Our Not-So-Fun Trip to the ER Today

Today sure didn't start like I thought it would!

This morning Madi woke me up just after 7 with her rhythmic vomiting that indicates a seizure is starting.  I ran her out of the room, grabbed her oxygen, woke up David, grabbed her rescue medication, started the first rescue med, and started the oxygen.  I thought she was coming out of it, but about 15 minutes later she started vomiting again.  Again she got the medication and I kept on her oxygen, and again I thought she was coming out of it but then she started staring off and doing an odd thing with her hand.  I gave her the third rescue med and called 911, which is our protocol when we get to 3 of her rescue meds.  The fire department came and she was still off, so they called the ambulance to take us in.  By the time they got here, though, she was coming through it and was resting.  I asked them to take us to Phoenix Children's Hospital, as they are equipped to help Madi and all her "extras".  One fireman was fine with that, but one told me no that I needed to go to Mendy's Place, a pediatric ER closer to us, because I had maxed out her medication.  I tried to explain that we pretty much always max out her medication, and that PCH was the only place equipped to check her shunt and do what she needed.  I explained that she was coming out of it, falling asleep, and that signals the tail end of her seizures, so I felt comfortable going the extra 10 minutes to get there.  He refused to take me to PCH, though, so off to Mendy's Place we went (I understand he needs to do what he feels is best, and I know he was just being safe.  Though I was frustrated, because I knew they wouldn't have what Madi needed, I do get it).  When we got to Mendy's place and saw the doctor, she was shocked that they wouldn't take me to PCH and told me that I need to insist next time because they really couldn't handle a child as "complex" as her. They were sweet to Madi, though, and efficient, and for that I am thankful.  They were also able to do the blood draws from her feet so she didn't feel it, which is so huge!   Mendy's place ran her blood work and her white blood cell count came out a little high.  She has had a cold, but is almost over it.  They thought it could be from that or they thought the increase in white blood cell count might be from the seizure.  Either way they weren't too worried.  Her urine and x-rays came back fine and her lungs looked and sounded good.  They were unable to do the big bang MRI, as they are not equipped to do them there, so they skipped the MRI.  They called neurology and they said they were fine with skipping the MRI since she didn't have other shunt failure symptoms, and not to transfer us, so they sent us home, yeah!!

Last night I stayed up to watch a show with David and I didn't pick up the house so when they came it was messier than I like.  I had also put a bunch of oils in my hair for a scalp treatment because my scalp was itchy and had slept like that to really moisturize it.   My hair was so greasy and gross!  I left the house without shoes and in PJs as well, since we left in a hurry.   I felt like such a mess at the hospital and was very happy Madi was doing better and I could get home and give us both a shower.  We also hadn't eaten at all that day and it was already past lunch time, and I hadn't had anything to drink either, so we were hungry and thirsty.

Once we got home I hooked up another oxygen tank since ours ran out right before we left for the hospital and realized the tubing and mask was missing.  I wasn't sure if the ambulance workers accidently took it or it had gotten thrown away.  I called preferred home care, who provides our oxygen, to see if I could get another one and they said they were unable to deliver one on the weekend.  I called the fire department, who got in touch with the ambulance drivers, and they said they had left our mask on Madi when we left the house.  Because our tank had run out of oxygen and they said they were switching to theirs, I assumed they would switch the mask too and didn't even notice that it was still our mask.  I had left the mask at the hospital when we left, so I called the hospital to see if they had it.  They had thrown it out not realizing it was ours, but did very nicely offer to give us one if we drove down, so we did.  I'm so glad it all worked out! I pray we won't need it but just in case we do, I felt so much better having it ready. I am sad, though, that it wasn't enough to do the trick this time.  Bummer!

The plus side of all of this is we got an unexpected restful afternoon at home.  Madi fell asleep once we got home and rested.  David and Conner headed to the monster trucks since they had tickets, and the girls and I just relaxed and watched movies, which was nice and something we don't do often enough!

Madi is back to her normal spunky self and I am so thankful!  She's such an amazing little girl!

