DisneyTrip - Hospital (The day we didn't plan.)

I wrote the following paragraph of  'notes' while we were still in Florida. This is obviously not my normal blogging style but all things considered, I think it best to post what I was actually thinking/feeling immediately after the events.

Got up around 9am. Paying bills on the computer while sitting in bed, checked on Addie in her pack n play (right next to our bed), covered her up and she had her paci in her mouth, sleeping soundly. A few minutes later we heard her snubbing and thought she had a bit of a stuffy nose from the cold air, took at least 5mins before I decided I would take a bath. Walked by Addie’s pack and play and she was convulsing. I told Adam she was having a seizure and to call 911. I picked her up and put her on the bed, took off her drool and sweat soaked night gown and laid her on her side. Swiped my finger in her mouth to make sure her airway was clear. Adam handed me the phone to talk to the 911 operator so I could tell him what I was seeing. Thankfully I had talked to our pedi before hand about what to do if/when she ever had a seizure, plus had read countless tales of other hydro kids seizure experiences, so I knew what to describe. She still had color so we didn't have to do cpr, both her arms and legs were twitching but worse on the right side. Her eyes were open but she couldn’t focus. I handed the phone back to Adam to stay on the line with 911 while I got dressed. I knew I would be going with her to the hospital. We didn't even discuss who would go. Threw on the clothes I had laid out the night before, grabbed her medical binder and my cell and cell charger and was ready to go w the ambulance.  We tried to talk to her in case she could hear us, and prayed over her. I went to the door and waited for the emts. A security guy and a housekeeping manager were walking up the hall to see if there was anything they could do. I told them she was seizing and the security guy came in and saw her seizing on the bed still. They said the emts were almost there… Addie stopped convulsing on her own before the emts got there but was still unresponsive… postictal is the term I think. She wouldn’t turn to her name, her right side of her body was completely limp – she couldn't move it and she was still drooling. When the emts got there, they looked her over and said load her up. They didn’t have to offer any support in the room which was good, and since she had stopped seizing they didn’t have to give her meds. I kissed Adam on the cheek, told the boys as I walked past them still in bed in the murphy bed to pray for their sister and I chased the stretcher down the hallway. We went by the pool, through the Landscapes of Flavor food court. People were scattering everywhere to get out of our way as it was towards the end of breakfast and beginning of lunch. A man I have never seen before stopped and made a sign of the cross, I thanked him as I ran after the stretcher through the gift shop and out the doors to the ambulance waiting. We loaded up, I climbed in the back and we were off, sirens blazing. They were discussing what hospital to take her to and I requested Children's if she was stable enough to go. They got the pulse ox on her and it was 89-90 and rising. She was still unresponsive but the emt felt she was stable enough to go to Children's 25 miles away. They checked her blood sugar and it was high ish but not astronomically high (145). Her vitals were good. We arrived at the er and she was transferred to the regular bed and they gave her .5 ml of Ativan…. and started seizing 'again'. I don’t know that she ever actually stopped per se but the second seizure was a different type- it went back to or became a partial instead of a generalized seizure. She was lip smacking and bubbles were coming out of her mouth and her right side was hypertonic so they gave her another .5 ml of Ativan. She passed out but was running a fairly high heart rate. They watched her heart rate fairly closely. It was in the 180s. A quick post to some of my hydro friends and I found out that that can be a normal post seizure occurrence .. thankfully they were right and Addie's heart rate started coming back down again. She slept/was knocked out for 4 hrs at least. 

Writing this now - This picture was taken right after the second dose of Ativan. They think she had about two hours of seizure activity all together. 

They wheeled us away for a CT and for a shunt series X-ray. The ER attending doc obviously hadn't seen many scans like Addie's. I was standing in the little booth by the cat scan machine when her scan came up. Before the ER doc could stop himself, he blurted out "Damn. She doesn't have a lot of brain in there." I laughed and said actually that looks great compared to when she was born. I knew from looking at her CT that her scans were normal so we were pretty sure this wasn't shunt related. Her x-ray series came back normal as well. Our working theory was dehydration combined with heat and humidity and topped off with lack of sleep. She had not been napping like she does at home and definitely not getting 12 hrs of sleep at night. For 3 nights in a row.  We had pushed too hard... and she had been such a trooper. But it was just too much for her little body. 

