Yesterday Sue and I had a telephone follow-up with the vascular doctor to be brought up-to-date on the Celect IVC filter (an implanted umbrella-looking device at the junction of the vena cava; it’s sole purpose it to catch any blood clots that break loose from reaching the heart). The news is not good. We are stuck between a hard place and an equally hard place.
Based on the last MRI of Ryan’s abdomen, four of the filter’s prongs have puncture the vena cava. This will make it’s removal difficult and dangerous. Fortunately, these didn’t cause internal bleeding (yet), but is dangerously near the a bile duct. It’s concerning, to say the least. The doctor went on to tell us that Ryan’s vein above the filter looks abnormally small.
Here’s the catch, and it’s a doozy… the doctor indicated there are serious risks in leaving in place if it punctures the bile duct (causing Ryan to become septic) and serious risks in removing (tearing the vein). The recommendation is to have an interventional radiologist and another vascular doctor weigh-in. We decided to have this, and any surgeries, performed at Johns Hopkins in Baltimore and already began the process of setting it up. Oh, and just for good measure, the filter might be too far embedded to even consider removal as an option. This means Ryan will live each day with the risk of dying a painful death.
Well, there you have it. Damned if you do, and damned if you don’t.
It will come down to this decision; when do we take the risk? My first thought is we try to get this filter out (if possible) and take the risk while Ryan is already on the operating table. This way he has all the hospital’s resources available if something goes terribly wrong. The alternative is to wait and hope nothing happens. But if something does happen we’ll need to act quickly.
It makes a me wonder, what are other parents deciding upon today? Probably the good things. Where to vacation? What to have for dinner?
Even parents of criminals, I guess, might wonder simple things, like if it’s meatloaf and carrots night at the jail. Maybe even debate what the on television in the convict’s common area.
I really don’t know, but I (personally) suspect it’s not how to keep their child alive for the one-in-a-gazillion chance of recovery from having their brains beaten in.
Lisa jobe says
Im am literally at the hospital with my husband dealing with the exact same situation and complication. Curious what you chose to do.
We decided to have surgery to remove it. It went unexpectedly well and it came out. We felt it was too much risk to live with this, as compared to attempting removal in a hospital environment where all resources were available.
Ken I cannot even imagine what you and Sue are going through, thinking, processing now!
No there are not alot of people who are going through what you all are endevouring.
I pray that God give you the wisdom that you need to make this decision. People will give their opinion on what they think but you need the wisdom, you need the peace, you need the extra prayers and love.
Whatever you and Sue decide is going to come from your head and heart and not any others.
I wish I could do more or say more. I wish there was that magical brain pill that could heal your son and my man from this horrid horrid diagnosis that they have to endevour. It’s so not fair! No way will I ever forget yours and sues reassuring smiles at shepherds even when things were hitting the fan for all of us!
Lots of love and lots of prayers coming your way.
Still here, still praying…
Nancy Tawney says
Still here,still praying!
Ryan's Rally: We Got This via Facebook says
No updates yet.
The Colangelis says
Ken, God will help you make the right decision. We are praying for Ryan and your family. God Bless you.
Bill Nier via Facebook says
No. These things take a while to get in order.
I Googled something like, “does scar tissue form around dislodged IVC filter,” and got many hits if you want to do some reading. It seems that sometimes the recommendation is for removal and at other times it is not. Only a vascular surgeon can make this call, but I know you will be informed so that your decision is based on research and sound judgement after consultation with one or more top notch vascular surgeons. You’re the Dad! Love and prayers
Cheryl Shields Askew via Facebook says
Count me in too…
sally ellis says
I’m so sorry you have this decision to make. I can only say follow your instincts on this, they have been right on so far. Still here
Ann H Tearle says
Prayers and love. You would be with Ryan 24/7 anyway, whether home or in hosp., i would not leave his side in any case. They will not throw you out…..or all of us will come down upon them with our super wrath. Intensified Prayers and love, Annie xoxo Ryan
I think you should leave it in. From what I understand is the longer you leave it in the more stable it comes because the vena cava grows into it, stabilizing from dislodging. Most IVC filters are not taken out.
Ken, What a terrible situation. However I know without a shadow of doubt that God is walking with you. If you cant go to him, we will do it for you. We will lift Ryan and your family up in prayer everyday, so do what you would normally, research and fight for your wonderful son. Courtney has not had an inpatient stay at John’s Hopkins but she did go over there for some test while she was inpatient at Kennedy Kreiger Instutute. It was nice and the doctors and nurses were kind to us. However you know as well as I do, we have to be their advocates and speak up. Sometimes that stinks because all we want to be is mom and dad. Not advocates, nurses, doctors, therapist, aides and the list goes on. Hold tight Ken, he is so strong and that he gets from his mom and dad. Lots of love and prayer Oh by the way the food is ok.
Jo Hobbs via Facebook says
Prayer and support — it’s what we do! With you in thought and spirit always. Love
Lord, we need you down here in a big way! It seems there is always something to keep you (and us)up nights! This is so scary, but let me tell you what our pastor told us, and then reminded us once again.
