2011 Color Photography Project
Thursday, January 27, 2011
So Monday came and went without a doctor bothering to come tell us what the team had decided to do about Linus. Trina put in 2 calls to our cardiologist's office with no reply. Waiting for a decision to be made is always hard, but being left in the dark after a decision is made just pisses me off. Finally Tues morning DrHD came to tell us that it was unanimously decided that it was time for open heart surgery. Trina expressed how confused we were with what was going on. She asked why he had told her the procedure was a success and said it could be 6 months until the next step when here we were getting told 6 days later that it was time for that next big step. He explained that the catheter WAS a success in that the aortic valve had been opened more than it ever had. If that was the only thing that needed to be done for Linus, his test results would show significant improvement and his symptoms would have been rapidly vanishing. They were not. He said he had really believed that this procedure would have bought us a decent amount of time and that he accepted the fact that he was wrong. We appreciated his honesty.
Later that afternoon, Trina received a call from the surgeon's nurse. DrM would come to Linus's room at 8am Wed morning to talk to us about the surgery details and to give us a timeline. My mom drove in so I could make the meeting. DrM was very no nonsense and laid everything out on the table. There are several options on how to "fix" Linus's heart and he won't know exactly what can be done until he's "inside". He expressed some concerns and was very up front about the pros and cons of each procedure he spoke about. Even though he threw a lot of information and medical terminology at us, we kept up pretty well. Luckily I had done some research on different surgical procedures used to treat Linus's different defects. The one thing that threw us both for a loop was when he mentioned that Linus's pulmonary valve had been leaking on/off in a few of his latest echos. No one had mentioned this before. That makes 3 valves that are now having issues. That in itself isn't great news, but the fact that the pulmonary valve being in good shape is an integral part of our "best case scenario" surgical option makes us worry in a major way.
He told us that his surgical schedule was booked for over a month, but that Linus can't wait that long. His condition is only getting worse and apparently the "healthy parts" of his heart are buckling under the strain of compensating for the defective parts. He wants to work on him in the next 2-3 weeks. They don't want him to go back into crisis before they act. Having him "healthy" will greatly improve his chances to make it through the surgery and heal without as many complications. They're going to look at the schedule, decide who to bump and call us back with a date and time. We told him we wanted to take Linus home while we wait for surgery. DrM told us that that wasn't how things were normally done, but he would allow it. We left the hospital that day. We have to go back in for a cardiology check up on Tues just to make sure he's doing ok and to see how his 4 new meds are treating him. I sure do hope that after his surgery, this kid's medicine cabinet gets a little smaller. He takes a ridiculous amount of medication each day.
This part will probably bore most of you, so feel free to skip it. I just want to have the technical stuff down for posterity. Basically Linus has two major problems that need to be fixed in order for him to start thriving. The first issue is that his aortic valve is a mess. He doesn't have the three requisite leaflets and both the aortic annulus (fibrous ring that houses the valve) and the valve itself are too small. Secondly his mitral valve is not formed properly and has become scarred and inefficient due to high ventricular pressures caused by his aortic defect. These two problems are now causing other problems. It's like a cardiac failure snowball. Since the mitral valve isn't doing it's job, his left atrium is enlarged. The high pressure in his left ventricle is also causing the heart wall there to become thickened so that it can not relax properly. This only magnifies the high pressure and makes all the other issues worse. DrM believes the best option for Linus is to repair the mitral valve, do an aortic annulus expansion and to perform the Ross Procedure (pictured in the diagram above). This would hopefully give Linus 7-10 years before he needs another open heart surgery. DrM said he would go to "extreme measures" to repair the mitral valve so that it did not have to be replaced. Not having a mechanical valve put in would save him from a lifetime of dangerous blood thinners. Expanding the tight aortic ring would allow a larger valve to be put there making it easier for blood to leave the heart properly. The Ross procedure is where the aortic valve is removed and replaced with the patients own pulmonary valve, the pulmonary valve is then replaced with a cadaver valve. The pulmonary valve will generally continue to grow in it's new spot giving the patient many more years before it has to be replaced again. Using a cadaver valve in the pulmonary position also keeps the patient from having to get a mechanical valve requiring blood thinners. This is where the importance of a good pulmonary valve comes in. If his is not in tip top shape, it can't be moved into the much more demanding position of aortic valve. We are hoping beyond hope that the leaking is a physiological issue caused by his aortic stenosis and not a physical problem with the valve itself. We won't know until DrM actually looks at the valve "in person" instead of onscreen. If it's not a good valve, a mechanical aortic valve will be used. This is not a good option, not only because of the blood thinners, but also because he will outgrow it fairly quickly and will need it replaced in a few years. I really hope that DrM's 3 prong surgical plan will come to fruition without a hitch. Linus has had enough complications, it's time something goes his way for once.
