We were able to bring Harlie home from the hospital on Sunday, December 1st.
I can't remember if I mentioned it in one of my blog posts when she was in the PICU or not, but she was holding on to fluid. I noticed that her legs looked swollen. I told them at rounds so they weighed her and her weight was 69 (five pounds more than when she arrived). The doctor came and examined her and she had pitting edema in her legs. So they gave her some Lasix (a diuretic) to help her get rid of the extra fluid. Holding on to fluid is really hard on her body (especially her lungs). We went home with a script so we could give it to her if needed. We had to weigh her each morning to monitor it. She was 65 pounds on Monday and 66 on Tuesday (she was 64 at baseline). This is a girl who has needed calorie boosters her whole life to try and gain any weight at all. Also, keep in mind that she is tube fed a formula - the same amount every day. There is no cake, no ice cream, no variation in daily calories to explain any weight changes. Fast weight gain is definitely fluid and needs to be resolved as quickly as possible.
We went to see her pediatrician on Tuesday, December 3. She mentioned that Harlie's belly looked big. This was an issue in the hospital as well. Her pediatrician wanted me to take Harlie to her GI doc to rule out Ascites (another fluid issue). Keep in mind that this was Tuesday. And Tom and I were leaving the next morning to fly to New York. We were due to fly back home Friday night. So, I wouldn't be able to take her until the next week. And there was NO way this could wait that long.
So, I emailed her GI doc, brought her up to speed and asked when she could see Harlie. Tom and I left the next morning for New York. I would never do this under normal circumstances. But, I had no control of the schedule and this was a once in a lifetime opportunity. Harlie's nurses assured me that they would handle whatever came up and they told us to try and have fun and relax.
Wednesday, December 4
Mona met us at the airport in New York Wednesday morning. We shared an Uber to our hotel to get us checked in. While in the Uber, I got a call from our nursing supervisor that something happened with Harlie's Medicaid and home health nursing approval - it was denied (a paperwork mistake). Keep in mind that we were using our home health nurses 24/7. So, our nursing agency had to file an emergency appeal. And she needed my signature to do so. We tried to handle it electronically since I had no access to a fax machine at the time.
It was too early to check in at the hotel, so we dropped off our bags and we made a plan to meet Mona and the other veterans later that afternoon. We went to grab some food and walk around a bit. We walked to Central Park and walked around a little.
Then went to a bar and got some fancy drinks. This was Tom's smoky Old Fashioned.
During this time, I was emailing her GI doc and her nurse at home trying to work on getting Harlie seen. Her GI doc wanted labs done, so Caylee took her for labs that afternoon. We scheduled a time on Thursday for her to see her GI doc for x-rays/ultrasound. I was definitely worried. Harlie's weight that morning was 68 pounds - up two pounds from the day before, and up four pounds from her baseline (this was while she was on Lasix!). I was also in contact with Harlie's cardiac social worker at CNMC (Children's National Medical Center in DC). The simplest explanation is that when a patient has a Fontan physiology (the way Harlie's heart works) and they have a hard time processing fluid - that is a very bad sign (and could mean her Fontan was failing, which is horrible).
So, just for a minute, I want to explain something. We know her Fontan will fail one day. Her heart, the way it is today, is not cut out to last her till she's old and gray. We know hard times are head of us when it comes to her heart. So, when this fluid issue came up... well, I can't really explain it. I guess since we know what we know, I expected to be able to handle it differently - better, even. I was shocked at how incredibly fearful I was. It was hard to breathe. I had to make a concerted effort to take a deep breath. I guess this proves that there are some things you just can't prepare for. I wanted to rush back to the airport, jump on the first plane to Richmond and go home to get her wherever she needed to be to help her immediately. To be in New York and not be able to have my eyes on her, was so incredibly difficult. I didn't even want to tell Tom. But, as I was sitting there, trying to look fine, I realized I couldn't be this scared without him. So, I told him. He is so good and we got through the moment together. There was nothing we could do at the time. We really didn't have that much information yet. She was scheduled to see the GI doc the next day at noon. We needed to wait and see how that went and see what her labs showed. We couldn't do anything until all that happened. So, flying back that night wouldn't have changed a thing (other than my comfort).
We had to shake it off and go back to the hotel to check in and shower and get ready to head to Rockefeller Center. We had to meet all the others at 4:30 in our hotel lobby. On our way back, we turned the corner and saw this...
We looked at each other and thought, how crazy, we need some hope right now! And for those of you that know me best, you know how I feel about hope. Hope is a funny thing. Sometimes it just comes out of nowhere.
Then we went into the the Tonight Show with Jimmy Fallon entrance and we waited for us to be checked in there.
We went through a security process, which took a while and then we were escorted to a conference room upstairs. We had to wait there for several hours until it was time to go outside.
I guess it was close to 8pm when we were escorted downstairs. Again, we had to go through security and that was a little bit of an issue because one of the guards told our escort "no." She was stunned and said, "but they have a spot on TV, they have to be there." He didn't seem to care. So, she had to go and get someone else who flashed his badge at the guy and got us through.
The stage for the show was right under the tree and the crowd that had some sort of "in" was standing on the ice rink (they put carpet down for us to stand on). We were so close it was crazy.
We stood and watched the show for probably an hour or so until a guy came and got us and moved us to the front row, in front of a camera. Like right in front of a camera.
