Newborn With a Fever

Our newborn had a fever. She seemed different too. I described her as “not well” which when it comes to a newborn that means we need to think about going to the Dr. or hospital. Thankfully the not well look wore off quickly and she started acting better within an hour or so. We soon noticed she had gas for a bit and that's what seemed to make her act "not well." She never cried or screamed, but she moaned and fussed. Once the gas was out she settled down and we took her to bed thinking we might be at the ER by morning because of the low grade fever. By morning she seemed comfortable but the fever had spiked to 101.7, we think. We weren't sure the thermometer we were using was correct. She also hadn't nursed in 5 hours. I cried and we started packing hospital bags, diapers, cell phones, laptops. Over the course of that time she finally ate and looked very well and happy. She opened her eyes a lot, followed us with her eyes, watched us and just overall looked happy. I realized at that moment how well I knew her in just 11 days. I knew what was normal for her, I knew what she liked, I knew how she wanted to be held, how often she ate and wet, what her poop looked like, what facial expressions are normal for her, how and what time of day she wanted swaddled. I knew how to lay her down so she was comfy and I knew how to burp her best. When other people see my newborn they see a small sweet infant that needs cared for, I see a baby who I've bonded with and who I know with my soul. She just did not seem sick enough for an ER visit. The thought of handing her over was agonizing and it seemed extreme. We couldn't fathom our healthy, breastfed, alert baby going through those tests needlessly. Her temp slipped down a little again; it still in the "go to ER range" but not very high... we waited. 

Aunt Sharon and Grandma came and got the other kids so that we could go to the hospital immediately if needed. We were so thankful for the peace and quiet during such a stressful situation. They thought the baby looked great too and even Grandma, a former nurse, supported our decision to wait it out a bit longer.

Ricky went to the store three different times over the day: to buy a rectal thermometer, an ear thermometer and then finally a breast pump. (I wanted to pump off some foremilk in case too much was making her gassy, it seemed to help.) Ear thermometers aren't thought to be reliable with infants but we found it was. Rectal temp has a higher reading than other means of temp taking but is considered best for newborns. We took those things into consideration when deciding how high her fever was. We poured over webpages of medical advice about fever, meningitis, ER visits with newborns, and personal testimony from parents. Of course for as many stories that said ‘we took our baby in, and she had meningitis’ there were just as many stories saying it was horrible ‘they put our baby through hell and back with invasive testing and never found anything wrong.’ Better safe than sorry is a great rule of thumb when it comes to your kids, but common sense and instinct are also tools we use. So we had big decisions to make.

We have long known a newborn with a temp of 100.4 or higher is cause for concern and generally warrants an automatic ER visit. Taking her to our family Dr. would yield the same recommendation; take her to the ER because if she has a fever certain things are ruled out by testing --but she’s probably okay. We know that once in the ER nearly all babies under 3 months old and all babies (neonates) under 28 days old are automatically given a spinal tap, complete blood work up and a urine test (usually by a catheter). This is then followed by a standard 72 hour hospital stay and antibiotics. If we went in we knew we had to be ready for all of that.

It’s so hard to be an educated, involved, clear thinking, decision making parent in a sea of uneducated parents and a one size fits all health care model. Parents like us are sometimes bullied into things and threatened with social services for going against medical advice. We’ve always been very fortunate and had good professional health care givers, but you never know. So we sat at home counting every wet diaper, each time she nursed, every sound she made, every poop and every coo. We even counted how many hours she slept, all very diligently. There wasn’t a noise or movement she made that we weren’t hearing and seeing. Our bags were packed just in case.

Her fever kept going down all day. It spiked back up once or twice but not too bad. I’d get upset and scared when she wouldn’t wake to nurse, but within minutes of my tears and self-doubt starting up she’d latch on, wake up, eat, pass gas while briefly fussy, look around at us for a while, wet a diaper and then we’d do it all over again.

I noticed over hours of searching that I could not find anything online reassuring about staying home and observing a young baby before heading to the hospital. I didn’t find hardly any parents talking about fever, newborns, or medical choices, let alone very many questions regarding the invasiveness of routine “mandatory” procedures.

