the middle of on of his episodes. So i am not sure what to think of that.  They usually happen every 22-23 days one was 26 and seem really predictable. Two of the last 4 episodes I was able to keep the fevers down so they didn't spike over 104 doing our normal regimen of meds, baths, fluids ext. This last time it was a different story.

This fever episode seems like it lasted FOREVER. It did last the full 7 days but his sick spurt started weeks before that. Three weeks prior Brayden got his first ear infection in his left ear. Fortunately with ear infections he seems to run a low grade fever (101-102) which is great.  He was miserable, in a lot of pain, wasn't eating but I was able to get him to drink. Not that a bottle is my preference at 16 months but if it meant getting fluids in him I don't care what we have to do.  He normally only drinks milk and water. I think he's the only kid who hates juice and stuff, but that's fine by me. Anyway, the pedes put him on Amoxacillin for 10 days between that, pain meds and ear drops we managed to get by.  He finished the anitbiotics on a Friday and by Monday night he seemed a little off and in pain again. So we headed back to the pedes and he had ANOTHER ear infection, this time in the right ear. This time they started him on Cefdinir for anitbiotics so he wouldn't start to build a tolerance to the amoxacillin. He only ran a low grade fever till Thursday and seemed to be doing a little bit better.

Sunday it all started going downhill.  He had already been on antibiotics for almost 7 days so a fever creeping up was really unsettling. He wasn't hitting his head or ears like he had been so I had a feeling that it wasn't ears. By night the fever was 103.7, uggh, so I was on the phone with the pedes as soon as they opened. They are great about getting us in so we had an early appt. To no surprise his ears were clear, throat was fine so they decided to so a urine collection and send him for a chest xray to make sure it wasn't pneumonia. He has a slight dry cough that was really erratic but I think that it was mostly from him being so hot and despite pushing fluids his throat and mouth were dry.  Fortunately both tests were negative but it left us with no dx (diagnosis) yet again.  He did end up throwing up twice that day. Again i think it was aside from the meds. I think his stomach was upset from all the advil and tylenol and he would throw up curdled milk.  :(

At the pedes :( Anyone who knows Brayden knows this NEVER happens 

The next day his fever kept climbing. The pedes called to follow up and decided to change his antibiotic to augmentin, just in case it was bacterial. To me this didn't make much sense since he has already been on antibiotics for 8 days. But we started him on the new regiment. (side bar: all the drs at the hospital were confused as to WHY they changed the antibiotic as well.. so apparently i'm not crazy. lol) Of course fevers get higher as night... :(  Before bedtime his fever was up to 105.4, so off to the hospital we went. We decided to try out the new Virtua Hospital in Voorhees since they have CHOP drs. It was a huge waste. They pretty much told us that it "HAS" to be viral and to keep doing what we were doing.  Meanwhile at this point we would give him meds (alternating Advil/Tylenol) every 3 hrs. After about 1.5 hrs after each med dose the his fever would be as high or higher than it was. We were at a serious loss.  The fevers were HORRIBLE at night. He would wake up ever 2 hours (if that) screaming and crying b/c he was burning up so bad.  Fortunately he was drinking some so whenever he woke up we would give/offer him something to drink. All he wanted was milk, so if he wanted it he got it.

Wednesday was no different. Again the closer it gets to bedtime is when his fevers tend to spike the most.  This time it hit 106.1. He gets shakes so hard when he gets high fevers. It's awful. His limbs get cold and he convulses so hard. So, I immediately stripped him down, took my own pants off and made him get in the bath tub with me. This wasn't the first time we did this but with him being SO hot he wouldn't tolerate the tub any other way. I was on the phone with the pedes right after and they sent us right back to the hospital. This time we headed to CHOP. Even though it's right in Philly it literally takes us like 15-20 or so minutes to get there. Even though we did the bath and gave him his meds before we left the fever was still almost 105 by the time we got triaged.  I was just praying at this point they would do or try SOMETHING to figure out what the hell is going on.  I hate the idea of him getting any tests of procedures but if it meant getting him better that's all that mattered.  At that point the drs went over everything we had done that week and decided to do a sterile urine culture since that was the only thing they could think to do. They didn't want to do bloodwork b/c they said that the test would only show elevated or low counts and wouldn't help them actually diagnose whether it was bacterial or viral. Since he didn't have any other symptoms it immediately ruled out most potential illnesses.  So they ended up cathedarizing him to get a sterile urine sample. I've been cathedarized before and i know how uncomfortable it is, but to be a boy and have it done, it seriously broke my heart.  In the end his cultures came back clean and they sent us home with another "viral" diagnosis.  ugggh
 Thank goodness for DVD players

