3/8/16 – 4 days post surgery

Quick update for family, friends, and fans

As Judah’s nurses might expect, his tummy and his need to get out of bed are the biggest issues. Even though he is LIQUORED UP, our little bear fights through it and tries to move around (BIG no no with the breathing tube). And because he’s got plenty of meds going,┬áhis belly has stopped. So he’s getting nutrition in a way that’s a bit more invasive.

But he’s been mostly comfortable this week, and our team is AWESOME at problem solving! Continue reading

Friday 8/5 – Summer rolls on

July was a tough month for Judah, he spent most of it sick and unfortunately had to make several trips to the hospital. Early in the month Judah spent 4 nights at the hospital after getting a cold, and again at the end of the month Judah spent about 2 weeks fighting another sickness, resulting in two trips to the ER and another night in the ICU. In between illnesses and hospital visits, Judah also made his first trip up to Grandma and Grandpa Jones house, and was interviewed for and appeared on the Channel 4 News in a great story about how awesome he is and the amazing Beads of Courage program! Continue reading

Tuesday 7/16 – A lover of fine art

While Judah continues to grow and develop wonderfully, his heart still occasionally has trouble keeping up. For the last few weeks, Judah has continued to have more and more frequent arrhythmia’s and heart issues. For the most part they remain mild, and within an acceptable and “normal” range for his heart, but sometimes his heart rates can get a bit out of control, even with all of the medications he is on. Times like this can lead us to a visit to the Emergency Room, and Sunday, for the first time since we can home on March 21st, a 36 hour re-admission back to the Cardiac Intensive Care Unit at Children’s Hospital (more on this below). However, despite the sometimes frequent craziness in Judah’s heart, his smile and attitude never show any weakness. Continue reading

Monday 3/4 – 2nd Open Heart Surgery

Thank you all for your incredible outpouring of support, thoughts and prayers today – they surely helped us get through this long and difficult day filled with uncertainty. Judah’s 2nd open heart surgery is now complete. Although it took longer than expected, and once the doctors got Judah opened up they found and fixed some other problems, but overall surgery went well and the team is happy with how it went. Now begins another long road to recovery, but we hope one of the last big steps to getting Judah healthy and ready to go home. Continue reading

Wednesday 1/30

In the last week, Judah has had a few more ups and down, but overall he continues to grow, smile, play, and wait for a chance to get into the Cath Lab. Two weeks ago after a cardiology follow up, Judah was re-admitted to Children’s Hospital from the step down facility we had been at, The Children’s Home. He had been having an atrial flutter and some respiratory issues. After some monitoring, medication adjustments, and time, he stabilized a bit and was ready to get in to the Cath Lab. Continue reading

Sunday 11/18

No rest for the weary in the Intensive Care Unit. After a busy week coming off ECMO and removal of the breathing tube, just one day passed and Judah began having breathing problems again, and quickly had to be placed back on breathing tube support. He has been having a lot of buildup in his chest and lungs, and it is this fluid and mucus that is giving him so many problems breathing. Ideally, a child should never be on a breathing tube, but in some circumstances it becomes necessary. when it is necessary, Continue reading

Wednesday 11/14

While a lot of big things have happened in the last few days, on the surface recovery remains slow, but with progress. On Monday, the doctors felt ready to remove Judah from ECMO, the bypass machine that had been acting as his heart and lungs. They began by slowly turning the machine down to see how Judah’s own organs would take over, and finally were able to turn the machine off completely and let him regain full control of his heart. Continue reading

Sunday 11/11

Thank you all for the incredible outpouring of support, thoughts, prayers, and messages. Judah currently remains on ECMO and life supporting machines, but he is stable, and we, as well as the doctors and nurses all agree that he looks a little better everyday.

Since the cardiac arrest on Thursday morning, Judah has had a number of scans, tests, monitoring, and adjustments. His heart rate has stabilized some, and his heart begins taking a little bit more function away from the machines every day. Continue reading

Thursday 11/8

After the heart cath on tuesday, things were looking good. The doctors showed us x-ray images of the restored functionality to Judah’s pulmonary artery and the increased blood flow to his lungs. Everyone was hopeful that this would help Judah not only breath easier, but have more strength to push forward in his recovery. He was resting well and gaining strength, and although he seemed uncomfortable at times, he was easy to console and soothe – until late last night. Continue reading