Tuesday, November 2, 2010

Linus's Story: Part 3

Tues before last, Trina and I walk into Linus's room. My mom watched the other two boys for us so we could both see Linus together. It's been a while since we weren't split up between boys. Much to our surprise a doctor walked right in behind us. You never see doctors after normal hours so I was a little scared. She goes on to introduce herself and to tell us that she was just about to call us. Dr HappyDance came by to see Linus and was not happy about his condition. He's always breathed a little faster than normal, but that day it seemed worse. They gave him extra Las1x to pull the fluid out of his lungs, but it didn't seem to help. The OT hadn't been able to work with him on his suck swallow reflex because he was breathing so fast. This was not a good sign. We were told he would need a 2nd balloon catheter procedure in the morning and that we needed to be there to talk to the DrHD before hand.

We were shocked. He'd been looking so good. They'd only moved him downstairs 5 days prior. We thought we'd have a few months to get him home and grow him up a bit before his next procedure. Apparently not. We held him and cried until it was time to go home to our other boys. Then we held each other and cried.

Once again my mom watch Simon & Dexter while we went to be with Linus. Dr HD explained that he was unhappy with Linus's progress. His echo showed no improvement in his left ventricle (LV) function and his lungs were taking on more fluid. He went over all of the possible complications that doing another cath may cause. The list was long and almost all of the complications could lead to death. We signed consent and waited for the anesthesiologist to come talk to us about all of the complications Linus could have on his end. Once again, the list was long and filled with death. We signed again with a heavy heart feeling like we had no choice since doing nothing would most certainly lead to death, albeit a slower one.

Our first update call came an hour or so later. They had finally gotten Linus knocked out. He doesn't deal with anesthesia well so it's always a dangerous project for them. At that point he was "mostly stable" with a ventilator and meds so they were going to proceed. The next update we got was that the measurements were taken, they were not going to balloon the valve and the doctor would be right out to talk to us. We were so confused. We were shown to a consultation room and told the doctor would be right in. A while later he showed up. He explained that he went in through both the femoral artery and vein at the same time with two different catheters so he could take real time pressures on either side of the aortic valve. He would have been happy with any gradient under 30 and Linus's was only 12. That told him the reason his left ventricle wasn't working properly was not because it was pushing hard against an obstruction and losing. It just wasn't trying to push. His thinking was that we no longer had a valve problem, we had a heart muscle problem. He recommended Linus be put on blood pressure medications and a diuretic to keep the fluid out of his lungs. Hopefully his left ventricle function would improve, because if it didn't, he'd be on a heart transplant list.

We were in shock. Gone was our ultimate fear of having to reconstruct or replace his aortic valve before he was ten pounds. It had been replaced by the fear of needing a full heart transplant. How could this be happening to us, to our little boy? When we went upstairs to see him he looked terrible. If I didn't have all of the machines to assure me he was alive, I would have wondered.

The next 4 days were a barrage of bad news and complications. He spiked a 102' fever and was started on 3 potent antibiotics. Blood, urine and lung aspirate cultures were taken and luckily came back clean 3 days later. As the fever broke, his blood pressure dropped. They had to stop one of his pressure meds and give him 3 blood transfusions. He had no pulse in his leg for days. An ultrasound showed a huge clot almost fully occluding his femoral artery. Then his right partially lung collapsed. He needed IPV treatments several times a day. Every day there was some new terrible thing he had to overcome. I couldn't understand how he kept going. We spent hours at his bedside. We cried buckets of tears and felt helpless to ease his suffering.

Linus's new room upstairs in the CVICU. So many machines to regulate one tiny boy.

A few hours after his 2nd catheter procedure. Eyes swollen. Completely sedated.

Ventilator tube and CO2 monitor.

Blue NG tube usually used to feed him is now being used to vent his belly so gas doesn't build up.

Teeny blood pressure cuff.

Picc line to deliver meds directly to his heart. Used to have 2 lumens, but one clotted off.

An arterial line to monitor arterial pressure and to draw blood. The blue wire is a temperature monitor that correlates with his heater so he's kept as comfortable as possible.

The red glow at his ring and pinky fingers is a pulse oxymetor that keeps track of his oxygen saturation.

Pressure bandage at his hip so the artery and vein that were catheterized don't bleed.

Blue leg with no pulse due to the large clot in his femoral artery.

IV in his foot giving him one of many blood transfusions.

27 comments:

Pyjammy Pam said...