Her fever finally stayed steady between 100.3 and 100.5. She was doing great and it climbed down from there. Ricky and I collapsed into bed relieved. We looked at her so peaceful and healthy looking. Ricky mentioned how sick she'd look if she was hooked up to wires in the hospital and crying. We were so relieved we hadn't gone in yet.

Overnight her low fever left and she was eating and waking every 2-3 hours again, instead of every 3-4 hours. She’s been fine since.

 Worth mentioning in case other parents are stumbling across my blog looking for illness information:

The degree of fever is not always a good indicator on how sick someone is. In the case of meningitis it is just something to go off of. It’s a warning sign. That is why they say to go to the hospital, so they can monitor the child and get tests running. Meningitis is rare but there’s a lot at stake and babies can go downhill quickly. The absence of these serious symptoms: stiff neck, bulging soft spot, screaming/crying, not wanting to be held made us very confident about staying home but the “what if” thoughts did keep coming. Generally it's hard to tell how a newborn is -especially if they are sleeping. Our baby was waking and alert every 4 hours and wanting to be held and talked to so we luckily had that to go off of. In addition breastfeeding gives babies a huge advantage over illness so if she wasn't getting antibodies and gut protection via colostrum and breast milk we would have been a lot more worried as well. But we were still plennnnnty worried! We find new experiences, new scares, new joys, and new challenges with every new child we have!

Links added later:
When a trip to the hospital brings a visit from CPS

Spinal Taps Carry Higher Risks For Infants And Elderly, Study Shows   
An X-ray-guided spinal tap procedure fails more than half of the time in young infants and should be used sparingly, if at all, for those patients, according to a new study. 

Another Hospital Trip: Penelope's Log

Penelope's Hospital Stay Log - pieced together from Facebook posts and a log I kept to record our experience with hip sepsis in our 6 year old daughter. Hopefully this is correct and pieced together okay, because my kids are going crazy and I d not have time to check it all that well today! I've been trying to post this for dayyys!

Day 1 Emergency Room Trip/ Surgery Right Away
2/13/13
I'm online at the hospital now so I can give frequent updates on FB now (and blogging). Family that has been calling us: You can certainty still call us, but I'll post a bunch so you can all stay in the loop here.

4pm on 2/12/13 Penelope's severe hip pain started all over again and she could not walk and was crying/screaming out in pain when touched. We brought her back to the hospital at noon on 2/13/13 to see orthopedic specialists. (I politely demanded to see orthopedics and wouldn't let anyone else examine her, because 2 weeks ago the ER was super unhelpful.) Fluid was drawn from her hip and she has a bacterial hip infection. The fluid is being cultured to see how bad/what it actually is.

Penelope had surgery at about 5:30pm 2/13/13 to clean her hip joint and have a drain tube put it. We are really doing pretty well for having our first serious kid hospital experience. Thank God Ricky made it time to the hospital to see us both.

Day 2 Recovery
2/14/13
Ricky needed to go into work. Penelope is doing well recovering and is "ok." She doesn't want to move and is very scared of the pain. She hates pain more than the average kid or person. Her physical therapist just go her out of bed (she screamed which I expected) and placed her into a kid sized wheel chair. We went down to the playroom and did some crafts. We brought more crafts back to the hospital room. She warms up and gets talkative for a while and then, and as to be expected she gets cranky for a bit too.

She needs to stay here for 3-5 days. We will be sent home with iv antibiotics for 3-4 weeks and we will get an in home nurse visits. (At least that's what they think our treatment plan is.) Depending on how she does she may need a walker at home. It look like her drain tube will get to be taken out tomorrow. She is on low dose morphine today.Family and friends that have already called and left messages thanks so much. I get teary from all the support and outpouring of love!

Fun things for Penelope: She lost her first tooth! And she just discovered how to move her own wheelchair, which she really is enjoying. She refuses to move at all so getting her active even if only in the wheel chair is a huge step! Getting her up to go pee is horrible and painful because we have to lift her, and she cries for her Daddy.

