Thursday, March 24, 2011

Surgery #2 In Photos

I keep trying to write this blog, but between my shifts at Linus's bedside, caring for Simon & Dexter, trying to work and Linus's ever changing condition, I'm finding it impossible to get my thoughts organized enough to type out. I promise to post a detailed blog soon. I will tell you this, Linus's mitral valve had a 2nd repair as opposed to being replaced. True to form, he is proving to be a difficult and unpredictable patient & this surgery has yet to be labeled either success or failure. His family, friends and medical team are all hoping he stops having so many set backs and starts making steady forward progress. Here are some pictures to look over while I gather my thoughts.

Holding Trina's hand the night before surgery.

The day after surgery. Still looking pretty beat up.

Two days after surgery. Starting to look a little more like himself. The dark line going from under his right cheek to the side of the bed is delivering a blood transfusion into his central line.

This inflatable raft looking deal is called a Bair Hugger. It fills with heated air to keep him warm. His temp dropped to around 92'F a few days after surgery!

Trina taking advantage of his semi-conscious state to trim his nails. He still curled his fingers in protest.

Photographic Tour Of Linus Post-Op: May be difficult to look at...

Linus's room with all of his gear.

Full body shot right after surgery

The pad on his forehead is a NIRS (near infrared spectroscopy) that helps monitor his cerebral perfusion. In other words it lets us know if his brain is getting adequate blood flow.

The tube taped into his nostril is attached to the ventilator that breathes for him. The tube in his mouth went into his stomach to remove any gas or extra fluid. The circular stickers on his shoulder & chest are EKG sensors.

Linus has a central line is in his jugular. It has 2 lumens, or access tubes, so all of his continuous IV fluids and meds can go through one and the other can be used for PRN meds or blood transfusions. It also takes real time central venous pressure readings.

The tube with blood in it is his chest tube. It pulls the extra fluid and blood out of his chest cavity. The clear one is his peritoneal dialysis tube.

This box has a slightly lower pressure than his chest so the fluid drains into it. This way it can be collected and measured.

The probe with the LAP sticker goes through his chest wall and into his heart. It measures the pressure in his left atrium.

This is his peritoneal dialysis pole. The bag at the top contains the sugar water that is pumped into his abdomen.

The green "blanket" is a warmer that his dialysis tubing sits inside. If the fluid wasn't warmed, his core temperature would drop drastically.

This is where his dialysis fluid is collected and measured. It was pink the first day and has slowly turned to a pale yellow.

The blue cuff is a soft restraint. Linus is very "grabby" and would gladly rip any and all tubes and wires from his body if given half a chance. The tan bandage on his thumb is a pulse oximeter. It measures the oxygen perfusion to his extremities. The bandaid on his forearm is where his IV was removed after it clotted off.

He has an arterial line in his left wrist. This is used to take "real time" blood pressure readings and to get blood samples to measure arterial blood gas. He has another pulse ox on his middle finger.

After they placed his wrist arterial line, it gave them some trouble. They put a 2nd arterial line in his femoral artery as a back up. This was able to be removed after a day or so when his wrist line proved to be reliable.

The white oval on his right foot is a temperature pad. he has a 3rd pulse ox on his left big toe. The tube to his left is his chest tube and the tube on his right is his foley catheter. This drains the urine out of his bladder.

This is where his urine is collected, measured nd checked for color changes.

Monday, March 21, 2011

Back To Surgery

Linus's last 2 echos have shown that his mitral valve has severe regurgitation. It lets just as much blood flow backwards as it does forwards. He has developed pulmonary hypertension as a result. Linus has been difficult to keep stable since he crashed on the 11th, but his weekend it got worse. Despite the fact that he is on a minimum dilution protocol and 4 diuretics, his body started taking on fluid again. Fluid is practically pouring into his lungs. Now his kidneys are starting to show the effects of the medications. We're losing ground. Tomorrow morning he will go back into surgery and have his ruined mitral valve replaced by a mechanical one. This procedure is very dangerous. It has a 20-36% mortality rate in children under 5 years. The fact that he is under 6 months puts him at the top of that statistic. He will have to be on blood thinners for the rest of his life so that clots do not form on his new hardware. This in itself is dangerous. It is very difficult to regulate blood thinners in an infant. They grow so quickly and have a tendency to spit up and "lose" some of their dose. Too much and they can bleed out, too little and they can develop fatal clots.

