As some of you know (from my Facebook posts), Madi and I are back at Phoenix Children's Hospital. We are going on our second night here, though it looks like we will be sprung tomorrow... woooo hoooo!
A view I'm thankful for, but could use a break from seeing ;)
On Wednesday we had a normal day. Madi had a little dance recital and was glowing. She did so great! Conner had Karate and was given a red stripe on his white belt, and couldn't be more excited! We didn't know he was getting one and we are so proud of him! Ramya had a good day and was enjoying watching Conner and Madi and being with family. It was a wonderful day.... until dinner time came. About half way through her dinner, Madi stopped eating and started looking a little ashen. She started throwing up and told me her stomach hurt. Madi throws up during eating fairly often, so it was nothing new to us. She and Ramya were fighting over a little plastic bird earlier that evening, and Madi was crying and upset that Ramya wouldn't give her the little bird, so I figured the crying upset her little tummy and that was why she was throwing up. She stopped throwing up, but looked like she didn't feel well. She was talking to me normally, responding normally, but just didn't look quite right. She also didn't want her brownie, so that tells you something was very wrong ;). She started throwing up again, and just kept going. At first she didn't want out of her special tomato chair (she was sitting and eating next to me), but she kept throwing up, so I took her out, sat on the floor with her (so that if she threw up, we were still on the tile), and held her. I started noticing she was spacing out and looking off to the right. I told David something didn't look right and told him to get her rescue med. He went to get it, and by the time he got back, the repetitive twitching had started. I gave her one dose, and she started to come back a bit, but still wasn't looking quite right. We called 911 to have them come evaluate her. They came and asked a bunch of questions, started assessing her, and then the seizing started again. They watched her for a bit and were trying to get an IV in (thank God they were able to get it in her little foot. I'm so thankful she doesn't feel it there so it can't hurt her!!). I asked if I should give another dose of the rescue meds and they said yes, so I gave another. She seemed to come out of it a bit, but she had never seized twice in a row before, had never seized other than coming in or out of sleep before, and she had never not responded to the first dose of rescue meds before, so we loaded up in the ambulance to bring her in and have her evaluated. On the way to the hospital, she started seizing again. They gave her verset in her IV, and shortly after, she was completely knocked out, but wasn't seizing anymore. Because we had just checked her shunt on Friday, they didn't feel the need to do xrays and a CT scan again, but neurology wanted us to stay for another EEG and observation, so they admitted us.
The only thing they can see that may have caused Wednesday nights events is that Madi's urine sample from Friday had grown e-coli. This isn't surprising at all, since Madi is cathed 4 times a day and always has some bacteria in her system and e-coli is the most common and least concerning. She also has renal reflux, which compounds everything. She is on a prophylactic antibiotic because of it as well, to try and keep UTIs away. Usually, the urologist only worries if she is showing signs of a UTI. Her urine is clear, though, she's not throwing up unless she's seizing, she's had no fevers, I haven't seen her dumping white blood cells, there is no smell to her urine, her appetite is good, and she has no symptoms of a UTI. With the culture that grew, though, the numbers were higher than they like to see, even with it being unsymptomatic. They decided to treat the bacteria/UTI because if it is causing her seizure threshold to lower, then it's absolutely worth treating. I'm praying that is what was causing her body to go haywire and that, once treated, the seizures will stop. I told the neurologist that Madi had never seized during the day like that before, and never not responded to her medication like that before, and basically he said seizures can change and it's not unusual for things like this to happen.
Madi just got her second dose of IV antibiotics. They want to observe her through tonight, but think we will be able to go home tomorrow. They are upping her doses of daily and rescue seizure meds in hopes that the higher dose will help keep the seizures away as well. She was on a very conservative dose, and still has some more room to increase if we need.
Conner and Ramya both cried when Madi and I left via ambulance again. I feel sad that I have to be away from them. Between the India trip, the extra doctor's appointments, and the trip in last Friday, it's just been a lot for them and their little hearts. When I was talking to Ramya on the phone last night, she told me she was sad and wanted me to rock her. I made sure to tell her that daddy is really good at rocking too :). Today she and Conner came down to visit. The hospital is still on RSV restrictions, so they couldn't come up, but David and I switched spots so I could spend some time with them. It seemed to help (well, that and a pack of Scooby Do fruit snacks too ;)).
I'm exhausted from about 3 hours of sleep last night, and I'm feeling a little sad and nervous about what happened on Wednesday night. I'm trying to dwell on the positive, though, so I thought I'd post some things I am thankful for.
1) I am thankful for family who comes to help out. For my mom who helped with Conner and Madi today, and then came down to the hospital to visit with us. Also, for my sister-in-law who came to visit and brought Madi a cute little green tu-tu and green and pink monster stuffed animal.
Rockin' her green tu-tu!
2) For therapy dogs...
3) For the view from our room...
4) For Child Life and their help keeping Madi entertained and happy
Playing Candy Land
5) For reasonably priced food at the hospital that tastes pretty good too. Also, of course, for the Starbucks here in the hospital!! I didn't eat anything or get coffee until about 2pm, when my mom came with my wallet, so that Starbucks was like mana from Heaven right about then :).
6) For amazing doctors that care about Madi and make sure to come check in with us, even when they don't "have to".
7) That the paramedics now know exactly where our house is and don't get lost any more ;).
8) For good friends who love us, pray for us, and even brighten our day with little gifts.
9) For facetime and Yahoo Instant Messenger, helping us feel more connected, even during our times away.
10) For my faith and hope in God, because no matter how hard things feel, I know everything will be ok. I may feel like things are out of control, but I rest assured knowing that God is always in control.
Tomorrow Ramya has a urology appointment at 1:00 at PCH for a urodynamics test and an appointment with the urologist. The hospital said they will most likely be able to get us out in time for her appointment, so the plan is for my mom to bring Ramya down and for Madi and I to go right over with her. It will be another busy day, but then we will be home again as a family, and most of Ramya's initial tests and appointments will be behind us for the time being. That is sweet music to this tired momma's ears!
