There really isn’t a great way to write a post about your 2.5 year old son being admitted to the hospital and it is even harder to title. It all started last Sunday (7 days ago) when Everett started screaming in pain at about 1 am. He was awake most of the night crying out and I spent all night trying to comfort him. All day Sunday it was the same thing and my husband and I took turns walking him around to keep him happy. While we first thought it was teething pain related we decided to take him to urgent care since he was grabbing at his ears to rule out an ear infection.
Instead we got the news that he had strep, double ear infections, and lymph node infections. He spent the next week in misery. He didn’t walk at all except on a handful of occasions. Most of the time he was in the BobaAir or in our arms. His pain and misery were so bad that even just cuddling on the couch to watch TV wasn’t enough to keep him happy. To stay sane all week I went out as much as possible to just find a reason to babywear him and walk around shops. This was my daytime coping mechanism. At night it was nursing, singing, and cursing under my breath because I was exhausted and getting no sleep. I won’t lie- I was feeling very sorry for myself. I didn’t want to, but I was the parent he wanted and clung to 24 hours a day. My husband could rarely hold him and definitely couldn’t comfort him at night. As sick as he was I knew he was hurting but I was a little resentful that I was the “chosen one” and hadn’t had a break in a very long time.
We went to the doctor’s 5 times, each time either for a shot for his treatment or because he was still miserable and we needed answers. By Thursday, after a fluke morning of normalcy (I mean, he looked cured and I announced so to the world!) he was miserable again after his nap. We felt he should have been better so we took him to the doctor again. They said he still had strep and needed a new type of medicine. At least we thought we knew why he was still so sick.
Friday afternoon Everett was still as upset as ever. It has been hard trying to be fair to Fletcher who is the picture of health. We went out back to put our feet in the pool and Ev sat unhappily in my lap, but Fletcher was thrilled. I took Ev’s socks off to have him put his feet in and noticed something really odd- the place where the elastic on the sock had been was bright red and raised up. It looked very painful. He screamed at me taking off his sock so we went inside. When I went to remove his shorts soon after to change his diaper I saw that his legs and feet were covered in tiny bright red spots. I assumed they were ant bites at first which didn’t make sense because he hadn’t walked outside at all and wouldn’t have been exposed to any ants, especially that long to get covered in bites.
A few hours later it was obvious that the feet and legs were swollen and that even the slightest touch to that area resulted in screams. Welp, time to go to a doctor again. The urgent care doctor immediately diagnosed him with HSP.
[box]Henoch-Schönlein purpura is a condition that causes small blood vessels, or capillaries, to become swollen and irritated. This inflammation, called vasculitis, usually occurs in the skin, intestines, and kidneys. Inflamed blood vessels in the skin can leak red blood cells, causing a characteristic rash called purpura. Vessels in the intestines and kidneys also can swell and leak. -via Kids Health[/box]
The fact that he has been fighting a losing battle to various infections for a week probably lead to the HSP. The doctor informed me that “It will only get worse before it gets better” and to look forward to his pain and the rash/swelling increasing over the next 3-4 days, and it lasting 1-2 weeks. There is no treatment except steroids to relieve the joint pain and swelling, but I was informed this was only for the worst cases. We were sent home with a prescription for yet another type of antibiotic just because, and nothing to help the HSP.
Even with that scary diagnosis Saturday wasn’t looking too bad. The symptoms from the top half of his body had eased away and, if he were sitting still, Ev was pretty happy. He went for his nap easily and I was looking forward to a semi-normal Mother’s Day that didn’t involve my son being in misery. After his nap he woke up miserable once again and I noticed that his left lymph node in his neck had grown to a golf ball size. Why? WHY? WHY was this still happening?
We decided, after speaking with our doctor on the phone, that it would be best to take him to the Children’s ER and skip Urgent Care. It was a relief to see doctors looking at a possible reason for all of his symptoms to rule out anything much more serious. He was once again in a lot of pain, and new pain was seen in his lower back. We feared it was internal. An IV was hooked up to hydrate him and a little pain relief was given. He perked right up and became a new boy on the pain relievers and I was crying happy tears to see him feeling something other than pain for the second time this week. It was decided that he should stay overnight.