They actually pulled it out right before surgery while she was under because it was too loose to risk it falling out during surgery. I didn't want her "robbed" of her first tooth lose experience (it's ALL she talked about) so I never told her. When she discovered it missing I helped her look in her hospital bed for it until she "found it." She thinks it fell out in her sleep, which is mostly truth. :)

We were given a tooth necklace from the hospital we never showed her and saved. In it is a note from the Tooth Fairy that I wrote. "Penelope, be brave. This is for good luck. You will be better soon." She will take this with her for some more procedures today that will be hard but hopefully with Daddy here and a good luck charm she will feel better.

How I'm fairing at the hospital: It's hard seeing Penelope like this and it's stressing me out. I'm not too badly stressed though because I don't have a horrible headache -usually I would have one. But let me tell you: this pregnant mama is not going hungry. I'm eating all Penelope's leftover food we order (which is a good amount!) + my own food and snacks + any smoothies or juice she doesn't finish (she prefers water over most things). It's like I'm at an all day buffet. I also had 2 donuts (chocolate bars!) today. lol. I usually can't eat when I'm upset so I guess I'm not too upset! I am stressed though. Not sure if I normally eat when I'm stressed....but definitely eat when I'm sitting around with food near me and pregnant! 


2pm
I'm so ready for a break from some medical procedures. I'm so ready for Ricky to help with her tomorrow, because her being upset and in pain wears on me. I hate this and it's hard. If things were really horrible or she wasn't "okay" he'd be here, but he really needed to attend some meetings and conference calls today. 
4pm
Poor Ricky has tons of stuff going wrong at work and his computer crashed yet AGAIN today and it was after the tech people were closed. So now he has to go back to work in the morning to get the computer to them.
 6pm VALENTINE'S at The Hospital...
Ricky brought a Valentine's dinner to the hospital to surprise me. I was all teary! He still tried to make our evening special. We always have soft cheese, bread, and other "fancy" things for the two of us if we don't go out on V-day. Yes, I totally eat sushi, soft cheese and shrimp while pregnant. He brought sparking cider and joked that he should have gone all out and brought me champagne. LOL! The cider was SO GOOD! 

Penelope told us she'd take a picture of us, how sweet is that! Tired but in love hospital parents of EIGHT kids :) Happy Valentine's Day~ Everything is tolerable when I'm married to this man.

 

Day 3 Rough Morning! Rough Day, happy progress eventually!
2/15/13
1pm-
 Really rough morning, but things are looking better now. We had two more procedures this morning that required fasting for sedation. Ricky decided that going into work to get his computer into the tech guy was not an option and that we really need him and he wanted to be with us. The hospital was running late so that didn't help things. I was relieved to not have to deal with her crying and pain alone. Seeing the sad concerned look on Ricky's face made me feel so much less alone. When we had to leave the room for the procedures our eyes welled up a bit.

She was heavily sedated so even though it was totally traumatic getting ready for it and waking up she didn't actually feel it and doesn't remember anything. Now her hip drain tube is out and her picc line is in. Picc line is a catheter in a major vein, inserted into her upper arm, and it ends right outside her heart and delivers her med(s). It replaces the hand iv totally. It's totally creepy sounding but it is a long term iv we need her to have for various reasons. Some risks are involved but nothing we have to be too freaked out about right now. A home health aid will come to our home and monitor it and teach us how to give her medicine through it.

Coming out of sedation she was freaking out crying a bunch and dizzy, but I was able to talk her down to relax. She was angry and sad and still refusing to walk. She seemed to be in a lot of pain. After the procedures we headed back to our room. Seeing the other children here is seriously just as hard on me as seeing my own. A baby was screaming and having some produce done as we walked by and I started holding back tears. I think everything has really started wearing on me today. I feel like I'm going to bawl any moment. Penelope started crying out "Mama" and "Dada" yesterday during pain, fear and other hard times and it was heartbreaking to hear that. We noticed some regression after her 24 hour hospital stay 3 weeks ago (night waking, crying, acting younger again/talking whiny) so we are expecting some more similar situations and rough times to come up during and after this ordeal.

