A boy named Lennon

welcome

Lennon was born with a rare metabolic genetic disorder called Urea cycle disorder - CPS Deficiency. He was diagnosed at the age of 4. In November 2008 he underwent not one but two liver transplants in order to save his life and could potentially face another transplant. This is his story.

Yeah we all shine on, like the moon, and the stars, and the sun. John Lennon

A title eludes me today


So Lennon is in the PICU - his heart rate is going down slowly - 157. However his breathing is still labored and hi requires the nasal canular for oxygen. Now there isn't any fluid or amount of fluid on the lungs that would cause him to breathe like this. However there is fluid collection on the left side, that they will tap into today with a pictail - similar to a drainage tube to get the fluid off.

This morning some levels are really low - others are really high - they are going to talk to hemoc (blood) about how to fix his issues as he is at a high risk for bleeding right now. His white cell count is also extremely low which means he isnt able to fight infections as well - and his glucose is high and some other ones that I have a difficult time remembering.

He is very feisty - in fighting spirits - telling the nurses to leave him alone. He is not interest in anything but potato chips (thank god for IV Nutrition). I did ask since he is keeping things down now (so appears) if we can start the feeds again, thinking that might help in some way. I don't know how long he will stay in the PICU.

As this is an earlier post, I am editing it. Lennon will have his port replaced today. The yeast infection he has been dealing with appears to be localized to the port as opposed to the blood stream. While this is a "good" thing, I a bit fired up this morning. They tested blood from various locations and this is how they know its not in the blood. I talked to his doc, who didn't mention a procedure today. So a surgeon came in, which caught be a bit by surprise because no one told me of the plan of action. Surgeon took the blame by saying she should have talked to the PICU folks to see if they had a chance to talk to me. It is Monday morning and they are doing rounds and plan of actions for the week. I don't care. Someone should have come talk to me before the surgeon walks in with consent forms eh?

Anywho, this is what it is.

Infection!


So the cultures from yesterday indicated that Lennon has a fungal (yeast) infection. He is been running a fever (highest was 102) and listless. He has been keeping his meds down, but still burps a lot. Because of the infection his heartrate is 190 and so we are going to the PICU until he is stable. This could mean we will be there a few hours, a day or more. But because Lennon is still/already so fragile he needs to be watched a little closer to make sure his heart is ok and nothing else is going wrong.

This infection came up really fast because he was feeling pretty good the other day except for his belly ache. But no sooner did he come out of the procedure he wasn't doing so hot, and than bam fever that wouldn't go away, and his breathing which has everyone worried but there is not fluid collection on the lungs or anything. It is all because of this fungal infection.

From Transplant to Gastro


So the procedure went well yesterday. His stomach has reduced in size and the stent they placed will stay in for awhile and that should remove some of the problems. Since the liver is working, transplant thought it be better for GI to get involved.

He is not able to keep anything down at this point, and they are giving him nutrition via IV ..TPN and lipids. Today they are going to do more blood cultures, urine samples etc in part of see if anything is going on with his blood, other infections and if he is loosing his electrolytes through the urine. Hematology is also going to get involved to figure out his blood issues such as his lack of clodding etc.

So we will play the waiting game once again and hope there is a resolution. Alas this is all I have for now.

Doin' ok!


So after a late start (scheduled at 11 a.m. going in at 2 p.m.) Lennon is doing well. The stent that was in from the transplant surgery was in the wrong spot i.e. too low in order to cover the stitches that connected the bile duct. Hence there was leakage going on that made Lennon so sick! They placed a new stent into the spot where it was supposed to go and removed the old one. This means that at some point they will have to go in and remove this stent but I imagine it won't be for another 3-4 months give or take. Hopefully in the mean time everything else will work itself out and we won't have to deal with soo many infections anymore.
One of the after affects of the procedure is that the Doc had to place air into Lennon and he had a major burp down in the PACU and I supposed this will happen over the next day or so for the air to release itself. I really do hope that his intestine issue and bile duct issue are resolved and that we now know the culprit of this situation.

The other thing they did is replaced his NG tube, which is great except it was too short and they placed the tackaderm (sp) right onto his skin. Lennon has a major adhesive allergic reaction that will show up as sores just starting to bleed, the skin to blister or even resemble 2nd to 3rd degree burns. By the time he came back to his room, his face already showed indication for the reaction. So his NG was changed again, this time to the right size and then duraderm was placed under the adhesive of the tape.

