Trying to find a few moments between the chaos and laundry to update this. If you are following us on Facebook, then you know we've had a pretty eventful couple of weeks!
We were finally discharged from Dell on November 20th. We were so happy, but also a little sad to say goodbye to our wonderful friends there on the 3rd floor. Being discharged and coming home was scary. Everything had to work out right in order for us to make it to Pittsburgh. She had to be discharged Tuesday so that she could go to a follow-up appointment on Wednesday. Then she had to be okay and not need to be readmitted all the way through Sunday for the flight to Pittsburgh. I didn't even start packing until Sunday morning because I didn't want to get my hopes up too much that we would make it to Pitt.
While we were definitely nervous to be home, we were also super happy. We love having our two girls home at the same time. We love not having to drive to the hospital everyday. I know Neely loves being able to sleep through the night without someone checking her vitals every few hours. It feels weird changing her diaper without saving it for someone to weigh. It takes some adjustment to go back to "normal" where your morning doesn't consist of doctors rounds and your whole day doesn't revolve around the latest lab results.
|Laney's "Swing and Swide"|
|Laney and Neely, reunited|
Thanks, Aunt DiAnne for the matching PJs!
|Super attentive big sister|
We were so blessed to be home for Thanksgiving. Josh's sister (Aunt Jenny) was an absolute angel - preparing an entire Thanksgiving meal AND bringing it to our house! Laney had a great time coloring and playing with her "Other Gwamma" and Neely got lots of good (gown-protected) snuggles. There was so much good food!
In keeping with the understanding that we had a lot to be thankful for, we celebrated Thanksgiving again with my parents on Friday. My awesome mom also made and brought the entire meal to our house and we stuffed ourselves silly again. My only regret is that we couldn't eat all of the leftovers before we had to leave for Pittsburgh. So delicious!
Well, by the grace of God, we made it to Sunday without Neely getting sick. Our flight wasn't until 4PM, so we spent most of Sunday packing. Packing isn't usually a big deal, but it is when you are going to be 1,400 miles from home and can't say, "Hey Jack, I forgot the (*insert important item here*). Can you bring it on your way to work?" I tried to prepare for every scenario. Ha.
I was nervous about how it would go at the airport. I envisioned Josh being hauled off to jail if some security person tried something crazy with Neely's meds. Neely and I had to be specially screened, but it wasn't too bad. We were able to board early because of Neely's medical condition and had lots of great legroom in the first row. Since every post I write has to include a moment where I cried like a little baby, I will share with you that as soon as the plane took off, I could not help but cry happy tears. After months and months, we were finally on our way! Neely was such a good baby on the flight. She didn't cry at all and pretty much just slept. We had a short layover in Orlando, about 30 minutes long. After finding our gate and sitting down, we discovered Neely's ostomy bag was leaking. The choice was to let her fly to Pitt with this harsh bile on her skin or go for it and attempt to change the ostomy bag with the remaining 15 minutes before boarding. Papa said, "We can do this. Let's go for it." We put Neely on a little mat on top of a suitcase and laid out all of our supplies. Like a well-oiled machine, we removed the old bag, cleaned her skin, prepared her skin for the new bag, and stuck the bag on her with a few minutes to spare. Baby girl didn't cry the entire time and Josh and I both kept our composure even with the time constraint and with people trying to start a conversation. We got her dressed and it was time to board again. High five!
Neely did amazing on the second flight also and by then it was her bedtime anyway. As we taxied to the gate, Josh (as he so easily does) struck up a conversation with the other passengers and everyone told us we were going to love the Children's Hospital. Everyone was super nice and encouraging. And that was before we even left the airplane. After we got our suitcases, we noticed Neely's ostomy bag was leaking AGAIN. We quickly realized this was happening because we were using a different product and it wasn't holding (an ACE bandage is not as effective as coban ... should have asked for more of that stuff at Dell). It was pretty late and Neely did not want to be awake, so we decided to mess with it at the hotel.
