Saturday, June 30, 2012

The plan?

Believe it or not, we actually finally have an almost plan. Ready? It's watch and wait. BUT they did say we might be looking at going home towards the end of the week. I can handle that. He's still on the vent at night but they are going to try him on just CPAP tonight which means he will be getting constant pressure as opposed to that plus extra pressure with breaths. We still aren't sure if he'll be coming home with CPAP via vent but we will see. 


Despite all of this, Rambo has been very much himself. Happily playing and learning something new almost every single day. 



Sitting up without propping himself with his hands!

Um.. yeah... that's him learning to pull himself up. My life is officially over. :)




They finally made him braces for his feet. I've only been saying since he was born that
his feet were weird. It's all good, he's got them now. And he doesn't mind them too much 
as you can see by the fact that he's chewing on them. 




In a highchair for the first time. I SERIOUSLY need to find one of these. He LOVES it.

He also got a hair cut today. (I'll put up those pictures later.) Because of all the laying on his back from the vent he literally had a carpet back there. No more- just really cute curls now.

Also, his second "jewel" has been located. Phew. We'll take care of that a couple months down the road. 

That's all for now. We'll talk soon. 

Thursday, June 28, 2012

Blessed Life

Yesterday I was in a bad mood. Seriously, just ask my mother in law. I'm not sure what it was but I think everything caught up to me: 3rd admission to Hopkins, lack of sleep, changing floors, etc. Thankfully, I woke up this morning a bit more refreshed from a good night's sleep and came in to see a happy kiddo. I love that boy's smile. And his hugs! 


We just missed the doctors rounding this morning so I'm not sure what the game plan is. Or if there even is one. As of yesterday, because Rambo has now changed hands of who is attending him, the original plan of coming home on the vent has gone out the window. Or at least has been way layed for now. (I'm actually not even sure if that's the correct term, but it sounded right in my head...). The pulmonary doc in charge isn't too keen on the idea of Rambo being home on a vent at night. I'm not sure what that's going to mean in the long run. But for now they need to observe him, collect data, etc and come up with a plan. 


I hope I'm not getting ahead of myself. I just realized I may not have explained why this option of being on a vent at night is even up for discussion. From what we can tell, mainly because this is his third admission, it appears that he has not fully recovered from the original virus he had about two months ago. Put a beast of a virus on top of already not great lungs and this is what you come out with: a long recovery. So the question now is, how long of a recovery? 


So that's where we are. Hopefully coming up with a plan that works for everyone. And by everyone I mean mainly us as a whole family-at least in my opinion that's all that matters. If I had to guess I'd say that we are looking at a few more weeks here. Anything is possible but that would be my educated guess at this point. 


We are waiting in the unknown at this point. Again. I am thankful that he is doing well and acting like himself. I'm struggling with the fact that being on a vent at night might be his new normal and from being away from my family again. 


But....


This is the Blessed Life- not anxious to see far in front, nor careful about the next step, not eager to choose the path, nor weighted with the heavy responsibilities of the future, but quietly following behind the Shepherd, one step at a time.


So here's to today (as I raise my cup of coffee). Only today. 

Wednesday, June 27, 2012

I know, right???

"I know, right?" "Yeah, yeah, yeah." "Sure. Sure." "So....."


People, please. VOCABULARY. I'm "just sayin' ". Unfortunately, in my many months spent here I have adopted the last of those sayings. I find myself saying "So...." a lot. Also, I'm harkening younger days and really enjoying saying that "I'm j" when I'm jealous of someone. I shouldn't admit that. Too late now..... But really, people, please use words together that make sense and that don't repeat themselves so as to make a complete thought. 


NOW, here is the way we (me, Rambo, and my mother in law) have been spending the last six days:



  







A couple of things:
YES - my hair changed color. You know what, I can do whatever I want!! :)
The Rambo sign was made by two wonderful people here overnight. They put a lot of effort into it, and it LOOKS GREAT and was a great surprise. And I have added the red headband that every single "Rambo" sign has had.  
The freaky clowns were NOT my idea. Yes, I did keep that picture small on purpose.
And the video is showing off his newest trick. We thought he was a handful before......