My heart is in my throat. That sweet little boy is in my thoughts. I'm so sorry yall are going through all this. :(

Misty said...

im kinda at a loss for words but i want you to know that linus and family are in our thoughts and prayers. it saddens me that you and trina have to experiance this. i.am.sorry

abmayfield said...

I have no idea what to even say other than Lori and I are keeping you all in our thoughts and prayers. I've also added you to our prayer list through a friend.

Lots of love...

Anonymous said...

Your little guy is such a fighter. All your family are in our thoughts and prayers.

Raine

Sha said...

My Family and I continue to keep Little Linus and your family in our thoughts and prayers!

Pomegranate said...

those pictures made me catch my breath and left me in tears. poor little linus. thinking of and praying for you guys.

N said...

I can't help but cry looking at those pictures. My heart is in so much pain thinking of you guys and your precious boy. He is so gorgeous, and I love seeing the pictures of him. I am hoping and praying in the ways I know how that he is okay.

H2 said...

All I keep thinking is that someday a strapping young man is going to look at these pictures and go "Mom, was I really that small?" Hugs

Lucy said...

Well thats...horrifying. So sorry. Keeping you all in my thoughts/prayers/wishes.

Schroedinger said...

This is heartbreaking. I can only imagine the pain and fear you are living in. My best thoughts to you all.

Tae said...

I have been a silent lurker for some time now and I just wanted to say to you both, My thoughts and prayers are with you during this difficult time. You have three miracles and they all will be together again soon.

jessie said...

Oh poor baby Linus. I am thinking about all of you.

Nicole said...

Sending every ounce of love, strength and healing energy I have to Linus and to you all. I will be keeping all of you in my thoughts.

K J and the kids said...

Bless his tiny little heart. I'm so sorry guys. I'm eagerly waiting for part 4 to come around with less tubes and wires and more pink extremities.
Lots of prayers guys.

Chrisje said...

Thank you for taking the time and energy to keep us informed - I am checking every day, hoping to read good news, and dreading posts like these. You are so brave and so are all your boys (Simon & Dexter are probably feeling all the sadness around them too). Plenty of well wishes and healing energy from me to wherever you need it most. Jade

Shely said...

All I can do is sit and shake my head... I dont understand all of this! I dont know how all of this happens to one little boy! Its not fair. I am SO so sorry that little Linus has to go through this as well as you and Trina and his brothers. I will continue to pray for him. Thank you for taking time out to keep us updated! We are all pulling for him!

Sabrina said...

Thank God that Dexter and Simon are doing so well. I'm so glad they are home, and growing, and able to be left with a loving, trusted family member like your Mom while you go to the hospital to be with Linus. As with the other posters, I don't understand how so much horrible things can be happening to one innocent, tiny little baby boy. It is absolutely heartbreaking. Linus is in my thoughts, you are all in my prayers, and I hope there is some good news around the corner for your family.

Ms. Diva said...

Hugs and prayers for you both and your little boy!!!

anofferingoflove said...

i'm looking forward to part 4 also and hoping for some good news ahead ((()))

Stacey said...

I have tears in my eyes after reading this. That poor boy is so strong to go through all of this. I'm sorry you all have to go through this difficult time and I hope that part 4 brings on some good news!!! Thinking of you all!!

tbean said...

Heartbreaking photos, heartbreaking stories. You are some strong moms and Linus is a fighter. Praying for good news.

pugmama said...

I'm so sorry you are going through this. While you can't control his health issues, it does sound like you have armed yourself with knowledge about his condition and treatments and that you are being excellent mothers by being such strong advocates for him.

Heather said...

I'm sending you buckets, and buckets of good thoughts, hopes and wishes.

Little linus is such a fighter. These pictures are so sad, but it is what he has to deal with every day..such a strong little babe. *hugs*

shroomie said...

my heart and all my thoughts are with you and your family. Sending good thoughts to Linus - waiting anxiously for Part 4.

welcome2ourworld said...

Those pictures made me cry. Beisdes all of those tubes and stuff...he is sooo cute...we will keep you in our prayers.

poppycat said...

The story itself is so painful to read but the pictures are devistating to look at. Poor tiny boy, trying so hard. I can't imagine how you felt, how you feel, as you struggle along with your son. My heart goes out to you.

Anonymous said...

you are both so lucky to be blessed with such beautiful babies. i wish only the best to you and your family, especially baby linus<3 he is such a trooper