When we learned that Stewart had an aortic aneurysm, it scared us to death. My brother had an AA to burst on Rt. 95 in Richmond on his way home from work. Lucky, lucky man! He was driving right next to Medical College of Virginia. Thus, his life was saved! Miracle? Absolutely! But we knew that this aortic aneurysm could take Stewart’s life very quickly if it ruptured. We asked for prayers at church and spoke with our rector. This is what he said: Stewart and Jo, God allowed this aneurysm to be found so that it can be repaired and Stewart can live, so relax and stop worrying. God is in control. Do you think he is going to desert you now? Have faith — unshakable faith — in an unpredictable world! We don’t know what is just around the corner, but God will get you through! And He has. When Stewart was stricken with a heart attack last October and had 2 stents at WHC, I held on to what our pastor had told us. Ken, if God didn’t intend to fix this for Ryan, it wouldn’t have been discovered amiss in the first place. Please, can we hang on to this? Unshakable faith in an unpredictable world. I can’t believe that this will take Ryan down after God has brought him this far. I hope my story brings you some comfort. Galetians 6:2…bear one another’s burdens… is what we do here. SHSP, NGA Love
I have to admit, the info you gave us in your post today threw me for a loop — I wasn’t prepared for it at all, but then — can a person ever really be prepared for hearing something like this? One wonders, which is worse –sitting on a time bomb or trying to defuse it — as you said, it’s a gut wrenching (and frightening) choice to have to make. As always, you are taking this step by step, by getting additional experts to evaluate the situation before deciding what to do.
Who is the top vascular surgeon in the area I wonder?
I am praying with all my heart for the Lord’s help in this matter. It is overwhelming, monumental and scary. It has the feeling of having a huge cement block placed upon’s one chest with a large sopping wet blanket on top of it. Lord, please guard Thy son, Ryan.
Team Diviney, I know you will hold Ryan and his family close to your hearts as they work with the doctors to make the best decision for Ryan. Please keep them in your prayers daily, hourly and in all moments Ryan comes into your mind.
Ken, we are all here for you in prayer, love, caring, and concern. Please do not hestitate to call upon us for help.
Will wait for more info and updates as you are able to give them. In the meantime, we are all thinking about you and holding you close to our hearts. Sending hugs, and stepping up my prayers for guidance and wisdom for the doctors, continued healing and protection for Ryan, and an abundance of courage and strength for you, Sue and Kari.
Always here, always praying…Paula
I just read about the area’s top physicians/medical professionals in a copy of the Washingtonian, but can’t remember which one. I will check back issues.
It is so difficult to make a recomendation, and we hesitate because if something doesn’t go right, then we wonder if we should have made the recommendation in the first place. We think Dr. Michael Lilly at University of MD Medical center, Baltimore, is the world’s best vascular surgeon after he performed Stewart’s AAA repair. The parking there is also convenient (I’m not going to tell you how great the food is, because then you say, Jo… …). I know — this is about a dangerous surgical procedure. We also were very impressed with Washington Medical Center, and there is a hotel right next door (arrangements made far in advance when possible).
So now, I’ll post —
Saying extra prayers for Ryan and your faimly today.
Praying for Ryan always. Ken, have confidence in your decision. Your instincts have served you well. Love, Peggie
Sadly I have known too many families who have had to make these very difficult kinds of decisions for their children. It is very difficult. Praying for Ryan.
I would go along with the surgery now and like you said there will be top surgeons around if in case something goes wrong. I think Doctors tell us the worst posible situation because of their fear of lawsuits. My prayers continue.
Becky London says
massive prayers on the way for Ryan and his family. God Bless you all!
Has Ryan had surgery at john Hopkins in Baltimore before? I had elective surgery there and even though my surgeon was amazing, the recovery in the hospital was horrible. the nursing staff is lacking to say the least.the floor i was on there was only 3 nurses on the whole floor. the nurses themselves were great but there was not enough for the number of patients there was.I was left, stuck in the bathroom for about an hour, crying unable to get up myself. my surgeon told me not to bring my daily meds in that it would be supplied to me and it was not. there was one patient that had her 4 year old staying with her and he was running into different rooms.i was suppose to have a private room because it was elective and they put me in a room with a sick elderly women putting my health at risk. i know this is one experience but i went there because of the reputation of the name and i was so very disappointed. i was only there for 2 days and it was the worst 2 days of my life. Best of luck to your family, your in our thoughts and prayers everyday
On the other side of the coin, we know many, many people who have nothing but good to say about Hopkins, except that the parking is bad. Also Washington Hospital Center, University of Maryland Medical Center, Nova Heart Hospital (? name)and on and on. All one can do is pick one, but all hospitals seem to be lacking in sufficient nursing care and other areas need improvement. But Ken will BE THERE every nano second to keep them on their toes.
Thank you for letting us know, Jaime. It is always good to know when people are dissatisfied with the quality of patient care at a hospital or medical facility and why In the past few years, we have had several visits to WHC, UMMC and others and would make a few changes if we could, but the overall care was good.
Yeah, Jaime, that’s a horror story you experienced. I will pray that the situation is not repeated for Ryan and Ken–but I feel sure that Ken will not hesitate to raise hell and make heads roll so that Ryan gets adequate care. I just hope he doesn’t have to–he and his family will already be under enough stress.
Carla Liberty says
Please storm Heaven with prayers for a successful outcome no matter what is decided as respects this filter.
Ken, we are:
SHSP, NGA, RKD,YGT (you got this)
Gail Doyle says
Carla, We are certainly storming the heavens with prayers for Ryan and all the right decisions to be made Always will be SHSP NGA RKD YGT Thanks for message
Oh Ken. This is horrible. I am thinking about you. A gigantic hug to you.
SH, always praying.
Gail Doyle says
Ken,We are all here and all praying for the right decisions for Ryan.Stay strong and know thousands of people are rooting and praying for Ryan to heal.Hugs to all Love Gail
Rita Caporicci Hoop via Facebook says
This calls for intensified prayer, Team Diviney. Ryan is a conqueror, and we are behind him all the way to ultimate victory!
Many prayers for your family today Ken!