We can add the hospital's mobile to the growing list of items that have Linus's affection. The socks on his hands are to keep him from pulling out his NG tube...again...
Only a tiny bruise left from where they went in through his carotid artery. Look at that double chin. My little fatty fatty bumbalatty.
I wonder how long we'll have the same color eyes. :)
Wednesday, January 19, 2011
Linus's first 3 catheters were all done during his initial stay at the hospital so this was our first time having to bring him in for the procedure. We asked what the protocol was and how long they expected he'd have to stay in the CVICU. We were told that this procedure would only require an overnight stay and that he wouldn't go to CVICU, just the regular cardiac floor for 24hr observation. This is laughable because my son generally has every complication on the books and sometimes makes up new ones just to keep the medical staff on their toes. The plan was for Trina to stay with him in the hospital and for me to stay home with Simon & Dexter. I took 5 days off of work just to cover my bases.
Wed morning Trina took Linus in at 5am since he was first one the books. I was sad to be across town instead of with Linus, but someone had to do it. This was actually our choice. My mom offered to drive down so I could be at the hospital, but we decided we could handle it between the two of us. After all, we are capable parents and this would only take a few days, right?
They took Linus to the cath lab around 8:30 and called down occasionally to keep Trina updated. It took about an hour to put him under and to gain access. They tried using his right femoral artery again, but had to switch to his left. They were able to use his right carotid artery again with no issue. They took pressure measurements, ballooned his aortic valve and examined both sides of his heart and his valves. Once again he required a blood transfusion to bring up his H&H. The whole thing took about 4 hours beginning to end.
At the consult afterwards, DrHD seemed pleased with the results. He was able to balloon the aortic valve to 8mm, a full mm larger than the last ballooning session. This took the gradient from 42 to 18, the lowest it's ever been. He determined that part of the problem is that Linus's left ventricle is still never fully relaxing. This causes blood to back up into the right atrium which is, in turn, causing it to stretch and become enlarged. Unfortunately there isn't anything we can do about that. He did say that every drop of fluid he took in really affected him so he has to stay on fluid restriction, they were upping his Lasix dose and also adding a 2nd stronger diuretic. Yay, more meds... He said he hoped this combination would last 6 months before we had to do open heart surgery. I actually scoffed out loud when Trina related this to me. 6 months? Yeah right, the longest he's gone between procedures was 8 weeks and we stretched it to 11 with major intervention ie: hardcore meds and a feeding tube.
Linus was transferred to recovery where he should've only stayed for about an hour. Instead, he stayed for nearly 5 hours because he refused to wake up from anesthesia. They had to hit him with Narcan three times before he was awake enough to go to a regular room. They ran another CBC thinking he may need more blood. Luckily he was in the low normal range so his lifetime score stayed at a mere 11 transfusions. Over the next 2 days he had another CBC, had his potassium levels checked, an echo and a swallow study. So much for 24 hours, right? At least he avoided the CVICU and, all in all, everything was going pretty well. His heart rate and respirations were down and his oxygen sats were up. They told Trina that as long as the echo came back ok, they would send him home on Sat. Trina's been home only once and I've been to the hospital only once since Wed. I was so excited that we would all be able to spend a day and a half together before I had to go back to work. I miss my family.
