Sunday, February 27, 2011

Rambology

Proper noun: 1. the study of an extremely difficult, yet completely adorable baby named Rambo. Rambologic: adj./2. (n) confusing subject 3. (n) baffling project. 

It's real. Trust me. It's the newest thing out there next to the study of high end brand name products and soylent green. And the past 12 weeks have taught us that no one is by any means an expert in the field. As a matter of fact, no one even has a degree yet. We're all still in training. And the subject has been kicking our butts - until now. Cut a hole in his throat and we finally one up'd him. He didn't see that one coming.


Rambo has had his trach since Wednesday the 23rd and he actually looks comfortable. And from my recollection its the first time EVER that we can say that. He is breathing without working too hard. He is smiling! He looks like a real baby. There isn't a need to keep him sedated anymore so he is waking up, looking around. And I really think that if he could make noises he would be. The best part is we can see his face!!! His wonderful beautiful face!


  His nurse said today that there is finally a dim light in the distance. An end is coming into sight. It may still be a way off but it IS there. Rambo has one surgery left to undergo. It will be to get his G tube and Nissen. The G tube is his feeding tube and the Nissen is so he does not have reflux. 

He will get his first trach change this week by the ENT's and then Ben and I will learn all the in's and out's of changing/cleaning/caring for it. It's a little disgusting to think about.

Our little man has been more trouble! And I'm the mother of Ruth, so that is saying something :) (No sighing. You all know it's true.) 
I love him and can't wait to bring him home.  







Saturday, February 26, 2011

Home is where the heart is.

Not. Anyone who says that is a liar. Or they have never been away for an extended period of time. Because after 12 looooong weeks I can say that home is most definitely home. It doesn't matter where your heart is. YOUR house. YOUR bed. YOUR food. YOUR things. Those can't be replaced. Even with my family 'together' here, all I want is home.

I'm tired of my son being passed around like a volleyball at the hospital. He's been moved back to the NICU again. And quite abruptly too - I guess the PICU was done with him. I'm tired of the $40 every 10 days just so I can park to see my son. I'm tired of everyone saying that our opinion matters when it clearly doesn't. I'm tired of feeling torn between my kids at 'home' and the one at the hospital.

I click my heels together all the time but to no avail. Dorothy was so lucky.  

 

Wednesday, February 23, 2011

I got tone.

And Rambo got his trach. So we both accomplished something today. I mean, I don't want to take the limelight away from little man, but I was pretty proud of myself. I'm sure I lost most of you with that reference (and by 'most' I mean all but one) but that's okay.

We were all (the kids and I and my mom) supposed to go home for the next couple of days, but that's not exactly how things worked out. Ben got a call this morning saying that Rambo was having his surgery this afternoon. We've been talking about this option for a while now so I know what a tracheostomy is. I know what it does. I know what it looks like. Yet still, somehow I am not sure how to handle a hole cut into my childs throat. It was a very surreal feeling today looking at him when he came back. Maybe it's because the dynamics of today were all different. It caught me off guard a little, Ben wasn't there for this surgery, I wasn't a big fan of the anesthesiologists tripping over the equipment as they walked him to the OR, the room was CHAOS when he returned. (Not because of him, per say, but because they had 3 surgeries come back at once.) So, I was..... overwhelmed; maybe that's the word I'm looking for. Overwhelmed in that I'm still trying to catch up. I don't know. Anyway, now I feel like I'm just rambling like I do when I leave phone messages. I hate leaving phone messages. I always forget what I wanted to say and then I get flustered and then I end up stating that I'm aware that I'm just rambling.............

It's a vicious cycle.

I'm so thankful we don't have to worry about anymore emergency intubations. He can take his time now and build up to breathing on his own. It looks like next week Rambo will be getting a G tube and Nissen and then the plan is to slowly work our way home. Maybe hit up some rehab places on the way. And then, after that, try to take over the world.

Tuesday, February 22, 2011

Watch your cups!

Well, considering the NICU almost killed my baby, I'm pretty happy to be back upstairs.The PICU isn't generally the place you want to be because it usually means you aren't in the best condition. But in our case, I'm happy to be here. Even if there is a clumsy nurse or two. :)

Last week Rambo was doing extremely poorly and no one was sure what had happened. It seems to be the general consensus that the NICU created the perfect storm. Weaning him off his narcotics, trying to avoid withdrawl, extubating AGAIN was all just too much for his little body and too much strain on his heart.
I'm not trying to take all credit away from the NICU and I definitely want to give credit where it's due. The nurses and nurse practitioners are great. I'm thankful they kept Rambo alive when I couldn't have done that on my own. But see if I don't avoid that place like the plague from now on! I said before that Theodore seems to like it in the PICU and I'm thinking he's on to something.