Right now I'm mostly numb. A few days ago when I felt the plan shifting from "lets try to get him as healthy as possible so we can avoid surgery" to "lets get him as healthy as possible so he does well in surgery" I had a good, long, thorough breakdown. I think I cried for 4 straight hours. It was a great pressure release. I'm still scared to death, but I've come to accept that we are out of alternatives.

A diagram on how the replacement is done.

His new valve will look like this.

Saturday, March 19, 2011

What Can We Do? + A Mini Linus Update

We have had an overwhelming number of people ask us what they can do for us. Up until now we've mostly answered "We're doing ok, but thank you so much." This answer is no longer working as it's obvious that we're struggling. Not only that, but people genuinely want to help, to feel needed, to be a part of WeeMan's fight. I completely understand that. I've always been in the "it's better to give than to receive" category. Unfortunately that means I have a hard time asking for or accepting help. Giving is so cathartic, so energizing, so uplifting. Being in need is none of those things. These feeling are something I have to work on. To kick off my journey to acceptance, I present you with this list of things you can do if the mood strikes you.

1) Keep us in your thoughts. Say a prayer. Light a candle. Wish us well. Send warm fuzzy feelings. However you express your love and support, we feel it.

2) Give blood. Linus is up to 18 blood transfusions now. He's also used other blood products such as albumin and packed cells. It'll take me forever to replenish what he's already used, let alone what he will continue to need.

3) Visit Hope's page and grab a Linus button to display on your own blog.

4) Help Linus and other congenital heart defect survivors by sending donations in honor of Linus to any of these non-profit organizations:

5) If you'd like to help specifically with Linus's growing medical costs, I've installed a PayPal Donation button to the right.

I promise to write a detailed update about Linus very soon. Maybe even tomorrow. I keep trying to, but I can't seem to find the strength to type it all out. I will tell you this, he is not doing very well, but continues to fight. At this point there is a very good possibility he will be back in surgery next week. The procedure they're proposing is very dangerous and our surgeon is trying to avoid it at all costs. Unfortunately we're running out of options.

So swollen. He looks like a miniature sumo wrestler.

No matter how sedated my boy is, he always wants to hold your hand. Sometimes all he can manage is a little finger twitch when your hand touches his. I assume this is because he hasn't been held in weeks so this is the closest thing he gets to a snuggle. Whatever the reason, it warms my heart.

I was so relieved when the swelling went down & he was finally able to open his eyes. If only it wasn't such a sad expression. I miss his sweet smile SO much. I ache to see it again.

Linus's chest xray. The lungs should be a clear dark black instead of that hazy grey and neither his heart nor liver should be anywhere near that big. The 6 twisty tie looking things are sternal wires. They're keeping the 2 halves of his breastbone together so they can heal. the bright circles and wires are his EKG leads.

This cute little guy showed up in Linus's bed the other day. it's not uncommon for a new blanket or toy to be dropped of by volunteers. They are so sweet.

Thursday, March 17, 2011

Deep Heartfelt Gratitude

I can't even begin to express how much the love and support we have received as of late has touched me. People have been crawling out of the woodworks to offer their time, prayer, hope, financial support, babysitting, ears and shoulders, anything and everything I could ever imagine. I am shocked and overwhelmingly moved by all of this. This has been such a difficult and soul crushing few weeks. I know for a fact I wouldn't be where I am mentally and emotionally without all of you. The weight of these days are too heavy for our little family. Luckily we have legions of kind souls willing to each take some of our burden. I am forever in your debt. Below is a very incomplete list of just a few of the kindness we have experienced as of late.

My mother has spent weeks on and off caring for my boys while we tend to Linus and all of his needs. She even made the 6 hour trip in the middle of the night when Linus crashed last week. My father came to support us at the hospital during Linus's surgery and drove in immediately when Linus went down. He stayed the weekend and made sure we ate and drank and slept properly. He even went out and bought us camping pads so we were more comfortable sleeping in the waiting room on the nights that we didn't get a bed at Ronald McDonald. My sister has watched the boys several times throughout their lives and more recently has taken care of them while Trina and I switch out for our shifts at the hospital. All of my siblings put their bosses and lives on notice that if we need them in any way, they would drop everything and come.

