I find it hard to believe I am on Post 4 and just 3 days into the whole ordeal. And honestly not finding much energy to do this and I guess the only reason I am doing this is for myself. For later. As fast as I am loosing memory of this time I know it will all be gone and having this is important. I think. I am pretty sure of it. Kinda. Oh and just a quick update on that last hospitalization, she is good. UTI all cleared up, still struggling with getting her to poop regularly and think it has to do with her not moving like she used to after surgery and still so it is a daily struggle. Literally. But she is much better. We were able to go up North to Greer and had a great time and we went to South Dakota to visit family and she did wonderfully there. So that’s that. OK so Friday April 10th sucked. And let me begin by saying Friday is my favorite day. Of all the 7 days, Friday is my star student, my shining star, the one day I prefer no one to mess with. I am a more of an anticipation person therefore Fridays always trumps the weekend. It’s the being excited for than the actual thing so this day being Friday was honestly just really rude. It was like someone trying to ruin Target for me. Toddler Andi Jane tried to do that. Multiple times. But we survived and Target is still my happy place. Friday has once again became my happy day.
Friday April 10th: Lily was on Bi-pap and still not awake the previous night/early morning they did some deep suctioning and got some gunk out, she would wake a little and appear to be in pain. Here was my Facebook post after morning rounds:
Day 4: still in PICU over looking this great reminder every day to have HOPE. She got some deep suctioning last night and got a lot of gunk out, she starting showing signs of waking up and pain (good and bad) and is getting pain management without too much sedation. Still sleepy but way more active today, trying to suck her finger (so Lily!) Our plans for today are blood transfusion, feeds via NG tube, EEG, PT 😁, her drain in her back already came out and we are trying to get her off bi-pap. Busy day but if all goes well tomorrow we will move up to rehab floor! Keep flooding heavens gates. He is hearing our cries and answering our prayers
It was looking like we were preparing for a good, productive day but that didn’t happen. Forgive my lack of remembering all that happened I will go by what I remember. It was a whirlwind day, things were nice and quiet, my friend Julie came by, she always makes me smile and I was glad she was there. Not before long AZ Diamondback Paul Goldschmidt and his wife came by. Not sure if you follow baseball or the Diamondbacks but he is a really big deal! Him and his wife were so sweet, he gave Lily a signed doll and posed for a photo. They didn’t stay too long because things were starting to feel a little more serious with Lily. Nurses in and out. Team IV team coming in.
Lily’s breathing was starting to be more labored. I had mentioned several times, hey let’s get that blood going, in my mind I really thought her getting a blood transfusion would wake her up, help her feel better, start breathing better, etc. Let’s get this blood! But found out her cross match had expired earlier that morning (EGGUUHFUHFDHFKDJHFKDLKJ!!!) so they had to try to draw some blood for a new one. They couldn’t get any blood. Lily was so full of fluid that all they would draw was fluid. We had so many people in the room drawing her blood, then they were listening to her and called for another X-Ray resulting in finding out her lung had totally and completely collapsed, Gone. Dr. White showed us the X-Ray – only one lung showed up.
Then flipping Adrian Gonzalez came in our room! Super star MLB player Adrian Gonzalez! It was the craziest thing. He just stood in the back with our friend Brian and hung out while this team was working with Lily. I remember the Fellow Dr. Nelly came in and got the blood we needed and things calmed down for a bit. Brian and Adrian were about to leave when Brian asked if we needed anything and I just said I need Lily to get better. Desperate and unsure of what was going to happen next we all just put our hands on Lily and prayed. I can’t remember the prayer. I just know I felt some peace. A calm before the storm looking back now. It was a surreal moment.
By then we had a room full of visitors, both Grandmas, my sister, my aunt Gloria, so when our dear friends Paul and Melinda came in with lunch and Nurse Gina said “no more people in this room!” I grabbed Andrew and asked Paul and Melinda to sit outside with us. They brought us Pho and it was good. My stomach hurt but it was Pho. I had to eat it. We sat and talked and laughed some and I think God gave us that moment to breath life in because when when we went back into her room I freaked out. The transfusion was going on and she was shivering, shaking really bad. (not from the transfusion, just sharing all that was happening at that moment) I said she must be in pain, get her meds, but they didn’t want to give her meds that would sedate her anymore so I said please just give her something, she had a fever and her breath rates were in the 60’s and heart rate was in the upper 160’s and she was working way to hard to breathe.
Also after asking multiple times if anyone thought possibly the reason she wasn’t waking up could be due to her being in some sort of status epilepticus they finally brought in an EEG machine to find out. So this guy was doing an EEG while Lily was laboring to breathe and was shivering and I thought Andrew was going to have a heart attack. Dr. Nelly came in to say she is struggling and will probably need to be intubated but we can wait for the EEG to be done. That was the longest 20 minutes ever. I knew I trusted them, but watching her struggle was excruciating! We knew she had to intubated and actually welcomed it. We couldn’t watch her any longer.
