Wednesday, January 12, 2011

Broken Hearted

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.


23 comments:

Crazy Lesbian Mom said...

This is so heartbreaking to read, so I can't even imagine what you're going through as parents.

For whatever it is worth, please know that you've got huge love and support from here...

Take care of yourselves.

Lucy said...

Thats pretty horrifying. Sending lots of love, warmth, and healthy vibes your way. Take care.

N said...

My heart is aching for you guys. Keeping you in my thoughts. <3

K J and the kids said...

My blood was boiling over while reading the ER story. I can't imagine how hard that was for Trina. Especially with all of the fears you had going in.
I'm so sorry guys. I hope and pray that things will start looking up.

Next in Line said...

Oh gosh. What a terrible night at the hospital. I wish I could do more to help you.

tinyblossom said...

Oh no! I'm so very sorry to hear what's happening with Linus. I am sending many thoughts of healing and strength to you all. I was horrified to hear about the ER experience too. You all have been through so much...

welcome2ourworld said...

I got so angry while reading the ER story. And it's so sad that he has to go through all of this. I don't know how you do this. You are some really strong parents. I will keep that little fighter in my prayers.

cindyhoo2 said...

I find it so hard that not only do we have to be parents but too often we have to be advocates to get proper care as well. That ER visit was awful! The thought of Trina knowing what needed to be done and getting dismissed makes my blood boil!

Beyond that, I am so sorry for the hard choices your family is facing. You remain in my thoughts and prayers.

addingbaby said...

You're all in my thoughts.

Stacey said...

So sorry. I have no words other than it's not fair and I hope you can get the help that he needs. At least you have one great doctor on your side.

-C- said...

That's terrible. I'm so sorry. You should be enjoying your boys right now and instead you all have to go through this scary stuff. Hang in there, little Linus!!!

Kirsten said...

we're thinking of your family.

Baby Mama, Too said...

So so sorry you are continuing to have to go through this all. I am so tired of doctors/random medical professionals simply ignoring or dismissing patient concerns...

Sending healing thought to you and your boys'.

shroomie said...

my heart is with all of you. I can not imagine the frustration and worry you are all going through. Take care of all of you and enjoy each moment.

Shannon said...

So sorry to hear of everything that's happening with Linus. The ER visit sounds horrible. I was so angry reading about it. I hope things start to improve for your little guy soon.

tbean said...

My heart breaks for Linus's suffering and all that your family has to endure. You are in my thoughts often.

Sabrina said...

Goodness have you ever had a time! I'm sorry that little Linus is going through all of this! My cousin had 2 St Jude valves because of an infection that got into his heart and ruined his valves...however, he was 21 at the time. I remember hugging him and the click-click of the valves as his heart beat. It was strange at first, but saved his life. The other problem with the blood thinners is that they have a terrible side effect- aneurysms (which killed my cousin). I know that it might be a necessary evil for Linus, but please, do all the research you can before you sign the papers and he rolls away from you into surgery. Many thoughts and prayers for all of you!

P said...

Oh no. I hope all goes well and he starts to feel better soon. Keeping you guys in our thoughts. You guys have all been through so much.

H2 said...

You are always in our hearts, Robbie. You have SO many people praying for your little guy. You're doing a great job and your mama-instincts are definitely getting their workout. Hoping for a repair and not a replacement. You can do this. I put extra prayers and love in that package of hats. Make sure you use some of it. ;-)

poppycat said...

Sending so much love to all five of you.

jade said...

Love and positive thoughts for all five of you - Jade

Pomegranate said...

Poor Linus. I'm so sorry things are so hard for your family.

Helen said...

I have only just stumbled onto your blog, so I haven't had time to read any of your other posts. Just wanted to let you all know that I am thinking of your little Linus. I am so sorry to hear of the experience that you had in the ER. I hope that everything takes a turn for the better. Take care.
Helen xo