Trina's mother and sister have both flown in and worked themselves ragged helping us care for the boys, the pets and the house day and night. Her other siblings are scheduled to come visit at separate times so the help is spread out over time giving us better long term coverage. Her family also chipped in to hire us a maid to help us with the house so we could focus on our boys.

My coworkers know we have to make the 2-2.5 hour round trip to the hospital every 2 days so we can switch out so they passed around the hat and collected money to help us pay for gas.

The Erika Kate Foundation , an amazing charity, has provided us with both emotional and financial support during these trying times.

Several very good friends (Fiona, Kasey, Vada & Stacey to name a few) have come by the house to help us care for the babies, have come to the hospital and helped us care for ourselves and have made themselves available day and night to listen if/when we need to talk.

Friends and family have started a FaceBook event: A day of prayer for Linus & group: Linus Prayer Circle. To my complete shock and amazement more than 900 people have joined one or the other. My inbox is filled daily with friends, family and complete strangers alike wishing us well.

So many of my family, friends, blog friends, fellow triplet mamas & heart baby mamas text, call, email, message me, leave comments or write me daily. These thoughtful words help me through the hard times. I cherish every single one.

My friend, Hope, made 3 gorgeous blog buttons to share with anyone who wants to post them. They'll help spread awareness for CHD and Linus's fight. Not to mention plaster my adorable child's picture all over the internet for everyone to admire. How can you not fall in love with that face?

My dear friend Traci sent me the most perfect painting of a Robin's nest with 3 blue eggs and made a donation to the Erika Kate Foundation in Linus's name.

The Prayer Shawl Ministry of Bath United Methodist Church sent Linus a beautiful handmade shawl. Betty Harris, a woman dear to my Aunt's heart, prayed for him as she crocheted it. It was then passed around the congregation so they could all touch it while they prayed for comfort, love and compassion. Since it arrived, we have received so many compliments on Linus's "blue blanket." I can picture him curling up with it for years to come.

Dozens of doctors, nurses, techs, therapists and volunteers at Texas Children's have made it their personal mission to care for Linus and keep him as comfortable and healthy as they possibly can. They continually go above and beyond what is in their job description. So many of them have stopped by his room to check on him and chat with us when they were off the clock or not "assigned" to him. You can really tell how much they love our little guy.

I could keep writing all night, but I won't. It's late and past my bedtime. Thank you, thank you, thank you to everyone listed and to everyone who's not. You all have made the last 5 1/2 months bearable and we would be completely lost without you.

Tuesday, March 15, 2011

More Questions Than Answers

I don't even know what to write right now. So much has happened, is happening and no one agrees to what it means or how to fix it or if it even needs to be fixed. For someone who likes answers and to stick with one track, this is absolute torture. Add the fact that all of this revolves around my son's life and I may seriously go insane. Below is a very bare bones account of the last week. I can't bring myself to type out all of the details.

We've continued to fight to get Linus's fluids in the right range. He has the teeniest of windows between dehydrated and overhydrated. Now he's started having wacky situations where his body and veins are dehydrated and his heart and lungs stay congested with too much fluid. How do you even begin to treat this??

After his echo on Wed showed some "slight improvement" it was decided that he was stable enough to be treated on the cardiac floor instead of in the ICU. He was there for a day and a half before things went awry. He was really fussy so Trina had them come give him Tylenol thinking it may be pain. He started screaming and wouldn't stop. Tria buzzed for a nurse, but no one came. Then Linus stopped moving and turned blue. Trina ran into the hall and yelled for help. His heart rate was in the 70's and his O2 sats were in the 80's. They gave him oxygen and he came around. They decided it was a "vagal response." The charge nurse called upstairs to the ICU to let them know what happened and they said they'd come get him. Ten minutes later he was back in the ICU.

