No News Is Good News

It’s been a while since our last update but the inactivity in Theo’s life has been essentially limited to this blog only. He has been doing great since his Glenn surgery at the end of last summer and is on the move as much as ever these days.

As a quick reminder, there are two main things Theo’s doctors have been watching over the last 12 months: (1) the force of his heart pumping and (2) the amount of blood flow to his left lung. Fortunately, Theo’s heart is back to normal strength and is pumping as strong as it needs to. Unfortunately, he may not be getting as much blood to his left lung as his doctors would like to see.

Low blood flow to a lung can result in poor growth of that lung and the pulmonary artery the brings blood to it, and a lower than desirable blood oxygen level. To make sure this is addressed in Theo well in advance of the next (and hopefully last) surgery he has planned for some time in 2021, we are back in Boston for what should be a quick catheterization procedure scheduled for tomorrow morning.

While the doctors don’t know exactly what will need to get done, if anything, until they are able to take a look inside the blood vessels around Theo’s heart, it is likely that they will place something — either a stent or a “balloon” — in Theo’s left pulmonary artery to try to increase blood flow to his left lung.

We’ll update the blog as we know more, but thoughts, prayers and good vibes for the little man are always appreciated!

18 Weeks — Shipping Up to Boston

The Becker family arrived in Boston this past Sunday welcomed by our gracious and familiar hosts in Beacon Hill. We’ve spent the last few days preparing for Teddy’s first surgery, which is being performed this morning. Again we’re optimistic that all will go well and we’ll provide periodic updates here as we have them.

This procedure is called the Glenn. It is an open heart surgery during which doctors will detach the superior vena cava from Teddy’s heart and reattach it to his pulmonary artery. Doctors will also expand the size of Teddy’s left pulmonary artery to allow for more blood flow to the left lung and remove the stent that was placed in June.

While we’re certainly nervous of the risks, the Glenn has been characterized to us as a fairly standard procedure and we’re confident in the amazing team of doctors and nurses here. As long as all goes well, Teddy’s recovery will be around 7-10 days. We’re wishing our little man good luck and we’re thankful for the thoughts and prayers that have been sent our way.

Week 11 — Back to Boston

IMG_0255IMG_0269IMG_0259It’s been a while since our last post, so we wanted to provide an update on how Teddy’s doing and what happened during his latest trip to Boston.

All-in-all he’s been great.  He is gaining weight like a champ (currently 11 lbs 3.5 oz) and is generally on track with his developmental milestones.  Each morning we weigh Teddy and take his blood oxygen saturation levels, which are the primary indicators for good health.  Ideally we’d like to see him gain a 1/2 an ounce per day, and see his saturation levels in the mid-80s, although they are OK between 72 and 92 percent.

It is normal for a PDA stent to gradually close as a child grows, and for that reason we had a prescheduled appointment with the catheterization lab at Boston Children’s Hospital to check in on Teddy’s stent for June 17.  However, over the last few weeks Teddy’s sats started to decrease gradually into the mid- and then low-70s.  We were consistently in communication with his doctors to make sure that all was OK.  When his sats dipped into the high 60s, Teddy’s team of doctors thought it was best to bring him back to Boston a week early so his stent could be adjusted.

During Teddy’s initial evaluations in Boston the doctors found that his stent had in fact narrowed and that there was less than an optimal amount of blood flowing to Teddy’s left lung.  Within a couple of days, Teddy was seen by the cath lab to adjust his stent and increase blood flow to his lungs.  He did great during the procedure and his sats have returned to a healthy level.  The procedure took its toll on him, however, and he has been a bit fussier than normal.  He continues to improve every day and we look forward to having him back to full strength and smile frequency.

The next step for Teddy will be to have the Glenn surgery done, which will happen on August 8.  We’ll be back in Boston for about two weeks around that time.  As long as the surgery goes well, he’ll be procedure-free until he reaches 2 1/2 to 3 years of age.  We’re looking forward to Teddy’s continued growth and development and are hopeful for a successful surgery.  Until then, Teddy’s enjoying days on the lake and nights by the campfire!