Hi everyone, I finally have enough time and energy to sit and write an update. Here is a re-cap of this past week. Last Wednesday we had an appointment at the UCLA outpatient EEG lab for a 4 hour long EEG (Electroencephalography)to measure what her seizure activity was and how it had changed in the last 2 months she's been on the Ketogenic diet. We woke up at 6:45 am to get ready for the visit at 8 am, she got a bath and we packed up all her meds, milk, oxygen tanks, emergency bag, etc.We actually left only 5 minutes later than I wanted to, but we were still a little late when we got there. Zev had a blood draw at another doctor in Hollywood that morning at 11 am, so he was going to go in a separate car so that he would be able to take off later. The first bit of drama that morning was that we were about 5 minutes from the house on our way, and we suddenly remembered that Zev had to take the other car which our friend had lent us while he was out of town, and he was sitting in the passenger seat. So, we drove back to the house, Zev jumped out went to get the keys to that car from the apartment. While in the car, Zev calls me and says he can't find the keys, but eventually he did and was on his way. Once Jill and I got to the EEG lab, and got settled in (we had to change her diaper because Leah peed in her car seat and was miserable the whole way), I get a call from Zev. He was right around the corner from the hospital, but the car had stopped on an incline and he had to push the car all the way up the hill (with the help of 2 female doctors who stopped to help). Something had happened where it overheated or something but it seemed like it had died, luckily a few minutes into the call, he was able to start it back up again and got there safely. Of course, the car did that a few more times throughout the day, but again it was able to turn on again once it would shut off, luckily. We hung out with Leah and took naps and watched Harry Potter and the Deathly Hallows Pt.1 and Pirates of the Caribbean 1. Everything went pretty well, we were able to document some of the spasm movements that we weren't sure had been seizures or not, so we were hopeful that this EEG would show something promising. Once we got home, Jill was getting her ready for her bath again, since every time she gets an EEG, she has that gunky stuff stuck in her hair and she wanted to wash it. I was getting ready to go to downtown LA to meet with some vendors for work at the gaming convention happening, the Electronic Entertainment Expo or E3. I'm glad I didn't leave because a few minutes later, we heard Jill start calling out her name, but in a different tone of voice than the usual. "Leah...LEAH! Come on sweetie, don't do that... LEAH!" We ran in to check in on her and I saw her laying on the playmat on the floor (about to get her bath) and her eyes were wide and her face was blue, the HR and O2 monitor started alarming as her oxygen levels were dropping fast, from 80 to 70 to 40 and kept going lower. She was non-responsive and Jill said she had been holding her breath when she was peeing, and now even with her ventilator which breathes for her, she was still turning blue. I quickly scanned the room for the ambu-bag to hand bag her lungs but remembered that I had left 2 of them in the car and hadn't unloaded either. Meanwhile Zev, and Jill began to work on bringing Leah back. I ran to the car and back and started bagging her trach. Zev was patting her gently on her cheeks "NO not like this, not now, I'm not ready for this---I'm not letting you go!" It felt like time was crawling and her sats felt like forever to come back. After a few seconds, I could see her face turning a little pinker and within a minute she was back up to 100%, but we put her back on the vent and it sounded like something was disconnected and she started de-satting again, so we changed her onto her travel vent and she stayed up at around 98-99%. Meanwhile Zev shakened was calling 911 and explaining to the operator what was going on. The fire department got there first and they helped us adjust one of the settings on her vent so that she could come back up and they told us the ambulance was on it's way. Zev greeted them at the door where he gave them Leah's basic information. They actually got there super fast, they are only about 4 blocks away from us, but still they were there in no time almost. By the time the ambulance got there, she was stable again but we were still concerned with why this happened so we asked if they could take us to UCLA instead of the closest hospital, which would have been Cedars Sinai. They agreed to take us and I held her on my lap in a gurney while I rode with Jill in the back of the ambulance. We have to give Jill a round of applause for the way she handled it calmly and efficiently. She's amazing.
Once she was in the ER, this was at around 4 pm, they did all the routine tests, like X-rays, blood tests, and they suctioned her trach secretions to see if maybe she had a trach infection again. The X-ray reading came back as pneumonia so they wanted to admit her to the PICU, but this time at the Santa Monica hospital, which is new and had beds available. We were transferred to SM in another ambulance and this time Zev drove there to meet me since he had to take Jill back to our place so she could go home. We were finally admitted to a room at around 9 pm, and the room was much nicer, though also much smaller.