It makes me sad to look back at the pictures before his 'episode' and see how healthy he looked. Actually, in all honesty it makes me mad. I suppose the doctor had his reasons for doing the things he did.
I have no training of any sort in medicine, but I thought that after 8 failed extubations it would be pretty clear to everyone that something had to change. Now he has even less hair, he's swollen and bruised and pale. There's no point in dwelling on the past and he will get healthy again, but it breaks my heart still.
 


After yesterdays surprising (and wonderful) outcome the plan is to get Theodore ready for a trach and G tube. This was actually the original plan before he moved downstairs (NICU), but we don't need to get into that. Hopefully ENT and GI will come take a look at him and set up for the surgeries. The goal is to have them both happen at the same time but that might not be possible. The sooner he gets these done the closer we are to going home!

So, we're settling back into 'normal' again. Theodore is stable and on the mend. His heart is good. Ben is back to work and the kids have marker all over their bodies. Life is good.

Monday, February 21, 2011

extracorpreal membrane oxygenation

This morning as we were getting ready to go to the hospital and meet with the surgeon I realized that I was not at all ready for today. I wasn't ready to see Rambo looking sick or abused. I wasn't ready to see him all cut up again. I wasn't ready for anything. Nonetheless, today was here and his surgery was happening whether I was ready or not.

We sit down with the same surgeon who has worked on Rambo before and you can tell he'd not pleased he has to do this one. He tells us straightforwardly that Rambo has a 50/50 chance at surviving the surgery. And if he does survive he will almost definitely be on ECMO - a heart lung bypass machine. I have seen this machine on several children in the PICU and hoped never to see my child on one. You have to be completely sedated and paralyzed and each day you are on it is a day closer to not getting well at all. I had a feeling that this was coming so after he told us that I tried to prepare myself for it but to no avail. I just could not see Theodore hooked up to ECMO.

His surgery time comes and we walk him back - I think I did a pretty good job holding it together considering I was just told that my son may not live through this. And we wait. We wait and wait and wait. They usually call several times throughout the operation - at the first incision, when they hook up to bypass, when the repairs are done, when they are off bypass, etc. But we haven't heard a word from them this time. It's been 2 hours and I'm starting to wonder what is happening back there. Then Ben and I look up to see the surgeon standing right in front of us. He's definitely NOT supposed to be there. What is going on? Where is Rambo? Don't tell me something I don't want to hear. And then he says "A miracle." No lie, a doctor actually said miracle - that never happens. They got him in the OR put in all the central lines and IV accesses they needed and did one final echo - the heart is functioning well. And not only is it functioning well but the leaking of the valves is even less than it was on a good day for Rambo. Praise God! I was stunned - I still am.

I guess Theodore likes scaring the crap out of me. But I'm thankful God had a different plan. My little man lives to see another day!

Unfortunately, this also means we've fallen a little behind on the steampunk plan. For now, I'll take what I can get.

Sunday, February 20, 2011

Planet of the apes

Tomorrow is the big day - for the third time. (I told you it was a crap shoot.) Little man will be getting a baboon's heart.

I made you wonder, didn't I? No, he won't be receiving a primates organ but he will most likely be getting an artificial valve. The first step in converting him inwardly to all mechanical parts will be complete. After the valve, the rest of the heart. Then kidneys, liver, lungs - hook him up to hot water and we'll have the first steampunk baby. Be jealous.

It's been determined that the change in his heart functionality was not caused by infection but rather just the repairs giving up. He apparently did not have the best tissue to begin with, which I think would have been nice to know the first time around, but whatever. I suppose the outcome wouldn't be any different.

The exact time of surgery is not known because they just have to fit him in where they can. But they assure us they will fit him in. He's had no more seizure like activity since he was moved upstairs so thankfully I haven't had to watch him turn purple again. They are keeping him heavily sedated so he can rest before his surgery.

Now, for a preview from my new and hopefully short journal, Diary of an Insane White Woman.
*Listening is observating.
*A frozen 'z' is very similar to a cursive one.
Words of wisdom, I think.

Saturday, February 19, 2011

Beavers and ducks

I have lost my mind. I thought this was coming but now I'm certain. It's gone. The past week has made me more than aware of that. Wandering around the parking garage that I use everyday with no idea where my car was or how in the world I was going to find it was the first clue. Waking up out of a dead sleep in the middle of the night telling Ben to put the napkins on the blanket and the sweater was the second clue. I was not only telling him to do that, but I was insistent that I KNEW what I was talking about even though he was laughing at me. Let me assure you that he did not pass up the opportunity to string me on for awhile. And finally, when Ben can make me laugh almost uncontrollably with this

a stupid crazy cow puppet I know that my mind is now mush.

