Motherhood & Parenting

Paul’s Surgery is Done

For those of you who are following Paul’s plight, here’s an update.

IMG_1326.jpg

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.

IMG_1325.jpg
Here’s a closer shot of two of his incisions.  There’s a third on his stomach, where the tubing ends.

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.

IMG_1330.jpg
When he could move around, he sat up in the window and watched the courtyard fill with people enjoying the fountain and warm weather.

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.

IMG_1331.jpg
Here he is, painting a mug.  The local company that sponsored this activity will fire it and mail it to him.

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.

IMG_1334.jpg
Here he is on the way home.  The doctors gave him some gear to show his siblings.  He’s also sporting his new Twins Rosario t-shirt.  Thank you, Mom!
Motherhood & Parenting

The Plan For Paul

For those of you interested in my son, Paul, here is another update.

Last night he finally slept, and as you can see from the photo below, he woke up with a little more pizzazz.

thumbnail_IMG_1312.jpg
Here he is, feeling better.  

As an aside, the other day, when the nurses wheeled him in for surgery prep, one of the nurses asked him, “Do you know any jokes?”

With a twinkle in his eye, Paul politely answered, “Yes,” and calmly asked, “Have you seen the new movie called Constipation yet?”

“Nope.  Never heard of it.”

“Well, that’s because it hasn’t come out yet.”

And that, my dear readers, is my son’s favorite joke.

The Plan, In Short

After two days of monitoring the pressure in his brain, his doctors have determined that his existing shunt is malfunctioning and possibly sucking in bits of his brain.  So next Tuesday, Paul will have another surgery to remove the existing shunt and to place a new one in.

One more week of this!  Oh, please pray for me too!

And a Thank You

Lastly, we want to thank Fr. Kasel from the archdiocese of Minneapolis and St. Paul for traveling to Rochester to anoint Paul.  Truly, we are very grateful.  He not only anointed him, but prayed with him, heard his confession and played cards with him.

May God bless you,  Fr. Kasel!

thumbnail_IMG_0417.jpg
Paul, my husband, Shawn, and Fr. Kasel
Motherhood & Parenting

Update on My Son, Paul

Dear Readers,

I write this morning asking for prayers.  Our son, Paul, is currently in Rochester, MN, being monitored at the hospital in the ICU.

My husband and father-in-law drove down a few days ago for an Intracranial Pressure Monitor to be placed under his skull.  This device monitors the pressure in his brain to determine if there’s too much.  For example, the doctor explained, when you have a bowel movement, the pressure levels in your brain reach 30, but only briefly.  Normally the levels of pressure in your brain do not exceed 20 mmHg.

One cannot sustain high levels of pressure for extended periods of time without eventually doing great damage to the brain.  In fact, one of the first things to go are the eyes.  Blindness will result from high, extended levels of pressure.

thumbnail_IMG_1309.jpg
Paul, after surgery yesterday with the Intracranial Pressure Monitor

In any case, Paul’s doctors are concerned that his existing shunt, which was placed in 2012 to drain an arachnoid cyst, might be causing problems.  The only way to determine if this is the case, is to monitor it.

Immediately upon placing the monitor on his brain, the doctors immediately noticed elevated levels of pressure of around 40.  Obviously, this is not good.  After a few hours, however, it did go down, when Paul’s migraine went away.

Last night, though, was a rough night.  Paul had another migraine and spend the night intermittently vomiting.  The pressure levels in his brain reached into the 50s and did not return to normal until around 6am.

Later today, we should know more information, as to what the doctor wants to do.  He’s only seen a handful of these cases – children with existing shunts experiencing dreadful migraines.  We are praying that the angels will guide the doctors into making the right decisions.

Please, remember Paul and his doctors in your prayers today.