Resting in my arms at the hospital...

 

Whew, what a crazy 24 hours!!

This last 24 hours has been..... crazy!  An ambulance ride, a day and a 1/2 in the ICU, and we are HOME.  Yeah!!  Here's the big "story" for those of you who have been hearing bits and pieces and are wondering exactly what happened.

Sunday morning at about 7:05 Madi woke up throwing up.  It's always hard with Madi because you never know if she's "just" sick, it's seizure activity and/or she is having shunt issues.  I took her out of the room and in to the family room, and the throwing up continued.  She was tracking my finger fine, answering questions, told me her tummy hurt, etc... but the vomiting continued.  I decided to give her an oral rescue med, just to be on the safe side, because my momma gut said this was more than just sick.  I dissolved one 0.5 tab in her cheek and just held her so I could keep a good eye on her.  It seemed like it was working as the vomiting had stopped (cyclical vomiting is our first seizure sign), but I noticed she was starting to stare off to the right.  Then the vomiting started again.  I gave her another 0.5 tab, called David at Church to tell him I probably needed him home, and just continued to hold her and keep an eye on her.  Again the vomiting subsided and she was responding slightly again, but again she started staring off and the vomiting started again.  I called David again and told him I was calling 911 and needed him home ASAP to be with the other two kids (who thank God were still sleeping!!).  I started the third tab and called 911, as that is our seizure protocol.  David got home, looked at Madi, and said "I'll start packing your hospital bag".  I told him to let the ambulance/firemen in first, as I had just heard them pull up.  Right about that time, Madi started her rhythmic jerking, meaning despite the 3 tabs of rescue med, her seizure was continuing to progress.   They came in and I started giving them the low down.  They said they were not expecting to be coming to our house, as they haven't been here for so long.  I said, "me too!".  The ambulance driver turned out to be someone we know (I went to school with him in High school, our parents are friends, and his son was in Madi's preschool class last year), which was *perfect* since I was in my nightgown and my hair was crazy ;).  They put Madi on oxygen and that helped the rhythmic jerking settle down, but she was still starting off and not responding.  They wanted to take us to Mendy's place, but I told them we would need a shunt series and needed to get to PCH.  They called PCH, and they agreed, so they loaded Madi and I in the ambulance and we were off.

At the hospital Madi was still staring off and not responding, so basically still seizing after all that time.  When she was off oxygen to get switched over, she started rhythmic jerking again, so I asked for oxygen ASAP and that helped again.  The nurse looked at her and yelled, "I need a doctor and IV team NOW".  The IV team was busy, but she said "I don't care, come anyway", so they came quickly.  That's not exactly what you want to hear, though I was glad to be well covered.  They tried to get in IV in her feet first but couldn't get it fast enough and couldn't try to mess around with it, so they just quickly put it in her hand.  They ordered a CT scan, IV medication, and an x-ray.  After the IV medication Madi finally stopped seizing and fell asleep, but then her blood pressure fell.  It wasn't crazy low, but was lower than they liked.  They were worried about it and had the respiratory team following her carefully so they could start the BPAP machine if needed.  They didn't want us to leave for the farther away CT scan machine and x-ray, as they were worried they would have to run her back, so instead x-ray came to us and we went to the close CT machine.  Madi mostly slept during the whole thing, but during the x-ray she woke up very startled looking.  She told me she was scared and she had a bad dream we were in the hospital. I told her it wasn't a dream, that she had a seizure, and we WERE in the hospital, but that I had been there the whole time watching out for her.  After that she kind of came and went, but her blood pressure also started to rise a bit, which was good.  They were still wanting to watch it closely and were also thinking they may need to do continuous EEG monitoring, so they sent us up to the ICU. 

