VIP

This trip to Lucile Packard Children’s Hospital was truly a great one. It was short, efficient, and best of all we were able to see most of our LPCH family. Beckham only spent one night in the hospital and we were in the new hospital where one of us can actually stay with him now! We got right into RMH this time and everything has gone overall pretty smooth.

We were hoping for a purely diagnostic cardiac cath procedure, however once they got inside it was decided that he was in need of some medical intervention. They ended up ballooning arteries on both sides of his heart due to stenosis or narrowing of the arteries. These narrowed arteries were constricting blood flow. The pressures are also still way too high for his heart to have the “complete repair” which would be closing the hole in his heart and putting in a conduit to act as a Pulmonary Artery. We’ve had some people ask us about the ballooning that was done and if it is a permanent fix for his stenosis. No, unfortunately it is only a temporary fix, however we hope that they will continue to grow on their own and that this ballooning will encourage that growth.

Dr. Hanley and the surgical team will be reviewing all of the cath images and results this week, and we will find out what the next steps are in Beckham’s surgical plan. We thought he would be getting his complete repair in April, as currently scheduled, but it’s looking like he may need multiple step surgeries before that is possible. Dr. Hanley will likely want to open him back up and do more work on his MAPCA’s to make them larger. We are under the impression that he will have two separate open heart surgeries this year, but really won’t know until we hear from Hanley.

One of the nurses I was speaking with on Friday said it perfectly: it’s like construction. You’re given an estimate of time, cost, and what to expect, but the final result is always much longer and more costly than what you were originally quoted. We have learned how true this is with Beckham’s medical care and our expectations with surgery. Every baby is so different so it’s nice to be given a general idea and hear what average cases look like, but we know that things can change and will change constantly. And I’m learning to be okay with that. We trust our team to do what is best for Beckham and ultimately that is all that matters, no matter how much time it takes or what that entails for our family.

On a happier note, Beckham is now an official VIP at LPCH. In the nurses words “he is a celebrity” there and everyone was so excited to see him! We were thrilled to have so many visitors coming in and getting to catch up with all of our amazing nurses! Although we did consider charging an entry fee to start saving for Beckham’s college fund. 😉 We were only there for a few days so we missed seeing some people but I’m sure we will get to see everyone when we come back for his next surgery.

In addition to seeing our hospital fam, we also got to catch up with one amazing family we met while we were here for B’s first two surgeries. We were roommates with their beautiful baby girl who received a heart transplant last year. I’m so happy to say that she is doing great, growing and thriving and it was so fun seeing her and catching up. This family was a huge support to us and we continually pray for their sweet girl.

Today has been a pretty relaxing day which has been nice and much needed. Our flight doesn’t leave until 9:30pm so we decided to take it easy and just enjoy the day as a family. We went outside and soaked up some vitamin D as a family. We also played some games and Mykel and I thoroughly enjoyed connect 4, which I haven’t played since I was a kid! We are hoping since we have such a late flight that B will sleep through it again. We are looking forward to coming home, snuggling our puppies and seeing our friends and family.

Until next time Stanford.

Xoxo,

Heart Mama

Pre-Cath

Today was Beckham’s very first flight! I was a little nervous for it. I mean I really don’t like flying in general, then adding in a baby, oxygen concentrator and feeding pump… but I’m happy to say that it worked out great! A past Sparrow mama gave me some great advice about packing our medications and medical supplies and how to best take advantage of TSA assistance going through security.

Our day started at 3:30am, leaving by 4 so that we could make our 6:30am flight. We were able to bypass the security line and have a TSA agent walk us through the handicap line. Then we went to a separate area for her to check our medical equipment. I also got my first pat down since Beckham can’t go through any metal detectors (because of his pacemaker). Then when it was time to board our flight we were able to pre-board and get situated before everyone else. I had time to disinfect our seats and everything! It was a full flight so we ended up having someone sit next to us but luckily it was a short flight. Beckham fell asleep shortly after boarding but before takeoff and slept almost the whole way! He woke up just a little bit before the plane began it’s descent and was as happy as can be. So overall I’d say it was a total success! Not to mention everyone loved how sweet and happy he was.

After landing in San Jose we picked up our rental car, drove to check in at RMH (we are SO grateful we got in right away this time and did not have to get a hotel) and then rushed to our day of appointments. We made it to LPCH just in time. Beckham had an echo, an EKG and we met with a few NP’s from the anesthesia team and cardiac cath lab. All in all we spent about two and a half hours at the Heart Center and were exhausted and starving by the time we were done.