Staying in the hospital with my 2.5 year old wasn’t how I envisioned my Mother’s Day. I was looking forward to a much deserved morning of sleeping in (I haven’t slept all week, I’m a full time pacifier all night because it is the only thing that gives him comfort and helps him sleep) and a home cooked breakfast. Instead I was woken at 7 am (and every 2 hours all night for vital checks on Ev) to have more of his blood drawn. Then he had an ultrasound and chest X-Ray all before 10 am. I didn’t even get breakfast! No one offered us any food at the hospital and by the time my husband got there I was starving. He came with gifts at least!
Everett has gone up and down in spirits. For a few hours he seems pain free, then suddenly he will be in terrible pain from the HSP. It spread to swelling in his head yesterday which caused a bad headache. By the end of the night he was feeling much better though, and by this morning he woke up happy. Overnight he got a good amount of rest, so did I. I woke at about 4 am to a male nurse leaning over us checking Ev’s IV and my boob was casually out of my shirt because at some point Everett had released it from his mouth. I was half asleep so luckily the shame didn’t register and I tucked it in and zoned back out. This morning he is playing with 2 rubber duckies and a jet and as happy as can be!
Once again I repeat how grateful I am to still be nursing. He has had maybe a full meal combined if you add up the amount of food he has eaten in the last 7 days. He would always nurse but getting food in him has been a challenge. I also owe my sanity to the BobaAir. If it weren’t for babywearing I couldn’t have kept his screaming to a minimum all week.
I’m hoping they send us home today, but as of now there is no confirmed diagnosis for his lymph node swelling and the best guess is Cat Scratch Fever. They won’t treat the HSP with steroids until the lymph node problem is solved because that would make diagnosing it impossible. I’m looking forward to seeing Ev make a full recovery soon. Thanks for the many well wishes and positive thoughts you have all been sending since I started posting updates on my facebook page and twitter.
Hang in there mama, you’re doing a great job! Ev is in our prayers, and so are you.
Poor thing! Sending positive thoughts to your family. =( I had cat scratch fever once… it was awful!
Hope your lil guy is on the mend soon! Sounds like you’ve all had a pretty trying week! *Hugs*
I’m so sorry your poor boy has to go through this. I had CSF when I was little, and ended up getting my lymph nodes removed. I don’t remember it very well, because I was so young. I hope things start moving in the upward direction for you both. Sorry you didn’t have the mothers day you wanted. ((((Hugs))))
Reading this, I was crying in sympathy for you and Everett. I thought my Mother’s Day was rough because my daughter was sick with fever and diarrhea for the day, but this puts it in perspective! My girl was born the day after your boy- I remember they had the same due date (10/10/10), were both ‘late’, and were both our first home births and 2nd child. (Extended nursing helped us w/nourishment and comfort yesterday too.) I’m so sorry for you and your family! Get well soon, Everett!
Hope he starts feeling better soon! <3
Oh my goodness, poor thing 🙁 I will be thinking good thoughts for you guys and hoping that he feels better soon…and that you get a diagnosis!
I am happy to read Ev has been receiving great care and has had moments of relief from his pain. I hope his case follows the lines of ‘best case scenario’ instead of worst. Hang in there Kim. Your family will get through this.
Ug! I had cat scratch and it hurts quite a bit. Please give him probiotics if they put him on c diff. Take care.
Cat Scratch Fever is really bad, My ex boyfriend got it and he was miserable. I think it one of those things though that if you have had it you NEVER EVER get it again. I really hope he gets better soon!
My little brother had HSP when he was really little. I remember my mom saying it was miserable. So sorry for Ev, hope he feels better soon.
Oh poor little guy! I hope he gets all better soon.
I hope all is going better for Ev and your family.
What an ordeal! Glad that he is feeling better and thank you for sharing your experiences and coping mechanisms. And don’t worry, I’m sure the nurse has seen it all before!
Poor boy, and poor mama! You certainly look exhausted in that pic. Sending good thoughts on an answer soon, and fast healing!