She had a pretty rough night that night, I stayed with her since only 1 parent could stay due to the small size of the room and we usually take turns staying with Leah. So, neither Leah or I got much sleep that night, but she had great nurses and this PICU only has 4 beds, and it was only her and 1 more patient, so the staff was able to pay a lot of attention to her there. The next day, I had to work since i had morning meetings to go to, but luckily once that was done, I was able to just take my laptop to the hospital and work from Leah's room, which was nice, just because it's always better to be there in case anything should happen. Zev took care of her during the day.They started her on antibiotics and told us it should clear up soon and we'd have to wait and see what the cultures came back as. We asked if, now that she was admitted, she could get the broviach tube taken out and replaced with a port that would sit underneath her skin. We had been noticing that it would irritate her skin since we had to change the dressing every week and every time you expose the tubing to the air, there is a higher risk for infection, so we asked they said that at the moment it would be a voluntary surgery and not medically necessary so we could be charged for it. They also told us that they didn't want to her to go to surgery while she was sick, as it could be complicated for her. So, we dropped it, but still thought it would be a good decision to do soon, since it had been getting redder. So, Friday they told us that she seemed to be getting better and that the cultures had come back negative for infection so they were thinking on discharging her on Saturday or Sunday. Or course we told them they were crazy, who discharges on the weekend? Zev and I trusted our guts as we've learned throughout this journey to do. Especially since she needs home health nursing, and the nurses weren't going to come on the weekend to do the home health re-admit with the RN supervisor, so the social worker fought for us to stay the weekend.
We are so glad they didn't send us home on Saturday. Zev and I educated the nurses on Leah some more. Zev watched her like a hawk. That afternoon, she spiked a fever of 100.8 so they gave her some Tylenol and decided to draw more blood in case they missed something from the previous one that came back ok. She had a couple more fevers last night and today as well. They changed her broviach dressing on Thursday, but it was looking really red and they decided to change it again yesterday, just in case. So, now they are saying that there's a possibility that she does have an infection and it could be from the broviach, so they drew blood from it to see if it looked infected, but they also spoke with the infectious diseases team and they suggested removing it and replacing it with the port (duh!). See, the human body is really good at being able to defend it's own tissues from infection, but once you So, they are going to wait until she's stable of course, but once she's looking ready to go home, they'll schedule the surgeries both at the same time, one to remove the broviach and one to place the port. For now, she's been having some issues today with de-sats again, and building up too much C02 in her lungs, so they had to adjust her ventilator settings to have more breaths per minute and that seems to have helped, but she has a lot of really thick secretions, so they have to stay on top of suctioning her often. We also just found out that one of the anti-biotics was mixed with dextrose (sugar) which she can't have because of the Keto diet, so that may be a reason why she was having issues breathing again today, but they are going to be checking her blood serum ketones to see if it affected her ketone levels. She hasn't had a fever in about 5 hours, thank g-d, but we're hoping that the next few days don't throw us any more curve balls.
Here are some pics from the last week:
I wanted to thank of all the people who have been sending us messages on her Facebook page and to those who've been voting for her in the cutest baby contest.Zev has been taking less time on Facebook. It was getting to be a little hard on him since it was taking away from Leah.It's hard for him to stay away because of all the support, but, Leah comes first. And she's still fragile in need of two people around her. But, you have no idea how much we enjoy reading the comments and it really helps us get through all this craziness, just knowing there are other people out there who care about us, we feel less alone that way.
I think it's funny almost when people tell us how strong we are and how amazing parents we are, but we really don't feel that way. We feel like normal people who are doing the best they can for their baby. I think a lot of parents are strong, not just us, a lot of people have to go through what we go through, but may not have all the support that we do, and I feel lucky we have friends all over the world who we know have our backs, and are taking this journey with us. They don't have to...but they do and we love them for it. That's a lot more than what some people have, so we feel blessed that our life, while not easy, is still happy. It's full of love and hope and occasionally despair, but we've seen so many babies pass away in the PICU, that we appreciate every day we have with her, because we know that things like what happened on Wednesday could happen again and not end as well as they did. We try not to think the unthinkable, but we know it could happen and that just makes us try harder to give Leah the best care we can. I don't think we're super heroes, I think we're just people who have been given many challenges and are in the process of learning how to face them. I think every parent of a child with special needs is a super hero, and there are way more than you think. But, I am glad that Leah's story inspires people to help others, to get involved with their community in some way or to connect with emotions they may have never felt or maybe have before. You see, she's the real super hero, she's the one who makes us strong, she's the one who inspires us to keep trying, because despite all the odds against her, she refuses to let it defeat her.