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!