Rambo's Rampages...

...but it looks like we might be going home this weekend. Let's all play dumb and keep our lips sealed so that Rambo doesn't pick up on it.  He has done extremely well the past two days and although his lungs are still filled with 'stuff' the virus has moved on. We are now just getting through the residual affects (effects... whichever). I'm not sure whether we are looking at tomorrow or Saturday but I'll take either one. As long as an end is in sight then I'm okay with that.  Right now he is happily sitting in a bouncer for the first time in over a week and I'm pretty sure he couldn't be happier. He has missed bouncing A LOT. He's almost asleep and I'm hoping he conks out here soon so that I can grab some lunch.  In more important news (don't take it personally, Rambo, it's just for today), today is my and Ben's 9th anniversary. I never thought we would make it. :) (Yes I did.) I love you, Ben, and I hope one day we are tha...

Today Rambo is being moved out of intensive care and into intermediate care. Finally! One week in the PICU is more than enough. He has been off the vent for more than 24 hours and is back down to almost baseline oxygen. He hasn't had a fever in a few days and it appears that this virus has moved on.  There was a short debate on sending him home versus going to IMC. The reason for not coming home - his lungs still look horrendous. There has been little to no improvement. How he is breathing normal is a question for all of us. I'm sure the fact that he no longer has a fever and overall is feeling better is very helpful. He even sounds okay when the doctors and nurses listen to him. Usually it's very evident when something is going on in his lungs but this time has been different from the beginning. Also, his long stay in the PICU was another factor in not sending him home quite yet.  I'm trying to prepare myself for a long stay. Once he goes to 'the floor' he ...

So far this day has been pretty good. This is day #2 on trach collar instead of vent and he is doing well. They did return him to the vent overnight for extra pressure support but tonight they are going to try to keep him on just the collar. I think he'll do well. They did not get an xray this morning but I hope they get one tomorrow. It will prove to me that he is actually improving and not just building strength to fight this whole thing off again. His mood for the most part has been happy.... until I get here. It's like as soon as he sees me he can no longer have fun. I do not like this.  Yesterday I tried from 3-7:30 to get him to calm down and sleep. It didn't work. Ugh. Today it only took me about 2 hours to get him to fall asleep. I hope we don't have the same problem this evening. I'm sure he's just as ready to be home as I am. Speaking of home..... we are not there yet but are closing in. IF he has a good night tonight and  we can get him to base li...

This was the happy sight I walked into today: (Trach collar instead of vent and a free arm and leg! Little man is hap-py to have his arm free again. ) Which is by far better than this  (Where we started.) Thankfully they were able to get another IV in his hand about 20 minutes before the head one gave up two days ago. Talk about good timing. And this is what we found on the IV board Quite an appropriate quote from John J Rambo. Thanks to the one and only Jibrii who got the IV and also took the time to look up a situation/child-appropriate quote from Rambo. He said it took longer to find the quote than to get the line. This I believe.  Here is where Ben and I have been spending our time The new Children's Center is quite nice. There are certainly its ups and downs. For example: the couch and chair are ups. Standing in the hallway for 3 minutes looking for someone to suction him is a down. I'm torn.  Today because Rambo was off the vent I got to...

A smile???? Why yes I do. And also nose bubbles. We have been able to squeeze out a few smiles from little man for the past two days. It's a rare occurrence but a welcome sight. Right now Rambo is absolutely hating that he is stuck on his back with his arms restrained. He wants to be able to roll from side to side and/or bounce in his bouncer to fall asleep. Neither of which are possible so he is a nightmare come nap or bed time. Most of our time has been spent trying (in vain) to console him so his heart rate and temperature don't get high. In the picture I was actually enjoying a few minutes of "This little piggy..." and "Pat-a-cake". I'm in the whole mask get-up because he has a contagious virus and we don't want to spread it so anytime we get near him we have to put on the gown, gloves and mask.  As far as progress goes, there is none. Well, that's not true. There have been no set backs for the past two days so I'll take that as prog...

But I quickly wanted to say that we just got off the phone with Rambo's nurse and there were NO setbacks last night. Woot! Hopefully this is the start of an upward trend.....