So, (hahaha- just kidding!) My mother in law drove up with me on Friday night when Theodore was transferred so that I wouldn't be alone. She just so happened to be the one who took us to the ER so she was stuck with the job. This appeased Ben and has been quite nice for me to not be lonely on my long days at the hospital. Unfortunately for her, she's stuck here until who knows when. I'm certainly not working on how to get her home- I want company! Plus, we've been keeping ourselves pretty entertained. And that's how I'm leaving that.


Today, most likely, Rambo will be moved to IMC. Yes, the ACTUAL IMC, so I hear. But there have been some new and strange things afoot at the circle K today that have me questioning a few things. In any situation, he is getting out of ICU. We do not have a really clear picture of  what the plan is. Pulmonary has come up and seen him. We have been the hoops with the ICU team and the discharge coordinator about coming home on a vent for night time. Now we just have to get EVERYBODY on board with it. Each time we move it's starting from scratch and that is most definitely starting to get old.


I'll play catch up on here later. I'll give more details and fill in the gaps but for right now Rambo is doing well. Trach collar during the day and vent at night. Still increased oxygen but we will hopefully be working on that soon. 


Enjoy the pictures! Except for the one of the clowns, and have a nice day. Enjoy the sunshine for me.  





Saturday, June 23, 2012

Rerun.

It seems the amount of time between hospital visits is getting shorter and shorter instead of longer and longer. 


We are back.


Us at the local hospital. After a few nebs and a good supply of oxygen he was feeling a little better. I am only smiling for the picture. Trust me, I wasn't exactly happy to be there. Accepting it joyfully - almost, but not exactly happy. 


Got a good two full days at home. Then the same ol' same ol' started again. By Friday morning we were using 2 1/2 extra liters of oxygen and Rambo was still sitting in the low to mid 80's for oxygen. There was no way we could meet those needs. His heart rate started going up as well as his temp. 


So we found ourselves back at the ER. Thankfully, the same doctor was there as the two previous times. She was immediately on the phone with Hopkins, knowing the routine. We did avoid a helicopter ride, but only because of an incoming storm. He was put on the vent in the ambulance and brought directly to the PICU.


Ugh.


We were told right before he left our local hospital that he tested positive to RSV. It's not even the season for it, but he's got it? Doesn't surprise me... what can with this boy? But later that night, we were told that it was a false positive and the second test came back negative. So we are thinking it's more of an extended recoup from the first visit. He has yet to leave the hospital with his lungs looking good, so it appears he gets strong enough to last a few days and then gets weak when he doesn't have any extra help. 


Enter the vent.


I'm not sure what the game plan is, but there is talk about being on the vent at night long term. Like for weeks or months. There was also talk of going back to Mt. Washington. I would rather gag on a barbie doll leg then go back there. 


I know that I seem picky. I really do know that. I don't want to go to the "floor". I don't want to go to Mt. Washington. I promise there are reasons for this. It's not because I want to be difficult. Having experienced those places, I know that at a certain point Rambo is just better at home.


I do not think he will be in the PICU long this time. They are going to try him on the portable vent tomorrow and if he does well he can be moved out of ICU. As far as what happens after that, I don't know. The thought of being away from home, kids, family, etc for possibly months is more than I can think about at this point. 


One day at a time. Tomorrow has enough worries of it's own. My life today doesn't necessarily indicate what my life will be like tomorrow. (Thank you, poppy.)


Today at Hopkins. Giving a few smiles and hugs. They have become fewer as the day has gone on but not too bad of a day.


I have also broached the subject of the possibility that he is allergic to dogs. I don't actually think this is the case. He is not having any "allergic reaction" symptoms. But the fact that he is fine for several days and then ends up back at the hospital has caused us to consider everything. It is really the only new thing going on at our house. And Rambo was fine for several weeks after we got our dog. Also, an allergic reaction to a dog couldn't cause a specific virus. But we definitely want to cover our bases. Some docs seem to think it may be a possibility. Others say it's really not likely and this is just a prolonged recovery because of his chronic lung disease. We will mention it to pulmonary and see if they think it's worth getting a test or not. 


