Friday, November 8, 2013

A Diagnosis...Oh Wait, a New Diagnosis...and a Treatment Plan...Maybe?

Well. I didn't think our week could get much worse. I was oh so wrong.

*I apologize in advance - this is going to be super duper crazy long!*

So where I left off, we were heading to a pediatric orthopedic doctor. During that appointment, I noticed his fever was back {boo}. This doctor {Dr. Kahn} agreed that it was unusual for transient synovitis to be worsening after this many days and wanted to get a new set of x-rays to see if anything would show up that had developed since his set on Monday. During those x-rays, I could see a big difference in his abilities - Monday it was a little hard to straighten his leg, Wednesday he was writhing and screaming and bawling. I cried too. They couldn't see anything on the x-ray, so Dr. Kahn wanted to send us to Dell Children's Hospital to aspirate Trent's knee. {Essentially, he would make a small incision in his knee and drain some fluid. The amount of fluid and what was in it could tell us a lot.} He said normally it would be an in-office procedure but due to Trent's pain level and attitude {not good to say the least}, he wanted to put Trent under general anesthesia.

So to the hospital {next door} we went.

Hungry, thirsty, tired, grumpy, hurting...waiting for the aspiration

We got over to Dell Children's at 3:00 and the procedure was scheduled for about 6:00. Trent had eaten 1/4 of a grilled cheese sandwich by this point and was cut-off from all food and liquids. His fever was consistent at 102 and he started to BEG for something to drink. He cried, wailed, screamed... He called Dr. Kahn 'the worst doctor ever' and that this day was 'the worst day ever'. Even at his most pitiful, he is still adorable. Meanwhile, Brent had become responsible for getting Drew from school and to my parents and then packing clothes/necessities for us both and for Trent. He arrived at the hospital about 5:00. Right about then, PBS stopped showing cartoons, and things got really ugly. There were not enough distractions in the world. At 5:50, we walked Trent down the hall and said goodbye to our little guy. I started crying as we walked away - I kept thinking it could be the last time we saw him alive.

At about 7:00, we were allowed to go back to recovery, he was done! And alive! {I might be a smidge dramatic but I think most mamas would have felt the same way.} He was on pain meds and just coming to from the anesthesia and was thrilled to get to drink lots and lots of apple juice. We got to our assigned hospital room, got Trent settled and as comfortable as possible. 

We found out that Dr. Kahn was not able to get much fluid from his knee or his femur or tibia {where he also tried to take cultures} so a bacterial infection was unlikely {consistent with Monday's diagnosis}. The plan was a potential MRI the next day and the general pediatrics team would discuss potentially starting an antibiotic as a precaution as sometimes a bacterial infection shows up later.

General pediatrics came in and decided to hold off on antibiotics since all signs were pointing to this not being bacterial.

A few Netflix videos later and we got Trent to bed. Brent ended up going home due to his exhaustion from being up with Trent half the night the night before.

Wednesday night was a little rough - T didn't like the morphine administering process because it burned going into his IV and he was just overall uncomfortable. Plus, doctors and nurses kept coming in repeatedly.

Thursday was another day in hell. At 9:00 AM, the nurse let me know T was scheduled for an MRI at 'lunchtime or a little after' and to cut-off all liquids at 10:00. I couldn't get him to eat anything {consistent with his appetite all week}, but he had been drinking quite a lot all morning {yay for small victories!}. Well, noon rolled around, then 1:00. The MRI got pushed to 3:00. Then 4:00. Then 4:30. You get the drift. We had another round of begging for food and drink. Crying. Yelling. Begging. Repeat. Right before we headed back down to the surgery wing, he spent 20 minutes repeatedly whimpering 'Mommy...Mommy'. :(

Luckily, on the way down, he started to doze off and fell asleep while we waited another almost hour for the actual procedure. So thankful for that blessing! We had the same anesthesiologist and she was happy to see our guy asleep compared to his reaction to us telling him he'd breathe some 'bubble gum air' the day before. Haha.

The whole process from start-to-finish of the MRI was over 2 hours. When he finally came out of recovery, he was not our docile little sleepy boy from the night before but so angry and out of it. An extra dose of morphine seemed to help a little and back to our room we went. He was too groggy to eat but drank a lot again. Another great quote - the nurse figured out he liked salty food {because he wailed when offered a popsicle} and she said she could get him some goldfish. He looked at me and cried 'Don't you remember? Those have GMOs!!!!' Yes, my little hippie boy, they do. ;)

He fell asleep back in his room and continued to doze while I pumped {I had a good collection going in a freezer somewhere in that hospital by this point} and got ready for bed. T wanted me to stay again, so Brent geared up to leave. And of course, 10 minutes later, the nurse comes in to tell me he needed to have a pelvic x-ray. Luckily, she advocated for Trent and said they were bringing it to us because originally they wanted Trent to go BACK down to surgery. I could have kissed her.

When the x-ray technician came in and Trent was awakened, he was not happy {and who could blame him}. Everything she did to his leg was torture and I flat-out refused one position {oh sure, let's put a boy who can't move his knee at all in a frog position}. It took awhile to get Trent calmed down {including another dose of morphine} and a freakout when he realized he had a diaper on from the MRI {'but I'm not a bbbaaabbbyyyyyyy!'} and he went back to sleep.

