Thursday, March 3, 2011

Post Surgery Update

So much has happened in the last 4 days. It seems like a year ago I was headed down to the hospital to spend some quality time with my boy before they took him into surgery. It was pouring as I drove to The Medical Center. Thanks to high school English, I couldn't help but think about the symbology of rain in literature. Would this rain be looked back on as an omen of sadness and despair or seen as washing away the past for a new beginning, a rebirth? Apparently the combination of dread, sleep deprivation and high doses of caffeine can cause you to wax philosophic.

I got to spend about an hour with Linus before being taken to pre-op. My dad, Trina and I all took turns holding WeeMan as we waited for them to come take him from us. Every few minutes someone new would come by to explain their role in Linus's care and have us sign their department's waivers and releases. I got a good feeling from each of them and it was reassuring to know he would be in their hands. When they finally came to take him, he was calm and even flirted with the woman who carried him off. Seeing him watch us over her shoulder as they walked away completely undid me. Trina and I held each other and sobbed while my dad wrapped his big arms around us both. I kept seeing the image of his sweet little face peeking over her shoulder and couldn't help but wonder if that was they last time I'd see my baby.

A nurse came down and gave us updates every hour and a half. She never had any specifics and that was kind of maddening to someone who finds comfort in the details. The time seemed to fly by or creep along with no real rhyme or reason. We were given a very basic timeline of 6-10 hours so we were shocked when the "update nurse" said she believed the surgery was nearly finished around the 6 hour mark. We learned that our surgeon was able to create a better than "best case scenario" set of procedures! Instead of doing the mitral repair, aortic annulus expansion and Ross procedure, he was able to repair both the aortic and mitral valves. This change of plans, like most things, has pro's and cons. The pros are enormous in that a less invasive procedure has a lower death rate, a faster healing time and the big plus of not having any foreign material added. The con would be that his valves are still far from normal and he'll need more surgery in under 5yrs instead of 7-10yrs. When I asked the surgeon to speculate on when Linus would need another surgery and what it may be, he was very vague. When asked what the chances were that he'd eventually need both valves replaced, his answer was a definite 100%. In the mean time, we just hope that Linus's own revamped parts take him a long long way.

Seeing Linus after surgery was both a shock and a relief. I was SO grateful he made it through surgery without any major complications and he didn't look as bad as I was imagining. At the same time my poor tiny baby was a tangle of probes, stickers, wires and tubes. He was surrounded by machines and was, of course, now sporting the "cardiac warrior badge" on his chest. I was afraid to touch him, he looked so fragile.

These past few days have been rough. It seems like every hurdle we get over leads us to another problem to tackle. It's exhausting riding this emotional roller coaster. Monday was plagued with high left atrial pressures and low venous pressures. He was anemic and received 2 blood transfusions. Then he started get agitated and had to be put under a deeper sedation.

Tues his atrial pressure was mostly under control, but every time he started coming around, his blood pressure would drop drastically. This is exactly the opposite of "normal". Once again they had to keep him deeply sedated. They were using both morphine and versed every few hours. They were also tweaking 2 pressure meds, 2 diuretics and drastically lowering his fluid intake. Nothing seemed to work. To combat his crazy pressures and his anemia at the same time, they used a controversial tactic. A doctor came in and aspirated 100cc's of his blood an replaced it with 30cc's of packed red blood cells. The thought was that while he had too much blood to let his heart beat properly, it was dilute blood causing his anemia. This crazy trick worked...for about 3 hours. Then the pressures were back to being nuts. *sigh*

Wed his wonky blood pressure issues resolved themselves and they were able to remove the pressure probe from his heart. He then popped a fever of 102' so they started him on antibiotics and cultured his blood, sputum & urine. Since he was finally allowed to wake up properly, he started breathing very well on his own. After some volume support trials he was able to be extubated. He was instantly calmer with that tube out. His hourly blood test results came back a little while later. We learned that his sodium levels were alarmingly high. Only 2 points away from the "seizure inducing level" apparently. They started putting a small amount of sugar water through his NG tube and upped his IV fluids just a bit. This kid does is usually on a strict fluid restriction so it's a difficult dance. About an hour later Trina was able to hold him for the first time. It was obvious that moving him was uncomfortable, but he was so at ease in Trina's arms. Later when she put him down he was very upset. Poor little guy is used to lots of snuggles and he's been in bed for the majority of the last 4 days. Last night he blew his arterial line after having it in a solid 3 days. That's not bad for him. Luckily they still have a central line they can use for blood draws and such.

Today brought us slightly lower sodium levels, another blood transfusion, another fever and some vomit. Linus was allowed to drink some clear electrolyte fluid today. His first oral feeding since Sunday night. He took 3oz like a champ. That's more than he's been able to take orally in a long time. Later on they decided to try him on a little breast milk. That didn't work out so well. It all came back up. It's not a big deal, just a small back step. We're SO used to those. I actually get a little nervous when things go "too right." They were able to remove his chest tube, then tonight he blew one of his IV's, has an elevated respiratory rate requiring diuretics and was taken off one of his pressure meds. All in all things are going ok. Never a dull moment with this kid. It's scary then boring then emotional then confusing then scary again then tiring then sweet...and on and on and on.