Lunch today was my choice: a delicious diner called Jeffrey’s. Their bacon burgers are good but it’s their sweet potato fries that I can’t get enough of. These trips for Beckham’s medical procedures and surgeries are definitely made more bearable now that we have a handful of favorite spots to eat at or visit while we are here. After taking care of some other business and picking up some groceries, we ended the night at my favorite gelato shop. Mykel definitely spoiled me by taking me there tonight.

Beckham has been such a good boy and so happy all day even with the business. He finally passed out about 6:45pm and I think we will be following suit pretty soon here. Tomorrow will be his third cardiac cath. We check in at 9:30am for an 11:00am procedure time. Although we’ve been through these before, this one could potentially be different if they decide to do any ballooning of his MAPCA’s or put a stent in his shunt. The starting plan is for the cath to be just diagnostic, but they won’t know what work needs to be done until they get inside and test all of the pressures. We were told to expect the procedure to take anywhere from 2-4 hours. They are fantastic about keeping us updated though so that always helps relieve some anxieties. Beckham will spend one night in the CVICU, possibly more depending on how he recovers. We are excited to be in the new hospital where one of us can actually stay with him post op!

Tomorrow’s cath will provide us with some much anticipated answers as to how Beckham’s heart is doing and when his next surgery will be. It’s still scheduled for 4/27, but that date could potentially be moved sooner or later depending on these results. We ask for everyone to please keep Beckham in your thoughts and prayers tomorrow that everything will go smoothly and that B will recover well.

Xoxo,

Heart Mama

Sparrow Assembly

This past Thursday was the Sparrow Assembly at Aloha High School. And it was truly an incredible experience. This year is also the 10th anniversary of Sparrows at AHS and Beckham is their 10th sparrow!

Group shot with the other Sparrows

The assembly began with bringing in some of the past Sparrows to see how they are doing and update everyone. It was so great getting to meet them and their families; we are inspired by each of their stories and strength. Then they showed a video that Sparrow Clubs USA created all about Beckham and our story. Watching this video was so surreal and brought tears to all of our eyes as we relived our journey through it. It took a lot of work to make sure I didn’t ugly cry and try to keep it together before going in front of over 2,000 students and staff to introduce Beckham. Here is the video that was shared:

The assembly also included a couple of wonderful dance routines, a fun game with students racing to bring a gift to each Sparrow, and most importantly an overwhelming amount of support and love. At one point Laura, the Portland Program Coordinator, invited all of the students to stand if they were willing to commit to at least one hour of community service in honor of Beckham. In turn, this community service raises money for our family to pay for medical bills, living expenses and the costs associated with travelling for out of state surgeries. It was so powerful to see everyone at the assembly all standing up for Beckham. Mykel and I both became very emotionally as we were surrounded by all of these incredible students. We are truly honored that Beckham is this years Sparrow. It is incredible that one sweet little boy can inspire so many, bring a community together, and can also help raise awareness for a very important cause – CHD Awareness.

 

      

We want to thank everyone involved in this amazing assembly and all of our friends and family that came to support us. A special thanks to Erin who is the leadership teacher at AHS (she was actually my teacher as well when I went to Aloha). Erin is one of a kind. She is a genuinely caring person and has the best energy. She has welcomed us into the Warrior Sparrow Family with open arms. We also want to thank Laura from Sparrow Clubs USA who allowed us to share our story and has been a huge help with getting everything set up for Beckham to be this years Sparrow. Thank you to the Aloha Family who has sponsored Beckham. I wish we knew who you were so that we could personally thank you, but just know how much we appreciate you and want to give you a huge hug!! Thank you to all of the leadership students involved in the assembly. And an extra shout out to Nicole (the pineapple) who sat with us during the whole assembly, playing peek-a-boo with Beckham and keeping him distracted and happy!

Beckham and I are excited to go back to AHS next week during lunch so that the students can see him again and take “Selfies with the Sparrow”. We can’t wait to get to know all of you better!

This week we will be traveling to LPCH at Stanford for Beckham’s third heart cath. Our flight leaves at 6:30am on Thursday (pray for us) and we have a pre-op appointment that day at 11am. This will be Beckham’s first flight so wish us luck! We will post some photos and updates on social media, so make sure that you are following us on Instagram and Facebook for your daily dose of Beckham. Larger posts and detailed information will continue to be posted right here.

We love #TeamBeckham ❤️

Xoxo,

Heart Mama

(P.S. If you have any photos from the assembly please feel free to send them to me via text, e-mail or facebook! We were too busy enjoying every moment and didn’t take any photos, so I’m relying on everyone who was there to share photos with us. Thanks!)