I'm seriously hoping it's not because I LOVE my puppy, but at the same time if it's as simple as not having a dog then.........


BUT, I will not worry about tomorrow, I will live in today.


I would like to now take the time to thank a few people who have blessed us so enormously. I will not mention names until I ask if it's okay (and until the thank you notes go out) but I'm pretty sure you know who you are. Through you God provided for us in such a huge way that we were amazed. I actually would never be able to tell you how thankful we are. How much it blessed us. How it was exactly what was needed. THANK YOU. 


To those who have made meals (some of whose dishes are still sitting in my kitchen- sorry) thank you for blessing us. It not only helps give me one less thing to do, but it gives us family time not having to make a meal- we just get to enjoy one together. 


I can not speak to all the ways we have been blessed, and encouraged. You may have noticed a couple :) of comments on a previous post. Thank you for the love bomb! It really is an encouragement to my heart.


Who knows what the future holds? Actually, I know the One who holds the answer to that. I don't need to know the answer. I just hope to rest in His hands and in today. 



Tuesday, June 19, 2012

Thoughts.

In no particular order:


I am SO SO SO SO SO SO glad to be home. Okay, that one is in order, but from here on out it's all random.


Operation Clean out the Refrigerator must begin imminently.


Oh my gosh, my puppy is huge. And also a pain to walk on the leash.


Ugh, I forgot how awful our pulsox is.


Corner Carryout still has the best subs eveerrrrr. Thank you, Dad, for reminding me :)


I'm glad I get to read the kids a bedtime story tonight.


Fresh ground coffee is, indeed, as good as I remember. It's possible that was one of the first things I did when I got home.


People are awesome and God is good.


How could I forget how loud it was here again????


Spongebob annoys me just as much at the hospital or at home. 


You cannot deny that Elizabeth Shaw is pretty hardcore.


Sweet tea vodka is as amazing as it sounds.


My kids are awesome. No, the prior thought did not effect this one- I just REALLY think my kids are awesome.


My husband puts up with a lot and somehow expertly and sometimes not expertly rearranges his sleep schedule to be whatever we need. 


Yet again, we are in uber debt to my parents, mother in law and sister in law for all their help these past 12 days.... again....


I feel like I've completely missed May and June.


I hope pnemonia and infections stay FAR FAR away for a VERY long time! 









Monday, June 18, 2012

Monday. Monday. Monday.

I'm sitting here at the Children's House writing this morning for two reasons. One, I don't want Rambo to hear. Two, I know once I get over to the hospital I won't get the chance because I'll be busy playing. 


As it stands now, we will be coming home tomorrow. Home!! Theodore has been off the vent since Sunday morning and we have been slowly weaning his oxygen down. This morning he is at baseline and doing well. :)


The PICU has been gracious enough to let us stay 24 more hours so we can avoid going to the dreaded "floor" as it's called. Considering this isn't Rambo's first trip here and no doubt it won't be his last, they've come to know us quite well. I'm thankful they listened to us and are helping us out. Thank you!!!!


For accuracy sake, I must correct what I said a few posts ago about no longer having an IMC. They apparently do have beds that are IMC status. This is only what I've heard. I haven't experienced it yet, and hope not to have to for a loooooong time. Of course, they tell me this as they crunch up their noses and shake their heads. That's not comforting. They are still private rooms so who knows if you'll be able to find your nurse, but I can't say yet. I'm sure we'll get to experience that first hand at some point. I'll be sure to give you my opinion then. 


I'm gonna grab some breakfast and head over to little man. Hopefully this is our last night here! 

Sunday, June 17, 2012

I was going to say...

... nobody move a muscle because Rambo is taking his most likely only nap of the day. But that's over now so I'll make this fast.


Yesterday he was in a MUCH better mood. All he wants to do is move but if you keep him occupied he seems appeasable. He sprinted on the trach collar yesterday and was put back on the vent overnight for some rest. Today he is back on the trach collar and we are hoping to be able to keep him off the vent completely. He is almost back to his normal oxygen levels so it looks like we're closing in. 