Anyway...We got Penelope back into bed to drink slowly and start eating slowly so as not to make her sick. After we were sure she wouldn't be sick she ate a ton for lunch and drank a ton of tasty lemonade. Now she is HAPPY!! And moving easier! She cried only a tiny bit when we had to put her on the potty then after settling into her wheelchair she started moving around in the chair and putting pressure on both feet. She is starting to make movements without knowing it. We explained to her that she needs to learn how to move herself and what works for he and she'll feel a lot more comfortable instead of her just flat out refusing to move and us having to move her. 

5pm- We met with the infectious disease people and nothing has grown from the culture, which isn't terribly uncommon unfortunately. So we may not know what kind of infection/bacteria she had. That is frustrating. They have to treat it as bacterial because of blood counts and it meets all criteria. It's super interesting learning about the testing processes and our infections disease doc likes to tell us all kinds of super technical info in ways that we understand it. She's great and we are super interested in the whole thing. They are very hopeful something might grow still. Of course I wonder "what if" she didn't need this aggressive of treatment but they have many, many good answers to that question (plus I have the internet at my finger tips to tell me it was necessary!) We also found out that there is no concern of bone infection anymore. There is no way to be sure without an MRI but there is no reason to put her through that and her antibiotic regimen should take care of everything anyway. Her bone is not soft like it would be on the end if the infection spread into it (the surgeon checked while she was opened up! uck! My poor baby!) They said something about us going home MONDAY??? NOOOOooooooo Please be it Sat or Sun PLEASE....

I was suppose to go home last night and didn't, so tonight I get out of here now and leave for a while.

Day 4 I needed that break! Home for bath and break  for me!
2/16/13
So, last night I went home alone for a break and to see the animals at home and I found the most gorgeous pink and purple flower bouquet in my car.

I cried just about all the way home; for love, for happiness, for gratefulness, for stress and for release. What a beautiful life. I enjoyed being back in the world. I had no idea how much being cooped up in the hospital wears on you. The cold air on my face outside felt good. I felt hung over with a slight headache and I was a bit dizzy.

Ricky stayed at the hospital with Penelope and she made some awesome improvements while I was away for a few hours. Physical therapy came by and made her take a step. It's like seeing your child take a step for the first time all over again. She was absolutely terrified over the past few days and said she'd never be able to walk again. To see her smile and try to move around without tears...Ricky and I just rejoice. (she is still not walking, but she took some steps and is ding some things on her own) It's been a hard few days and things are so much better today. 

Oh my goodness! They just came in while I was writing this and said we get to go home today!!!!! YAY!!!

Penelope standing for the second time alone! This change in her progress (moving a little more and her not needing pain meds) and our attentiveness and self sufficiency to care for her the entire time (nurses even said so) in the hospital lead them to release us 1-2 days early. We rock!!

 
1:30 pm Home
Settled in, happy, relaxed, relieved. Waiting for home health nurse to bring her meds and give us instructions. 
4pm This is everything we need for her noon meds! It's a lot of steps!!!! We were totally overwhelmed at first, but it's going really well. She gets 1 med at 6am, 2 meds at noon, 1 med at 6pm and 1 med at midnight. We need almost this much stuff every time. The red capped syringes are the meds, the white capped ones saline, the blue cap heparin.
 

This is the schedule and things we need for each time we administer her medicines. We use this chart to help us for the next 3 weeks, unless something changes when they check her blood work each week. Ricky made this spreadsheet for us. He is awesome! xoxo

 

Day 5 Monday 2/ 17/ 13
You've got to be kidding me...
After a really happy day full of progress on Sunday it was super disappointing and a little scary to spend 5 hours back at the hospital again on Monday. Penelope is/was in debilitating pain on the other side now (leg and knee). She endured several more exams and another x ray and sonogram. We met with orthopedic, rheumatology, and infectious disease doctors. They can't find anything else wrong so far and stand by the antibiotics she's on. Her blood work today came back looking very good, too. She ended up walking around A LOT on Sunday and all on her own so we wonder if she just over did it. She's an extremely sensitive child and the way she acts like everything is the worst pain EVER is wearing thin on us. We are SO thankful to be back home again. It's all still a bit concerning though. And exhausting!!!

