Life With Nine Kids

Friday, January 25, 2013

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.

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: 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 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!


Anonymous said...

They did the same thing to chey 3 times. The GI doctors shock their head and said that X-rays are NOT good indicators of constipation. Since she has been on muscle relaxers for her knee spasms she has not had another attack. I know it is frustrating. ER doctors are NOT good at diagnosing things. Sorry you had such a rough time.


"Prudence Baxter" said...

I want to encourage you as you prepare to battle the hospital and doctors and will be praying for you. It seems these days that doctors do not care about their patients and are willing to perform, or prescribe, risky procedures or drugs to remedy a problem they don't fully understand just so they can move on to the next patient. Our family has had our share of situations involving uncaring, hurried and less than truthful doctors. According to "Medical News Today", as many as 195,000 people die each year in the U.S. ALONE due to potentially preventable hospital errors...such as sending your dear daughter home with no diagnosis or treatment plan. I am so thankful that the Lord has given you your friend who was able to help you understand this situation for what it was, and for your family who kept it all together on the home front for you! He is ever faithful!

Mom of a bunch of great kids... said...

I was thinking about you guys BIG TIME during this whole ordeal. I'm so glad she hasn't had an attack for a long while. ((hugs)))

Anonymous said...


Your children and our children are so very lucky that they have moms like you and Michelle because without the strength to be their advocate, who knows what would happen. There have been many times that Michelle has chewed out a doctor or two because of the same type of incompetance that you sadly had to experience. Our thoughts are with you guys.

Anything you need, just say the word.