Also, Ben came back late Friday night so he's been able to help out with the monster. Phew! I'm not alone!!


Happy Fathers Day to all you fathers out there!


Must go play.

Friday, June 15, 2012

Nightmare.

Today was awful. For those of you reading just to keep updated with Rambo, I'll spare you from having to read this entire post. He is fine. No setbacks. On the whole, things are looking good. 


But today. Oh, today. Rambo, or as I'll refer to him in this post as Nightmare, was exactly that. My morning started by walking into the room of a purple nightmare. He had somehow disconnected the vent, and although it only remained that way for maybe 30 seconds he was already a dark purple mess. And the day only got better from there. He was HIGHLY agitated all day. I mean, ALL day. I got there at 9:30 this morning and couldn't leave his side until 8pm. Even then he wasn't content. 


I tried everything. Even a dose of Valium didn't help. He was breathing fast and tugging a little hard due to the fact they are weaning his vent. Things are going pretty well there, but they just got a little ahead of themselves. It's taking more work for him to breathe and he isn't comfortable with it. Yet. He'll get there. He always does. It just takes him time. And they even admitted to the fact that they have weaned his vent a lot in the past 24 hours. And his left lung is still full of pnemonia. Yet, it took me until almost 5pm to get them to go up just a teensy bit on the vent. Ugh! And again I say, UGH! Once they did, his numbers started looking better and he was more able to be appeased. Still not happy- still driving me crazy, but better. 


Poor guy. I know he is tired of laying there so that's why we did everything BUT lay there today. He was all around. In the bed, out of the bed, standing up, being carried. We had toys and tv and cords. Everything a boy could want. 


This did cause for distraction at least for a little bit. He liked to look at the front of the tv then turn it around and look at the back. Look at the front. Look at the back. Look at the front. Look at the back. Look at the.... yeah, you get it. All the while, wacking his vent each time he turned it almost knocking off the vent or out the trach. Then he would try to bite the tv. Literally hours of this today. 


You know what he wanted to do? Grind his teeth. GRIND HIS TEETH!!! I can't stand it. It gives me the shivers just thinking about. If I had to pick one thing that makes me cold to the core it's grinding teeth. WHY?!?!? Why does this have to be his new favorite thing? I love the boy, I really do. But after trying to keep him happy, keep his trach in, and hear him grind his teeth I had to wonder. 


Thankfully, his nurse tonight is very familiar with him and is also good with him. I felt fairly comfortable leaving him tonight. Not to mention the fact that I was ready to run in any direction away from him at that point. 


Usually during the day I have time to browse the internet or write a post or read. Not once today. Everytime I sat down he was instantly like a writhing alien. Aside from one 10 minute nap.


I know it's not his fault. I know most of it was that he just wasn't ready to do all that breathing on his own yet. But good grief. So help me if those doctors wean it even more tonight. I told the nurse and the RT that I highly prefer them not to. And if they decide to do it (because that's what they do) then I need to be called with an explanation as to why they think that's the best idea.


They're crazy if they think I won't get up at 2:30 in the morning and go over there and set them straight. 


All in all, today sucked. I've certainly seen better days. Mostly, I hope that little man gets the rest he needs tonight and maybe, just maybe, we'll have a better day tomorrow. 

Wednesday, June 13, 2012

Who needs a title?

I really don't have any direction for this post... I just felt like writing. Warning: this post could quite possibly be the most boring, bunny trailed, sporatic post yet. Or as Ben would call it - a look into my brain. There have been a lot of thoughts running through my mind today. Everything from Rambo's nurses to an unfortunately clogged toilet in my room. How, for the third day in a row, I'm aware of how extremely thankful I am that Rambo has remained a relatively low key patient.


I walked into the PICU today and saw a room filled with nurses and doctors and the after effects of an emergency of some sort. People talking amongst themselves, doctors making phone calls, equipment being moved around. And amidst it all I saw a little baby laying on the bed in the middle of the room. My heart instantly sank thinking of what the family was going through, what the baby was going through, what could possibly have gone wrong. 


