There Were Highs and Lows

Cully is now nearly a week post chest closure!

The past week hasn’t been without its struggles, but he has been remarkably stable and very gradually improving. His edema (swelling) continues to be his main obstacle, as it affects the space his lungs have to expand and limits his ability to move his limbs.

The PD catheter continues pull fluid from his body, as his kidney function remains dormant.  While we seem to have found the sweet spot for him over the past weekend, last Thursday was yet another adventures day.  The day following surgery usually entails quite the swing of fluid intake versus output day over day and Cully is very volume dependent to keep his blood pressure up.  Early Thursday morning his pressure gradually fell into dangerous levels, resulting in a worrisome few hours as he was given blood to increase his overall volume. While his pressures were low his care team ordered an echo and an ultra-sound of his head, both uncovered troubling news.

The echo revealed a good size clot in the right atrium of his heart.  Clots are very common in children with hypoplastic hearts as their blood flow is not as brisk and requires the use of blood thinners (heparin or later in life aspirin) to reduce the risk.  The placement of Cully’s clot on the ventricle wall was not impeding blood flow meaning it could be treated with increased heparin.

This is when we received news that his brain scan uncovered legions or cloudiness in his left frontal lob. A CT scan was ordered to determine what was creating the issue - a bleed would require weaning, instead of raising heparin levels to treat the clot.  The news of these two new issues was tough to handle.  Cully had already overcome so many hurdles and appeared to be improving ever so gradually each day. We anxiously awaited the results of the CT scan to determine the course of treatment for the blood clot and to gain a better understanding of any neurological issues that may be the result of whatever had caused the legions.

The CT scan revealed relatively positive news and there was no bleed, allowing the treatment of the clot to begin.  However, neurology determined the legions in his left frontal lob were caused by a stroke. The injuries suffered were considered “unimpressive,” meaning no major damage had occurred. Cully has continued to move his right arm, hand and leg, all good signs as the left hemisphere of the brain controls the right side of the body. In addition, Cully continues to visually track the doctors and us when awake - great signs that little neurological damaged had occurred.

Since Thursday, Cully has continued to maintain solid blood pressures (with no hiccups volume or otherwise related) while having his medications weaned very slightly, good oxygen saturation levels, constant positive PD runs (bringing fluid intake/output marginally negative each day) and no signs of major neurological damage.  The goal for the coming days is more of the same - quite consistent good days, with slightly negative fluid intake/output to decrease the edema and hopefully continue to wean his medications and ultimately his ventilator. 

On the home front, we are trying to get back to a schedule that allows us to be there for Cully, keeps ourselves in a good place and gives Tillie the attention she deserves.  This weekend we’ve both enjoyed some down time at home, even shared a quiet dinner for two of sushi last night (thanks to generous bite squad gift certificates)! In addition, the down time allowed us to get the house and Tillie into the Christmas Spirit!

As always thank you all for the generous support.  Each of you has made it possible to weather the last six weeks.  We hope you will continue to join us in praying for a week of healing and routine.

All our love,

Carl, Jessica, Tillie and Cully