Happy New Year! So far, it's been a pretty good year for us and Leah. We had a little hiccup on New Years Eve, and we had to take the baby to the ER because she had a lot of congestion and was starting to have seizures and spasms again, but we found out that she had a mild UTI which could luckily be treated at home, so we were able to spend New Years at home with Leah, which was wonderful for us.
We saw her neurologist the first week of Jan and made a plan to start weaning her off some of her more sedating seizures meds like Topamax and Clobazam. It's going to be a slow wean, just removing 0.5 mg a week until we get to 25 mg twice a day on the Topamax and then the Clobazam, going down from 10 mg 3 times a day to 10 mg 2 times a day.
So far she's been doing great since coming off the meds, so we'll have to hope that the diet will continue to work as well as it has in the past. We've been able to take her out more and she hasn't had any more UTIs since new years, luckily.
This past weekend was awesome, we took her to the Junior Blind Campus for a MLK day picnic. We got there really late, so it was pretty much over, but the therapists still took as for a tour around the campus and showed us the school for the blind and it was great. Hopefully when Leah turns 3, we can take her there for pre-school. We then headed to have lunch at the mall near by and strolled around with her before going back home to meet our 3 pm nurse.
On Sunday, we got up early and headed to the California Science Center with her, to check out the Ecosystems exhibit. It was so awesome! There was a huge room that was all dark except for the ceilings which had projected videos of all the different ecosystems on earth, with lovely music and sounds effects.. When we brought her in, she had her eyes closed, but the music and sounds were so loud that they woke her up, and since she has new glasses, she was able to watch the giant screens. She was really engaged and could not take her eyes off the images, so I think she can still see something, even though the doctors say she's almost blind. We also took her around to see the aquariums and lizards, which she was also looking at intently, so overall, it was a great weekend.
The Sunday night shift however, was very different. We got a new nurse who was supposed to jhave had 15+ years of experience and we ended up with an emergency situation because of her mistakes.
Here is a copy/past from Leah's FB page, and what happened yesterday morning:
We had a scare this morning with the new nurse who was working the night shift. Leah de-sated all the way down to 9% oxygen! She called me at 6:45 am saying "shes turning blue!" and didn't do anything about it! Luckily, I ran into her room (she was already at 50% O2), started bagging her, trying to figure out why she was dropping so fast, (at this point she was around 25%) I realized there was no chest rise when I was bagging her so I looked to see her trach and the trach tube had come out completely! She was not breathing at all, for a span of about 2 minutes. I was able to quickly untie the trach ties, and try to put it back in, but it wouldn't go back in because we needed lube, so I just dipped the trach in some water and stuck it back in, then started bagging her, at which point her oxygen was at 9% and she was a blue-ish gray color. While bagging her, I called for Zev to dial 911, since she came up but kept de-satting more, so I had to suction her (a LOT of junk came out, so that means the nurse also didn't suction her properly overnight). All the while, the nurse just stood there looking at me, and rubbing Leah's arm. While bagging her, I was so angry that the stupid nurse didn't notice that her trach had been pulled out, that I kept saying "how did this happen?! her trach came out, what happened?!" she kept saying that she didn't do anything and she had no idea how it had come out, and I snapped back at her "you could have killed her!!" Which is completely true, had Zev and I not been there this morning, for whatever reason, this post would be very different. The fire department got there right when I was able to stabilize her, and we decided to take her into the ER, to make sure there was no damage, despite her being back up at 100%. Our other nurse, Desi got there right before the firefighters since it was change of shift, so she came with us to the hospital as well as the night nurse, who I had to ask to leave the room because I couldn't stand the sight of this person whose stupid mistake could have killed my child, and I really wanted to slap her. But, after doing a bunch of blood work/electrolyte levels to see if there was any CO2 poisoning in her blood, or acidosis. She was right on the borderline, which we think might be because of ketogenic diet, but nothing that shows any damage from this morning, thank G-d.
After a couple hours in the ER, we went home and Leah is stable now, but it was probably the scariest situation I've ever been through, and I keep replaying it in my head, thinking that it could have ended very differently. It didn't really hit me until we were at the ER of course, as usual. We've worked so hard to get her to this point and to have someone's inexperienced mistake ruin it all, but Leah is much more resilient than any other human being I know, and today she proved us that she still wants to be here, because event he ER docs told us that it's very hard to bring someone back from such a low oxygen saturation.
This only reinforces my argument that she needs RNs at home and not LVNs or at least LVNs who have worked in emergency unit or the hospital. So, we are going to report her and also try to see what we can do about getting her actually "skilled" nurses.
We received a lot of support in the comments of the post, and I'm glad to know that I'm not crazy and I'm not the only one who thought that this could have been avoided, had the nurse actually done the right thing.
Unfortunately, though, I know that with home care nursing, you can never be sure how someone will react, or how prepared they are to handle these kinds of situations until they actually happen. Honestly, it scares me to death to know that I could lose Leah because of someone's inexperience. And I agree with everyone who suggested we have a list of questions that we grill the nurses on when they come in for the first time. We might also start just staying up in shift the nights that we have new nurses, just in case something happens, we will be there to take over if we need to or help out. We also are going to start checking the new nurses references, to ensure that they've dealt with emergency situations and know what to do under pressure.
On a non-Leah related topic, I got a call from one of my aunts yesterday from Peru to let me know that my Grandpa is going to have hip surgery. He's 81 and never really took very good care of himself so he has other issues with his kidneys and artery blockages as well. The operation is very risky and there is only a smaller percentage he'll will make it through and even if he does, there is only a small percentage that he'll be able to recover in post-op. I am traveling on Sunday to go and be with him before his surgery and spend some time with him, and also to be there while he's in surgery and hopefully recovery, just a for a week,since I need to come home before the weekend, since we still don't have a fixed schedule of nurses for Leah. This is really really sad news, since my Grandpa was the only father I ever had. My dad died 8 months before my birth in the Peruvian air force. When I lived in Peru, I lived with him for 4 years and even though he's a grumpy old Irish man from New Jersey, who likes to yell a lot, deep down he's a big teddy bear and a very loving, caring giving person. I haven't had a chance to see him since 2009, the last time I went back home, since it's so expensive to travel from LA to Lima, so it's breaking my heart to think that this may be the last time I get to see him. However, if Leah has taught be anything it's to have hope and believe that the best will come from every scenario. I have hope that he'll pull through, since he's a very stubborn man (I think Leah and I got that from him, lol) but also very strong. He's suffered a lot in his life as well, and he's always managed to get through it, but I know that he's also older now so it's more difficult for him. Either way, I need to go see him, to let him know that he needs to pull through so that he can meet Leah when she eventually gets better too, she can inspire him to recover, I hope. He never got to meet Leah, since he's too fragile to travel and so is she, but I'm going to make him a video so that he can see her and meet her electronically, and also to show him everything that I've done since I left his house, how far I've come, not only in my career, but as a person.
Anyway, I want to thank all our new followers of Leah's FB page! Your support is amazing and I feel like my family just keeps getting bigger. Zev, Leah and I have truly been blessed for having you in our lives, thinking and praying for all of us.