He has now settled down and calmed down for the moment and is watching spongebob. Actually he looks like he is going to sleep :o) which he very much needs, though about 15 mintues ago he was very insistend that he'd go home!

It all boils down to...


the stent removal tomorrow. All the top dogs (transplant and gastro) are thinking that Lennons problems are because of the stent that didn't fall out when it should have. Thus given him issues in the colon area. They have been treating him with a med, that should eliminate nausea, speed up the process of digesting, and take care of the reflux he is dealing with right now. The docs think that after the stent removal all his current issues will go away. The poor kid has the major case of diarreah.

Since the study yesterday his belly has swollen and gotten bigger. Again the contrast has upset his insides and again they tell me that after tomorrow it should go away. There are common risk of procedures but in addition there is the risk of his intestines getting cut and they have to actually cut him open to fix it. He will have the breathing tube in for the procedure but should come out as soon as they finished.

The plan is to remove the stent via scope and then clean out whatever junk may have accumulated. This will happen after 10 or 11 a.m.

I am nervous about tomorrow about as nervous when he got the transplants. But I am going to think positive and that everything will work as it should!!!!

Why is it that...


...nurses think that parents are not present in the room or even in the care of the child. When one thing grinds on me is that when people step on parental toes. Example, Lennon receives a breakfast tray and needs to be encouraged to eat the food. While we do not stop him from eating chips, we do set the rules of when and how many throughout he day. If it means saying, "you will get your chips after you eat the yogurt (or whatever)". No instead, some nurses think that if the child asks for a bag of chips 8 o'clock in the morning, its ok for the child to have that.
The other thing is that when the child has meds do, when you are called away, come back to finish the rest of the medications. Don't let the parent come after you to do your job, lord it isn't that complicated, or let the parent do it in the first place. It really burns me up when something is started, and then not finished. It isn't like a piece of art where you can do that with.

I have friends that are nurses and I generally like nurses if they are given thought to the parents and some considerations.

Results..what results?


Alright, so they put a lot of contrast down the NG tube, and Fluro told me there is no obstruction (later confirmed by the diapers we had to change, I think my last count is 15?) but he does have reflux. Ok. In the mean time, he is still getting ill. His belly is extended a bit and in some areas appears swollen and oddly shaped. Since I had not seen any docs since 8 a.m this morning (and I am used to them making two rounds a day), I had them paged. The doc (whom I had never had contact with came over) and checked him out. Well, according to him, his stomach is a bit irritated from the contrast hence the extension and swelling of his stomach. OK!

His belly hasn't looked like this in a few weeks and I am a little concerned. Is really all of this because of the stent that is still in there?

Also the nurse today (awesomely good job) printed his results from labs today and I made a discovery. His ammonia was 82 on Sunday and 61 today. Hmm got me thinking that if he now has a healthy liver and he is "cured" from the UCD that would mean that if his ammonia levels go over 31 then he would get sick?! Sorta makes sense to me, but again no one here to answer that questions until in the morning. Sure I can have them paged, but I will just have a doc who is on call and really doesn't know anything anyway. Marvelous thing this teaching hospital, what the heck are they teaching them?

In the mean time Lennon has about 2-3 diapers in an hour. They started him on a new medication to move things faster through his system, and this should help with the nausea and the reflux. Well we'll see how that works out. Though I noted that his burps have gotten a bit less since the medication was started. Now I just wish his diarreah would get under control a bit cause this poor kid is already sore as heck.

He is soo ready to go home. He keeps telling me that and the nurses and the doctors. But he has to wait and gees patience is not his strong point, well what five year old has patience?

Yesterday I had to place a student nurse in her place. Here is Lennon with a food aversion/feeding disorder, and she tells him that if we eat too much we get sick. Sure makes sense, but he doesn't understand that, now does he? He might hear that if he eats he will get sick, throwing out the work we had done to get him to eat. Though this didn't happen, but man people really need to pay attention to the chart and talk to the parents, and be aware of who they are dealing with and what issues are at hand. Then again I don't think you really should tell any child that eating too much can make them sick, this will stick with them for a long time. I know it only happened once but still Lennon is a child with food issues.