It's weird when I come across that sort of thing. I feel so.... devastated. I can only think to pray for that child and their family. It actually hurts my heart thinking about being in that situation. And then I remember that we were. So many times we encountered the adrenaline and the anticipation. I'm instantly grateful that we are not there anymore and can only pray that we never are again. But at the same time I feel so separate from it. It's like I'm looking from afar but am acutely aware of the feelings within. I see Theodore. Small and helpless. In pain. Hanging on by a thread. Body run ragged by tubes and needles. 


And, hopefully, the sigh of relief that eventually comes. 


I wonder if that deep deep pang of identity will always be there. I wonder if it will ever go away. 


I'm not sure which is better. 


It's been relatively easy to forget the pain. The busyness of life has been a great help in that respect. The chubby, active, 18 month old we have is a world apart from the sick newborn he was. On a daily basis, I don't think about it. I don't think about the past. Not until days like this when it's placed in front of me and something inside me just KNOWS. 


I am ever grateful to God for the work He has done. For His promises. For His peace. Even for this connection that cuts to the core. 


Well....... that wasn't the way I saw this going. :) I'll finish up with a quick update.


Rambo was in a good mood for the second day in a row. He threw out more than a few smiles and played for a while. His breathing was slower today but the tugging was worse than yesterday. His xray remained the same (aka awful) so they decided to not try to wean the vent at all. Overall he had a pretty relaxing day. They tried for labs but not surprisingly were unsuccessful. They may try again tonight. He did not desat with suctioning today which is a huge step in the right direction. 


My presumptions of what's to come: getting labs tonight and a long slow process of weaning the vent over a period of days. I'm hoping he can come off of it quickly, but he is still really oxygen sensitive so we shall see. 


Also, they put him back on contact precautions. This means I have to gown up again. Why? Because of something he tested positive to OVER A YEAR AGO. It's a bacteria that is more resistant to antibiotics so you have to 'prove' that you no longer have it by getting retested. Fine, then why hasn't he been retested???? No answer. Thankfully, they do the nose swab tests on Wednesday so we got one done. It will take several to many days to come through and we very well may be out of here by then but at least the process has started.


Ben had to get back to work so, seriously people, Baltimore isn't THAT far away. Get out here and spend your entire day sitting in the hospital room with me. Actually, it hasn't been too bad. I'm viewing it as a vacation. A sad, lonely vacation, but a vacation none the less.     


      

Tuesday, June 12, 2012

Strides.

Not sure if they're big strides.


Or little ones.


I'm hoping they are little strides that will make a big difference.


Hoping today was the start of the good stuff.


Today,


Rambo smiled.


And played. 




Which is a far cry from... 




Where he was two days ago. Picking his nose. He just discovered that.


His oxygen is still turned up. The vent is still giving him high levels of pressure. They slightly weaned the settings down overnight - I know the following may mean little to nothing to most of you but I want to give you an idea of how slightly I mean when I say 'slightly'. They went from 22 over 8 to 20 over 7. (PIP/PEEP) I never got a good idea of how that worked overnight but it was not working for him this morning. He was HIGHLY agitated and was desating the worst we have seen him and taking extra long to recover. So the settings went back up. But after a 4 hour nap and some Valium he woke up in a great mood. He was breathing fast again today, unlike yesterday, but didn't seem to be tugging as hard. Dare I say, he ALMOST looked comfortable while sleeping. Woot! I DO NOT dare to say the 'P' word yet but maybe tomorrow. 


We also tried turning down his oxygen just a touch but that quickly showed it wasn't the right time. SATS dropped from 98 to 91 in a matter of minutes. 


Another stride taken is the start of a new antibiotic. If you know anything about the speciating of bacteria which I'm sure you do then you know it takes a couple of days to find the exact bug that is growing. You start with a broad spectrum, pick an antibiotic that covers the majority of that direction, and wait and hope you have picked the right one. We didn't pick the right one. The final results came back today and the antibiotic he was on, of course, didn't cover his bug at all. So a new one was started today and hopefully that will quickly get his flourishing tracheitis under control. 