Her surgical dressing (left hip) came off today and all looks good with that. It's beautifully sutured and looks like it's healing marvelously. It does not hurt her but is tender. Everett kisses her and tells her to get better. It's SO sweet. We all can't wait for our version of normal to be back. It's been a rough few months and even rougher past few days.

I was so upset and holding back tears to have to leave Everett to go to the hospital again, esp. not knowing if I'd make it home again anytime soon. Charlotte (16yrs) sent me text messages and photos of him happy, and of her doing a science kit with him to make me feel better and to show me he wasn't upset. What an angel she is. I love you Charlotte, thank you times a million for being the best sister ever to your siblings and daughter to us! xoxo

Upon my return Everett (2.5yrs) was a little grouchy about me leaving him. When I got home he looked at me cross and said, "Hop-tail." (hospital) Then he wrapped his arms around me and kissed me. He has no idea what the hospital is, but he knows I keep leaving him behind.

Antibiotic regimen 4 x a day is a lot of prep work but we are doing it! While we fall behind in other areas of life, like school and routine, I am reminded that we make it up with interested kids who are learning about: medicine, human physiology, health care careers, and last but not least pulling together as a family.

Home 2/21/13
Things are much better and she's feeling much better. We have started to get back to normal, the little boys are crazy, we are all happy to be together and Penelope is walking! Her meds are going well despite a rigid regimen. I have an outpouring of love and comments from a "Love Bomb! Thank you visitors!!! How incredibly sweet and uplifting!! Thanks so very much Sara!

Penelope

A day after we were home from the hospital I saw on our dining room chalkboard wall "Bring Nellie Home" written around flowers, hearts and other pictures from the previous week. I stood and stared at it almost welling up with tears. There are those moments when you look at your child and wonder 'what if the worst happens to my child, what if this actually happens.' It can be triggered by a sad news report involving a child or something like a medical uncertainty and scare. The moment when you stop and imagine the unimaginable can also be triggered by nothing at all, just fear and imagination. It’s called having kids.

In the hospital I soaked up her blue eyes and occasional smile as I couldn’t hide from my thoughts: what I would life be if she weren’t here? When you're in the hospital and bone scans and MRI's start being mentioned you can't help but ask yourself 'what if it is something really bad... and in our future we have to watch her die?' I then thought of other parents who were in the very same hospital just floors away from me who were actually doing just that with their own kids. It's so unfair when kids are hurt. It's a fear and terror like no other I could truly imagine, and of course I have had and probably will continue to have those thoughts and moments with each and every one of my kids. Several years ago I had to stop reading a book where a child was abducted and killed because it was too disgusting and horrible for me to even read in fiction. Even worse the blue eyed child in the story reminded me so much of Penelope that I sobbed and sobbed before finally putting the book down forever without finishing it. I'm a total basket case about things like that and totally avoid it in any form real or not.

No matter how stressful things are day to day I feel we live with a lot of gratitude, I try to pass on that thankful spirit to my kids as we really strive to see the bright side. I feel like the last few months have been really trying and stressful but I'm so thankful our family works together to make the best of it all. I hope the children learn to deal with life as it comes and to keep trying and remembering that this too shall pass. Ricky and I smile and laugh through tough times, we break up a lot of kid fights and live through a lot of toddler meltdowns, we wade through work, home repairs, chores and money problems. We sigh a lot and we hold our head from the stress, we tell each other it's going to be okay... and we have each other. We all have each other. I really try not to get too caught up in the stress because as long as we all have each other things are good.  

