Tuesday, July 31, 2012

I saw this commercial once about cupcake pans....

...it was a ginko.
(just taking a poke at my mother in law.)

Basically everything is up in the air. Our insurance will not cover our stay at JHH for much longer but we cant go home yet because we don't have a vent. And the intermediary place we were going to go to may now not have a bed available. I don't know where we'll go but I have a feeling I may never see home again.

In the meantime.. here are some cute pictures of the little man. Including one of his new haircut.





Friday, July 27, 2012

And an illustrated book about birds.

Well, it appears we will be here for another 3 weeks or so. Rambo is doing well but it's coming down to coordinating the home vent stuff that is holding up the works. I, for one, am glad just to have an idea of a time frame and also that I am not the one tying up all those ends.

So to figure out what in the world we'll be doing for the next three weeks, other than the obvious of occupying this child, I thought I would give you a nice compilation of what's been going on here to do just that. Here they are in no particular order:

Rocking, rocking, rocking, rocking.........

Working on and FINISHING crosswords. With our ( mine and my mother in law's) knowledge and my stand alone spelling skills, we' re pretty much unstoppable.

$.99 soda refills.

Singing any random Nirvana song that comes to mind. As well as humming a childrens song that Max insists on singing 100 times a day to Theodore.

Writing this here blog- luckily for you.

SpongeBob, Spongebob, SpongeBob

Following behind Max, me with a smirk on my face, as she gets thrown off by a closed kitchen door and proceeds to utterly get lost in the house we are staying in- and have been in for weeks.

Look and find books. Serious hours can be passed with these.

Being forced to decide whether to finish a movie I came in at the middle of or continue searching for something decent to watch.

Telling embarrassing stories about myself such as getting completely panicked when a tiny butterfly clip almost took me down. I'll let you fill in the gaps to that story however you please. I can guarantee nothing you can think of would be more embarrassing than the reality.

Trying in vain to empty the water out of Rambo's humidity tube without disconnecting it.

Daily calls to the kiddos.

My new discovery of Instagram. Yes, I know its been around for awhile.....

And from tonight on out, watching the Olympics.

So now you pretty much know exactly what I'll be doing for the next few weeks. Feel free to share any embarrassing stories about yourself to help pass my time. It's appreciated.

Tuesday, July 24, 2012

Who lives in a pineapple under the sea?

If you don't know the answer to that question consider yourself blessed.

We are still in the PICU because there has been no room for us in IMC. We are told that today might be the day. I am certainly hoping so. Not because I love the floor so much but because Rambo is more able to move around and play when he is there. As is the way it should be. I'm just getting a wee bit tired of the holding pattern.

There really isn't a lot to report. Theodore has, for the most part, been a pleasure. His monitors, on the other hand, have been famously annoying; beeping with every bounce and turn. Poor Ben got to go home to a flea infestation and what appeared to be a wild cat exhibit. Which is why cats are bad pets. The second you leave they go ferrell in the name of revenge because they are prissy little beings. It only took Ben about four days of constant bombing and vacuuming and washing to finally be able to walk through the house without a barrage of fleas attacking him. Have I said how much I hate cats? But on the bright side all the cats are dead and their bodies are strung up outside as a warning to all.

Not really.

Here's a few pictures of Rambo over the past few days. Yes, he is the cutest thing ever.




Monday, July 16, 2012

Can you hand me a gau??

You know, because gauze is plural.....

We have made it. And by saying "we have made it" I really mean that we have made it! Not only is Rambo alive but he is acting like himself- 15 minute naps and all. All I can say is thank you Jesus. I wasn't sure that I would see him be his sweet self again, or get his most wonderful hugs and kisses, or watch him belly laugh. And he has done all of those in the past three days.

Tomorrow (as long as there is room) Theodore will be moved out of ICU and into intermediate care. The plan, and you know how that goes, is for him to come home on a vent at night. Its unfortunate it took him nearly dying for this to happen. It really is. BUT at least everyone is in agreement now. Until someone from somewhere comes along and decides on a whim they don't think he needs it.....