Today's xray didn't look any better at all. He still has mucous filled lungs. But they did call in pulmonary to make sure we are doing everything we can to get him better quickly. They also called for him to start OT/PT to start mobilizing him and hopefully moving the stuff out of his lungs as long as pulmonary approves. 


Today was a start.


Bad morning.


Better afternoon.


Hopefully restful, uneventful night. 


It's amazing how his mood affects my outlook. 


This probably shouldn't be.


But it is.

Monday, June 11, 2012

Short and... stagnant.

Today I will use the word 'fine' to describe how things are going. Not great, but not horrible either. I'm stretching to find some actual good news to report. I suppose the fact that things aren't worse today is a good place to start. And, on a whole, his breathing has been a little slower. 


Other than that, I'm afraid things are looking just as...... stagnant. He is still working hard to breathe- it's actually awful to watch. His heart rate is up again and his sats are sitting low. The plan is to hold fast, keep the course. What else can we do? He's been chock full of Tylenol and  
Valium to keep him comfortable and calm. He's got restraints on his arms so he doesn't pull off the vent, but that only irritates him. We're trying to keep him happy and entertained, but that only goes so far for so long. 


We got lots of pictures today so I'll be sure to put some up as soon as they get downloaded. I don't see us going anywhere for quite some time, so we'll be able to drive the nurses crazy for a little longer. 


Rambo just had a dose of Valium and is finally settling in to watch Looney Tunes. And on that note, "That's all folks."

Sunday, June 10, 2012

Poopy doop.

So.


I'll start with the good news. For the first visit since we got out of the hospital over a year ago we are off precaution. That means we do not need to wear the masks and gown and gloves any longer. Rambo doesn't have a contagious viral infection. In fact, as far as we know he has no virus at all. The only thing we've come up with is some type of non contagious tracheitis. I am happy to say that I don't have to suit up to go see or comfort little man. Also, his heart rate has ever so slowly been lowering. The vent has been taking some of the stress off his body and allowed his heart to rest. 


Now for the, I won't say 'bad news' but, not great news. His pnemonia is worsening. Apparently we got to the hospital just in time. It started with just his left lung being completely whited out. Yesterday, even though he was on the vent, he started tugging and looking not so great. Another xray was taken and the pnemonia has moved to his right lower lung. His vent settings were turned up pretty high unfortunately he continued tugging. After some valium and tylenol he had a semi-restful night. His morning xray today showed that his pnemonia is still progressing. He is desating pretty severely with each suction and taking many minutes to recover. The plan for today is to switch him over to a cuffed trach. The hope is that it will seal the area around the trach and make the vent more effective by not having any oxygen leaking out. 


Because of his severe desating the room will be filled with doctors to make sure everything goes smoothly. Right now, I'm just thankful that this isn't the room the doctors had to urgently flood into for an emergency. Praying for that family. 


Other than the trach change we really don't have a plan. He doesn't appear to have an infection of any sort that is causing the pnemonia. The tracheitis is a seperate issue. This means there isn't anything we can do to make it go away. If it continues to worsen I'm honestly not sure what that would mean. So I'm hoping the new trach is just the ticket we need to give him the full support his body is requiring.


We came into this thinking he wasn't as bad off as last time. He is clearly making that NOT the case. We're just not fighting a fever this time. We, unfortunately know what we're fighting, just not why or how. I'm hoping today marks the ugliest of the xrays and we'll start to improve from here.    


To all of you over in the Promised Land (and by that I mean specifically the Eastern Shore but also more broadly, anywhere but Hopkins) we'll be holding down the fort here in the PICU room #25. Make sure you do the same. 

Saturday, June 9, 2012

Here we are again. Boo.



This was the view from the helicopter yesterday as we left the shore for the second time by flight in three weeks. 


I did get to ride with Rambo this time.




So that was pretty neat. Considering he was headed back to Hopkins. 



I must admit that the view from the air was pretty nice - while on the shore. Once we got over the bay it got a little less scenic. I took some pictures of that too, but they just aren't as pretty. 