Penelope before she turned 6

 No one ever says 'I wish I hadn't spent so much time with my kids'
There are many things that I'll never regret that are time consuming and self-sacrificing. Co-sleeping is one of those things. Beyond just typical co-sleeping though we also lay with whatever child, at whatever age, for however long, to get them to sleep. For example Penelope is six years old and I still lay with her every night to get her to sleep. Usually we let her fall asleep in our cozy bed. Sometimes this is really time consuming, sometimes I don't want to, sometimes I think it's ridiculous because I need to get something done and she needs me at bedtime. Most of the time, however, I find it calming, soothing, bonding, quiet time. Someday she won't be my little girl, she'll be big. She won't cuddle or need me as often, and one day I'll never lay with her at bedtime again.  Sometimes we are tired and heads hit pillows and eyes close quickly; more often though she winds down by telling me about some thoughts, fears or dreams. Sometimes she tells me about something that happened that day and I get to really hear her speak and I often find myself loving her excitement and voice. It's usually during bedtime that I get to find out even more about who she is and how she feels about things. I get to hear her imagination churn on about things without being distracted by daytime sounds or other kids. She tells me about interactions with her siblings, too. Once she repeatedly reminded me to talk to Layla about something that hurt her feelings. We kept forgetting during the next day to talk to Layla, but at night she'd remember and talk about it with me. She tells me sweet things too. She'll tell me she likes that I am spending more time with her during the day (I cut out internet time and deleted my Facebook two months ago). That touched me so much that she told me that! Tonight she told me that she couldn't wait until she could run again (she's on limited movement for illness). I realize as I write this it's not always what she says but how she says it. She's just so sweet. She rubs my arm sometimes while she falls asleep. I think about how safe and warm she must feel. I think about how I slow down and take the time to enjoy my kids -not just my babies- and I so enjoy our quiet bedtime routine together. Ricky and I had a chuckle the other day over her telling me during quiet bedtime talks that she doesn't like it when daddy is on a business trips but kinda does like it because she gets to sleep with me all night long. :)

Update on the illness: Penelope's health continues to improve. She still has a cough, but she is on the mend. We had a couple more days of concern, swollen neck lymph node, fevers at night that went away and a little uncertainty about if we should get a chest x-ray. She is doing great and we are very confident now she's healing. We continue to keep her close to us, hydrated and on somewhat limited activity. She was skipping around the house after three days being home from the hospital. We had to keep reminding her to rest, rest, REST!!

I'm pregnant, this winter is crazy and we had to stay in the hospital with Penelope

I think I handle stress well until I have a stressful situation turn me into a basket case with a raging headache! We were anticipating a nice calm winter but we were wrong. I guess it’s time we had an off winter after so many years of super easy illness.

It seems like every time I get caught back up and on track something just kicks us down again and so I just post a couple sick related updates instead. It's been really crazy. I haven't had the time to even post a I'M PREGNANT with baby #8 post!!!!! (We are so happy! We think baby is a girl, due in June) I'm also behind on emails and responses, and I haven't yet been able to finish posts I have written about: leaving facebook, Christmas, various kid things and now I need to update about our Penelope's illness and trip to the hospital. I have many things in my drafts folder, so one day there may be a whole storm of backdated posts. This ones backdated as well.

Our life is not that rough, we are extremely blessed and lucky and happy, but the winter has brought us non-stop challenges and every time we get past one I think ‘boy glad that’s over!’ and we get back on our routine and then BAM something else happens that sends us spiraling backward again. We are so "behind" with school and it's so frustrating because we are all trying so hard! Since November we’ve dealt with nothing truly horrible but just a whole bunch of stuff: morning sickness, teething baby, weaning baby, household flu, upper respiratory illnesses, bronchitis, two broken teeth (two different occasions!), even more teething baby, croup, hospital trip /possible serious illness in Penelope, AND even more coughing. Not to mention a VERY unruly, defiant four year old, and a two year old that does stuff like dumps pencil shavings in the toaster. (lol.) Because of Sebastian's violent and cranky behavior lately we took our large TV and video game set up down and put it in storage.

THE HOSPITAL TRIP...
I could write for days about our 10 hour ER and the subsequent 14 hour hospital room stay. We just got home yesterday and my head is still throbbing from the stress.

You probably think we spent 10 hours in the ER because it was super-crazy busy. Nope. We were sent over by our family doctor and seen in the ER within 20 minutes of arriving and had attention right away.

We were sent to Children's Hospital from our family practice office because our six year old daughter Penelope couldn't walk at all due to extreme pain in the pelvic area and groin. She cried out in pain even when we carried her from room to room in the house. She couldn’t even roll over in bed, and she had a fever too. Our Family Nurse Practitioner (FNP) mentioned toxic synovitis as a possibility but we needed to have it checked since her pain seemed so severe. We needed to rule out something more serious (like bacterial infection). After10 hours in the ER we were ultimately admitted overnight after blood work, urine test, one x-ray, two ultrasounds and one CAT scan.