Here was the update I put on Facebook:
Unfortunately Lily had a lung collapse and required her to go back on the ventilator. Most of our big day goals went down the drain. But she did get transfusion and an EEG to check if there is any seizure activity. Praying for a better tomorrow
After the EEG we were kicked out of the room and we paced outside her door as they intubated her for the third time since Tuesday. (During surgery she was intubated, extubated after surgery, re-intubated in PICU Tuesday afternoon, extubated Thursday and then re-intubated again that Friday – 3 times) later that day/evening they put in a picc line so we wouldn’t have to deal with her being a pin cushion anymore. She had to be given a paralytic drug twice that day, once to be intubated and again to place picc line. Not helping the whole she’s still not waking up yet situation.
My last post that night:
We can breathe easier now that she is. It’s taking longer than we thought but our comfort comes from knowing he’s got her in his big hands
Probably not too surprising to know Andrew and I both refused to go home that night. I remember our nurse Megan coming in that night and seeing her sad face as she looked in on our room as she walked by and saw Lily re-intubated. That nearly broke me. I spoke with Mel on the phone and she prayed with me. God carried us through the worst day and we came out alive. Not well. But alive.
Saturday April 11th:
PTSD. That’s all I have to say. All that was on her agenda that day post rounds was rest. Heal that lung. Then they decided to do a longer video EEG because as I suspected they saw lots of seizure activity on the short 20 min EEG and wanted a better look at what was happening neurologically. My mom brought Andi and Oliver up and it was nice having a break with them. We went to the Zone and played games, did some crafts, ate in the cafeteria. Andi gave Lily some sweet love and helped bump up Lily’s super low blood pressure. Oh and our friends brought us the best tasting Pei Wei I had ever tasted. In my life.
Amongst the baseball players visiting us, we also have a good friend named Josh Havens who is in a band called The Afters and at his concerts during this time he was saying a prayer for Lily and asking his fans to be praying her her. And on Sunday morning our friend Paul lead a prayer and our entire church prayed for Lily to wake up. Guess what day Lily woke up? He answers prayers friends. He truly does.
Sunday April 12th:
Here is my FB post after rounds that day
PICU day 6 (long) update: this morning Lily woke up and for the first time looked like Lily behind those beautiful blue eyes. EEG confirmed that it was Lily finally, the last couple days she was having sub-clinical seizures (as I expected) and thank God the PICU Neuro knows CDKL5 and knew that even though she looked like a disaster going on in her brain he chose not to put her into a medically induced coma (which is often what they do for sub-clinical status seizures) he let her ride it out and this morning she woke up and her EEG was the best yet so it was “Lily normal” Amen! So that is great news! There is also some unfortunate news and that is her lung that collapsed on Friday was looking better unfortunately now looks worse today and it is due to a large amount of fluid as in she gained almost 16 lbs since pre surgery so poor girl is filled up and that is bad for a hurt lung so today’s plan is to get the fluids out, give her breathing treatments and manage pain. She has been febrile at night but cultures have all been negative and we are hoping it’s just due to lung issues but treating with antibiotics to cover it all. Tomorrows X-Ray will tell us what’s our next move regarding her lung and respiratory issues. She’s still on the vent, she has the folly out, she is getting feeds via NG tube, she hasn’t had a fever since early this morning and EEG is off her head and her hair is pretty again – of course least of our worries but it’s a small comfort for this mama. We never imagined being still in the PICU on day 6 but we are thankful for the wonderful care she is receiving and all the life rafts that are being thrown to Andrew and myself to keep on swimming. All those prayers are heard and she will be OK. I can finally comfortably say she will be OK
They did a Bronchoscopy that day and said there wasn’t too much in her lungs so that was good. Her fluids were all around her. She wasn’t still passing any tests to get extubated, still too sleepy. They were pumping her full of lasix on the day they removed her folly and that was awful. She was wetting the bed all the time and it was so hard to change her. Oh those days were so rough! We had some visitors, family mostly. The weekend was more on the quiet side.
Monday April 13th:
Our goals were to get her to pee and poop. Andrew’ brother Josh and his wife Carrie flew in and spent the day with us. Carrie was a huge help to me (poor girl) as we were trying to figure out how to change her diaper and not have pee and poo everywhere. And also not hurt Lily. Not fun. At all. But she was going and going a lot and she was loosing the fluid built up. Also that Monday Lily and Andi’s youth Pastor, Matt, came by with our friends Josh and Cara and they laid their hands on Lily and prayed with us for her.
I’ll stop here. I’m tired. Should be able to finish up the rest in the next post. Things finally started moving in the right direction. We had so many people near and dear to us visit, send gifts, send cards, our neighborhood started up a collection of gift cards for our family, people dropped off amazing take out, brought up Starbucks, called us, texted us, messaged us, people were our jam during this season. I would have told every single person not to come. Not to bring anything. Not to give us anything. So I am glad they didn’t ask me. Or they did ask me and told me to knock it off when I said no. The time was excruciating. Painful. We didn’t even have the TV turned on until the next Tuesday. If you know me you know I like my TV. If anything tells you how worried we were that would be it. No TV. The time was awful but what I remember was how held up we felt. I can’t imagine walking this journey without the people God purposefully placed in our path.
I’ll finish this up soon.
Thanks for hanging in there with me and writing this. It is not my best writing but I am OK with that. It is serving the purpose.