Okay, I'm stopping there. I won't be negative. Don't be negative, Amanda. Really what do I have to be negative about? He is ALIVE and that is enough.

Rambo is still a little weak. He can't hold himself up well when he's on his belly and he definitely can't get up to his hands and knees yet but he will get there. His hair cut is...... lacking, to say the least. He's in need of either a high and tight or a mohawk. Neither one of which I really want him to have but this awful "do" on his head is a 90's haircut gone wrong. Poor guy can't catch a break.

Thank you to everyone for your kindness, generosity and prayers. Thank you for kind words. For cards. For visits. For pleading to God on our behalf. Thank you, God, for my son who is here because of You.

"For this reason I bow my knees before the Father, from whom every family in heaven and earth derives its name, that He would grant you, according to the riches of His glory, to be strengthened with power through His Spirit in the inner man, so that Christ may dwell in your hearts through faith; and that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ which surpasses knowledge, that you may be filled up to,all the fullness of God. Now to Him who is able to do far more abundantly beyond all that we ask or think..." Ephesians 3:14-20

Because of your prayers and God's goodness I did feel the length and breadth and height and depth of His love. And I am exceedingly grateful He did far more than I could have asked.

Thank you doctors and nurses and helicopter pilots.

My list of things to be thankful for has grown by at least 4000. I never thought I'd be thankful for a 4am Diet Coke. Or a Diet Coke in general.

My belly is now talking to me. I am hun-ga-ry. I bet I'd be thankful for a Diet Coke again right about now. It's weird the way things work.

Sunday, July 15, 2012

Phew.

As I look back on this past week, all I can say is "Phew."

Its not until after the fact that doctors start saying how bad things were. Not fully anyway. We knew things were bad, it was obvious. But doctors begin saying their true feelings afterwards. After the first four days we heard everything from, "He was in the deep dark woods." to "He really scared me." to "He was incredibly sick."

I'm sure that Ben was processing things more quickly than I was. It wasn't really until yesterday that I realized Friday, Saturday, and Sunday they were doing ALL they could for him. They could offer up no more support.

Phew. Rambo is still being highly supported. They are allowing him to wake up more each day. They continue to slowly wean the vent. I wonder if pulmonary will actually consider pressure support at night long term for him yet. We still don't know what happened. We don't know if it will happen again. I don't know how much lungs can put up with and still get back to functioning well; lungs that weren't even the most healthy to begin with. A CT scan of his lungs was done several days ago. They wanted him in a more stable position to do it, but it seemed likely that he had a pulmonary embolism and they needed to confirm so they could treat accordingly. Even though this is highly unlikely in a young child it seemed to fit the bill with the way in which everything happened. It seemed too good to be true that we might have an answer. And it was. Its again one of those fortunate/unfortunate things. They did, at the least, get a good picture of the lungs and it wasn't pretty. Five days into this illness and on the upswing, and he was living off of a small section in the right upper lung. There were places that were not functioning at all- no air exchange whatsoever. It makes me wonder what he was living off five days prior, and shows why he was in such a dire place. They have just today changed his clotting meds to shots. He'll be getting 2 shots a day for the next 3-6 months. They will repeat the ultrasound of his vessels to see if any new clots have formed or if these existent ones have moved. He also gets another echo tomorrow since he is now off all the heart meds to make sure that's stable. Lets hope it is. He amazes me each time I look at him. Each day I am starting to see a little more of the Theodore I know. It's going to be a long road. But I'm so thankful God has blessed us with another day with this sweet boy.

Friday, July 13, 2012

Catch up

This is going to be short but ....

As of yesterday they have gotten Rambo's breathing under control.

As of yesterday they have started letting him "wake up".

As of this morning he is off the nitric.