Friday afternoon a cardiologist came in to talk to Trina. She said that Linus's echo did not look good. They found only a slight improvement from the echo taken before the catheter. According to the echo, the gradient was a 38 and the mitral valve had moderate leakage. She said they would be keeping Linus through the weekend and would be presenting his case to the team on Monday. It was her opinion that he would need open heart surgery sooner rather than later. We were crushed at this news. Once again we have one person telling us that everything is roses and another telling us the situation is grave. At this point I have no idea what to believe. I know there are always discrepancies between catheter measurements and echo measurements, but this seems extreme. Nothing to do now but wait til Monday when we can talk to the doctors and ask questions.
Blurry phone pic of Linus getting an echo.
Having a little sponge bath to wash off the funk.
Sometimes Mommy is even better than Food Bag. :)
Having the swallow study done. How cute is the tiny lead loin cloth keepin my future grandbabies safe from harm? :)
Snugglin with my boy.
My beautiful wife and child.
Sunday, January 16, 2011
We went in on Friday for WeeMan's echo and to possibly talk to the cardiologist again about surgery. Trina's mom is in town so we both got to go to the appointment. When the tech came to take us back I thought "Hmmm, she looks familiar". This would not be surprising considering how long he spent in the hospital and how many people have worked on him. She seemed a little snippy, but I didn't think too much of it. Not everyone has my winning personality. :) As she was starting the echo we had a very, um, interesting conversation.
Her: "Hey little guy, remember me? I've done several of his echos, in fact I think I did his first one"
Me: "Oh yeah? He was SO small back then. Can you believe how big he's gotten" *beaming with pride*
Her: "Yeah, he WAS small. You have two others right?" *watching the screen and wanding his chest*
Me: "We sure do. He's got two brothers at home with their grandma right now"
Her: "I couldn't believe he was all by himself a few times when I went up to CVICU. I thought to myself 'Man I can't believe this little guy doesn't have any family. He's so cute.' I asked the nurse if he was a CPS case because I wanted to take him home."
Me: *jaw literally hanging open*
Her: "The nurse said she didn't think his mommies would appreciate that and told me he was a triplet so that why you weren't with him all the time." *still looking at the screen*
Me: *shocked silence*
Her: "One of his brothers was still at the other hospital then, is he home now?"
Me: "Uh, um, yeah. They only spent 2 and 3 weeks in the hospital. It was really rough in the beginning when we had them in separate hospitals, then we had one here, one at Woman's and one at home. Not to mention Trina had complications that landed her back in the hospital. We were certainly spread a little thin. *thinking "Why am I explaining myself to this woman???"*
Her: "I just felt so bad for him being all alone. We have so many CPS cases come through here. I'd just take them all home with me if I could. It's so sad when they don't have anyone who cares about them"
Me: "Uh, yeah" *looking at Trina in disbelief*
Her: "OK, I think I have some good shots. let me go show them to the doctor to see if he wants any more" *walks out*
Trina: "Wow, she just couldn't let that go could she."
Me: "Nope, she made it pretty clear what terrible, neglectful parents we are..."
She popped back in to let us know that Dr HD was happy with the images and we could dress Linus. I was stunned at her complete and utter lack of tact. We spent as much time as possible with each of our boys. I will admit that Linus probably got the least of my time, but in my defense, he was the only one who was sedated and on a strict no stimulation order. I had to make a choice on where I was and the 2 conscious babies who needed to be held and touched and soothed usually got top billing. There was nothing I could do for Linus as a parent. I couldn't touch him or hold him or feed him. When I kissed him or talked to him he would sometimes stir and get upset causing him to need even more sedation. I visited him every single day for 2-3 hours. It's all the time I had. Even as I type this I remember feeling so helpless and useless back then. I was the walking dead running on caffeine, shock and fear. My family was spread across town and I felt inadequate. Looking back and using logic, I know we truly did the best we could for our boys, but the spark of guilt remains. Luckily for me I had someone so skillfully stoke it back to full fire if even for a short while.
