Luckily our check in was for 9:30am this time and not 6:00am like last time. Aili was in a great mood the whole morning considering she couldn't eat anything. We didn't have to wait very long in the same day surgery waiting room before they took us back. Aili can't be fooled anymore. She gets ticked as soon as you lay her down to get her height/length.
We came prepared with bubbles that kept her okay happy for a while. Then they came in to do an IV. WE HATE IVS! Last time they were able to just put the IV in after she was asleep in the cath lab but I guess they had to run labs before they started the surgery this time and it takes 40 mins. So they didn't want her to be out longer than she had to be...so we agreed, reluctantly.
Nightmare....that is what it is like every time they put an IV in her. We had ipads going, songs being sung, hands being held. Nothing helps when you have to pin your precious little baby down for people to poke a needle into. I hate it so much, I just want to break down and cry with her, but I try to be strong. LUCKILY they got it in the fist poke! Pretty sure that was a first. Then we headed to the Pre-Op waiting room with Aili in her cute little hospital gown, pants and socks. I have some serious issues with germs...especially with Aili, but I let her play with the toys in there. I figure the are pretty good keeping them pretty clean since it is a surgery waiting room...lets hope!
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| Obsessed with this picture! She loved being pushed around in this! |
The anesthesiologist then came and talked to us and then took as down to the cath lab. He was a different one than last time, but he was really nice, I liked him. And he was a BYU fan...he wore a BYU lanyard, pretty brave in Ute territory. Since she had an IV in already they didn't give her gas to put her to sleep first, they just put the medicine right into the IV. They let me hold her again til she was asleep. It was way different this time. The gas is kind of slow, going into the IV it knocks them out right away. It is always hard laying her down and walking out of the room. But I really like the cath lab and all the people in there. The ladies in there are so nice and Aili likes them, they always make her smile, and I really love and trust Dr. Gray. He's awesome.
Then it was the waiting game. We got some food, then just sat and waited and waited. It was getting to 3 hours which is really long so then we started getting anxious and we didn't see her crib in the hall anymore so we actually called back to the cath lab before they paged us. They said they were just about to page us so we went right back in to talk to Dr. Gray.
We got good news, not great news, not bad news. She had some areas that narrowed back down after last time. Right above the stent they put in last time closed down so they put another stent in right about and overlapping the last one. The right side that they had ballooned last time looked pretty good. Then the did the razor ballooning on the left side. It went well. The pressures in her heart and gotten pretty high again....which we do not want! We pray that now it is all opened those will get lower and lower. PLEASE pray with us that now that that scar tissue has been cut and stretched that it will stay open and GROW! GROW, GROW, GROW! That's what we need. This is a really critical time when they are small to get those arteries to grow! We would really appreciate the prayers for that and for the pressures to lower with the opening and growth.
They said Aili did great through it all, so we headed up to the ICU to see our sweet bug. She was a lot more calm and tired after this one than the last one. Last time we just had to hold her for her not to cry. She just stayed in her crib and slept this one off really well! They have to lay flat/keep their leg straight for 6 hours after the cath, so that was really good that she slept.
We were actually in the same room that we were in last time. Luckily they had a little couch that turned into a bed this time in there and not just a recliner to sleep on. It's still impossible to sleep in the hospital but this way my back didn't hurt so bad. Aili slept pretty well through the night. I nursed her a few times and she went back to sleep. Her oxygen levels dropped a few times so they just continued to watch that.
Scariest Morning EVER!
We woke up bright and early (6:30) in the morning. Aili was doing really well, she was happy ate some food. Chris came at 8:00. ( He got there at 7:30 but they would let him in til 8.) We were basically just waiting to hear from the doctors. We were pretty sure that we were going to be discharged, and so was the nurse.
A couple of the doctors came in. Everything looked good with Aili. They took the dressing off of the cath area. Then around 9:30 Dr. Gray came in. He said everything looked great. They weren't too concerned about her oxygen levels dropping in the night, because it didn't do it in the morning. Probably just some stress from the cath. We chatted a little then he left. At about the same time one of the ICU docs handed over the discharge papers to the nurse.
During this time Aili was getting really fussy. She was really tired, wanted to nurse, and just kind of over the whole being in the hospital...don't blame her. I was holding her in my lap the whole time docs were talking to us. After they left I decided with the nurse that we would take Aili's IV out and unhook her from some things before I fed her to go home. I stood up and went to sit her down in the crib, and she lost it, completely lost it. She started crying really hard, to the point of not breathing. That has happened before, not unusual. We just blow in her face, she takes a big breath and we calm her down. Not this time....
