11/27/18 – healing bodies and minds

We’re now just over 10 days past surgery, and 5 full days of being home. Judah is doing well, recovering from surgery, and trying to bounce back faster than he should be. It’s tough to keep a 6 year old down, and Judah, while he does enjoy a couple of days of just staying at home watching movies and playing with his toys, is also a kid who needs to be challenged and occupied. Continue reading

11/21/18 – Home again and giving Thanks

It is absolutely amazing to think that just 5 days after his 3rd open heart surgery, Judah has returned home, and he is in great spirits. After several more check ins this morning from the cardiology and surgical teams, and the first peek under and changing of his chest incision dressing/bandages, the doctors felt confident in sending Judah home. We never could have imagined a turnaround from surgery to discharge being this fast, but Judah again and again proves to be brave, strong, and a real fighter. The next few weeks will still be filled with limited exertion, very limited activity, and extremely limited outside world exposure due to him being a major infection risk, but we’re willing to take it slow and give him all the time he needs to fully heal. Thank you all again, and we are eternally grateful for the thoughts, prayers, love, and even gifts and cards from so many of you. Updates will be a bit less frequent now that we are home, but we will continue to post and keep everyone updated as our road to recovery, and eventually regular life, keeps on trucking along.

All our love

11/19/18 – Bumps in the road

There are always a few setbacks and bumps along the road to recovery. After a weekend of doctors telling us how great Judah was doing and how they are pushing to get us home Monday/today, the doctors all got together this morning, took another look at his heart history and his most recent test results from yesterday, and decided that due to some recent arrhythmia and heart irregularities, they do want to put him back on an anti-arrhythmic medicine, one we had come off of about 2 years ago. This medication will require close supervision for the first several days, so we have extended our stay in the hospital for at least another 2-3 days. While we’re here the doctors will continue to watch his lungs, heart, and continue to provide close care while he is still in the early stages of healing and recovery. Otherwise Judah remains pretty low energy, spends most of his time putting his puzzles together, coloring, cuddling with mommy and daddy, and mainly resting.

Though not the news we wanted to hear (that we would be going home today) this extended stay is much more in line with what we expected. A few additional pokes and procedures yesterday and today have been necessary, and will likely continue for a few more days. With any luck we’ll be home right around Thanksgiving, but home or in the hospital, our family is always together, and the healing continues.

11/18/18 – Hitting the fast lane

After a night of restlessness, pokes from nurses and doctors, discomfort, and an xray showing some fluid in the lungs, as the day went on things really turned around for Judah, and his recovery hit the fast lane. His cardiology team is pleased with how he is doing today (aside from the fluid in the lungs), and assuming his x-ray in the morning and overnight goes well, they will try to discharge us from the hospital to head home very soon, possibly as soon as Monday/tomorrow! Continue reading

Friday 5/23 – Continued healing and more steps forward

It has been just under 2 weeks since Judah left the hospital after the Surgery he had on May 1st to repair and reconstruct his trachea. In that time Judah has come a long way, especially the first few days of being back at home. While not back up to 100% just yet, every day at home was an opportunity to rest and be comfortable – which is much easier when you can sleep in your own bed, hang out outside in the yard, and play with your dog and cat.  Continue reading

Tuesday 10/16

A couple of days without an update has given us plenty of news to update you with! All good news of course, Judah is doing well, continuing his recovery and has even been able to stop another one of his medications. Judah had been on a medicine that required injections twice a day (daddy was giving them to him since he’s the more experienced with injections, being a diabetic), but he no longer needs that medicine and so no more shots! All of the medicines he receives now are oral, and most of them are just preventative meds that hopefully in time he won’t have to take anymore. Continue reading

Saturday 10/13

There is not too much news to report these days, recovery is a marathon, and the checkpoints are becoming fewer and farther between as we continue along at our current pace. We love all of the support you – our faithful followers, have given and continue to give us, but since news is slowing down at this point, updates may come just every couple of days, unless something major happens that everyone should know about. Continue reading

Thursday 10/11

A nice and calm night last night with mommy, both she and baby got to sleep pretty well, even with the anticipation for the swallow test today. Judah has calmed down some, and seems to be doing well now that he has been off a number of his medications for a few days. He will wake up in the middle of the night sometimes just before a feeding, awake and alert he just wants to play and be held. Actually, this is how he is during the day too. He’s a wonderfully calm and quiet baby, and a great sleeper, just like his parents. Continue reading

Monday 10/8

Today was a long day for both Baby J, and mommy. The doctors woke both of them up at 7am to do the procedure he was supposed to have late last week. After not eating for several hours, the doctors took little J down to the operating room to perform a panendoscopy, which is a procedure used to examine the esophagus and stomach. The doctors determined that everything looks very normal in his esophagus, although his throat is still a bit swollen and irritated from all the breathing tubes being put in and taken out, twice. Only time will heal it, but it is normal and expected given everything Judah has been through. Continue reading

Sunday 10/7

Another smooth day in recovery. Today, like every day, brought a steady stream of nurses coming in to see the cutest baby on the floor. Judah’s recovery keeps moving ahead, even though at this point that really just means no steps back.

The doctors decided to give him a little extra fortification in his breastmilk meals, to help him gain a little bit of weight. Although he has not really lost any weight, he has not gained as quickly as he should have because of not eating for so long after the surgery, but he is now getting back on the right track. Continue reading

Saturday 10/6

Hello and welcome back to all of our faithful followers. Baby J had another great day today, medically boring other than a few of his medicines being turned down even further. The doctors are trying to get him off as many medicines as they can before he goes home, but he will still probably be on a few that mommy and daddy will have to continue giving to him for a few more weeks once we are finally sent home. Continue reading

Thursday 10/4

Up on the 8th floor, it is a world of difference from the ICU. Up here, aside from having a door we can close and our own private bathroom, the nurses and doctors are much more laid back. Someone stops in to check on us every 2-3 hours, instead of every 2-3 minutes like in the ICU. Although we loved the attention we were getting in the ICU, it’s an incredible relief to have some privacy and calm. The nurses down here are just as nice as the ones downstairs, and they are also just as in love with Judah as the ones downstairs were. Otherwise, everything is so free and open compared to being in Intensive Care. Continue reading

Wednesday 10/3 – Moving Day!

A huge update for baby Judah today, he was moved out of the CICU and up to the 8th floor! He has been doing so much better over the last few days, that this morning the doctors even took out the PICC line in his arm that he got when he first came here. He now has just one line left, a Broviac line that isn’t hooked up to anything, only being used to take blood when they need it, much like the original PICC line was. Continue reading