After a few minutes our Dr's nurse came in to talk to us. He was scrubbing in so he couldn't come himself. Apparently he was very happy with something he saw in the images. he decided that it was worth doing one more catheter procedure before moving on to open heart surgery. They scheduled him for first thing Wed morning. We were both shocked and cautiously happy about the news. Of course we're still worried about how he'll react to another catheter since he always has complications, but it's SO much better than him going in for open heart. I really really hope this balloon lasts him long enough to let him grow big and strong before more aggressive measures need to be taken. After 6 months of age, the risk goes down significantly on valve replacement. That goal is in sight for our little fighter.
Oh yeah, the picture at the top of this post is my son gazing up at Food Bag. I told you he loves that damn thing. His Grandma says he's like a little duck that imprinted on something that wasn't his real mama. :)
Wednesday, January 12, 2011
Last week all three boys were tired and fussy after their pediatrician's appointment on Thurs. I attributed this to not only the vaccines, but to the very long day out of the house. My boys live in a fairly strict quarantine so they never leave the house and very very few people come over. This is not only due to them being preemies born in flu season, but also because of our fragile little Linus. He can NOT get sick. Not even a sniffle. Needless to say, 8hrs out of the house took them well past their limit.
Friday Linus still wasn't acting like himself. He was super needy and sleeping nonstop as long as he was being held. He was barely taking an ounce by mouth at each feeding. I wasn't positive, but I was pretty sure his retractions were worse. Saturday morning his breathing was definitely worse and he seemed a little pale. While I was at work, Trina emailed our cardiologist who is awesome about replying no matter what time of day. He even wrote us when he was on his holiday vacation. When she explained his symptoms (breathing hard, pale, not eating well, coughing occasionally) he said he would be on shift the next morning, but that Linus was too little and too fragile to wait and that we should take him in. We decided that we'd take him to the ER after I got off work. When I got home. Linus actually looked a little better. We waffled on whether we should take him in or if he could wait til his cardiology appointment on Tues. We decided to wait and that if he seemed worse again, we'd take him then.
A few hours later it was bath time for the boys. I bathed Dexter and he didn't hate it, pretty good for him. Then I bathed Linus and noticed he looked mottled. Then I noticed his fingernail beds were a bit blue. And his toes... Dang, change of plans, again. He needed to be seen now. I finished up his bath while Trina started getting things together for the two of them. Poor Simon, who loves the bath the most, had his cut short so we could get Linus ready for an outing that would most likely end with being admitted to the hospital.
At 5am, I was woken up by Trina coming into our bedroom. I was shocked to see her. I just KNEW they'd keep Linus. I asked how the visit went and she told me she didn't want to talk about it because she was mad and exhausted. Uh, ok. I dropped it, because I know what's good for me. Later she told me how furious she was and what a complete waste of time the whole trip had been. When she got there she had to wait forever, then they took an xray and a sputum sample. After waiting a ridiculously long time, she asked what the hold up was. The nurse told her that his oxygen sats looked good, his lungs were lungs were clear and that his heart didn't look any more enlarged than in his last xray so as long as the RSV test came back negative, they'd send them on their way. Huh??? What about an echo to evaluate his heart function or a CBC to determine if he needs another blood transfusion or a blood gas to tell us how hard his body is working to stay satted? Nope. They just wanted to see if he had a cold and to send him on his way. Trina was beyond mad at this point. When the cardiologist on duty came to talk to her he was dismissive of her concerns. He did not care that Linus had all the symptoms of unregulated heart failure nor that he was maxed out on his meds. He could've cared less that we were told at discharge less than 2 weeks ago that if Linus had ANY new or worsening symptoms to bring him back immediately. When Trina told him Linus was breathing to hard to eat by mouth without choking, his response was to stop feeding him orally, to put it all down the tube. Nice. Obviously these people were going to be no help at all, so she left. 6 hours worth of wasted time and energy.