The x-ray showed no fractures or injury. The ultrasounds showed no fluid around the hips ruling out bacterial hip infection and bacterial synovitis. They said her bowel looked slightly inflamed and she had "a lot of stool." They then pursued an appendicitis diagnosis against my insistence that her abdomen does not hurt her anywhere. She complained of her abdomen hurting ONLY during and after deep abdomen ultrasounds and palpation from at least 10 doctors in a row. She is sensitive and says just about everything hurts her; I know her abdomen was not an issue, she just didn't like having it touched. She was in so much pain as we moved her around that she was given a small amount of morphine. We allowed a CAT scan to rule out other abdominal issues anyway, including appendicitis, because we know how serious that could be and they would do a scan of her hips as well. We just knew something was going on in her pelvic/pubic region! Afterwards they didn't entirely rule out appendicitis but it didn't appear to be the issue. They started talking surgery on her bowel or appendix anyway. When I questioned them about possibly taking out a healthy appendix I was told, "Well, if there is one healthy organ you could have removed but not need it removed the appendix is the one you'd want it to be." I was so appalled!  Were they just suggesting that accidentally removing an organ would be okay as long as it was one that doesn’t seem to do anything much??? Who pays for that? What about poor Penelope and the risks of surgery? Furthermore, I do not believe the appendix or anything about the human body to be useless! See for yourself.

Then surgeons meet with us to poke her more and talk to us. I was still so afraid something serious might be wrong that I didn’t come unglued and irate, but I should have done this. This is one of the best hospitals in the nation, I trusted them way too much. Lesson learned. I should have never let my guard down.

She continued to hold her pubic bone and groin area in pain every time she coughed or moved and it went largely ignored. I constantly pulled up her hospital gown in front of doctors and over her underwear I pointed to her pubic bone and said, “It hurts her HERE THE MOST.” They said they had no idea what was wrong with her and because of her pain we should stay the night. We were told she was constipated because of the stool they saw on the CAT scan, which we felt was also wrong. She hadn’t been up and around much and she was in pain and frightened at the hospital. Pooping probably wasn’t on her body’s list of to-do items. Sheesh. 

I have an Orthopedic Surgeon family member who lives out of state and once he caught wind of what was going on he said Penelope's pain is exactly what he has been seeing a lot of this winter: Toxic Synovitis. He described that parents have been carrying their kids into his clinic because they cannot walk and they have had a flu or illness recently which is now accompanied by severe debilitating hip, groin and pelvic pain. Fluid does not have to be present and that's all the Dr's were looking for, but they were ignoring all of her other symptoms!

We were given a hospital room finally at 9:30pm and three more doctors (two actual doctors and one resident) examined her until 11pm. I finally kicked them out. They wanted to give her a nose swab test at 11pm while she lay exhausted and sleeping; as one Dr. continued to poke at her while she slept she moaned uncomfortably --I told him absolutely no more!!! Get out! Thank goodness I had just experienced a nose swab for the first time back in November with the flu or I wouldn’t have known what it was really. It’s totally deep, annoying and painful! Why would they not let a child rest after 12 hours of examinations and tests!?  I felt like if I let them do that to her I’d be completely betraying her. It was not needed at that moment and she was sleeping after hardly any sleep the night before. My poor baby girl. 

During the night at the hospital she made a lot of improvement and began rolling over in bed without pain! Further into the night she also sat up without pain, and finally she could walk to the bathroom! She still moved very slowly but it was finally without crying out in pain. She said she was just a little sore.

During the night when she woke up they gave her Miralax in a large cup of lemonade that she did not drink much of. She woke up later and made a bowel movement. She did NOT have a full "1x dosage" as it says on her paperwork and we do not think it helped her make a bowel movement. The next morning she made a bowel movement on her own without the aid of anything and then again on her own today.  Not constipated. 

I began to reflect more on what had happened to her (all the tests and them not listening to us) and looked further into her symptoms. Read about it here: http://4kidsortho.com/html/toxic_synovitis.html she had EVERY symptom EXACTLY described for Toxic Synovitis just like our family member orthopedic surgeon suggested.