Thursday it seemed like he was starting to do better. The meds would keep the fever some what lower (101-102) and he seemed in better spirits.  The pedes called again to follow up with us and told me that if he had ANY fever on Friday that they wanted us to come back in and see the dr.  So of course on Friday things were about the same so we were back in to see the dr.  When we got to the office his fever was still 103. At this point he had been on antibiotics for 10 days, and was on day 6 of fever. She said that usually if it is viral or bacterial a fever will go away by 4-5 days.  So being past that they were concerned and wanted to make sure that he didn't have Kawasaki Disease.  She said it usually is accompanied by other symptoms but in really young children it can present as a-typical , meaning they dont' have all of the physical symptoms. She pretty much told me that we HAD to go to the hospital asap b/c if it was Kawasaki's it can affect the blood vessels around his heart and create some major issues. Talk about giving a mom a heart attack.  So we jumped in the car, i Googled Kawasaki's, tried not to cry and off we went.  Fortunately she called ahead to CHOP so they knew exactly what she was looking for before we walked in.

                                                       His "Big  Bird"  arm covering his IV        

When we got to the hospital Bray still had a fever, they took us back and decided this time they were going to get bloodwork done.  So they started an IV so they could drawl blood, give fluid and anything else they needed. Giving a 15 month old an IVF was torture.  On top of it he was a SUPER slow bleeder (like his daddy).  They decided to give him some fluids to see if that would help. It helped hydrate him but didn't make much of a difference when they had to get blood. The nurses were amazing, but they literally had to get his blood drop for drop and the lab needed blood more than once so it was antagonizing for both them and Brayden.  I was glad they were being so thorough, we saw two different drs while in the ER.  They had noticed on Wednesday that his one pupil was larger than they other. Which can be common but since we had never noticed they wanted to make sure they there was nothing wrong in his brain. The original plan was to get him a cat scan or MRI but after looking at him in the ER then after he was admitted the didn't think he physiologically looked like something was wrong.  I was greatful that was one less procedure they were planning on doing, and they drs were erring on the side of caution and not wanting to expose him to any unnecessary radiation and anesthesia.

The nurse came back later and needed to get more blood from him and a nose suction so they could run additional testing including viral strains.  At this point there were fairly certain that it was NOT Kawasaki's, thank god, but they were definitely going to admit him because his fever was still not broken and they were determined to figure something out.  Viral cultures take up to 24 hours to come back so we had to stay the night. Fortunately over night Brays fever seemed to be winding down a little bit.  By Saturday late morning/afternoon it had completely broken. The overnight stay on the other hand was nothing but hellacious.When Brayden gets sick he is extremely clings, particularly only wanting mommy. In other words I wasn't "allowed" to leave him all week even to run to the bathroom. Needless to say I was beyond exhausted. I felt like the worlds worst mom for not being able to make things better and having to be the one to help hold him down for all the poking, prodding, testing and procedures.  After we were finally in our room upstairs and we had seen the drs and nurses for yet another round of questions Jason ran home to pick up some basics for us around 12:30am.  Brayden was beyond exhausted at this point. He usually goes to bed by 8 and he was so out of sorts from everything going on. He ended up screaming and thrashing for almost an hour while Jason was gone. It was horrible and nerve racking. I finally got him calmed down and asleep on me watching Spout channel at 1:30am. lol I was lucky i got him in his hospital crib and he didn't move.  When Jay got back we tried to get some sleep. He only slept for about an hour in the crib before the screaming started again. It was like the night terrors he gets at home so needless to say it was rough.  I think over the course of the night, we got him to sleep about 4 hours and we got even less. Bray laid on this sleeping bench with me where i could wrap my arm around him to keep him from rolling off. Any sleep for the kid was better than none!! Since he fell back asleep super late he was still asleep at 8:45 and some guy came in to change out the trash bag and was so loud it woke him up.  Poor baby.  :(

Feeling better! 