Thankfully my cousin and aunt came today and helped bring me back to reality if only for a little while. They reminded me of when I was able to hold Rambo and how alert he was so I thought I would share the video with you. He's amazing. And he would still be this cute if they would stop shaving his head and making him look like Friar Tuck.

Friday, February 18, 2011

I should have called him cupcake.

Apparently Rambo feels the need to live up to his name. Maybe that wasn't the smartest move on my part. But whatever the case, he is going to be having his third heart surgery on Monday. I keep whispering in his ear that this wasn't the plan but I don't think he's listening. 

The good news is that his heart rate has slowed down and he is not working too hard to breathe. At least not while he's sleeping, which is what he's doing most of the time since they put him back on the narcotics. I'm sure he's having fun riding on pink elephants again. Somebody better be having fun because I can assure you that I am not. 

Today we will be going back up to the PICU. My love/hate relationship with them can commence once again. I'm not sure who is looking less forward to our return: us or them. :)

In other news, I ate at Baja Fresh for the first time today in weeks. It was still too soon.  

Thursday, February 17, 2011

Stiff drink and a cigarette

I would generally have something really witty to say, but my heart is heavy tonight. I promise to continue my rantings of the past few months soon. I know everyone is waiting on the edge of their seat for my next new blog and I don't want to keep you all waiting long or *gasp* loose any followers. So please spare me a rare serious moment and I promise to make the next one really good.

Theodore took a very serious turn for the worst last night. At first we thought it was just the typical stuff that occurs right before he needs to be intubated again: working really hard to breathe, turning pale, becoming very limp. But even after his intubation he did not improve. I received several calls from the nurse practitioner throughout the night and in her own words she was "very concerned for him." Everyone was confused as to what was actually going on but their best guess was another infection. So they immediately put him on antibiotics to treat whatever may be there and took cultures. The results for the cultures are still pending but we are aware of the main issue that is causing him such extreme trouble. His heart. Again. They did an echo today and we were told that his heart is not functioning well at all.

Now, I haven't yet gotten to the blog that explains in painful detail how exactly the heart works (Don't worry. I'm not actually going to do that.) so I'll try to keep it as simple as possible. Because, honestly, I still don't have a clue. Both valves (the 2 they created out of the 1) are leaking severely. This is causing high pressure throughout the heart and his body can not handle it. The reason for the leaking valves is unknown. The two main possibilities are infection or some damage to the repairs such as a loose stitch. We do not know what this means for him. However, we have a good idea that he has another surgery in store in the near future.

In the meantime we hope he can build strength. He looked bad, very very bad today. He is not strong.

Please pray for a miracle. Pray the doctors can move quickly and treat him efficiently. Pray for our peace.

   *He has enclosed Theodore behind and before and laid His hand upon him. Such  knowledge is too high. I can not attain it. *

Wednesday, February 16, 2011

Mobile Chernobyl

"Shooting xray!" You hear those words and you will literally see everyone in the room up and moving towards the door and out into the hallway. Parents forsake their children. Nurses forsake their patients leaving them alone and helpless to absorb all the radiation we're so desperate to avoid. Thanks for taking one for the team, guys. I really think by the time we get home Rambo will be the kids own glow in the dark toy. 

Ahhh, life in the PICU. 

We never expected to be in the PICU as long as we were. We didn't expect a lot of things. But I definitely think we left our mark wherever we went. Whether that's a good or bad thing is left to one's own opinion. Going with the flow; rolling with the punches; whatever you want to say, we are experts at it now. Why not make it enjoyable? 

Our days pretty much consisted of waking up, walking to the hospital, going to the 7th floor and entering First Big. That place will always hold a special spot in my heart. Imagine if you will a very comfortable, spacious, quiet atmosphere and then imagine the exact opposite. THAT was First Big. Loud, cramped quarters. Lots and lots of people, no privacy. Home sweet home. We usually had just enough room to push a chair right up against the bed while the other person stood on the other side between the ventilator and the wall. It's a good thing the nurses were great and we all got along because it could make for one miserable day if you didn't. (Well, they liked me anyway. They put up with Ben for my sake.) This was also the place where the majority of his intubations and extubations took place. God bless those doctors and nurses for all their attempts- failed though they were. 

I can definitely say I had a love/hate relationship with the JHH PICU. I love you but I hope to never see you again.  

Aaaaaaaaaaaaaand Break!


