Wednesday, January 19, 2011

Not The News We Were Hoping For

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.

19 comments:

JS said...

Girls, i still read faithfully and follow your journey...I don't often comment because I don't know what to say. Im sorry you are dealing with the heartache for your baby boy...I dream of the day this will be a distant memory and linus's little heart is healed. Until that day, know that I am constantly sending my thoughts and positivity your way in hopes that the universe will cut you a break.
You are both doing an amazing and inspiring job of being the best moms to these boys, and they are so fortunate to have you.
Sending love...

Kathryn said...

He looks so healthy and lovely and chubby and happy! What a sweetheart!

Hoping for great news on Monday!

Lucy said...

Sorry the news wasn't what you'd hoped for. Its certainly been complicated but he looks absolutely beautiful and honestly, quite healthy. He seems to be getting stronger. I always think about y'all and will continue to send good vibes and warm, healthy thoughts! :)

N said...

I'm so sorry the news wasn't better, and that there's so much uncertainty. Keeping you guys in my thoughts tomorrow, and hoping for good news from the team.

reproducinggenius said...

Every step of this journey seems to bring its own challenges. I so hope that you get some good news soon and that little Linus can get on with being the adorable baby he is. Sending much love to your family.

Pyjammy Pam said...

oh, my sweet linus bear!

i wish the news had been better. :(

but the picture of him smiling at trina is soooo heart-meltingly sweet. aw, shucks!

Helen said...

What a hard time. Sorry that the news wasn't better. The pictures you posted are really beautiful. Linus is gorgeous and your beautiful wife looks like she is holding up well (on the outside at least). Take care guys, you are all in my thoughts.

Helen

Nicole said...

Oh Robbie, my heart just aches for all of you having to go through this. Linus is such a strong little guy and that smile just melts my heart. Thinking of you all and hoping for some better news.

Sabrina said...

I just have to say that he's the most beautiful sick-baby I've ever seen in my life! I know he's very ill, but he doesn't look it, he's precious! I love the photo of him smiling at Trina, he's not looking over her shoulder @ foodbag, is he!? Cute! Lots of prayers!

jade said...

I agree with all the above: he's looking so well! Just goes to show how well you two are doing this! I also have a hard time finding words - they feel so insufficient - I really wish there was anything I could do to help, I'd be really glad to do so. So I'll continue with sending my positive thoughts and keeping all my fingers crossed. So looking forward to reading better news than you were hoping for, hugs for all three boys from tiny Belgium,

Next in Line said...

Such lovely photos of Linus and each of you. Today is Monday and I am hoping you got the news you have been hoping for.

tinyblossom said...

I am hoping that you got some good news today. I read your posts and admire your strength in the face of such difficulty. I am truly amazed. Keep being the awesome mamas that you are. And for dear Linus, I am sending all the warmth and healing thoughts I can muster to fix his little heart.

shroomie said...

love the pictures and how strong the two of you are during this whole ordeal. I can not imagine the struggle that you are going through daily, but am amazed each time I read with how gracefully you are handling it all.

Green Weaver said...

I don't think I've commented, but I peeked in now and then in the past, and have been following along through most of the pregnancy. I just really wanted to thank you for the extent to which you are willing to share the ups and downs. It has been rewarding for me to follow your story particularly because I am a third-year medical student. I've taken a lot away from reading about the ins-and-outs of what you are experiencing as you interact with good and not-so-good doctors and staff. Thank you!

You guys are so devoted to your kids, and doing such an amazing job juggling three babies and our terribly unwieldy medical system.

Candi said...

I hope he just gets what he needs. if the surgery gets him to be at tip top, i hope it comes and goes with ease. You are doing both a great job as parents. You have so much courage, and always staying positive. You girls are great to look up too. Thank you for keeping us up to date with the boys. Its weird.. you find someone online, read their journey, and continue to do so. Oh the internet!

Heather said...

The picture of Linus smiling at Trina is priceless! I'm sorry he and you are going through this.

Heather said...

my heart aches for your family. I'm wishing for a break, a light at the end of this tunnel, something to give that little guy a break! He is such a fighter. You two are the strongest & most capable mommies I've ever known.

Kimberly said...

I'm a regular lurker, but I don't know that I have commented before. I just wanted to let you know that I'm praying for you. I agree with the others that he looks so healthy; it's hard to believe he has such an unhealthy heart. You and Trina are amazing. I can't imagine the stress you must be under, but hopefully the knowledge that so many are supporting you eases your burden just a bit.

Liberal lesbians in the south trying to make babies... said...

Robbie-you and your family are always in our thoughts - and you always seem to have such encouraging words for us and so many others - just wanted you to hear from us that we are rooting for your little Linus and for your amazing family in general!