On the upside since he was finally starting to feel a little better and the fever was dropping he was hungry. When i say hungry you'd think the kid never ate before. I was so happy to see him eating, i think he ate for 6 hours straight snacking on apples, breakfast, lunch and anything else we offered. :)  Later that afternoon the dr came in that his labs were back and everything was NEGATIVE.  One had actually come back the faintest positive but they were going to rerun them, b/c it could be a false positive.  Fast forward to the next day, the dr said she would only call if it came back negative. Otherwise they'd assume that it was a viral infection. So when we got the call I we knew that it had come back clear and we were still at a loss for a real reason for him being so sick.  Fortunately after the dr talked to us about the preliminary blood work/cultures we were able to get discharged. When we got home Bray was totally out of sorts. He just stood in the living room looking around frozen. I felt so bad, but he soon warmed up and was walking around following the dog. I LOVE how much he loves his crib! I got him all comfy with his cuddly(blanket), bunny and seahorse and laid him in his crib.  He was in heaven, he rolled over before I even walked out of the room and slept for 3 hours.  :)
                                                  Pop Pop giving Bray a "ride" on his IV pole

All week I had talked to all of the drs that we had seen that I had a feeling he has Periodic Fever Syndrome (PFAPA). With the recurrences and lack of other symptoms I think that he more than fits the profile.  Our pedes had told me to document and calendar all of his fevers/episodes so I had a good idea of the pattern he had been following. Since all of his blood work and cultures came back negative, meaning he didn't have any viral or bacterial they are sending us to the immunologist at CHOP to see if they can confirm PFAPA or find an alternative dx for him.  Not that I WANT something to be wrong or have him going to drs and getting tests done but it's apparent that something is NOT right. I refuse to take the BS answer of " it's viral" anymore; Especially when we know it's not.  I'm just praying we can figure this out as soon as possible. If it is PFAPA there isn't too much that can be done. I have read a lot of research of on PFAPA an it seems like removing tonsils and adenoids can actually "cure" it since it is essential auto-immune.  Jason and I both had ours out so if we ever had to go down that road we at least know what to expect.  But I'm getting way ahead of myself. Our appointment is on March 8th, so i guess we will see.  I just hope and pray he stays well and if/when his next fever episode hits it's not nearly as bad on him.  It seriously breaks my heart and tears me apart on the inside to see him going through all of this.  I don't know how parents with children with more serious illnesses do it. I give them so much credit for their strength and to those children for being so strong and enduring so much.

A lot of people have been sweet enough to share tips and experiences with fevers. We really appreciate all the love and support. Not that we are "know it alls" but we had definitely tried it all over the last few months. So please don't take offense if I didn't get a chance to respond.  As far as the fever, we were alternating tylenol and advil every 3 hours, keeping him dressed in little to no clothing, luke warm baths, cool rags ext.  Brayden is super picky about what he likes to drink. He will only drink water and milk and when he is sick he REALLY won't experiment. He wont take juice even diluted, freeze pops (rarely if i'm lucky), pedialyte, gatorade you name it. He would randomly eat fruit and some pretzel sticks. But that was solely based on his cues and he told/showed me that he wanted it.

I feel like after one of Bray's episodes he take a step back with his language. When he's sick he cries a LOT and doesn't talk as much. And with him being sick 3 weeks in a row it seems like he's choosing to not use his words. I'm sure he will be back to using all of his words again before we know it but I can't help but feel bad.

No comments:

Post a Comment