She kept holding her breath....me: "Aili breath, breath Aili!" as a was blowing in her face. Every milisecond that ticked on I could feel the fear building in my chest. "Breath Aili, breath!" Still not breathing, not breathing. She was turning completely purple. Then....she went went limp in my hands. In my complete panic I was screaming something...I'm not sure what. Something like, "Something really wrong!" I layed her down and the nurse immediately put the oxygen mask over her nose and mouth. I lost it, I couldn't watch. I didn't know what was happening, and left the room. I left the room thinking they were going to have to perform CPR on my baby.
I walked out of the room and into the bathroom, just shaking, crying, "What is going on?!" I hear Chris yell into the hall, "We need help now!" I left the bathroom. Glanced in the room to see everyone around Aili, and walked away down the hall. I was so scared....terrified. What was happening? As I sat with my hood on, face buried in my sweatshirt crying one of the doctors came out, told me she was breathing and that she had a little seizure. What?! I started crying harder. The mom in the room next to us came over and gave me a big hug as I cried telling me that she was okay now.
I still leaned against the wall in the hall and cried. Dr. Gray came back up. They had paged him just a few minutes after he left that she has a seizure. I'm so glad he is a nice, normal, compassionate, human being along with being a genius doctor (some are not). He came up behind me, but his arm around me and said, "Is it over?" I told him I didn't know. He went over to the room. Then told me to come into the room because it was over.
Aili was just laying there very still, sleeping now. It all a little of a blur, but they talked about what happened. How she held her breath, passed out then went into a seizure. That kind of just wiped her out so she was very tired now. They had already ordered a CT scan to be done right away and and EEG. They called the neurologists to look at everything and come talk to us. Dr. Gray didn't seem to concerned about it, but said that he would leave it up to the neurologist to take a look at everything. He was pretty sure that the cath had just lowered her seizure threshold (we all have one) so when she held her breath it brought the seizure on.
We headed down for the CT scan. Aili woke up once they moved her and strapped her into the machine. Her little eyes tired, scared, watery looking up at the rainbow and Spongebob painted on the ceiling. We stood next to her in our heavy aprons protecting us. We were still so shaken up. I think all we said to each other was, "That was so scary." I still had a hard time not crying.
We went back up to her room. And a neurologist lady came to talk to us. We gave her the whole story and immediately she calmed our fears. She said it isn't uncommon for that to happen when little kids hold there breath, that they would be a lot more worried if the seizure just came on randomly and if it was longer (it was maybe 3 mins). She hadn't even looked at the CT scan, but she was pretty confidant that it would look okay. They would be looking at evidence of a clot. She did some little test with Aili being able to perform some basic things....looking at things, standing, etc.
Aili then just sat in my lap watching some cartoons. She was really calm and doing well. Then another neurologist came in. We talked about a lot of the same things, he expounded a little, and didn't seem too concerned either. We were feeling better and better with each person we talked to. He wanted to go ahead and get the EEG and draw some blood just to check everything and make sure of everything they already thought.
I nursed quickly before the EEG, so she would be calm and happy. They came up and did the EEG sticking a bunch of probes to Ailis head, she wasn't thrilled. Then she had to lay there for 40 mins to an hour....still. Thank you Signing Time! We played Signing Time the whole time the put the probes on and the 40 mins after and she stayed perfectly still, what a good little girl!
After they took all the probes off her head the IV team came in to get some blood for them to run some test on....poor little baby girl. The first poke in the foot didn't work, but the second one in the hand did. Aili cried but did pretty well....and the whole time we were scared she would hold her breath and have a seizure again, luckily she didn't, which made me feel better, that it wouldn't happen again.
After the blood was drawn we got new discharge papers! The doctor came in and said it was our choice if we wanted to stay another night for them to watch her or go home. I said, "If you are comfortable with her going home, we are going home." He said they were perfectly comfortable with that. The hospital sucks...so stressful, we weren't staying any longer than we had to.
Aili looked kind of like a zombie baby at this point. Her hair was a disaster from the EEG and her eyes were all read and swollen from crying. We took out her IV and took of all the wires and stickies off. We got her dressed. Then she just said in her crib and shoved her face full of the treats we had. She was a hungry girl.
Then we left! About 3 hours after we were originally going to leave...didn't think that was going to happen, but thank goodness! We were so happy to be going home! We were all exhausted. I'm pretty sure I aged 10 years that morning, I can see the grey hair coming.
Aili did great the rest of the day, just napped some more. And she had been great ever since. You again never guess what she has been through. We are so glad that she was watched over and protected. She is just the toughest, bravest little girl. Amazing, simple amazing.
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