We went to catch a taxi to our hotel, but the first taxi driver graciously said she would find us another taxi since she was a smoker. About 3 cabs down the line, she found one non-smoker. Even though she wasn't going to make any money off of us, she still helped load up the taxi for the other driver. Our driver was great. He was super friendly and told us lots of interesting things about the city. Did you know Pittsburgh has more bridges than Venice? Kinda funny that in the last post, my brother wrote, "Pittsburgh is the light at the end of a very long, dark tunnel (and, frankly, who has ever said that about Pittsburgh?)" In truth, Pittsburgh is literally the light at the end of a tunnel, so probably everyone says that about Pittsburgh!
(This is not our video, but wanted to share this in case you wanted the visual.)
Anyway, the driver asked us about Neely and told us she would be fine. He also said that the Children's Hospital was amazing. The people of Pittsburgh are awesome.
By the time we got to the hotel, we were starving, but too tired to do anything about it. We changed Neely's ostomy bag again and then we all passed out. The next morning, we had a decent breakfast and took advantage of the shuttle that took us to the hospital. The driver was also super nice and shared stories with us about other families who had successful transplants. We told her how nice everyone had been and she said the people of Pittsburgh are really friendly, but it is not the same outside of Pittsburgh. She wished us well and tried to help us get a dolly for our many, many suitcases. The people of Pittsburgh are awesome.
Much to Josh's dismay, I had to play Asian tourist and take a picture by the sign. Walking in the door was a major milestone for us all and I didn't want to miss it.
|This must be his "hurry up and take the picture, woman" face|
|Neely admiring her wonderful daddy in the admissions office at UPMC. Her cheeks are about to overtake her nose.|
It took us a few minutes to figure out where the admissions office was, but one of the first things that happened was that a very nice woman held the door open for us and our ridiculous amount of luggage. As Josh got us all checked in, we talked about why we were there. She was there with her daughter and said, very casually, that her daughter had a liver transplant many years ago, but was not feeling well and probably in organ rejection. Before I could even express sympathy or concern, she shrugged it off and said it happened all the time and she just needed her meds adjusted. This was our first introduction to the idea that we were among the experts and that things aren't as scary as they seem. We talked more and eventually ended up being neighbors on the 7th floor. She even helped us with our luggage on the way upstairs. The people of Pittsburgh are awesome.
As soon as we walked into our room, we were hit with this view.
|Sorry, Dell ... you can't beat this view!|
Tuesday, Neely had a barium enema, and an ultrasound of her kidney and abdomen. They also took more blood - like a LOT more. 15 cc's a day is a lot when your baby is prone to anemia! Josh and I had a pysch eval with the social worker extern, Louise, and a very long meeting with the transplant nurse Bev, who explained the entire transplant process. We learned so much from her. I think they expected us to feel overwhelmed with the information, but Josh and I felt so much more at ease after talking with Bev. To be sure, the transplant process is long and complicated and no walk in the park, but we saw pictures of patients who had gone on to live happy, "normal" lives. Here are just a few of the things we learned and continue to reflect on:
*One of the best things we have going for us is having Laney as the older sister. Neely will learn so much just from watching her and trying to keep up with her.
*Neely will be as "sick" as we allow her to be. Meaning, if we raise her in a bubble and call her a "sick kid", that is the role she will assume. She will be dependent on us all her life. We should not raise her to be any different from Laney just because she has medical issues.
*There is a point, several years past transplant, that several of the tranplanted kids start to pass away. This coincides a bit with kids hitting their teenage years and with families becoming less vigilant about follow-up appointments and anti-rejection meds. After several years of doing okay, it is easy to become complacent.
*Intestinal transplant is a relatively new procedure. Lots of kids have blazed the trail for us and each year there are new insights into how transplant affects you emotionally, socially, and physically. As these transplant kiddos get older, a whole new set of problems emerge.
*The divorce rate is high for transplant parents, but patients do a lot better with "intact" parents.
Oh, we learned so much during that presentation. I think we were allotted 2 hours, but ended up taking up about 4 hours of Bev's time. She is brilliant and has been there long enough to see transplanted kiddos grow and thrive and have babies and go to Rome and play football. It was a great meeting.