Soon after he got there, he had another episode that mirrored the first. They stabilized him again and started a blood transfusion after determining he was anemic. Linus started going downhill a third time, but didn't stop. He was crashing. His heart rate reached the 30's and I'm not sure how far hit sats plummeted. They called codes, grabbed the crash cart and started CPR. Trina, there alone, was kicked out. She was hysterical when she called me. I was on my way, but still 45min out. I couldn't believe this was happening. I got to the hospital before anyone had updated Trina. It ended up being an hour and a half before we were told he was stabile and we could see him. He was under an air filled heating blanket, on a ventilator and hooked up to more tubes and wires than ever before.

Since then he's had several more of these episodes, but being on the ventilator and hooked up to meds keeping his heart rate up, they haven't been able to progress as far as that big one. Everyone has a different opinion on how his case needs to be handled and no one seems to agree. It's maddening. According to today's echo, Linus is worse off now than he's ever been and it seems that no one has a clue why. I'm hanging onto my sanity by a thread.

Right before his transfer out of ICU.
Looking pitiful in his new room.
Looking out the window is almost as fun as watching TV.
Back in the ICU after he crashed.
Geting his 4th blood transfusion in 2 days.
Looking peaceful.

Monday, March 14, 2011


My first born's first tooth!!!

Monday, March 7, 2011

Linus Is Still In The CVICU & The Big Boys Brawl

Trina and I are trading places every day or two. I stay with the big boys while she stays with Linus and vise versa. It's so hard not being together, but at least this way we get to see more of the boys. We haven't really seen each other for more than 30min every few days, though.

Linus has continued to have complication after complication so he's still in the CVICU. So much for 2-3 days, eh? It's ok. I never believe their estimates. Linus doesn't ever follow the rules of logic and planning. It's just not his style.

I left his room around 2am Friday morning to take a nap and when I got back a few hours later he was on a CPAP. Apparently in my absence he had gone into respiratory distress. He was breathing very rapidly & his oxygen saturation was low. An xray confirmed that his lungs were full of fluid. The doctor decided to try him on a CPAP instead of reintubating him. I'm so glad he did, because it worked and is much less invasive. He was on the CPAP for the bulk of the day and was able to be weaned down to a nasal cannula then nothing the next day.

Saturday night I was taking pictures of him and his eyes crossed. That had never happened before so I went to get the nurse. When we got back, his eyes were almost back to normal. She looked him over and said he was probably just tired. She left and when he did it again I went to get her again. She saw it "full force" the second time and agreed a doctor should see it. He said that since he's alert and his vitals are normal that it didn't appear to be a seizure. He mentioned that he may have always done this and that I might not have noticed. It came on suddenly and he's been doing it off/on since then. Sometimes it's both eyes, but it can be only the right or left. When it's only one eye, he can track things or look at you with the "good eye" and the other one stays stuck inward. At this point we have no idea what's causing it and are hoping it magically disappears. If it doesn't, we'll have to follow up with an ophthalmologist and possibly a neurologist.

Today Linus's lungs were wet again so he was having trouble breathing...again. They lowered his feeds, upped his current diuretic's dose and added a second diuretic. When Trina asked why this kept happening they said that his mitral valve is leaking pretty bad and that may be the culprit. They're going to start him back on his heart failure medicine. The hope is that it will give his heart a rest and the newly remodeled valves will heal faster stopping the leakage. My poor boy. Will this never end?

These pleading eyes kill me.
He keeps a firm grip on my finger all the time. Half the day is spent with my arm half numb and cocked at a funny angle just so he can reach it easier.
Getting a bedside echo while hooked up to the CPAP. How uncomfortable does that thing look?
Sleeping much easier after the CPAP is removed.
We don't have a mobile so Linus has taken to watching TV.
Law & Order is a kid's show, right?
Both eyes crossed in.
One eye crossed, one eye looking at me.

Earlier today Dexter was hanging out on his playmat and I was holding Simon. I put him down next to Dex so I could run to the restroom. I don't get much time to myself, but I should at least get to pee alone, right? The boys started squealing and there was a thumping noise. What the hell? When I get back out to the living room I see them beating the crap out of each other. Apparently they both want the funky hanging zebra-like toy and it has made them forget their manners. I grab the camera, of course, and snap a few pics of the fight. Then I say "Boys! What are you doing?" and they go still. Both of them put on their most innocent faces and look at me like they don't know what I could possibly be referring to. Brats. :)

Kung Fu fighting!
"Yes mother? We were just quietly discussing how much we both like the zebra."

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.