However, in retrospect he is still munching away. Today he had a bag of pretzels, some yogurt, 2 cherry tomatoes, ranch dressing, some french fries and half of the small pringles size type. And again I almost got in a battle with the nutritionist. She told me not to offer him the junk food and he would start eating the food on the tray. WHAT? No he won't he will not eat if I keep away the chips and pretzels. I have to offer him everything and allow him to eat what he chooses. He has an NG tube and gets his nutrition through the NG tube when his belly can handle it. Speech pathology (love em) backed me on this, so yay for me and what I know about Lennon. Sometimes I wonder about people and their jobs. I get that she is just making sure that Lennon gets the stuff he needs, but since we are dealing with a food issue here, nutrition is not always in the forefront. While I can and have to offer all the foods to him, he needs to make this choice. And as noted above he does make some decent choices eh? Yogurt and tomatoes, I'll take that!

The other thing today is ..boy I wish people would read medical records! Nutrition said to try and get him to drink KidsEssentials 1.5cal..umm this is the stuff we feed him at home through his feeding tube. Lennon doesn't like milk or milky kind of drinks! Right now they are giving him pediasure (when is belly can tolerate it). Anyway, I had informed her (nicely) that he gets this stuff at home through his NG, but that he won't take it orally. Heck we bought Ensure Chocolate flavor and he will drink half a medicine cupful but he doesn't like it. The past two years he was on a special formula, he is not going to take anything willingly that tastes or reminds him of that.

On a lighter side, Lennon's hair is sloooowly growing in. He is getting fuzz again and it is notably darker than it was before.

Well I think this is all I have for the day. And here is to some answers tomorrow and perhaps a better day for Lennon (keeping things down and diarreah going away).

Communication...too much to ask?


So stent removal now happens on thursday! It appears that when the transplant surgery occured a plastic stent is placed in an area to stop leaks while everything heals. In most cases they fall out on their own, they are supposed to do that, well not for Lennon. Lennon's stent is still in place! Thus they have to go in and take it out, which can cause some of his issues.

However what I was not told is that they are doing a study of his stomach and intestines. WTF? It is a matter of drinking dye and taking pictures of the inside. I am ok with this happening, not a huge thing or a dramatic deal but c'mon shouldn't someone talk to me? This isn't the first time something like this happened and ya would ya thought they learned with what I had to say last time, but now they had to let the on-call docs handle it who don't have a clue. Gees.

Is a little communication really too much to ask?

I think not!

Well anyway so I don't know how he will keep this dye down but hopefully they can figure out why he is constantly burping and spitting up or vomiting. So yea for study, nay for no communication!

Until tomorrow world!

Stent Removal Procedure


Stent removal procedure is scheduled maybe sometimes tomorrow, at least this is the thought and the game plan for the moment. When Lennon had the transplant there was a stent placed in where the bile duct was connected and generally they tend to fall out on their own, but in Lennon's case this didn't happen. When this doesn't happen, there gets some junk and gunk build up around it, behind it and everywhere and can cause some problems. The hope is that when it comes out he will feel better and we can be attempting to go home this weekend. If this doesn't do the trick, they will have to do something else, but not quite sure what this something else might be.

Right now his belly is really hurting him but it is unclear why he is hurting. It could be that he feels sick or that there is some cramping going on. While the docs think he looks good, I on the other hand do not think he looks that hot. Then again, he could now be depressed of being here (again) and his affect and mood are a good indication. Or I could be off on this completely.

No real answers on the Weekends


So what is new at this time? Nothing much. Lennon tested positive for c.diff, again. This could be one of the reasons he has not been feeling well and the inability to keep things down. You can read more about it here: http://en.wikipedia.org/wiki/Clostridium_difficile (though it may not be the best source).



They added antibiotics for the c.diff but also to cover other possible infections that have not become clear yet. He did have labs drawn and blood cultured on thursday and those results should come in Monday or Tuesday. Since then the feeds have been started again and 5ml/hour. Not much but at this time my main concern was that he was so miserable from hunger anything will work. He has been eating or rather munching would be the appropriate word. Pretzels, chips and a few french fries. He also nibbled (mouse bites) on a hamburger this evening.