We also met GI, who said it might be okay to start oral and g-tube feedings again.
Wednesday, we attended a support group. There was only one other family there, but I have to say we learned a lot from that family - a mother and daughter. It was interesting to meet different parents, see their parenting style, and see what effect the parenting style had on the child.
We met with Diana (behavioral pediatrics) that day also, and had a great talk. I think it was meant to be more of an info-gathering conversation, but Josh and I probably talked her ears off.
|Mommy and Boo-Boosies|
|Another view from our room|
Lots of great stuff happened on Wednesday. Neely drank formula from a bottle and started her g-tube feedings. We walked her around the hospital a bit and everyone just fell in love with her (like always). Josh had, by this time, new friends all over the hospital (like always), so we had fun walking around. We even felt comfortable enough to leave Neely to the nurses' care while we went out on an actual date. Though we vowed not to talk about anything medical, we didn't make it past the soup and salad before we started discussing the day's events. We were so happy to be in Pittsburgh, so happy to meet all the brilliant staff, and so happy to get some time to ourselves. That night, we probably stayed up until midnight just talking.
At midnight, Neely was sleeping peacefully and had a normal temperature. At 2AM, Neely started to cry a little. Not a full-on cry, so I let her soothe herself off and on for about 10 minutes. Finally, I got up to check on her. She was radiating heat. The room was hot and she was swaddled, so I quickly unwrapped her and tried not to panic or wake Josh. I took her temp ... 103. The highest I've ever seen her. Josh woke up and we tried cooling her down and hoped it was nothing, but I already knew. A rectal temp confirmed her fever. They tried Tylenol and took blood cultures immediately. Neely was miserable and I started to shut-down for a few minutes before I could compose myself. Josh and I took turns holding her. She felt miserable and didn't want to be put down. We were so tired, we could barely keep our eyes open. The Tylenol did nothing for her fever. They tried IV Tylenol, but it barely made a dent. She was fussy and crying and angry and miserable. They started her on antibiotics, but those didn't seem to help either. Without knowing what the infection was, all they could do was put her on broad spectrum antibiotics and wait for the cultures. Having been through this entirely too many times, we knew they were doing all they could, but living in that moment is so unbearable. Watching your baby in pain is a gut-wrenching experience. The way she looks at us ... almost pleading for help. And we can do nothing but wait.
|temp is 103, waiting for meds to kick in|
|holding her is all we can do|
The doctors came in and I just remember them looking at her feet, saying numbers. "What's the cap refill? 4? 5?"
"It looks like she's septic, her heart rate is so high, and her blood pressure is all over the place ... it will be better for her to be in ICU"
I hate to even remember that moment. I just remember putting my head in my hands and losing it. Septic. Oh God, please don't take her from us! We were doing so well. Please, not like this. Not so far away from home and from all those who love her so much.
They nurses were so kind and encouraging. The wonderful PA, Tammy, assured us that this happens all the time and that she would be in great hands in ICU.
They quickly took us to ICU and it was organized chaos. There were at least a dozen people surrounding her and in the eye of the storm was little Neely, crying and looking at me with confusion in her eyes. Me, repeating "it's okay, baby, mommy's here" like an idiot ... what comfort is that? The main doctor there eventually asked to speak to us outside of the room. Never a good sign. He took us to another area. Never a good sign. He told us what danger she was in and said, "it could go either way". He told us to go and eat something. In a daze, we agreed and left for the cafeteria. Like a jerk, I lost it in the cafeteria, Josh looking at me, with all the strength he could muster saying, "she's going to be okay, mama". He called JD and then his boss, Eddie, who was amazingly supportive, as always. Then, he made me eat a little. Out of the corner of my eye, I see Tammy, and feel bad - hoping she didn't see me lose it. As we were leaving, she caught up to us and told us not to worry and that it happens a lot. She'll be fine. I thanked her and hugged her. Josh said she had a tear in her eye. The people of Pittsburgh are awesome.
Back in the ICU, Neely was resting for a little while. They had placed an IV in her arm and she passed out, exhausted. The infectious disease doctor came by and added a few more meds. Our ID docs at home graciously offered their contact info and assistance and we passed the info on. The lovely girls of 3N at Dell let us know they were praying and sending healing thoughts her way.