Sunday and Monday he did ok. Not great, but not in crisis. We would offer him a small amount of food by mouth at each feed. Sometimes he'd get a a quarter or half ounce down, sometimes nothing. The rest went through his NG tube. He slept most of the time, breathed a little easier and we didn't see any more color changes. Tues he went to see his cardiologist who was less than happy to hear about his ER visit. When Trina told him about the doctor's advice on not feeding him orally if he couldn't handle it, he said "That's not exactly a solution now is it?" Ya think?
Unfortunately Dr.HD is not happy with Linus's continued downward slide. He doesn't think doing another balloon catheter would buy us enough time to make it worth it. The first one only lasted 3 weeks and the second one lasted about 8 weeks. These are not the long term results one hopes for with this procedure. He's going to talk to the surgeons about the possibility of repairing his aortic and mitral valves instead of replacing them. They might even be able to only replace the aortic and hopefully repair the mitral. Worst case would be replacing them both. Replacing a mitral valve on a baby under 6 months is very dangerous. They'd have to use a mechanical valve and he'd be on blood thinners for life. Not to mention that he would outgrow anything they transplanted at this point. This would require more surgeries and more transplants down the road. It's a nasty roller coaster you can't get off.
We go back on Friday to have the surgical consult and to have an echo. Linus should have had one on Tues, but someone overlooked the fact that he wasn't on the schedule. My poor kid falls through all sorts of cracks. Until then we're just keeping him as calm and comfortable as possible.
Thursday, January 6, 2011
I can't believe how fast my babies are growing up. It seems like they're older and bigger and smarter every single day. Today they had their 3 month check up complete with vaccines. It's amazing how much time it takes to do anything with 3 babies. We had their pedi appointment, took the rail to Children's to refill Linus's meds, grabbed a bite to eat, took the rail back and it was nearly 8 freaking hours before we stepped foot in our house again!
Simon weighs 12lbs9oz which puts him in the 25th percentile for his age. He smiles the most and has the best laugh I've ever heard. He coos and babbles and will even repeat you if you use his sounds. He is the best snuggler and just makes my heart melt when he hugs my neck. Simon is also our little water boy. He has so much fun kicking, floating and waving his arms in the bath. Simon has gone from being our "laid back guy" to our "hot and cold boy". He's the quickest to throw a fit but also the fastest to smile. Sometimes his face is still red and streaked with tears when he's laughing again. He'd going to keep me on my toes, I'm sure of it.
Linus is 10lbs11oz and is not quite on the charts yet. He's doing pretty well at home on his meds and feeding tube and will see his cardiologist on Tues 1-11-11. He's definitely our most independent little guy but is smiling more and more and has even laughed a few times. He's also started cooing and working his mouth. Linus's favorite past time is to look loving at his "food bag" and talk and smile and laugh. It sits on an IV pole next to his favorite swing along with his enteral feeding pump. You'd think this very dull peice of medical equipment was a damn puppy the way he reacts to it. I swear to you he's never looked at me with half the love in his eyes. If I was the jealous type, he'd be in big trouble. Luckily for him I've chosen to find it hilarious.
Dexter is a whopping 12lbs13oz and in the 35th percentile. Our big boy is so attentive. He can sit quietly and study a toy forever. Dexter mostly hates bath time and seems scared we'll drop him the whole time. How did someone so young become so untrusting? If it were Linus, I'd say he has a good reason to be wary, but Dex? Nope. His biggest claim to fame is that he knows how to fake cry. This kid will scrunch up his face and say "waaa waaa hmmmmmm" then open his eyes and look around like "Did it work? Is someone coming?" SO freaking funny. Cracks me up every time. Unfortunately laughter is not what he's going for so it's mostly backfired for him. :) When he's tired he wants to be held and will rub his face back and forth across your chest and shoulder. Such a sweetie pie, this one.