I am in complete disbelief as I sit here typing this blog post updating everyone on Leo’s hospital visit from yesterday. If you have been following along on our family’s journey then you are very familiar with our son, Leo, who was born with a rare disease called Sturge-Weber Syndrome that often presents itself with a facial vascular birthmark. Due to the placement of Leo’s vascular birthmark, Leo was at a high risk of having glaucoma. Since he was a few days old we have regularly taken him to an opthamologist to get his eye pressure checked (please see past posts for more information on this). As Leo has gotten older it’s been more of a challenge to get an accurate pressure reading. He gets frustrated when we try to get him to sit still and he’s also very curious, so it makes it harder for the doctor to check his eye pressure.
I brought Leo in to see Dr. Brandt, his opthamologist, about a month ago to get his eye pressure checked and it was very high, so his doctor wanted to get him in for potential surgery. Dr. Brandt would surgically place a shunt in Leo’s eye to help relieve the pressure. The biggest scare is that his high eye pressure could be causing damage to his optic nerve, and in order to really know and get an accurate reading it would be necessary to put Leo under anesthesia.
The timing has not been the best since I am due with our third baby boy in two weeks and with all the COVID-19 news we’ve had to be very careful. We talked it over with Dr. Brandt and we all agreed it was in Leo’s best interest to schedule surgery as soon as possible. We knew that no matter what, Leo was going to be taken care of not only by Dr. Brandt but by his medical staff at UC Davis. We were told that only one visitor could accompany Leo. We decided it would be best for Paolo, my husband, to take Leo since I’m so close to being due with our baby. I was really struggling with the fact that I was not going to be with Leo but I knew it was for the best. Plus, I tend to struggle more emotionally when it comes to these kinds of things than my husband and being pregnant doesn’t help.
On the day of his surgery, as I was getting Leo up in the morning I was praying for him that he would be safe and comfortable. I wasn’t able to give him his usual bottle of milk, since he couldn’t have any food in his stomach prior to anesthesia. Instead, we had to give him pedialyte and started to cry. He looked confused and kept looking at the bottle and then me. It was breaking my heart. I kept praying he would just drink it. Thankfully he stopped crying and began drinking it. We packed his little bag full of snacks, milk and extra clothes for the hospital so he can eat as he comes out of anesthesia. One of the hardest aspects of these surgeries is not being able to feed him for so long. My husband drove him to UC Davis Children’s Hospital and waited for the nurses to take him back to the operating room. Leo was obviously fussy from being hungry but my husband did such an amazing job entertaining him and consoling him. Dr. Brandt came in and talked to Paolo letting him know they were ready for surgery and took Leo. Paolo texted me around 11:40am informing me they were starting. Probably after 20 minutes Dr. Brandt came back out to let Paolo know that they did NOT need to move forward with the surgery. He said his eye pressure was at a 20 (normal) and there was no sign of damage to his optic nerve. This meant NO SURGERY for now. We didn’t even entertain the fact that there was a possibility he wouldn’t need surgery. Dr. Brandt has told us that it’s not a matter of “if” but “when.” Needless to say, hearing this news was quite shocking. Dr. Brandt explained that this is a progressive disease and eventually Leo will need surgery, but if we are able to hold off while he is young then that’s better. What a praise!
We are going to go back to see Dr. Brandt in the summer to get Leo’s pressure checked again and hopefully make sure it remains low. For now he will continue to receive his daily eye drops. Knowing that eventually Leo will need surgery saddens me but also knowing that the timing for his surgery is not now is a praise. God’s timing is perfect.
We want to say thank you to all of our family and friends that have been in prayer with us over Leo’s health. Leo will share these stories one day and I know he’ll be so thankful for all of you.
I want to end with an encouraging Bible verse in hopes that it might encourage you and others who may be going through times of uncertainty:
“But the Lord stood with me and gave me strength” (2 Timothy 4:17).