Laughing at Mama in Pre-Op.
Hanging out with Papa.
Waiting is tiring.
My poor sweet boy after surgery. :(
When he got back from surgery, his binky was in a specimen jar. :)
Starting to come to on Wed. Such sad eyes.
The knot in one of his blood transfusion lines looked like a heart to me. :)
Finally off the vent!
Morphine dries your mouth out something fierce. He was NPO but we were able to moisten his mouth with this little sponge. He'd get so mad when we took it away.
Trina was able to hold him for the first time Wed evening.

A photographic tour of Linus and his gear post-op. May be too graphic if you have a weak stomach or soft heart.

All the equipment keeping him stable.
Right after surgery. He was so sedated his eyes wouldn't stay closed. They were drying out so I had them order him up some goo to keep them moist.
His ventilator tube. He couldn't breathe on his own for most of the first 2 days. The tube in his left nostril went into his stomach.
This little container in the bottom right collected the nasty stuff suctioned out of his stomach.
This chest tube siphoned of extra fluid in his chest cavity so it couldn't cause pressure on his lungs or other organs.
This box kept a slightly negative pressure in his chest tube and collected the fluid so it could be measured.
The little metal spiral under the "X" of tape is a pacer wire imbedded into his heart muscle. The clear tube to the bottom left of it is a probe inserted into his left atrium to read the pressures there.
In the case of a wonky heart rhythm, this external pacemaker would be hooked up to the pacer wire so they could regulate him temporarily until it was normal again.
WeeMan is back in soft restraints. Can't have him flailing about or ripping out any of these tubes or wires. There's a peripheral IV in this wrist.
He has a PIV in his forearm (blue butterfly), an arterial line in his wrist (tubes and syringe) and a pulse oximeter on his hand (glowing red light).
He's got a central line in his left femoral vein that has a catheter leading into his heart. They used this for his blood transfusions, to draw blood and to measure his central venous pressure. The blue tube coming out of his left diaper leg is a foley catheter. It drains his urine.
This box on the end of his bed collects the urine for examination and measuring.
The pad on his right foot takes a constant temperature reading. The band on his left ankle is his ID badge. The white/orange deal in the left bottom corner is a teeny blood pressure cuff.

38 comments:

Nicole said...

I've been hoping and wishing and praying and thinking of you all. I'm so thrilled he made it through. I am in absolute awe of all of you, your love and strength is amazing.

Jessica said...

You, Trina and Linus are amazing. My heart goes out to all of you. What a strong little guy he is and what strength you mommies have to help him through this. May God continue watching over all of you. Keeping you all in my prayers.

Pomegranate said...

i'm so glad it went well. the pictures are frightening, but the same time i can't help but think how amazing medical technology is.

praying for a better-than-best-case post-op scenario.

cindyhoo2 said...

I am so glad the surgery went well. Your little fighter has been on my mind. All those tubes and machines must be so hard to see attached to your baby. What a champ!! Sending strength to you and Trina.

Anonymous said...

Linus that sweet baby, is in my thoughts and prayers. He is such a brave little man...and so are his mommies. I'll continue to keep healing thoughts coming your way. You have a such a beautiful family. Thank you for sharing this journey, those are some scary pictures, but through all of the stuff all I see is a sweet baby boy. Leslie

tbean said...

Thinking of you constantly and standing amazed at your collective strength and awed at the unfairness of all you, Trina, and Linus have to endure. Hugs.

Movie Gyrl said...

OH Thank God everthing went well. I was anxiously waiting on this update post. Always thinking about you guys and praying that all continues to go well. You are all very strong!! Linus has the best moms ever!! Sending you all comforting hugs ))))))

N said...

I am so thankful to read this post, and so grateful that he's okay right now. I know things are tough, and "okay" is relative, but I've been thinking of you guys all week. Sending much love, and keeping you guys in my thoughts. <3

Heather said...

I'm so glad that me made it though! He is such a fighter. What a strong man he is going to grow up to be. And, of course, he has the strongest mommies in the world. I am in awe of your strength.

zunzunbobo said...

what a fighter. glad surgery went better than best case. hope things are on the upswing, that linus gets to grow and grow and play with his brothers and be the happy baby that he is! sending the best of recovery thoughts...

allie :^) said...

oh i'm so glad you posted! i've been checking in but know how hard it is. all of these pics looked all too familiar!!!!! :) hope your hospital stay is not dreadfully long...love all of the pics and sooooooooooooooooooo glad surgery is over! :)

tinyblossom said...

The photo of you and Linus smiling at one another is this incredibly sweet. I look at it and see this amazing love between you and it is truly beautiful. I keep wondering how you and Trina do it in the face of all of this adversity and that picture says it all. Linus is a fighter and he has sooo much love and support. It is such a relief that he made it through surgery and is stable. Sending lots of healing thoughts your way.

Little monkey said...

This post made me cry! I can't even imagine the strength and courage you two have. I'm so happy he made it out of surgery ok. Will be praying for a speedy recovery.

jessie said...

