Where to begin....hmmm
I have been so very busy with school that I haven't had a chance to keep everyone updated. Along with school, lack of sleep, illness and everything else going on I've been a little frazzled ;/ ---I'll try to remember everything correctly! (haha-sometimes it feels as though time is flying by and everything is a blur)
I believe Ryder's present illness started about 10/28. Les and I noticed a weird looking rash close to his G-tube. It resembled the staph infection he had when he was younger (white pimple looking bumps). Les brought him in to see his pediatrician. She thought it was a yeast infection and prescribed a topical ointment and put him on Cephiloxin (antibiotic) for a 10 day period just in case (since pus was present). He was fine for 3 days and the rash cleared up. Ryder threw up on Halloween night... but ended up feeling well enough to go trick or treating with his brothers for a bit. He was a monkey. I taught him the sign for candy please! It was cute;) He again seemed fine for about 6 days after that. He was a little sluggish and not as energetic and silly as he usually is, but it wasn't to concerning. Around Nov.5 th-ish, he started vomiting, a lot!!! He thrown up at least 5-6 times that first day until he was just dry heaving. He had a slight fever. The next morning he had a fever of 104 and vomited a few more times. We kept him on Ibuprofen and Tylenol to break his fever and make him comfortable. He was still signing that he wanted to eat and he did fairly well with the food he did eat. However, his appettite continued to decrease and he vomited for 4 days. We kept treating the fever. I was worried that Ry might have a strep infection, but Les thought that since he was on antibiotics still that it was going to start getting better and would kill strep if that was the case. On the 5th day, Ryder stopped vomiting, but continued to have a slight fever. He had periods where he'd be playful and happy. It was on the 6th day that I started really getting concerned that he had a fever for 6 days and he was still miserable. He then got the awful seal barking cough and refused to eat. That is when we brought him to PCH urgent care. He had tests and x-rays to rule out pneumonia. He was really "floppy" and just obviously not feeling well at all. The lab results showed a low white blood cell count. The doctor said there was a slight chance he could have a bacteria infection in his blood. He treated him with an injection of heavy duty antibiotics just in case (forget the name of it). He was given steroids for croup and an epi nebulizer. He was able to sleep a little that night once we got home. The next day he woke up early. He was so pale and even more limp. He didn't want to eat or drink anything, but kept signing that he wanted to eat. I wrapped him in a blanket and snuggled with him outside so the cool air would help with croup. Once Les got off from work, he noticed how foul smelling his breath was. Ryder continued to look and act worse and his GI tube was leaking out from the stoma so we brought him back to PCH urgent care. A new doctor gave him a strep test. She also noticed a rash on his genitals. Of course at that time, I was piecing everything together about my prior concern that he had strep, bad breath, not wanting to eat, pale and overall miserable--I convinced myself it was strep from his GI site that had spread and he now he had a rash on his genitals from this--and the 1st rash may had been strep as well. (Noah had a strep rash awhile back). Years ago, I had a student with a strep infection that had spread through his body. It was so bad that he was hospitalized for a week. His breath smelled and he was pale and weak also. So by this time, I'm extra worried and trying to comfort Ryder. The doctor that treated Ry the previous night came in to speak with us along with the new doctor on the case. The doctor told me it would have to be raining cats and dogs for Ryder to have strep with all the antibiotics he had been given. I still continued to state my worries about how often Ryder had been on antibiotics and what if he was resistant? That is when the strep test came back positive!!! Of course I had to tell the doctor I guess its raining those cats and dogs then ;0/ More test and xrays were performed. The doctor noted fluid leaking from his stoma (g-tube site) and the rash on his genitals getting bigger. The doctor wanted to rule out bowel obstruction since Ryder hadn't had a bm that day and had foul breath. Luckily that was clear and his vital signs all were normal. By this time there were several doctors trying to figure this out. They conferred in the room next to ours as I listened through the paper thin walls-haha. Anyways, the doctor came in and said that 5% of the population are strep carriers and will always test positive for strep. He still didn't think it was the case that Ry had strep. He said if it was true that maybe one other person in the world has ever had strep not killed off by the antibiotics Ryder had. They were all at a loss and so we were sent to PCH hospital to observe Ryder and possibly bring in more specialist.
Well.....long story even longer--- Ryder had even more blood draws. My poor guy :( They busted a vain and had to repoke him....then the blood they did collect ended up clotting so he was poked AGAIN :( He is all bruised up now. Anyways.....white blood count came back showing improvement. We are waiting on the blood culture results which should be in today. I had to go to clinical by 6:30 that next morning so Les stayed with Ryder:( He said there wasn't really much they could do at the hospital and since his vitals looked good still they sent them home early. Ryder slept all day long and when I came home at about 3 he had just woken up and was eating a few bites of oatmeal and had a smile on his face:) He played for about 2 hours before he went back to sleep. It is so sad that when he gets sick like this it seems like he has to relearn to walk again...he was so unstable and didn't take more then a few steps before falling. He slept most of the day again today. He is looking a lot better though. He has coughing fits, but is eating a little more and his color and mood is mostly back to his usual:)
So that was most of our hectic last few weeks that I can remember! On top of Ryder not feeling well, Anaya (a little 2 yr old girl with Krabbe leukodystrophy) passed away on Sunday. I was up all night following her progress on Saturday and then devastated by her passing. I have been a walking zombie wreck the past several days or so! I'm hoping to catch up on my sleep, school work and friends & families lives this weekend:)
http://youtu.be/vYfxhsLx1GQ
http://youtu.be/YDVBNHRmcvs
Oh, Denise! What a wild ride you have been on. I hope that Ryder continues to improve. Prayers and hugs to all of you.
ReplyDeleteIt was so sad to read about Anaya passing, but also a sense of relief that she is no longer in pain.
Mom's of Leukodystrophy kids are the strongest Mom's in the World!
Dacia (Tammy's friend)
Poor Ryder, It is so sad to see a little one miserable :-(
ReplyDeleteSo Glad he's improving and I hope you are getting some REST!
You are an amazing woman and mom and will one of the best nurses ever. Ryder is blessed to have you and Les to fight the battles he can't. We continue to pray for him and you and your family. Donna
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