For the first time in a long time, he actually stated he wanted to go home. This (for me) is good. This means that perhaps he is getting tired of being in the hospital. His chronic sickness is not gone but its a step into the right direction. We have to realize that he has been very good at being sick and never been well at being healthy so this is new to him, because despite all the infections this is probably the best he has ever felt. Imagine no toxins that drive you insane in your system? It's like waking up sober one day and realizing how good it feels to not be intoxicated.



One of my commenters (hugs to ya for the thoughtful feedbacks and friendship) mentioned that Lennon has the potential to deal with Fructose Malabsorption (FM). My thoughts on this are as followed: He didn't vomit when he ate, but he would vomit if he drank to fast or too much. He drinks water 9 times out of 10, so how don't know how realistic it would be to consider the Fructose Malabsorption (FM). At the same time, Lennon does not drink (nor has he ever drank) juice. Sevearl reasons for this would be that he doesn't like it, and that it would mess with his system. In other words he got constant acid-ridden diarreah. So there could be something to that idea.

In other news from early this morning, the docs want to take the stint out of the hepatic vein they had placed a few weeks ago when they ballooned it for the second time. However, his ultrasound (that was finally done around 1ish) indicated no change. Since angio is responsible for the procedure nothing would happen until Monday, and then we are not clear on if it is even going to happen. The thought was that perhaps there is some gunk build up around the stint. Makes sense in some ways. I think of it as we eat too many fatty foods and all that stuff that sticks to our arteries and veins and can lead to blockages. But again, I don't know for sure that this is going to happen and probably won't know until in the morning when they are doing rounds. For this minute however has has quit vomiting, been eating a popsicle and drank some sweet tea.

He has been sleeping a lot today and again is currently asleep. So here is to a good nights rest and some answers tomorrow.

Round # 2 ...anyone?


Might get graphic! Sorry.
So following my last post, Lennon spit up yesterday .. the kinda slimey spit up, which he had being doing a few times, but this time there was blood in it. We called transplant and said that we could bring him in as this has been going on long enough. So we went to the ER, and Lennon got some popsicles (his favorite thing when coming here, sometimes I wish he wouldn't like it so much). They also took a bunch of blood (twice) because his numbers where all wack and they wanted to make sure that the whackyness is accurate.

They ended up giving him some vitamin K as he currently is a risk for bleeding. They also did an X-Ray and want an Ultrasound done (which we are currently waiting on). He cannot eat right now in case they want to do a biopsy?? or scope?? or whatever it is they thinking is wrong. Because no one can tell me what is wrong right now.

I can tell you that Lennon is starving!!! It is very painful to watch and see when your baby is so hungry that his belly hurts, you hear his belly grumpy, but he either can't keep anything down or can't eat. However, mind you that most of his vomiting is not from food intake (so it appears to me) it is from when he drinks to fast (again another observation).

Right now he is sleeping and that is probably the best thing for him as he may not focus so much on food. I ache for him and feel his stress and anxiety.

So for now we wait for the ultrasound, the docs to come in and talk to us about what's going to happen etc and their thoughts about what the issue is.

Adjustments, Routine and new infections?


So this past week Lennon has been spitting/vomiting, but transplant had to real understanding of why he might be doing this. However, there appear to be several options.
  1. He picked up a stomach bug? Could be but doesn't seem reasonable because his spitting/vomiting is not consistent enough
  2. He is producing too much acid and the prevacid and sodium bicarp is not enough to for him
  3. He has too much air, which makes him gassy and could cause spitting up
  4. The NG tube as curled at the end and the feeds are going to the asaphagus.
  5. He has another infection, common to the transplant routine. It appears that there are some infections that occur after a period of time after the transplant
On Thursday, I took Lennon to the ER, because he was bleeding from his scrotum. Yes it was just a severe rash he was dealing with from all the diarrhea he had. However, Thursday we were informed to look out for bruising and such as he currently appears to be a risk for bleeding. But again no indication or thought of why he is spitting up/vomiting. This is frustrating, because one of the things is that if vomiting persists for more than 24 hours, call transplant. There have been constant phone calls to transplant about this issue. Anyway, the bleeding really was just from a terrible diaper rash, and we were send home with the instructions to put diaper rash cream on it. (Today it is much better!!!)