Israel 6, Ruth 5, Emma 3
I had to share the rest of my wonderful children who have been completely amazing throughout this whole thing.

They love Theodore so much and it's neat to watch how they care about him.





Fire and Ice.







"I hope the hospital has what Theodore needs."





Sweet but sneaky.







   "How's Theado going?"


"I hope he gets to come home to his brotha and sista and otha sista soon."









Only the best big brother in the world.




"Mom, will Theodore be home soon so we can be all together as a family?"













"There was a family had a babe and Rambo was his name-o. R  - A - M - B - O"


I love my kiddos. And I'm so thankful to everyone who helped take care of them for 9 long weeks while Ben was off work so we could be with Theodore. Israel, Ruth and Emma you are awesome!! 

(Don't be fooled by their pictures. The captions are much more accurate.)


It's a beautiful day in the neighborhood.

And by 'neighborhood' I mean PICU.

Talk about chaos. Wonderful wonderful chaos. I miss that place. But when I first walked in I was totally intimidated. And that was on an 'empty' day in the unit. 

It's a weird sight to see your tiny baby on an adult size bed. And weirder still when that entire bed is covered in equipment just for him. As well as his body being all geared up with tubes and wires and barely an inch to spare. It's amazing what can happen to someone in 6 hours. Our sweet little Rambo had become the bionic baby. 

At this point in my head I'm pretty much just hearing static and nothing. I was finding it hard to even form a sentence that was worth anything. (I know what you're thinking about the two prior sentences, and yes, I know what I just said. And yes, I mean more than usual.) I'm used to having a 2 week old at home: watching him sleep in his bouncer, patting his back when he's crying, picking him up, feeding him etc. Not looking at the scar where they opened up his chest or listening to the ventilator that is breathing for him. Although I still think it would have been cool had they cut the incision like a lightning bolt or done something ridiculous so he could say he had a chest burster come out of there. I'm bursting the bubble here, but they even had a SECOND chance at this and still, nothing but a straight line. Where's the creativity?

So, I'm guessing (hoping at least) you figured out by the last sentence that he had to have a second open heart surgery. Rambo was not progressing at all. A heart catheter procedure was done and showed that the pressures in his heart were still all out of wack. This surgery was a little more scarey for me. He was sicker, smaller, and would be put on bypass for the second time in his short little life. He was now 4 weeks old and an old hat at this whole surgery thing. 

So the second surgery day rolled around and several hours and 110 minutes of bypass later he was done. For the last time. Of course, that's what we thought the first time so who really knows. I think it's just a crap shoot. But they say his heart is looking good so we'll see. When they went in this time they found that there were more defects than they realized but were able to repair them. Now you have to realize that what they were working on is about the size of a quarter maybe so it's not that surprising they had missed some things. I am thoroughly impressed with the work done. Thank you, Dr. Vricella. You're check is in the mail. 


This concludes our second week in the PICU. Please turn the tape over to continue listening to Rambo's Rampages.

Monday, February 14, 2011

License plate: Bypass

You know you're in for a real ride when you get a call from the doctor (on Christmas Day) saying they had to reintubate your child. SECOND emergency intubation - check. I bet you're starting to wonder how many times this poor child has been intubated and extubated?? Well, today marks try number 9 without the breathing tube. 9. Seriously.

I could give you a play by play account for the 7 tries in between but I won't. Let's just say Ben could intubate or extubate anybody any day of the week now. But I'm getting ahead of myself.

Back to the NICU on Christmas Day: After many days of being baffled by a baby the doctors finally all agreed that his issues were being caused because of his heart. Duh. Rambo showed really early on that he was not the typical child with this defect. He wasn't eating and when he was, he wasn't keeping anything down. He was constantly breathing fast, like really fast: 110 bpm was average. And he couldn't seem to do the breathing on his own. So even though most babies are bigger and older when they have this corrective surgery it became clear that Rambo needed it now. Without it he would never be able to progress.

We were told on Tuesday that he would be having his first open heart surgery on Thursday. Rambo would be 2 weeks and 1 day old. And he was small. I'd like to say that I was totally prepared and ready to do this, but I wasn't. This was a big surgery. His heart would be stopped and he would be put on bypass while they made the repairs. I'm not sure I can fully describe all that I was feeling but I think the best word for it is helpless. My mind and body were not one. I was somewhat of a mess but I held it together for the most part.



After several hours of operation, we got the call from the OR that they were finished and he would be heading to recovery soon. RELIEF. And once I saw him I lost all control of myself and stumbled out of the recovery room a blubbering idiot. Literally. Ask Ben. I think everyone was thinking "Why are you crying now? Surgery is over." What can I say? I like to keep people guessing. (You can also ask Ben about this. He would agree wholeheartedly.)