...that Theodore is a lot better today then yesterday...that Theodore is even slightly better today then yesterday... That it's usually good news when you get a phone call at 1:30am... That moving away from a "more portable" vent to a full fledged ICU one is progress... That deciding to go ahead with a picc line was an easy decision (and then when that became a non option, being ok with the fact that they only have one little bity peripheral IV at the moment)... That I don't have to constantly remind myself that although I carried Theodore, God formed him and loves him more than I do... That I'm finding it easy to remember that my life today is not necessarily an indictation of what my life will be like tomorrow (remember telling me that, poppy?)... That I am entirely happy with the thought that he is not one step outside of God's will for him... That I didn't go three days in a row without makeup - including out in public. The truth of it is that Rambo ...

Today I will not think about how Rambo was worse today than yesterday. I will not think about how his fever and heart rate are up. Or how his pnemonia is worse. Or how we are away from 3 of our kids yet again. I will not think about how we will miss out on our anniversary weekend. THIS IS THE DAY THAT THE LORD HAS MADE. LET US REJOICE. I will be thankful for.... Sushi and Sapporo. A harbor view (even in a city I don't care for tremendously.) Cheesecake!! (All of which were from our evening of choosing to make the best of our situation and enjoy our anniversary even if it's not what we had planned.) Finding my three year anniversary gift that I lost several months ago! In the pocket of a sweatshirt! Woot! Humor from the PICU staff. Raspberry Cinnamon Rolls. RASPBERRY, people!! Be jealous.  And to list a few that I don't have pictures of.... Rambo being slightly less agit...

We're finally sitting down tonight in the Children's House almost ready for bed. (Thankfully, they were able to fit us in. Yay!) The past two days have been tiring, to say the least and I am looking forward to a great nights sleep. Hopefully. I'm sure some of you are wondering what exactly is going on, how Rambo is doing, and why he was flown out. I will try to answer all of that in a not too lengthy post.  As you know, he was struggling over the weekend with a high fever that wasn't coming down with medicines and was making him overall miserable. I took him to the doctors on Monday because he just wasn't getting over it and starting to have more critical issues in my eyes. I told the doctor when we got there that I wasn't sure the hospital could be avoided this time. One of my biggest concerns was dehydration because Theodore had been struggling with that, but he assured me he was not dehydrated. He thought it was probably the same virus the other...

This is going to be short and sweet because although it's 7:30 in the morning and I'm already showered, I'm still incredibly tired and haven't had coffee yet. Me not nice. So quickly for the many of you who were not in the know, Theodore was airlifted to Hopkins yesterday afternoon. I promise for details and pictures later but I thought an update on where we are now is more appropriate. It basically looks like there are either several places of infection and/or collapse in his lungs. It has been nearly impossible to get blood from him. Almost impossible for IV access. I think they've tried for an arterial stick at least 6 times with no success. I shan't even talk about the IV tries.... But right now he has an IV in his head. He has been confirmed with some contagious respiratory virus that may or may not have gastrointestinal issues. They've taken all sorts of nonblood cultures and we're waiting to get the results of those. Right now, Theodore is sleepin...

It wasn't strep. No, it's a highly contagious virus that just has to work itself out. Nothing we can do for it. So, yay. It also means that we can't go anywhere... oh, wait.... I don't think that's going to be a problem. But in all seriousness, it appears that Israel and Emma are on their last day of it. And thankfully, Ruth shows no signs of having gotten it. Unfortunately, Theodore has caught it and the last two days have been nothing but extremely high heart rate, uncontrollable coughing, fever that won't go down, and constant crying. Poor guy is miserable. Today is day 3 for him and the doc said it usually lasts 3-5 days. Maybe we'll get lucky and tomorrow will be better. Since we're on the topic of good news I'll continue the subject I brought up the other day (Rambo's genetic appointment). No, don't get your hopes up. This is a sarcastic 'good news'. We have again been officially told that he is one of a kind. But the good...