There were 10 of us in the spot on TV. I can't remember if I explained it or not, but it was a veteran thing. Toyota aired a commercial about soldiers coming home and then after that, they went to Hoda Kotb who said something like, Thank you to Toyota for supporting our veterans. Then Al Roker said something like, We are so happy to have some military families with us tonight. Then they flashed to the 10 of us standing there. They wanted two families and it would have been awesome to have our kids with us. This is one of those times when my feelings are so conflicted. I'm grateful for the experience. But, I really wish our life afforded us the ability to take our kids with us whenever and where ever we wanted to.
A while after that was the countdown to the tree lighting. Seeing the tree at all during the season has been on my bucket list. I just can't believe we were there for the lighting! It was awesome and we loved it. After that we all said good-bye and Tom and I went out to find a late dinner and some drinks.
Thursday, December 5
We had a hard time sleeping that night. Harlie was very heavy on my mind. It took so much effort to try to keep my fears at bay. Tom let me be lazy and he ran to get some coffee and bagels (a true splurge food in our book). Then we showered and headed to One World Trade Center and the 9/11 Memorial. Tom really wanted to get that in, just in case we had to leave later that day.
They have the names of all those that died around the perimeter of the memorial pools. Each year, on their birthday, they put a rose on that person's name. I found this really moving. December 5th is Catherine Lisa Loguidice's birthday. She was 30 years old.
I was already feeling pretty weak as far as my emotions went, so we elected not to go into the 9/11 museum. I really didn't think I could handle it. I found the rose on Catherine's name hard enough. So, we went up the Freedom Tower to the observatory. The elevator ride up is very cool. It goes up 102 stories in 47 seconds.
The view from up there is amazing. And we lucked out with a clear day. We took our time walking around and looking at every possible view. After a while, we decided we were done and it was time to head back down. Right as we were passing the bar/restaurant area, they opened it. Tom looked at me and said, "Bloody Mary?" Um, yes! So, we splurged again with a drink with that amazing view - something we never get to do. Thank you to our dear friends for the Visa gift card - because those expensive drinks were on you!
Then, right before noon, while we were enjoying our drinks, Brandy (Harlie's nurse) called me. She had already seen her GI doc (for a noon appointment!) and she said she was FINE!!! Her labs looked good and she did NOT have Ascites and all signs indicated her Fontan wasn't failing. She said her body probably just got behind and was working so hard for several weeks - so she just needed some extra help getting the fluid off for a little while.
I wanted to cry I was so incredibly relieved! I am so glad we stopped for that drink because we had something to celebrate! This was the highlight of the trip for me. Sitting and facing the windows and seeing the skyline and enjoying this downtime with Tom was really amazing. We were so grateful! Still are.
After that, we left and headed to Greenwich Village. We found a cute little barber shop and I made Tom go in and get his beard trimmed. He was being especially nice to me considering the circumstances, so I took advantage. Haha!
Then we went to a meatball restaurant.
While this isn't a great photo - doesn't he look so much better/his age with a trimmer beard?!
The food was great and the drinks were even better...
While there I got a call from the nursing supervisor. She said my electronic signature for the home health nursing appeal we tried yesterday didn't work. She said I needed to write a letter. So, I took our receipt, turned it over and wrote it on that. I took a photo of it and sent it to her, crossed my fingers, and we went on with our day.
Then we headed to High Line park. That was awesome.
After we were done there we stopped at a cute little coffee shop (not Starbucks) and got some Spanish Lattes. They were delicious.
Then we headed towards the Empire State Building. That was on my list of things I wanted to do. But, once there we learned that the tickets were like $76 a piece! So, we didn't go up.
By this time we had walked probably about 8 miles and were getting a bit tired. So, we stopped at a cute bar and had another drink - gotta stay hydrated! Haha! Then we headed back to the hotel to shower and get ready for going out.
Crazy coincidence, our friend and neighbor (there are two houses between us) was in Manhattan for work. So, we met her at a bar and hung out for a few hours before she had to head to the airport to fly back home.
After we left there, we headed back to Rockefeller Center. I wanted to see the tree one last time - while we were in a much better mood.
Then we walked around Times Square. I think we walked well over 10 miles that day. We had a late dinner and called it a night.
Friday, December 6
We got up and had bagels again. Sorry, couldn't help it. They were really good and we were in New York, after all. Don't laugh, but I wanted to see the tree one last time - during the day. Haha! Tom was such a good sport and didn't argue. Plus, I wanted to go to Macy's, too. I was trying to soak in the Christmas spirit after some hard weeks back at home. I had no idea that Macy's was 8 floors! That place is huge! And the wooden escalators! Wow! We rode them all the way down from the 8th floor. I wanted to go into FAO Schwarz, but the line to get in was insane, so we kept walking.
We walked to Hell's Kitchen and got some ramen at Ivan Ramen. Tom and I had watched Chef's Table on Netflix with him (so good, we highly recommend this episode) so clearly we wanted to go. It was delicious.
We stopped for one last drink on the way back to the hotel to get our luggage, then we headed to the airport. It was a whirlwind trip and we are so grateful we got to go and experience it. Thank you to all who made it possible, especially our dear friend, Mona!!
Thanks for reading!
Much love,
Christy xo