Our nurse that we have to help out is awesome, but unfortunately she cannot change the NG tube because she is not an RN. She could do it if it came out by accident or Lennon pulled it out. Well things can be arranged!!! But I don't want to have to go that route.

For the labs (which he has done twice a week) they did a full viral culture thing, in addition to his regular labs. He is low in potassium, his K level is low, and Billi ruben is high and so is his white blood cell count, but no clear indication of why this could be as of right now.

Since he had been spitting/vomiting we had stopped the feeds because well it was somehow pointless to try and feed him if he doesn't keep it in. He already has a food/eating issue and we didn't want to contribute any more to this. He is hungry!!!! But only manages to eat 2-3 bites at a time. He is also thirsty! But here when he drinks (fast) he will spit up/vomit.

Yesterday I started via syringe to feed him 30 ml of KidsEssentials as much as he can master. We started this last night, 2 ml and then a break, 2 more mls and another break etc for 30 ml at a time. It worked, he kept it in!!! So this morning I did it again, and by the time I left for work, he had not spit up or vomitted. I realize we need to do this several times a day. He is supposed to get 135 ml 4 times a day (540 all together). At 30 ml we would have to do this 18 times a day. Well not reasonable but we will get as close as we can to even half of that say 9 times a day, he would get about 270 ml. At least until we can figure out why he is spitting up/vomiting and hopefully continue the feeds.

I am afraid that he is going to loose too much weight, that he is starving beyond belief and that he becomes even more malnurished than he already is. He appears weaker and with less strength, and walking is really a struggle for him. He is in constant hunger, but nothing is appealing enough for more than a few bites. He has sooooo many options and changes his mind from one second to another, and nothing long enough for him to be satisfied. He is trying more foods though and that well that is awesome. I just wish he could eat more rather than just a mere 3 bites.

This is what I have for today.

Not quite as new


So Lennon has been dealing with some terrible acid reflux stuff or too much air, or both. We have inadvertently stopped the feeds as that is not helping him to keep things down, and after the doc visit today, they said ok as long as we can get him to drink ensure, resource boost or pediasure. So we will try it out. We will see how it progresses as that spit up/vomit thing is quite nerve wrecking, not so much for me but for Lennon. Overall however he was very sociable today, something that I am not used to, but he was in a good mood and again has made some good adjustments.
He does appear to have some "extra" fluid in some areas of his body, but haven't been able to track his urine output well due to the C-diff diarrhea situations so that too appears to be getting better!

He is munching up a storm, while he isn't eating consecutive whole meals three times a day, he has this continues snack thing happening, which is good. At least he is now acknowledging hunger and doing something about it, but again the acid reflux issue isn't really helping him at times.

So we take it one day at a time and as we are mending him back to health, the rest of the family is also mending again. A lot of the struggles we had the last couple of years or the last couple of months I haven't tapped into because while they are around Lennon's situation and our home life being thrown into what appears to be a circus, it was not something that I had considered before. I realize that high-stress situations do not always tear and wear one person, it does it to the family and when adjusting back to normal (whatever may be normal to you) it is quite a challenge, because you realize that feelings have gotten hurt, and people changed places on the priority list. Sometimes I think people are afraid to talk about it and while Lennon has had a struggle for a really long time, we struggled with him in many ways but not quite the same. I am pleased and happy to know that the bond with my family is strong and that I am confident we will overcome adjustments and hopefully remove some of the stress in our life.

Improvements!!!!


So I have been absent for a week due to school stuff. Anywho, when I arrived last night at the airport, I was greeted by a complete different child named Lennon. He smiled! He was eating! He was happy! In the short ours that I have been back and I have been with him again, I noted that his eating and drinking habits have improved. Even his walking has made some awesome changes. Home is still the best place to heal!

Home is where ...it all gets better


Lennon is home!

We came home about 1:20 p.m. this afternoon, hooked him to his feed. From the time we left at 12 p.m. until now, his mood appears to have improved. He is anxiously waiting for his brothers to get home from school. The first thing he wanted to do is play his video games. But we asked him to wait until everyone got home.
He definitely seems "better" but of course his road to recovery will take quite some time. He currently is enjoying Max & Ruby, sitting on the floor.