I can't even imagine how hard this must be.

A+K said...

Your family has been in our thoughts and prayers. So happy to hear that Linus is doing well in recovery! Wishing only good things in the days and weeks to come!

Kara said...

Praying for all of you like CRAZY!!!

Stacey said...

This post makes me teary eyed to see your precious son in so many wires and tubes... Thinking of you and your family through all of this.

thelesbiannextdoor said...

Glad the surgery went well, and sending good thoughts Linus's way for a full and speedy recovery. We're all rooting for all of you!

Kirsten said...

Those pictures just break my heart but I am glad to see read that it went well. Sending lots of love and healing thoughts your way

txmoms2b said...

I've been following y'alls story since early in trina's pregnancy, and i just wanted to say how much I admire y'alls strength and that your family is gorgeous. Little Linus has been through a lot, and we send him warm thoughts for a speedy recovery. From what I gather from past posts, we're in close proximity, so if ever you guys need anything...my DP and I would be happy to help (big or small).

jade said...

Oh my, I don't know what to say, I am so sad and so happy at the same time. I have tears rolling over my cheeks, but what a relief you got through this one as well. Thank you so much for keeping us all informed! Fingers will remain crossed over here in tiny Belgium, kindest greetings, jade

H2 said...

I love love love that you did the pictures. As scary a situation it is, you're going to totally thank yourself for documenting and taking all the pictures. He looks pretty great all things considering.

His zipper is really really really good looking. Very pretty in terms of ones I've seen in different ICU's.

Things are going well and I'm so happy for your. We're praying for you all. Even our daughters, Angie and Lulu, know your story and ask about the triplets sometimes.

Teaberry said...

wow, he is such a little fighter. as are his mommies...

Tae said...

Hi.. You don't know me but I have been following you and Trina and your precious angels since the day of their birth and my heart goes out to all of you. Having lost a child, I can understand the fear so I took it upon myself to start a prayer chain for you and your wonderful family. I wish you all nothing but peace and continue well-being.
My thoughts and prayers are with you all everyday. Thank you for taking the time to post all that you have. I know it takes a lot to be away from your family right now so thank you.

abmayfield said...

You and your little family are such an inspiration. Every time I see a picture of you there are smiles. With everything you are dealing with it's absolutely amazing that you still have a great and positive outlook.

Bless you all and I'm keeping you in my thoughts and prayers.

Next in Line said...

You are all such troupers. What lovely pictures of him snuggling with all of you before surgery and with Trina after. Sending you love and strength.

Courtney said...

Some of these pictures and things you're explaining, are all too familiar and I can't help but cry seeing everything again. You and Trina are such amazing women and mothers. There is no doubt that you 2 were blessed with these babies for a reason, as 'someone' knew you would be able to handle everything you will be dealt. Hang in there...you have a lot of people praying for your family!

Lucy said...

It sounds like things went well, or at least as well as they can in this situation. My partner's parents lost 2 infants to heart problems 30 years ago. Its amazing how far medicine and tech have come since then! As always- wishing and praying for all of you!

Barbara C said...

The Education/Lactation Dept. at Woman's Hospital is following your story with great interest and respect. Good luck.

Mommy with Many Gifts said...

I can't even imagine what you all are going through... I admire you and Trina sooo much!! There are so many people out there praying that Linus heals and everything will be okay for all of you. Thank you so much for keeping us updated... you have us all on the edge of our seats!!! I will continue to pray for your little man.

Nanettee said...

Even through all that you are going through, you still manage to tell Linus's courageous story! We are all hoping for the best and some new pics of all three together again! Much Love... <3

Shelby said...

Thinking of and praying for your family during this challenging time. Linus is such a sweet little fighter, and he is as blessed to have you and Trina as his mommies as you are to have him as your son.

Kimberly said...

Glad to hear the surgery went well! Parts of this post just broke my heart; I had twins in the NICU for 23 days and I thought all of their tubing was bad. My boys didn't have anything on Linus! You all are amazing! I wish you continued luck on his road to recovery!

Michaela said...

Ooooh, THANK GOD the surgery went well. We are not commenting a lot here but we are with you all the time. *sigh* *big relief*

The pictures made me she shed some tears. Ooooh...I am soooo glad you are all well.

poppycat said...

Like everyone else out here, I would give just about anything to see Linus well and all of you off this roller coaster. I can't wait for the day you all get to stop being so brave and strong and just get to enjoy.

Your poor little man has been through so much and seeing those pictures brings me to tears.

We are, as always, rooting for you and Linus and thinking of you often.

boombamama said...

Amazing post.

Sabrina said...

Good grief, what an ordeal! I'm so glad you are all on the other side of this surgery now, and I hope and pray that he's much, much older before you have any more scary surgeries on the docket! How terrifying to watch this tiny little man go through all of this while his brothers are at home perfectly healthy. Sigh, I'll never understand why these things happen to children. I'm glad he's healing up, and praying for his healing.

mama bea, bao in the oven said...

Holy FUCKING CRAP. I am just catching up and I can't believe what all you have been through. You are amazingly strong. Amazingly. I am thinking of all of you.