As of today he has stopped getting the insulin drip. (The picture shows how his poor little toes have been abused- glucose tests every hour).

As of tonight he is down to 30% oxygen. Vent pressures are still high.

Today they went up a little on his heparin and down on the milrinone and dieuretics.

Today I got my first smile of recognition!!! He's not with it a lot but he definitely threw us both a few :)


Tuesday, July 10, 2012

Burn it with fire

There's good news and there's bad news. The good news is that respiratory wise Rambo is looking better today. His rate has slowed down, his oxygen requirement is down, and he appears, at least for the moment, to be working less hard. I dare say almost comfortably. His broncho spasms (which were part of the asthma like response) have stopped and today's xray did not seem changed. We have finally gotten his breathing to a more manageable place.

So for the bad news.....

They got around to the echo yesterday which showed that the pressures in the right side of his heart are higher. This is because of the back up in his lungs. This in turn is causing the unoxygenated blood from the right side to mix with the oxygenated blood on his left side through the residual VSD that he has. Which means that unoxygenated blood is being pumped through his body where oxygenated blood should be. Therefore causing low saturations and part of the need for increased oxygen requirements. Basically the lungs are affecting the heart which in turn is affecting the lungs which affects the heart which affects the lungs and so forth in a viscious cycle.

What can they do about it? A few things. They put him on nitric oxide to help beef up the oxygen already in his system (basically). They have started him on milrinone for his blood pressure and they also gave him blood since his hemaglobin was low. (The more red blood cells the better.) This all has helped overnight and like I said before he appears to be responding well.

But that's not all....

He has been very swollen and they noticed this morning where the central line is (his left femoral vein, not his chest) the entire leg is taut and huge. They did an ultrasound and found clots. This meant the central line had to come out. Which now means not only a shaved head again for another IV but a need to prioritize what meds he is getting and when. So he is not getting a lasix drip anymore to pull off some of that extra fluid. But his face did look a little more normal this morning. :)

Right now he is getting an ultrasound of all his extremities to look for anymore clots, to see if there is another vein to do an IV in, and to look at his liver because his enzymes have been high. Hematology said they would most likely start heprin to keep the clots from getting larger but they wanted to look at the ultrasound first.

One more thing....

His body looks like its on fire. Literally. He is red from head to toe. I'm not sure how well the pictures show it but he is RED. We are not 100% sure of the reason for this but the guess at this point is that his blood pressure medicine is inducing it by dilating the vessels. At this time it does not appear to be causing any trouble but they started benadryl just in case.

And I believe that is the last of the bad news. He's had a lot of visitors today; allergy team, infectious disease team, hematology, etc. All are going to proceed with bloodwork of some sort. However, allergy does not think any of this is related. For many reasons which I will not write out because it just doesn't matter. Infectious disease wants him tested for hepatitis and a bunch of other viral things that he probably doesn't have.

Its been a busy few days. I got my first good nights sleep in a while last night and I did not want to wake up this morning. Some more good news-Children's House called us to say they have a room for us. Woot!

That is all for now. Just remember what ol' Jack Burton does when the earth quakes, and the poison arrows fall from the sky, and the pillars of Heaven shake. Yeah, Jack Burton just looks that big ol'  storm right square in the eye and he says, "Give me your best shot, pal. I can take it."





Sunday, July 8, 2012

Medical mystery

I don't have the energy to post all the details but today has been a trying day. Theodore has been up and down a million times over. One thing will look good but it causes something else to crash. Right now they are taking him off the "ISO" because his blood pressures have been way too low. They are keeping him relaxed and sedated with other drugs in place of it. So his blood pressure has come up but now his oxygen is down and he's working really hard to breathe.

This has been the story all day. His xray  this morning looked worse than yesterday. But then he had a big dip in sats so they did another xray and it looked better than the one before- not what they were expecting. No cultures have come back with anything growing. There was a rumor of one being positive but no one has been able to find the proof. Long story short: they are perplexed.

