Hospital Stay #5 this summer

This is a rare post by Jess instead of Kathy. Kathy's a little less available right now and posts mostly over at Delaney's care page instead so I thought I would make sure this information got over here as well.

So Delaney is in the hospital AGAIN! This is the fifth one since May. I can't begin to tell you how exhausting it is to be doing this all the time. They're all for different things too. In May it was in St Louis for a 3 day video monitored EEG. Early June she was admitted a couple nights because she had a respiratory infection that required oxygen. In late June she had her g-tube placed so she was inpatient for a few days for that. In mid July she narrowly escaped admission for kidney infection and sepsis because I begged the doctor to give her IM antibiotics and let her go. She did, mostly I think because mom's a nurse! Admission #4 was earlier this month due to an anaphalaxis reaction to peanuts. That one was just overnight. Then that brings me to this one.

Thursday Kathy noted that Delaney just wasn't herself and that she had a peculiar odor coming from her g-tube site. We have actually noticed over the last couple weeks that it was a little gooey sometimes but we were cleaning it twice a day and she didn't appear sick at all. Although we have been having feeding issues the last month or so since her sepsis. Delaney just wasn't herself and her breath was smelling foul too so she thought she should just get her seen just in case. Thursday night she started having a low grade fever too so we knew we'd made the right decision. The appointment was Friday at 1:00 and Delaney for some reason was in a great mood! Kathy even commented to her best friend Kate that she should just take her home because she seemed so well! The doc was concerned about her site and was able to squeeze puss out of it to be cultured. He was also very concerned about it in conjunction with the feeding issues as well. So she got her blood drawn to check her blood count for infection as well as her electrolytes for dehydration. They also did a blood culture for good measure. Then he sent her to radiology to have a dye study done to make sure the g-tube was in the right place. I was working that day but was able to get my assignment covered so I could clock out and join them in radiology since he was already talking iv antibiotics and admission. I met them in radiology for the dye study and then we went back up to the clinic. The doc had some prelim. lab results by then that definitely showed that she had a staph infection in her site. That means IV antibiotics. By 4:30 pm Delaney was in a room on the 4th floor. Kathy had the kids with her so I took them back to the house and got stuff for Kathy and Delaney to spend the night. We went back up there around 6:00 with dinner and stayed about an hour and then I brought the kids home.

That first night we learned that she'd be inpatient for about 7-10 days for the antibiotics and while she was there they'd make sure GI came to see her about the feeding issues she's had. The next morning GI came and was very concerned about the motility of her intestines and also the slow stomach emptying. They increased one current med to twice a day and added another med to be given three times a day. By the end of that first full day (Saturday) the stay was being estimated at 10-14 days and might include a few more trips to radiology to check out how her digestive system works. They started her on continuous feeds at a very slow rate Saturday afternoon and decreased her IV fluid rate. She had a pretty decent day but was really low energy and really pissed about the IV in her foot. Oh one more thing they noticed Friday night and Saturday! She has funky blood pressures. Her systolic (top number) is a lot higher than her diastolic. The difference between the two is supposed to be about 30-40. Hers is about 70! Apparently this can be indicative of septic shock or a heart defect. They're continuing to monitor it but aren't doing anything about it just yet. My thought is that if it continues after several days of antibiotics she might be getting another echocardiogram. We'll see.

Today they're still increasing her continuous feed rate and decreasing her IV fluid rate. We're hoping the IV fluids are done soon! She'll meet her goal on continuous feeds of 30 ml/hr today and they want her to tolerate that for 24 hours before they start trying bolus feeds. I already know she can tolerate continuous feeds. We'll see how she does! The other development for today is that they are concerned that she might have hirshprungs. In order to find this out they'd have to do a rectal biopsy. We're hoping that she starts having some normal poos (she never has before but you know . . . ) so they don't have to do that but time will tell. They are also transferring her to GI service tomorrow from general medical service since the infection got her in but now that they see her they're realizing that she has some major GI issues. We've been concerned about her GI issues since she was a baby but no one ever listened so it sucks that it took this but I'm glad she's finally getting some attention. I just hope this doesn't turn into a bigger deal that involves weeks in the hospital and a bunch of invasive procedures!!!

Oh and to make matters worse - the big girls are sick!! Julia came down with a fever yesterday morning and Char followed suit last night. So I've been sequestering them from their sister. That's been hard. The fevers have broken for now so I'm crossing my fingers that they stay that way so they can visit their sister on Tuesday when I'm off work. Otherwise I'll be sequestered from the baby as well.

So that's what is going on for us right now! Several people have asked how they can help out and so I've swallowed my pride and come up with a few suggestions:

1. Hospital food stinks! It would be lovely if you would bring some food to Kathy. If you want to know when would be a good time please just call, email or text Kathy or I and we'll let you know!

2. Visitors are always a welcome distraction. The best time to do so would be late morning, around lunch time before 2, and evening.

3. A couple people have called the Children's Mercy gift shop and bought a little toy or balloon for Delaney to be sent to her room. She gets a big kick out of this and it lightens Kathy's spirits as well.

4. It's a financial strain to be in the hospital and I'm trying my best to keep working but that's not always possible. If you go to the top of this website you will see a yellow donate button. It directs you to pay pal. Anything at all would be helpful.

Okay that was painful! I hate asking for help but with all that's gone on it's just necessary!!! I'll do my best to keep this as updated as possible or you can always go to www.carepages.com/carepages/delaneylower and see her care page. You have to sign up to look at it but they don't send you email or anything. It's just so you can get updated (if you want to) when her page is updated.