This is the second go at this post. Not because my first one wasn't good enough, or witty enough or because I didn't finish it or... .anything.... Just because I thought better of it. You see, I've had a hellacious week. Hell. A. Cious. There were certainly the good moments like Emma's birthday. Like Ruthie making me hard boiled eggs for breakfast on mother's day. Like the birthday/mother's day party. Like Emma so innocently wishing over her birthday cake candles to be the tooth fairy. (Adorable, amiright?) I'm willing to admit that when she told me that it almost brought me to tears because that sweet innocence will be gone all too soon. But for right now, she really believes she could be the tooth fairy. And no worries, Ben was sure to capitalize on my sad state by mocking me and actually making me cry. Thanks, babe. I can always count on you. Lord help me the day Emma finds out the tooth fairy isn't real. She couldn't care less about Santa, ...

We had a quick 30 second cell phone photo shoot this morning. Rambo was being exceptionally photogenic... ...on the move as always. Hair out of control as always. Cute as always. Happy and not miserable NOT as always. That's something to be thankful for.

Today is Emma Rose's 5th birthday!! She said last night she was going to wake up early and get in my bed for birthday snuggles in the morning. I didn't believe it until she actually did it at 6:45am. I think she's had a pretty good day- hello kitty tablecloths, presents, cake... Ben worked today so her party is on Tuesday where she will again get out the tablecloth, open presents, eat cake... Today was also our first Puppy PreK class. I am proud to say that I made it out of the house and to the class on time with two kids in tow! That's pretty amazing for 9am. Of course, this was all thanks to our nurse. Somehow I managed to find a place for the dog (they don't come to the first class), a place for my oldest, and a place with me for the girls without even remembering Rambo. How do I forget him? Imagine my surprise when my sister in law asked who was taking care of him for that hour. (Thank you, Leah, that could have been bad. Don't tell an...

*whispering* Rambo is doing better each day. After his downhill day this week I was sure that Hopkins could not be avoided. Whatever he had appeared to be in his lungs. Not sure what happened over that day and a half but I guess he decided he was going to get the better of it this time. I like that decision. Hopkins avoided again! Next week we have two Baltimore appointments, of course on back to back days. I suppose making two trips up there is far better than having to stay there. But I do hear the new Children's Center is nice... I guess that's something to look forward to if needs be... Rambo will see his geneticist and then nutritionist. I'm hoping that new tests are out for genetics, but I doubt it. We haven't heard anything from his doctor saying they've found someone else like him or that new tests have been completed. My hopes are still up for a new genetic disorder named after him. Looking for the bright side, people.  I'm not sure the nutritionist...

Or, in my case, Theodore is saying to me "I know it's not always easy being my mom..." Unfortunately, this is as happy as Theodore has been the past few days (sorry for the dark picture... cell phone....) I bet you'd never guess he appears to be coming down with something. I've seen him smile once today.... that's all. And I've only been able to not be holding him while he's sleeping. Late in the weekend he started acting like something was coming. And it's only progressed. It's probably tracheitis. Again. I have no idea how to keep him from getting that. We keep his trach cleaned and changed and still.... oy vey. Who knows with him. But this should most definitely make for a fun day in Baltimore tomorrow.  I'm hoping this passes with nothing worse than a tired momma and a good dent in our suction catheter supply.  We shall see. 

Sunday morning.  Ben is asleep.  The kids are at Sunday School. It's just me, the kid, and the dog. Looks like I'm on my own. Idaho is even sharing his toys. (The name comes from "Dune" the character Duncan Idaho) Apparently, I'm not needed. :) But wait, Theodore DOES need me. He needs food.      Although, he appears to be working on that too. Don't think you're going to get anything that way yet, buddy. But keep trying. Happy Sunday!

Could it really be 9:30 on Saturday morning and my kids are still asleep? Two of the four anyway. But it's the girls who are still sleeping so my morning has basically been cake. Woot!  That's all. I just had to say that I'm finally catching a break this week. Go me! I do hear footsteps upstairs, so I think my nice relaxing morning is about to be over, but that's okay.  Enjoy today, all. Maybe the entire day will feel like a good Saturday morning. We can always hope.