Paul is unexpectedly back in the hospital. (For those of you who are new, click HERE for more details and pictures.)
We are choked with grief, as we watch him suffer. He’s been vomiting for two days now, as the doctors are deciding what to do. As it is, they are going to tap his spinal shunt, to see if fluid will come out. If no fluid comes out, then Paul will have another shunt revision surgery. If fluid does come out, then that means the shunt system is “working,” but it’s not helping him. In this case, he’ll have a cranial reconstruction surgery on Monday or Tuesday. This is where they cut and peel back his skin from ear to ear, take apart his skull, and put it back together, allowing for more space. (St. Jude, pray for us.)
In the meantime, his doctors will do everything they can to get him through the weekend. They can go in, open up his cyst, and drain fluid to release pressure, but again, they won’t do the cranial reconstruction surgery until Monday or Tuesday because it requires more doctors and planning. It is a complex surgery, to say the least.
We should know later tonight which surgery to expect.
This is very painful for all of us. It’s heart-rending.
Just now, we’ve booked a house within walking distance of the hospital, and the children and I are leaving tomorrow morning to join my husband and Paul. Our whole family will be together.
Please remember us in your prayers.
P.S. A friend sent this to me. I feel it in my heart. Thank you, dear friend.
For those of you who are following Paul’s plight, here’s an update.
On Monday we began the long trek back to Rochester for a second surgery, which lasted about 3 hours. His doctor reopened his incisions from 7 years ago and made a thorough examination of his old shunt system, beginning with the shunt itself, down to the valve behind his ear, and finally snaking all the way down his neck into his stomach cavity.
The doctor was hoping that he’d discover that it was malfunctioning, which would be an easy explanation for the incredibly high levels of pressure in Paul’s brain during his migraines. But he did not. The old shunt was functioning. Nevertheless, he replaced it with all newer equipment, in hopes that even though the old equipment was functioning, perhaps it wasn’t functioning optimally.
And how was Paul during this four day trial? Physically he was as well as could be expected, but emotionally and psychologically, he was down. Very down. As a mother, this was the hardest thing to watch. He didn’t want to be in a hospital anymore. He didn’t want to have wires and tubes sticking out of him. He didn’t want to wear a hospital gown. But he didn’t cry about it; he just looked terribly sad.
So we prayed through it. This time he chose to offer his sufferings for our family. We prayed rosaries. We prayed morning and night prayer. But really, I think he was just exhausted, as we all were.
Finally the day after his surgery in the afternoon, he picked up a little, as the beautiful water fountain out of his window was turned on that day, and he could watch it from his window.
My mom and I also walked him down the hall to a pottery class for the children on his floor. He didn’t want to walk out there in his hospital gown, dragging an IV cart along, but he did.
We also found other things to distract him with. We watched the Twins play baseball. (Paul’s a big fan of Rosario, and it was neat to see him hit a few home runs.) My mom bought a lego set, which he put together, took apart, put together… We read a few light books, you know, like Frog and Toad.
In the end, it is our hope that this new shunt will somehow alleviate his migraines, and they will disappear. High levels of pressure in one’s brain is a very serious thing. Children with hydrocephalus die or go into a coma with the same levels that Paul was experiencing–levels into the 40s and 50s. But because his levels are cyclic, however, he manages to be ok, and has not had any damage to his brain, yet.
Paul’s doctor has said that if this shunt doesn’t work, then we’ll have to think about another surgery wherein he’ll take apart his cranium and reassemble it with a plastic surgeon to allow for more space, in an attempt to alleviate those pressure levels.
Lastly, a Thank You
Truly, my husband and I are very thankful for the great help of the staff, doctors, and nurses at St. Mary’s Hospital in Rochester. They’ve all been so helpful and kind.
We’re also greatly indebted to our parents who have done so many things for us over these last four weeks–watching children, cooking meals, paying for hotels and gas and food, allowing us to use their reliable car, and indeed accompanying us on these many trips. How could we do it without you? We couldn’t. May God bless you for your generosity and love. We love you all so much.
Lastly, we want to thank everyone who has prayed with us during this difficult trial. As prayers and sacrifices are hidden things, and we may never know about them, we pray that God, who is a great Father, will reward you all abundantly.