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Lucius has been in the hospital

post #1 of 24
Thread Starter 
Wednesday I noticed he was acting a little off. He was kind of fussy, felt a little warm to my touch, wasn't sleeping very soundly. I decided to keep an eye on him but tried to go about my day which included a neighbor's son's birthday party. At the party my neighbor held him for a bit and she commented that he felt warm. We went home and I took his temp. It was 100.3 which is just 0.1 degree less than what the doctor at our clinic would call a fever. I wondered and worried for a bit, then later as I was changing his clothes I noticed he had broken out in petechiae (red spots that do not blanch when pressure is applied) all over his body. I got a whole lot more worried because a few symptoms of meningitis are fever and a rash. Then I noticed he was having myclonic seizures in his legs. He seemed to be in pain but I couldn't figure out what exactly was hurting him. And, though it seemed insignificant at the time, he had a bright red spot on his right foot and his leg seemed a bit swollen. I took his temp again and it was 101.8.

At 1am Thursday morning I decided to err on the side of caution and take him to the ER.

Immediately when we got there, the doctor ordered a crazy barrage of tests. Including a lumbar puncture (aka spinal tap), which despite multiple attempts they never got a sample of CSF. So they poked and poked him for nothing. I was SO angry because my tiny baby was screaming and crying and I'm all crazy hormonal, so after a bit I yelled at the doctor and told him he was horrible and that someone else needed to do it. He seemed insulted but decided he was going to admit Lucius so he'd let the pediatric doctor try for the LP.

The peds doctor attempted the LP but wasn't successful either. They decided just to start some antibiotics and try to figure out the illness later. A new doctor came on duty and she happened to be the one that saw Lucius the day we were discharged from the hospital when he was born. He was sent for an x-ray which came back fine. She pointed out that the redness in his foot had spread and the swelling was getting worse. She came back in several times and after just 6 hours since she had come on shift, the swelling and redness in his leg and foot had gone from a small red spot and a bit of swelling to +4 edema from his toes to his groin and his entire foot was swollen and purple-red. We were very confident we'd found the source of infection and her tentative diagnosis was cellulitis. She also witnessed the clonus in his legs and ordered a head CT to check for neurological problems and then said she was going to talk with an infectious disease specialist at a different hospital.

They decided that since A) he'd been given abx and B) we had a probable source of infection that he was not going to have another attempt at the lumbar puncture (thank god) but he was going to be transferred to the children's hospital in Portland. The big concern was that if the infection he seemed to have in his leg had gotten into his bone or joint, he would need surgery or could possibly face amputation. Since that was an emergency, we rode in an ambulance. Thankfully I was able to call my husband and he had a neighbor go pick up my car. You can imagine at this point, it's been over 24 hours since I'd slept and I'd just been told my son could need surgery or could lose his foot or leg, I was in no condition to drive myself.

Immediately upon arrival at the new hospital, I hated it. At the other one, I'd had a huge private room and it had a bed for parents and it was quiet and beautiful and the staff was fabulous. At the new one, it was 2 patients to a room, the rooms were so tiny you had to put away your fold up cot after 8am, the nurses I got were all bitchy and too busy to actually answer questions...I was a mess. I just sat at Lucius's bedside and cried. Finally, a doctor came and told me I couldn't feed him until 6pm (it was noon and he already hadn't nursed since 10am) so he could have an MRI under anesthesia. I got pretty irate and chewed him a new one. Somehow magically an opening appeared in MRI at 2 and by 3:30 we were back in our room and he was nursing and feeling as good as he possibly could.

I finally got to meet the infectious disease specialist and he gave me the good news that the MRI came back clear and all of the blood, sputum and urine cultures had come back negative. Which is good but the flip side of that was that we were kind of shooting in the dark trying to guess what bacteria was making him sick, how exactly to treat it and would he get better. So he switched around his antibiotics a little to try to cover all the bases and we sat back and waited.

On Friday we saw a little improvement. His demeanor was better and his pain seemed under control with just Tylenol. The blood cultures still had shown nothing so we just stayed on course and by Friday night the swelling and redness was receeding visibly. I hadn't slept since Tuesday night and was pretty much delerious but I made friends with the mom whose son shared our room and we passed a lot of time together talking and going to the cafe. Before they went home we exchanged phone numbers.

On Saturday morning his foot and leg looked almost normal, his appetite was completely normal, he had stopped the myoclonic seizures in his legs and he seemed so much better, so the doctor asked us to stick around long enough for him to get a couple more doses of IV antibiotics and we could go home after 2pm.

The official diagnosis was celullitis with unknown causes. There has to be a primary source of infection, where it started in a small wound or scratch, but we never found it. Pretty much this was chalked up to bad luck and a young immune system. We're home now and Lucius is snuggled up with his Daddy. What a horrible ordeal, but I am so glad I listened to my instincts to take him to the ER when I had or the infection might have spread much further in the time it took to figure it all out. I'm so thankful everything turned out okay.
post #2 of 24

That sounds like a horrible ordeal. I'm so glad to hear that you're home now & he seems to be fine, though!
post #3 of 24
Not in your DDC but couldn't read without sending you a

I'm so glad he's home and safe w/his mommy and daddy! What a nightmare!!
post #4 of 24
I am so glad that everything is okay now, what a scary thing to have to go through. I hope both you and Lucius are recovered
post #5 of 24
OMG! Poor mama, poor baby!

I'm glad he is on the mend. I can't imagine how scary it was
post #6 of 24
post #7 of 24
How awful! I'm glad you're all home now and doing well. Be gentle with yourself. I went through something nearly identical (including the repeat lumbar puncture ordeal) with DS when he was 9 days old. I ended up with PTSD/PPD from the aftermath of it. DS is now a healthy, happy 16 month old, and I'm better too.
post #8 of 24
So sorry you and your babe had to go through this trauma. I hope you get some rest and recover easily.
post #9 of 24
DID, I am so sorry to hear about ds's situation. How is he now? And how are you? Sending healing thoughts your way mama.
post #10 of 24
Thread Starter 
He seems great this morning, we both slept pretty well last night together in the big bed with Daddy and big sis. He hates the abx though.
post #11 of 24
What a heart-wrenching experience ... hugs and prayers to you and Lucius.
post #12 of 24
Poor baby and poor mama! What an ordeal- I'm so sorry you had to go through that. I'm so glad he's home!!
post #13 of 24
Geez, mama, that gave me chills. I had to go straight to the bottom to ensure he was okay before I read the whole thing through.

You were definitely right to trust your instincts.

So glad to hear he's back to normal now. Hugs.
post #14 of 24
Sending my healing thoughts and prayers. I am so glad to hear you're home from that frightening experience. I'm sending hugs and thoughts and prayers that Lucius continues to heal and is himself again soon.
post #15 of 24
Oh my God, I'm so sorry you had to go through all that. What an unimaginably scary situation.

I'm so glad he's okay.
post #16 of 24
What a nightmare. I'm glad everything is alright!
post #17 of 24
I'm so glad he's OK and you trusted your instincts.
post #18 of 24
post #19 of 24
Not in your DDC but I couldn't read this without offering ((hugs)). What an ordeal for your whole family, and I'm so glad it's all over and your precious baby is safe and happy at home now.
post #20 of 24
Poor guy, I'm so glad you're home! AJ was admitted to the PICU after an ER visit, it was terrifying, I can't imagine it 3 mos earlier than it happened to AJ. Hugs to all of you!
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