After they wheeled us back into the ER room, they just left us there. They had her hooked up to monitors, obviously to monitor her from afar, and about 4 med students came around to hear her story. Adam and I had been texting back and forth all day. I had been on Facebook chatting with friends and in support groups. I knew I would need that cell charger! To everyone that helped me pass the time that day, answered questions or offered up prayers for Addison, thank you all so much!! 

After a few hours,  she started trying to roll over to her belly to sleep, and that's when I cried. It was the first "Addie" like behavior I had seen since her I found her seizing. 

Starting to come around by about 4pm. The neurosurgeon on call had been a resident of Dr. George's, ironically enough. He suggested doing a shunt tap to check for infection or pressure and I politely declined. I did not want to introduce any foreign bacteria to her body for a shunt that was over a year old. He agreed but gave her two hours to start coming around. Thankfully, she did about an hour or so later. We were told at this point that she would be admitted for observation. I called Adam and asked him to join me. We had decided that he should stay back and help with the boys until we knew more and now that we knew we were being admitted, I knew I wanted him there. Disney paid for his cab fare for him to join me. He arrived around 5pm. The boys stayed back at the hotel with mom and Melissa (so thankful they were there with us) and had a great night of swimming and arcade game playing and ordering off the adult menu at the food court. There were two packages of toys given to them by Disney workers, one from the gift shop and one from the arcade prize store. Every Disney employee they ran into that night asked how the baby was. The same housekeeping manager that had come by while she was seizing, called the room twice to check on her. 

We were finally checked into a room around 7pm. It was the tiniest room I've ever seen in any hospital. Adam and I had one twin size fold down cot to sleep on. HA! And Addie was drugged but awake. She was a flirt! Babbling to her transport tech and making googly eyes. She took a body of pedialyte and passed out shortly after we got her in her crib. She was exhausted! She slept straight through the night, with one exception at 2am. Adam and I watched tv, caught everyone up on the events of the day and turned in relatively early. We slept head to feet opposite each other. We made it work! 

The lobby of the hospital is even Disney themed!

Bright and early the next morning, the EEG tech came around and did Addie's EEG. Because she had never had one before we didn't know if the results were her normal or because of the seizure. The good news was that she was not currently showing any seizure activity. The not so good news (although I was prepared for it) was that her left side was abnormal and showed slow waves. The neurologist finally made rounds around noon and we were free to go. He agreed that it was most likely a perfect storm of circumstances but that we needed to follow up with our neurologist at home. Thankfully, I had already set us up with one back in August - just in case. We were sent home with a Diastat (a seizure rescue med used for any seizure that lasts for more than 3-5 mins. Disclaimer(again): I'm not a doctor!!! Just a hydro mom sharing her experiences!) prescription that we had to fill downstairs at the hospital pharmacy (which took FOREVER) and then we loaded up in a cab complete with car seat and made the long, surreal drive back to the happiest place on Earth.

A traditional shot that many Walt Disney lovers take is of the sign as you first drive onto property. It's the land mark that announces you are THERE! Never has that sign been more welcome to my eyes! I was so relieved to be going back to our hotel with our daughter, who was seemingly no worse for the wear. I said a prayer of thanksgiving as I held her hand and snapped this picture through the windshield. 

Addie at dinner that night, still a little punch drunk, but happy as can be. Thank you Lord! 

Addie's New PT Clinic

After Addison started walking, I talked to her ECI PT and asked her what was next as far as physical therapy goes. She said we would work on stairs, and different surfaces, plus ramps and inclines etc. All things we don't have in our house. Well, I called and talked to our insurance provider and found out that we don't have a limit on the number of PT sessions we get a year and since we have more than met our deductible and max out of pocket for the year, we can switch over to private therapy and not paying anything out of pocket for the rest of the year.