Today I am just going to focus on the fact that he is home. Tomorrow we will (finally) celebrate christmas.

I am nervous because on Sunday I am flying out to Minneapolis/St. Paul for school and will return next weekend. I am glad he's home though and relieved we do have nursing care 7 days a week! I will miss him and be worried but I feel a lot better going away since he's at home with everyone else.

So here is to being at home!

Home Sweet Home - Motley Crue


The day I brough Lennon home, this song was dedicated to me on the Radio. This song rings true one more time, more now then it did then. Who would have known the roads we had to travel, who would have known his life would be an open book, and who would have known how many times the seams could be broken and sown up - just to take him home.

Home Sweet Home

You Know I'm A Dreamer
But My Heart's Of Gold
I Had To Run Away High
So I Wouldn't Come Home low

Just When Things Went Right
It Doesn't Mean They Were
Always Wrong
Just Take This Song And You'll
Never Feel
Left All Alone

Take Me To Your Heart
Feel Me In Your Bones
Just One More Night
And I'm Comin' Off This
Long & Winding Road

I'm On My WayWell,
I'm On My Way
Home Sweet Home
Tonight Tonight
I'm On My Way
I'm On My Way
Home Sweet Home

You Know That I Seem
To Make Romantic Dreams
Up In Lights, Fallin' Off
The Silver Screen

My Hearts Like An Open Book
For The Whole World To Read
Sometimes Nothing-
Keeps Me Together
At The Seams

I'm On My Way
Well, I'm On My Way
Home Sweet Home
Tonight Tonight
I'm On My Way
Just Set Me Free
Home Sweet Home

Motley Crue

Mama I'm Coming Home


So close we can taste it...crossing fingers & toes


So in discussion with the team yesterday, if Lennon can tolerate his feed and gain weight (which is not their strongest arguement) we are looking at taking Lennon home friday. That will make it 108 days away from home. They stopped his lasix and other diarrethics (sp) and so here is to urinating on his own, which he really hasn't done in a long time either since the fluid situation. He still has a small plural infusion on the right side, and so they are going to take an X-Ray tomorrow to make sure it did not get bigger.
He will be on the NG feeding and get 135 ml of KidsEssentials 5 times a day. We encouraging him to drink on his own because if not we will have to add water to his feeds. He will also have a wheelchair for the time being for when we go long distance (dr. appt., stores etc). Of course he won't be needing it in the house but longer walks and such would still be too much on him. His recovery is probably taking longer than everyone had anticipated, but then again who anticipated the last three months?

Since he has the NG tube, he has been assessed for qualification of skilled nursing care at home for about 16 hours a day. Now we don't need quite 16 hours, but about 8 hours would help! Our work schedules, sleep and study schedules are all over the place. I am hoping to change hours at my job so that I am available in the evening and at night, or at least be more flexible when it comes to juggling everything. Though I am not sure what this may entail yet as I love what I do :o)

Long term in Lennon' recovery if the move of going from here to home is not improving his feeding problem, he will receive a G-tube as that would be easier to deal with in regards to his feeds. This means another surgery, it also means taking more precautions about keeping and staying clean. In discussion, there seems to be little worry about infection and Lennon being immune suppressed, and the thought is that he shouldn't do any better or worse than other children who have received the G-tube. But this will only happen if he does not start eating!

In the mean time we will work out the schedule we must maintain...Mondays & Thursday is Blood draw day...and then he receives physical, occupational and speech therapy...at least once or twice a week...we have other kids who have appointments as well...so I can see us having to drive into down at least 3 or 4 days, but I will take that if it means to eat, sleep and shower at home!

Information on VRE


It seems there have been some calls about VRE - so here is some information from the CDC website about the VRE situation. This takes a long time to go away!!! He has had it since oh Dec. 25 2008 and can take months and months before it comes up negative on a culture. He has been treated for it in the past, and I will know this afternoon if they will continue to treat it or if this is something that needs to take care of itself.


What is VRE (vancomycin-resistant enterococci)?

Enterococci are bacteria that are normally present in the human intestines and in the female genital tract and are often found in the environment. These bacteria can sometimes cause infections. Vancomycin is an antibiotic that is often used to treat infections caused by enterococci. In some cases, enterococci have become resistant to vancomycin and are called vancomycin-resistant enterococci or VRE. Most VRE infections occur in people in hospitals.