He is no better. He is not out of the woods. He is still swollen. He is keeping them guessing. And busy.

I thought about not posting these pictures. They aren't really easy to look at. He looks a lot different from the ones before. Keep praying for him and for us.




Saturday, July 7, 2012

Spinal crackers

Well.... where to start......


I'm a mess today. Totally fragile. I'm being such a girl. Rambo looks "better" today. And by saying that I mean only that he is not heaving quite as heavily. He is swollen all over and surrounded by pumps and bags and equipment. They have been messing with his vent all day trying to get his oxygen and carbon dioxide levels evened out. The problem is that he has two different things going on: pnemonia in his lungs and a severe asmthmatic like reaction in his airways. They way you treat the one is not the way you treat the other. In fact, they can be detrimental to each other. We get his oxygen levels looking good and his CO2 goes way up or we get his CO2 down and his oxygen goes down. They are setting low goals hoping to meet somewhere in the middle.


The good news is that they got the amount of oxygen they are giving him down from 100% to 65%. His sats are sitting slightly low but that's the lesser of the two evils for now. He's pretty much completely sedated and I'm happy for it. 


They just did a bronchoscopy; thankfully it was uneventful. They had to do a trach change beforehand so they could properly ventilate during the procedure. He was in a tenuous enough state before a trach change, but they took every precaution and it went well. Fortunately, or unfortunately, who knows... the bronch didn't show anything unusal. No inflammation, no mucous, nothing unusual. We were hoping it would give us some answers.... but it didn't. The doctor did get some cultures and we'll see if anything grows out of it. Part of me is happy the other part is a little let down. We're still in square one.


As far as I'm concerned - I'm tired. I fell asleep at 6pm last night. I woke up for a short bit from 9-11:30pm and then slept again until 7am. I think I'm emotionally drained. I feel utterly sick that he could be ill from something at home. I know that it's not our fault. I know that we don't actually know what's causing this. I know that no one is blaming us. I know that nothing comes to us that isn't allowed by God. But I just feel.... guilty, sick, sad..... I'm tired. I've cried several times today. And the only thing that's gotten me to laugh is a botched crossword answer of "spinal crackers". It still makes me laugh. 


I'm trying to keep my mind from thinking too far down the road. If/when he gets home will he be the same boy he was 2 days ago? Is this causing permanent damage? Will he see with the same clarity? Will he still be so happy and carefree?


Theodore is in a critical state. The nurse said this morning that he's just stable. I have pictures to put up but my lap top is malfunctioning so I'll have to do it in a separate post. We're still waiting on the echo to look at his heart. We are having our equipment tested to see if there is some sort of mold, fungus, bacteria in it that is triggering this. And then we'll have our house tested... and who knows what else we'll have to do to be sure he is safe when it is time for him to get out of here. 


For now I think I'm going to try another crossword and see if I can't get myself to laugh again.

Friday, July 6, 2012

Room #23

Theodore is not well.


Today has been terrible. We were home for a record amount of time (on the short side) of less than 12 hours. We brought Rambo home last night around 6pm. His numbers were beautiful. He looked great and at 9:30 his sats and heart rate were exceptional. Unfortunately by 4am Ben came upstairs and told me that he had started with an ever so slight fever and high heart rate. We thought we would make it to the morning and then get him out of the house.


Thankfully, God gave me the urging to get up and go check on him and his nurse. He was not doing well. By 4:40 we were completely packed up and on the way to my parents house. Our thought was that it had to be something environmental, something he is allergic to. So we got him out of the house and got his Claritin on board hoping that would take effect. It didn't. The escalation of his decline happened fast. So fast. And I don't know why.


He was rolling through some serious oxygen so my dad went to get the rest of our bottles from home. By the time he got back I had already called the ambulance. Rambo looked awful. He was blue and breathing extremely fast and hard. His sats were in the 60-77 range. Nothing was working. And, unfortunately, that was only the beginning.