And now that Jackson is starting pre-k I felt like it was more doable to have Addison going somewhere for therapy instead of home based appointments. Siblings aren't allowed back into the therapy rooms at the clinic and I couldn't have left Jack in the waiting room by himself. So the timing of him starting pre-k just worked!

It was a bit sad to tell Miss Anna bye! I was so thankful that we stayed with ECI long enough for Anna to see Addie take her first steps and to start walking around the house. I think that is huge and we will forever be grateful to Miss Anna for all her help and hard work over the last year! Thankfully she understood why we felt clinic PT would be beneficial at this time!

We went for an eval on August 28 and met an amazing PT that we both loved! She noticed so many things about Addison that I hadn't and had never been told by therapists or doctors before. Addie doesn't weight bear on her left arm unless in a four point crawl. She will not rotate her trunk, especially not to the left. When she gets up from the floor to sitting or crawling she always goes to the right. So we have a lot of things to work on as well as continuing to work on her walking and gait. She does have a limp and hyper extends her left leg, though I'm happy to say after a month of walking she no longer locks her knee.

Sidenote: She just grew into a pair of Weesqueak shoes that were handed down by my cousin's little girl and she loves them. She squeaks all around the house and will stand in place stomping her feet to make them squeak. It is the CUTEST thing I've seen in a long time. So I have a feeling she'll be getting some more Weesqueak shoes to supplement her TOMS shoe supply.

Addie went to her first clinic PT appointment on the 6th of September and I let her go back by herself. She tends to come to me to be rescued, mainly during PT because it's more 'work' than her other therapies. I felt like she would do better without me back with her. Well, halfway through her appointment they came to get me becase she was bawling - total meltdown. I think it was a combination of how tired she was ... her nap schedule was all messed up with Gray starting to school one week and then Jack starting the next week. It was a big adjustment to all our schedules. I also think she noticed I wasn't there. So part of me felt bad for the therapist and part of me celebrated that she has stranger awareness and attachment to me!

We went back on the 13th and she did much better. Thanks to my mom, Addie has a new sound machine in her room. She has been sleeping with a sleep sheep and it only has a 45 min timer. So now she has white noise throughout the night and into the morning which is especially important with the boys up getting ready for school walking right by her door. She slept much later this Thursday than the last week and I think that alone helped the most. But I also went back with her and we let her warm up slowly and go from there. She did awesome! She swung in the tire like swing, working on her balance and core strength, and then did some trunk rotation work on a ball, then went up stairs and worked on the trampoline. With the exception of the ball, all things we would have had a hard time doing at home! So we are very excited to see what comes from her PT change!!




Addie working out in the tire swing! She loved it!



Look who's walking!!!

Addie all the sudden took off this past weekend. Since her first steps, she's taken a few more steps, always 2 steps, always during PT and then she was done with it. But on Thursday August 9th, she took several steps, more than once for her developmental therapist. I think I counted 7 different times, 2-3 steps each. She did it again on Friday for her OT. On Saturday, we were able to get two steps on film, so it was becoming more of a sure thing that we could get her to walk a few steps. Then on Sunday, the 12th, she walked from the loveseat to the opposite end of the rug. I counted 12 steps. I cried. Sat on the couch with tears streaming down my face. I have always gotten excited at my kids' firsts. But this was something more. Something beyond a milestone. It was amazing! A walking miracle in our house!

Addison has since decided that walking is kinda cool. I'll catch her walking behind the couch when no one is watching so she's no longer doing it for us to clap for her. She's figured out that she likes to move that way. Very similar to how she started crawling on all fours v. commando crawling. I still am trying to get it on video... but I did get a picture of her walking down the hall, like it ain't no thang!!

Her PT arrived on Thursday after this was taken and she nearly cried. We are watching her left leg for weakness. She is locking her left knee some to compensate for the weakness. We may be looking at a brace in the future but for now we are letting her go and watching in awe and wonder! Thank you LORD!