We got all settled in the ICU and talked to the neurologist, Dr. Condie.  We went over all the test results, as well as the events of the last few days, and neither one of us could find a reason for the seizure.  Her urine is nice and clear, her blood levels looked great, she wasn't developing a fever, and she said her tummy felt fine.  He said he wanted to watch her and see if anything developed, so we planned on staying the night.  Madi was taken off of NPO (nothing by mouth) since her shunt was fine, so she was finally able to eat and drink, and she was SO happy about that.  She looked at the nurse, shook her finger at her, and said, GET ME NOODLES!  She's such a sweet and spunky little thing!  The nurse laughed and handed me a menu.  I got Madi all settled food-wise, and then we found a movie to watch.  Later in the day our friend Ian from Church came to visit, followed by my parents, grammy and papa.  My parents watched Madi and I finally got to go get food and water (it was about 3:30 by then).  Salad, coffee, and water, and I was a happy girl!!  Right before they left I ran down and bought a sandwich for later, and Madi was already asking for food again, so I ordered her food.   

The night was a pretty quiet one.  We watched TV and relaxed and Madi, who *wasn't* tired at all, fell asleep during a movie at about 9:00.  The night nurse was wonderful and didn't pester us much at all, though she did come in the room about 3 times, which woke me up.  At 3:00 am, though, one of Madi's leads had come off and her machine started beeping like mad.  I woke up but she was still sleeping, until the nurse had to fix it.  Madi woke up, the nurse started talking to her, and it was all downhill from there.  The room was pretty bright because we weren't allowed to shut the curtain all the way so that the ICU doctor team could see her monitors.  The hospital was loud.  We were right next to a staff door that kept opening and slamming shut, and Madi was just... awake.  We lay there for quite a while trying to sleep, but she wasn't able to go back to bed.  I rocked her next, hoping that would work, but about 45 minutes later, she still wasn't asleep, so we started a movie.  The nurse asked her how she was feeling and she replied, "beautiful!".  Ha!  Finally at about 6:45 am she fell asleep, but only slept about 45 minutes.  She didn't' sleep at all after that.  It was a tiring morning! 

The doctor team came by and I asked what their plan was.  They said that Dr. Condie wasn't in to see his kiddos that morning but that they had reached him by phone and he wanted to up Madi's seizure meds.  They said they wanted to send us down to the regular floor and have us stay another day.  I protested but they weren't really having it.  I figured we were stuck, because I knew Dr. Condie would send us home, but I was told he wasn't coming.  I ordered Madi food and then the nurse said she would watch Madi so I could run and grab some food.  Madi was ok with that, so I grabbed some oatmeal and a coffee to go.  When I came back Madi looked upset :(.  The nurse had to flush her IV and I guess Madi said it hurt.  When she saw me, she started crying, and my heart broke.  I felt so bad for leaving her for those few minutes, and I just held her.  After a minute she told me it didn't hurt any more.  The nurse felt terrible and was trying her best to comfort her.  After eating I started cancelling tomorrow's appointments and then Dr. Condie came by... yeah!!  I was not expecting him and was so glad!  I told him how Madi was doing and we discussed her daily seizure med dosage change.  I told him I'd prefer to go home, since she was back to her normal self, and he agreed.  He said if he kept us, she was more likely to end up getting sick (there are a lot of respiratory bugs going around) and he'd rather send us home too.  Yeah!!  I was SO thankful!  He still had to discuss it with the ICU doctors, but I was so relieved he was on board. 

We watched some more movies, did some crafts, hung out, ordered Madi more food, got a visit from a therapy dog, and waited to hear for sure if we would be discharged.  My friend Kim, who also has a sweet little girl in the PICU right now, brought me "the works" for lunch (pie, tea, a sandwich, and fruit) and I ate again as well.  Yum!  Thank you Kim!  We got news we would be sent home, but were told it would take a few hours to get discharged.  I let David and my mom know, as my mom was watching Ramya and Conner for me, and just kind of hung out.  Pretty soon the discharge orders were in and the nurse started the discharge process.  About an hour later, we were headed home!  YEAH!!

We made it home about 3:30 and then headed over to Elevate coffee shop for a coffee.  David and I were beat!  We enjoyed a coffee, headed home, and just chilled.  Our friends Matt and Kerianne made us dinner, and it was delicious!  It totally hit the spot!  Now we are getting ready to call it a night and are looking forward to a good night's sleep. 