We got to the ER and saw the same doctor we have the past three times we've been there. Thank God for that. They instantly got him on the vent and called for the helicopter. And for a while waiting for transport he looked pretty good. They got some valium in him to keep him calm so as not to fight the vent. But about 5 minutes before they arrived he started desating again. 


Ben met me at the hospital and we drove to Hopkins. All the while waiting for the transport team to call and say that they had arrived and he was in his room. They never did. We ended up walking into the PICU (we knew that's where they were taking him) and seeing his room filled with people. And that's they way it has stayed - since 10am this morning. 


Whatever is going on had only continued to get worse. I wish I could describe to you how utterly sick he looked, but it's impossible. The best I can say is that he was literally heaving like he had run a marathon. I couldn't even stand to look at him. On the vent, full support, and not helping. He is a sick little boy. I truly have not seen him look this bad since he was a newborn. 


The doctors best guess is a very sever asthma like reaction on top of his malacia plus some pnemonia in his lungs. (They did an xray.) What caused it? Who knows. Some docs are thinking that it had to be triggered by something- environmental maybe. Others don't even have a clue. All we know is that they are keeping him moderately sedated on "iso" to help relax his airways. 


The nitty gritty:


He has been on 100% oxygen since 9am and they were only able to get him down to 95% at about 9pm. If they go any lower he instantly desats. 


He now has 1 IV in his head, 1 "midline" IV, an arterial line, and a central line in his chest.


He is on lots and lots of meds- steroids, antibiotics, everything.


They are taking blood gases every 20 minutes- an hour. So far, they have looked bad. He is  retaining way too much CO2. 


His heart rate has finally come down from 170-180 to 150s. 


He is still "heaving" but slightly less than before.


His color is terrible, although he has "pinked up" a little. 


We were only able to be in his room with him for a total of around 30 minutes because there were too many people in it. He has kept everyone on high alert for over 12 hours now.


No one is saying much about how he is doing - not that they have to, you can tell just by looking at him- but the pulmonary team said with a shake of the head "Yeah, he's really sick."


They are getting an echo of his heart some time tonight. They want to check the pressures to make sure it is not being negatively affected and to see if they can get another medicine on board. 


I am still kind of in shock and can't believe how quickly this all happened. Within a matter of just a few hours he went from perfect to near death. 


We're not sure what's going to happen. They are hoping that he will turn around within 24 hours. Or at least make some progress- show some signs of getting better. 


He is not well. 


And my other children didn't even get to see me for more than 3 hours.....


Cheerfully and gratefully I lay my life and all I am or own at the feet of Him who redeemed me. And I do it while my heart lies broken and bleeding before Him. - Elizabeth Prentiss


I have reconciled Theodore to God. He is His. There is no taking him back. Whatever the Lord asks, I pray to faithfully give. And as horrible as it might sound, in the moment watching Rambo, I wish God would just take him because he is miserable. I don't understand the suffering- this middle ground. But God demands my all and rightfully so. The acceptance with joy that Theodore shows on a daily basis is a quality I aspire to. 


I love Theodore. And Israel. And Ruth. And Emma. And Ben. 


I'm hopeful that tomorrow will be better.   


  



Thursday, July 5, 2012

Oldie but a goodie...

It's actually not an "oldie". What I was going to say was quickie but a goodie but that just didn't seem appropriate.... 


We are headed home today. Finally after 14 days- our longest stay these past few admissions. I have stories to share and frustrations to air, but for now just the pleasant news. Home! 


Theodore is back to baseline everything - no vent. I repeat, no vent, no pressures - just trach collar and oxygen like normal. I hope for good this time. Nothing has really differentiated the past discharges from this one except for the fact alone that we are further away from his original virus that got him extremely ill. And we've been told from the beginning that that is what it's going to take: time. 


He's down for a nap and I need to pack!