So his surgery is over and he's on the path to recovery. Or is he? (dramatic music) Du du duunnnnn.

So you're sayin' there's a chance.

There are several things I've learned in the past few months. The first of which is even Baja Fresh gets old when it's pretty much your only choice of nourishment at the hospital. I've also learned more information about the heart than I care to bore you with, the names of all the nurses in the PICU and NICU, and that Plan D is always the plan you end up with.

My knight in shining armour doctor finally agreed to induce me 2 weeks before my due date. I can not tell you how much this pleased me. And to my pleasure even more, I went into labor on my own the morning I was supposed to be induced. I give my husband credit at this point because at 2am I said "My water broke!" and he hit the ground running. We had to make it to Johns Hopkins since it had been decided it was the best place to deliver so we had over an hours ride and this was my 4th child. Keep in mind, I barely made it to our local hospital with the last one.  


Anyway, a pretty uneventful trip and several hours later Rambo finally entered the world. I'd like to say he came out with a bang but he didn't. At leat not in the way that you would think. I wasn't aware of much but I did notice that he wasn't crying. See, he was trouble from the beginning. So to save you all the boring details they got him breathing and transported him to the NICU to observe him for a few days and then send him home. That was Plan A anyway. Which, if you defer to the first paragraph you'll see how well that worked out. 


The cardiologists came over the next few days and did echo's to look at his heart. We were told quite a few times that we'd be home within days. Well........ we're still here 10 weeks later so I'm thinking that was kind of a 'weatherman call'. After the first week, he was actually looking pretty good and it seemed that his feeding issue was the only thing really keeping him from home. But out of nowhere, 2 days before Christmas, he turned suddenly downhill. He literally took the form of a limp fish and as you can imagine, that was not a pretty sight. Hence, his first emergency intubation. Yes, I said first. This was just the beginning of a very bad trend for him. 


Theodore decided he liked it here - so much so that he would do anything he could to stay. I suppose he likes emergency intubations, endless pokes and prods, people scurrying all about him. Just like his dad...







Sunday, February 13, 2011

"That could be a real life changer."

It's all Ben's fault. 

No, just kidding. I guess he's only partially to blame. :) When we found out we were pregnant with our fourth, we were definitely excited. It had been 3 years since our last and we both wanted one more. On a whole the first half of the pregnancy was pretty standard: tired, cranky, sick. I was counting down the days until THE ultrasound. Boy or girl?? (We were both hoping for another boy - don't tell our girls) And sure enough- boy it is! Just like we ordered. But we also found out that things weren't quite right. There were some issues with his heart. And after a terrible visit with a doctor I hope never to see again we were referred to a specialist to find out exactly what was going on. 

Complete AV canal defect. Yeah, that was my reaction as well. What??? To make a long description short, he only had one atrium (you're supposed to have 2. Who would have known?), one valve (again, there should be 2), and a hole in his ventricular wall. On top of all that, this is usually a sign of a genetic disorder. Talk about a "slap in the face, kick in the pants"... 

The cardiologist assured us that they see this often and although it means surgery it does not mean our little man would need it right away. Six months, we were told, is when they usually operate for this defect. However, we needed to have extra ultrasounds and doctors appointments to monitor the baby and make sure things were going well. Suddenly, I'm told my baby has a serious heart defect and will need surgery before he is a year old and I'm thinking "Could this get any worse??" That was stupid.

At a 'routine' ultrasound we discovered that I had extra amniotic fluid. Not necessarily a big deal but in this situation most likely points to a greater issue such as swallowing problems for baby; meaning genetic disorder. Also meaning EXTREME discomfort for mommy. Discomfort soon led to pain and pain led to 'please let me just die'. I cannot begin to describe how I felt with so much extra fluid. I wish it on no one. This of course also meant weekly ultrasounds and appointments.

We also discovered at another of these infamous "routine" ultrasounds that it looked as though our baby had hydrops. Basically it's fluid in the baby's body that doesn't belong there. This is not a good thing at all and puts baby in a huge amount of risk. And this is right about the time he earned the nickname Rambo. (I do take all credit-or blame, depending on how you look at it- for that.) We knew he needed to be a fighter, and honestly, who doesn't like Rambo?? Thank the Lord, as the weeks went by the fluid in Rambo's abdomen disappeared.


This was by far the hardest pregnancy of all time: physically, spiritually, grammatically. But the Lord is faithful and we knew our little one was fearfully and wonderfully made no matter what that meant.