Neely had a rough night, but was well cared for by the nurse, Mark. Neely had one-on-one care, so we felt okay about leaving for the night to stay in a room at the Ronald McDonald house. It had been well over 24 hours when we finally passed out. In the morning, we learned that Neely had had a restless night. The IV Tylenol could only be given every 6 hours, but around the 4th hour, her temp would rise again and she would cry out in pain. Without Tylenol, all they could do was pack her with ice or use a cooling blanket to lower her temp. She was already cold from the fever, but even colder from being packed with ice. We couldn't even put a blanket on her. She was connected to all this "stuff", so we couldn't hold her. Because her pressures were so wacky, they didn't want to give her any real pain meds. Baby Girl just had to try to ride it out. It didn't look good. We were so afraid we were going to lose her. I just kept thinking about how it would feel on that plane ride home, without her. It was horrible.
|in ICU, resting for a few minutes|
|with Big Sisto & St. Jude|
|Papa playing Alan Jackson's Remember When to Neely over and over again. Cuz, I wasn't crying enough, I guess?|
|Exhausted Papa ... trying to fall asleep on the rail, while standing up|
|Papa trying to warm up Neely's little feet with his breath|
Most importantly, we found out that in the transplant team's weekly conference, all of the folks we met during the week decided that Neely was appropriate for listing for transplant. Neely will be listed Status 1. This is the highest priority and when we asked what that really meant, the doctor said, "If there was an organ available, we'd do her now". Due to her size, that could still mean 1-2 years, but she's on the list!!! Neely getting as sick as she did definitely factored in to what listing status they put her in. If she hadn't gotten that sick, they might have gone with a Status 2.
|feeling better and smiling again|
We were moved back to the 7th floor on Saturday. We figured we'd be in Pitt for another couple of weeks to finish out her antibiotic regimen. Except, uh-oh, we only packed for 5 days. The one time I actually pack like a guy and only include a week's worth of clothes! The hilarious and awesome family we met on our first day offered to take us to Target to buy some more clothes - especially winter clothes.
This lovely family made us laugh and kept our spirits up. The dad is a hunter, so of course Josh has a new buddy. I have a feeling these folks will be lifelong friends.
Monday morning, we were told we could be discharged the following day since we could do antibiotics at home. I was too nervous to even tell my family we might be coming home. Neely can get sick so fast ... I didn't dare hope we would make it home so soon.
We booked the first plane out ... 6:30AM. Home by 11AM. There are a lot of details I've missed because it is 3AM again, but I will add to this when I remember them. Except for the little "blip" in the middle where she almost died, Pittsburgh was everything we hoped it would be. Not just for the incredible hospital, but because of all the awesome people we met. We're likely to spend 6 months there post-transplant (if things go well) and that's not such a bad thing. There's a lot to do before we get to that point, but let's just sit still long enough to appreciate how far we've come. How tough this little girl is. How much she wants to live.
|The Lucquetes, home again!|
Now for a few minutes of sleep. Have to be up at 5 to give antibiotics! And laundry ... always with the laundry.
if anyone can help with this stuff, please let us know
*If/When we get the call that an organ has been located, we have 6 hours to get to Pittsburgh. It takes about 5 hours and 45 minutes on commercial flight, with one stop, IF everything runs on time. We would like to come up with many, many alternatives. Plan A - Plan Z. We've got some great contacts already, but more would be awesome. If you can think of anything, please shoot us an email!
*Fundraising ideas ... now that she will be listed for transplant, we can start looking into COTA funding, but does anyone have any more fundraising ideas? There is a whole world of expenses on the other side of this and we appreciate your help so much!
*Please share Neely's story with your friends and families. Donations are awesome, but extra positive thoughts and prayers help more than you'll ever know. During this last episode of sepsis, Josh and I were so comforted by your Facebook "likes" and comments. Text messages and emails helped us through the worst moments. The prayers and love delivered us, minute by minute, to a better place.