Why are we back here?


Pretty much for the same reason. Theodore was doing really well since we got home on Sunday. However, on Wednesday his temperature started creeping up. Each day it went up a little bit more and by Thursday night he had started breathing slightly heavy. We knew we had a pulmonary appointment on Friday and thought they would do an xray and maybe change his antibiotic due to his new issues. Unfortunately, we didn't even make it to that. Friday morning he turned downhill suddenly with fast labored breathing and high heart rate. I called Ben to come home early because I knew we had to get him to the ER.


Thankfully, he wasn't as in as bad of a condition as he was last time. Because of the fact that he had just come home from a pretty heavy sickness we didn't want to wait. And I'm glad we didn't.


We met the same doctor in the ER that we met last time and she knew we had to get him over the bridge. They didn't bother trying to get an IV or blood cultures because of the lack of success last time. Hopkins was called and they sent the helicopter again.


Why the helicopter this time?


Two reasons 1) What was stated above: how sick he was and how long he was here last time. 
2) Traffic. I'm so glad that Hopkins took that into consideration. It was a Friday in the summer. They knew it would be at least a 4 hour trip both ways if they drove.






Little man with his ear protection on. So cute. Miserable, but cute.


We were sent to the PICU again. An xray was taken and his left lung is completely white. Pnemonia has taken it over and apparently doesn't want to let go. His suctioning need had increased greatly and his oxygen need had also significantly increased. Each time he was suctioned or oxygen was taken away for a few seconds he would desat hard and it was taking him longer and longer to recover. He was put back on the vent for only pressure support again to pop open his lung. Unfortunately last night he continued desating and working yet harder to breathe so he was fully put on the vent. He was extremely miserable this morning but has finally fallen asleep for the afternoon. His heart rate was still high but down to 147 while sleeping which is the lowest we've seen it in days. 


Cultures thus far have all come back clear but his white blood cell count was above 31,000 which is extremely high and implies infection. We just can't find it yet. Cardiology is being brought in just to rule any heart issues out. We can't seem to figure out why this pnemonia is so prolonged. 


So that's where we are. Rambo enjoyed some daddy time this morning.


It helped to calm him down. I hate thinking that today was worse than yesterday but I'm hoping that means that tomorrow will be better. I'm glad we caught this early and hope it doesn't get as bad as last time, but right now he's not doing well. Even with the vent he is tugging so hard. Sleep is good for him. I hope that's how he spends the rest of the day.


Just a note: He is not on the vent because he can't breathe on his own. His breaths are spontaneous. They just aren't effective. The vent is popping his lungs open and letting the oxygen get in as well as giving him about 20-30 extra breaths a minute. 

Tuesday, June 5, 2012

Adjusting.

To the everyday.


To the normal.


To the noise.


Day 2 of being home and I'm feeling pretty good. I can't begin to describe how good it feels to be with my family again. To make my homemade laundry detergent. To smell homemade bread. To drink fresh coffee made from freshly ground beans. To see my kids rooms (which just so happen to be terribly clean thanks to my mom in law - and my kids for keeping them that way.) To see their smiles and hear their quarrels. To see my sweet puppy who I was convinced wouldn't remember me (he did). To go to sleep and wake up in my own bed next to my husband. 


Day 2 and I'm slightly fighting the feeling of being overwhelmed. Not by routine this time - mostly because we are done school for the year! Woot! But by the noise. I forgot how loud all of Theodore's equipment is. I've forgotten how to tune out the constant humming. Therefore, talking has to be louder, the tv has to be turned up. The noise that three little children can make. The noise of me having to repeat myself over and over again to those same three little children. The noise a puppy makes. The noise of my phone ringing. Or even a conversation.


For 12 days it was quiet for me. I lived in a room with no tv. No one to talk to (for part of it). The hospital rooms are even private now, so there were no other nurses or patients or commotion. The equipment is built in so everything ran so quietly. No phone ringing. I was used to the quiet.