Another general pediatrics doctor came in and told me we had a potential diagnosis based on the MRI. Legg-Calve-Perthes Syndrome. It is a childhood hip disorder initiated by a disruption of blood flow to the ball of the femur - depending on the severity of the condition, treatment has a wide range of plans and luckily we caught Trent's early because some of the more severe cases are irreversible. Oh. And remember those cultures from Wednesday? One of them was growing we officially also had a bacterial infection. Geez.

Sleep Thursday night was even worse. His fever, which broke Wednesday morning, came back in the middle of the night, so we had a battle over taking chewable Tylenol. We also had a meltdown at 5:00 AM for 30 minutes over a booger. Yes. A booger. IV antibiotics also got started at some point {maybe 4:00?}.

Friday morning didn't start off well - who can blame a kid who is going on almost 48 hours with a diet of 1/4 a sandwich and some chips?

Another battle over morphine and the result though was worth it!

I don't know which combination of drugs finally started to work {at this point he was on Tarodol, Tylenol, Morphine and an antibiotic plus IV fluids}, but his sweet and sassy personality returned and he wanted to eat {albeit only a little bit of dry Rice Krispies} and play with all the Transformers we brought from home. Yay!

Dr. Kahn {who had checked on Trent several times and seemed to lose his 'worst doctor ever' status with T} called to tell me a little more about Perthes syndrome and said due to how it looked we were in more of a 'wait and watch' pattern. That was amazing news!

At this point about 8 doctors came in the room {and Brent} and we began another discussion. The bacterial infection. It was classified as Strep Group B and further tests would be run to determine exactly which type, so a general antibiotic that killed about 70% of Group B would be started and as we figured out which exact type, tweaks would be made to the antibiotic. He would need them intravenously and for 6-8 weeks at home {IV or oral to be determined}. Perthes syndrome might actually NOT exist - it might just be the bacterial infection. {Anyone else's head spinning?} A doctor from Infectious Diseases would come by to discuss the bacterial infection further.

I went home shortly after this discussion to get Drew from my parents and spend the night at home with her. T wanted me to be with him, but I knew Drew was needing me {my mom said she kept rooting around on her!}. Brent texted me tons of updates throughout the afternoon, and T continued to seem to make great progress. He even went to the bathroom on the potty {instead of into a special bottle in his bed}! Unfortunately, on the way back to bed, his IV got snagged and ripped out. There was a 30 minute {and 2 attempts} battle to get it reinserted and it was stabilized with a splint. T had been fighting a nap all day, but this was just too much. 

Taking a much needed siesta.

A doctor from Infectious Diseases came to tell Brent more about the Group A {not B} Strep Trent had. They were going to adjust his antibiotics to a cocktail that would include amoxicillin {which he is ALLERGIC to} and Benadryl due to his allergy. It still could be potentially tweaked from there, duration/delivery is still unknown and we should expect to be in the hospital until Monday.


That brings me to now.

I plan to go back up in the morning and will stay again tomorrow night, past that we don't have a plan. We're just taking everything one day at a time.

It has been hard for me to be away from Drew, and then I feel guilty for being upset about being away from her, but I have never been apart from her overnight. Luckily, a very sick looking little girl in the hospital put things back into perspective for me, and I am trying not to feel sorry for myself but be thankful for all our abundance of blessings. Trent may be sick, but he's not SICK. Drew spent 2 nights with grandparents that I know she will BEG to stay with for years to come. She was loved on and spoiled and only nursed 8 times in the 6 hours we were together, haha.

Enjoying a Babs-made breakfast - doesn't seem to be missing me, huh?

If you made it this far, you rock! Overall, we are all doing good. Tired for sure. A little frustrated at the process even if we understand it. Sad for our hurting little guy. Afraid of our Toys R Us shopping trip when we get T home {ha}. Amazed at the blessings we have around us - our family of 4 might not be together but we're TOGETHER. We have grandparents and siblings and friends willing to do anything for us. And as Hagan said today - every day that the 4 of us are alive and together and sleeping under 1 roof {okay that day might not be today but you get my drift} is a day to praise God and view as a blessing. 

So I choose to be thankful for my family of 4 and all our abundance of blessings. And I of course will keep everyone posted as this journey continues before us! Prayers welcome!!


the blogivers said...

Goodness! Poor Trent and poor parents :( that sounds like an awful week. Praying the worst of this is over and that you all will be able to get back to normal now!

Unknown said...

Your faithfulness and thankfulness is beautiful. Praying for your sweet family and can't wait to hear of his complete healing.

Unknown said...

Your faithfulness and thankfulness is beautiful. Praying for your sweet family and can't wait to hear of his complete healing.

Dee Stephens said...

Ugh.. so sorry this is happening! :(
Just my theory. I would be sure to get a 2nd opinion.

Kathryn Bagley said...

I am amazed at how strong you are!! I would have been a hot mess..praying for yall and that Trent gets better soon!! :)

-Kathryn (Ling) Bagley

Kathryn Bagley said...
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