Thank you SO much for all of the prayers, it really means the world to us!  We are so grateful for your love and support, and we are so happy to be back home again!

Madi's 2nd Seizure and 3rd Ambulance Ride

Little Miss made sure that we had a VERY exciting day today.  She woke up early throwing up and then went back to bed for a few minutes.  I handed her to David to change my shirt and put in my contacts then heard him screaming for me.  I ran in and he said he thought she was having a seizure (she was).  I held her for a few minutes and then she started responding.  She told me she barfed about 20 times and I cleaned her up with a wet napkin, but I noticed she couldn't move her right arm at all and it was just floppy.  Then she went unresponsive again.  We gave her the seizure meds we were given to stop her seizures but she didn't seem to be responding to them, so we called 911.  She fell asleep shortly after we called them.  They came and checked her out and said she looked good but they recommended we take her in (and we agreed as her right arm was still floppy and her left eye was twitching weird) so they loaded her and I onto a gurney and into the ambulance.  Once we got in the ambulance, she regained function of her left arm. 

The first thing we checked in the ER was her urine and her shunt, both of which came back fine.  They said that she would probably have a "big" MRI and another EEG, but sent the neurologist in to talk with us.  He reviewed her past EEG and said that her abnormal firings are coming from the area of the brain where her shunt enters her grey brain matter.  He said her shunt is working fine, but that any time something abnormal happens to the brain matter or enters the brain matter, it puts you at risk for seizures.  Her body sees her shunt as a foreign object, obviously, so it reacts to it.  He said that there is about a 3% chance of a child seizing from their shunt when it's not actually malfunctioning, and Madi, he believes, is part of that 3%.  So, basically, moving the shunt probably won't help, as we would just be entering a new area of brain matter.  If, at some point, we decided to do a third ventricularoscomy (don't ask me if I spelled that right!!), that would probably take away the seizures, IF it was successful.  He said that the area where the shunt was would still leave a "scar" of sorts, so it may not help, but it would most likely help. 

When I was describing what happened to the neurologist, he said he believes her seizure actually started when she started vomiting.  That would mean she had another abnormally long seizure.  He wants her on anti-seizure meds from here on out for at least a few years.  I'm a more naturally-minded momma, so the thought of more meds makes me want to cry, but so does the idea of more seizures.  He said that he's not concerned about the frequency of them, but more at the length of time they occur for.  He told me that if she continues to have long seizures then it will change that area of her brain over time.  He said the problem comes when a child has had them long-term and becomes a teenager.  They start to have difficulty controlling them and can't always stop them any more.  I asked about how often the medication helps control them, and he said it works in about 65 to 85 percent of children.  The neurologist said that he didn't feel another EEG or MRI were necessary and sent us home.  Madi said he ("the man with the spiky hair" as she called him) was her best friend, because he got her water :).  We have to go back and see him in a few weeks. 

They also checked Madi out to see if she had a stroke, but they are sure she didn't, as she didn't have any facial drooping and she regained function so quickly.  They said temporary paralysis is a side-effect of seizures sometimes.  Though it's not super common, they see it fairly often. 

The other fun was that my phone was mostly dead today when I left in the ambulance and it totally died after I called Madi's OT and told her not to come for therapy that day.  I had grabbed my phone charger, but my phone wasn't working from the hospital, so I couldn't call in or out.  I could have used the hospital phone, but Madi was hooked up to wires and didn't want out of my arms (and was asleep a lot of the time), and I couldn't reach the phone from the bed.  I texted David and asked him to call my parents, but the text didn't go through.  He didn't think to call my parents, so they didn't even know we were in the hospital! 

So that was our fun for the day!  Please keep little miss in your prayers.  She is back to her normal, spunky little self, thank God!  I am also very thankful right now for video baby monitors, and for the fact that she pretty much just still sleeps in my bed.  There are few things greater than peace of mind!