In the morning I said I wanted her to be released and told them I thought she had Toxic Synovitis (viral). A doctor there agreed that it "could" be that... "Or constipation."

Children's Hospital sent us home (after sitting and waiting a full 5 hours for discharge papers) with the most disappointing care instructions:

 -Prescription of Miralax for constipation and instructions to give her Tylenol for fever.

-Follow up with our family doctor if needed.

-She can also go back to full activity/school.

I threw a hissy fit when leaving the hospital. I sorta-kinda yelled at the nurse’s station full of Dr’s and nurses. Oops. :P (don’t mess with Mama Bear!)

I asked our orthopedic surgeon family member what care instructions he gives a child for viral Toxic Synovitis and he said the following:
-Ibuprofen 3x a day for 5-7 days for inflammation and DO NOT miss a dose.
-No activity other than walking to and from bathroom and kitchen; lots of rest.
-NO RUNNING.
-No going to school for 5 days; too much activity there. (Not applicable to us but good to know.)
-If a fever over 102.6 for more than two days get her evaluated, it indicates the bacterial infection and she probably needs antibiotics.

We got home yesterday exhausted. Our house was tidy, new food was on the shelves, laundry was done and my Aunt, Grandma and children had worked hard at keeping everything nice and orderly. Thank God for awesome family and good kids. Sixteen year old Charlotte kept the laundry going nonstop (we were behind a few days –which is a lot when you have any kids let alone seven!) and she and the boys kept up all their chores up while we were away. What a relief after that horrible hospital trip and stress!

I was exhausted and wanted to stay home today but I still immediately called and had Penelope reexamined at our family practice this morning for a possible diagnosis of synovitits and to go over the disappointing ordeal resulting in hospital misdiagnosis and a very poor treatment plan for a still very sick little girl. Bless Charlotte, Sage and Ethan’s hearts for watching the kids again so I could take Penelope alone.  Sebastian and Everett can be such a handful right now but the big kids are so good about knowing we just need to get Penelope well! I love my family.

I reviewed all the information and hospital stay with our Family Practice Clinic Docs and they definitely agreed with me about the misdiagnosis and told not to give her the Miralax.  I was then asked if we received the chest x-ray they recommended to the hospital when they referred us over. We did not.  Apparently they have a concern about a sound in her right lung and are concerned about pneumonia. This is extra concerning to all of us today since Penelope’s cough gets a little worse every day and Penelope was discharged from the hospital with a fever.

So our treatment plan is now:

Synovitis:  Follow the same things my orthopedic surgeon family member suggests for his young patients with Toxic Synovitis. Watch for fever and to get Penelope an x-ray in 2 days if her cough is not improving, especially if it’s accompanied with high fever or if she just is generally unwell.

The family practice we go to is a holistic environment run by a medical doctor who has several RN’s & FNP’s staffed. They all have various extensive experience or degrees in homeopathy, naturopathic medicine, clinical nutrition, botanical medicine and more.  They listen to us, work with us, and we love them for it!

Penelope was prescribed two prescription homeopathic cough medicines and they really seem to be helping her coughing fits so far. I asked if other family members can use it and they can. Sebastian and Everett are both on it now too.  Lastly he told me to keep up with vitamin D drops and probiotics.

So, that is the long hospital ordeal. I have other things to write, so many thoughts and so many thanks I owe to family members. It needs its own post. Hopefully I can find the time. 

Lastly, we haven't even got the bill yet and I am gearing up to fight the hospital stay bill for misdiagnosis and sending us home with a sick child without a treatment plan.  If any Dr. thought it could be toxic synovitis we should have been given a treatment plan for that as well. Not just told she can go back to “full activity.” I already have an attorney. That’s how fast I roll! Don’t mess with Mama Bear, because this is what you'll get.

And now this is me with my baby girl cub over the past week. 

 And now hopefully I can get a break (haha) and some happy more frequent updates will come! Because "WE" as a family are fantastic. We are in love with our baby due in June (the kids are so excited) and after all this stress and craziness we just keep pulling ourselves up and getting reorganized!