Now we are back to reality. And I do love this reality so. Albeit, much louder and a little more chaotic, it is a wonderful thing. I've almost retrained myself to hear above the humming. I can almost hear a car pull in the driveway or a knock at the door. And I'm liking the fact that it's almost 1 o'clock and the tv hasn't been turned on yet. 


Rambo has been in a constant good mood. Happy to wake up. Happy to play. Happy to fall asleep. He is thoroughly enjoying his siblings and they him. 


Yes, life is good. I'm not too pleased with the diapers I've been changing. 14 days on a few antibiotics and 12 left to go and those are only going to get worse. But I think it's a worthwhile exchange. Of course, in 12 days I might be saying something else. Remind me when the time comes. :)



Sunday, June 3, 2012

And can it be?

HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME.  HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME.

Yes, we finally made it. I'm so glad to be back on the shore I can't even tell you. For now, Rambo is doing well. He's glad to be back home on the floor rolling, scooting, playing, etc. I'm hoping to be Hopkins free for at least a good six months if not more. We shall just have to wait and see. 


I suppose, considering how sick he was, a two week stay isn't that bad. The PICU doctor happily said the day we left intensive care "We fixed him!" Yes you did. Thank you.  

Saturday, June 2, 2012

Apparently..

I've been going about this whole thing wrong. See, I thought people came to Hopkins for top of the line medical expertise and quality of care. Silly me. No, apparently people come here for the private rooms. Or so that is what was clearly explained to me yesterday. 


The new Children's Center is nice. There is more room, no matter what floor you are on you are able to spend the night with your child if you wish, things look cleaner, it's more up to date and what you would think of when you think "Hopkins". The only problem is that a few things were over looked. Silly, little things. Like safety. 


I won't bore you with all the details about why this is so. Or about how even the nurses don't like the new set up. I will, however, bore you with what I found to be absolutely incredible. I said a few days ago that Rambo was finally moved out of intensive care and into intermediate care. I was wrong. Hopkins no longer has any form of intermediate care. It goes straight from intensive to general pediatric care. There is nothing in between the two. And that is, unfortunately, right where Theodore falls. Just on a normal daily unsick basis, he needs more care than is provided here in general pediatrics. I can't believe that a world renowned hospital overlooked the necessity of such a place. Even his doctors agree that he needs constant care but we are told there is nothing we can do abut it. We are left to pick up the slack. The doctor said quote We thought the parents would like the private rooms. You always have the option of one of you staying here with him overnight. end quote. So we asked the question of why we couldn't just take him home and she proceeded to agree with us that he would get better care at home. 


I'm sorry... what? I thought the whole point of being at a hospital is because you receive better care than at home. 


So here we remain. I suppose I should tell you why we are still here. We thought we would be going home yesterday or today. (There we go again thinking. We should know better.) The reason is because of Rambo's bloodwork. His platelets have more than tripled as have his white blood cells. Neither of those really mean anything on their own but are possibly signs of something. His WBC is usually around 6,000 and it was over 18,000 yesterday. His platelets should be around 200,000 give or take and they have slowly been counting over one million. Of course this would happen. So he was started on a 48 hour course of an antibiotic yesterday and we are working on getting blood today. He's already been poked 4 times today to no avail so the docs are going to try an arterial stick. Painful, but necessary. By all accounts he appears fine. He's on normal oxygen, good color, happy mood, etc. The issue is the possibility of what could happen. We'd like to see both counts start to trend downward so we know that we are covering the possible infection or whatever he might be brewing. If they do not succeed with the arterial stick then we will have to go without the information and just watch him carefully to be sure he's fine. Not necessarily comforting, but what can you do? 


Thankfully Ben was able to come back up for the weekend so I'm not alone and so we can tag team Theodore's care.  We still have the hope of coming home tomorrow. We shall see.


In the meantime, we'll be at Hopkins doing their job. 


I should note that none of this is saying the nurses are bad or don't care. The issue is the way the units are set up. It's quantity not quality that is the issue. They need at the least more staffing. What would be better is having intermediate care again. I think they will find this only overloads the PICU and causes for more trouble without. But what do I know?