What types of infections does VRE cause?

VRE can live in the human intestines and female genital tract without causing disease (often called colonization). However, sometimes, it can be the cause infections of the urinary tract, the bloodstream or of wounds.

Are certain people at risk of getting VRE?

The following persons are at an increased risk becoming infected with VRE:

  • People who have been previously treated with the antibiotic vancomycin or other antibiotics for long periods of time.
  • People who are hospitalized, particularly when they receive antibiotic treatment for long periods of time
  • People with weakened immune systems such as patients in Intensive Care Units, or in cancer or transplant wards
  • People who have undergone surgical procedures such as abdominal or chest surgery
  • People with medical devices that stay in for some time such as urinary catheters or central intravenous (IV) catheters.
  • People who are colonized with VRE

How common is VRE?

Information collected by the Centers for Disease Control and Prevention during 2006 and 2007 showed that enterococci caused about 1 of every 8 infections in hospitals and only about 30% of these are VRE. VRE can be more common in certain groups of people such as those with weakened immune systems.

What is the treatment for VRE?

People who are colonized (bacteria are present, but have no symptoms of an infection) with VRE do not usually need treatment. Most VRE infections can be treated with antibiotics other than vancomycin. Laboratory testing of the VRE can determine which antibiotics will work. For people who get VRE infections in their bladder and have urinary catheters, removal of the catheter when it is no longer needed can also help get rid of the infection.

How is VRE spread?

VRE is often passed from person to person by the hands of caregivers. VRE can get onto a caregiver's hands after they have contact with other people with VRE or after contact with contaminated surfaces. VRE can also be spread directly to people after they touch surfaces that are contaminated with VRE. VRE is not usually spread through the air by coughing or sneezing.

How can I prevent the spread of VRE?

If you or someone in your household has VRE, the following are some things you can do to prevent the spread of VRE:


  • Keep your hands clean. Always wash your hands thoroughly after using the bathroom and before preparing food. Clean your hands after contact with persons who have VRE. Wash with soap and water (particularly when visibly soiled) or use alcohol-based hand rubs.

  • Frequently clean areas of your home such as your bathroom that may become contaminated with VRE.

  • Wear gloves if you may come in contact with body fluids that may contain VRE, such as stool or bandages from infected wounds. Always wash your hands after removing gloves.

  • If you have VRE, be sure to tell healthcare providers caring for you that you have VRE so that they are aware of your infection. Healthcare facilities use special precautions to help prevent the spread of VRE to others.


What should I do if I think I have VRE?

Talk with your healthcare provider if you think you have VRE.

Pushing to go home


So, this weekend Lennon wasn't feeling well. He appeared to have a lil stomach bug maybe, ran a fever and had some major diarreah. This morning they told me he is still postive for VRE, which has me a little frustrated and so I am making the push to go home. Other than the therapies in the morning, they aren't doing anything I wouldn't do or couldn't do at home. I do know that living in isolation/contact precaution can't be helping the situation. So his case manager is going to order the feeding pump. I know that most of this has to be about Lennon, but I just don't know how much more I can handle at this point. I do belief that ones he comes home, and is in a non-sick environment he will do better. Who wouldn't?

I just don't know how much more I can handle...being away from home...being away from my other kids...being away from my normal life..I know this probably sounds incredibly self-fish since Lennon is the one that needs the care, but again they are not doing anymore than I couldn't do at home.. I am trained through the state as a medication aide, I know how to take vitals and I know how to get him to the docs to draw labs and go to therapy.

I am frustrated over the VRE situations...and battle in my head with the CDC because now he "cant" be tested again until I think 2 months from 2-25 which to me appears almost rediculous. Since he appears to be still a contact issue, I feel he would fare better at home. There we won't have to wear gown and gloves but utelize universal standard precautions..come to think of it..my kids will really learn what it means to wash their hands! He will be able to go outside, play in his room, hang out in the living room, in other words he will have free reign. Then again, I am probably the one with the problem because all I have to do is gown up and we can go whereever we want.

I have been upset this past week, and today everyone seems to be overly concerned. I mean c'mon what do they expect, he was admitted on Nov. 18th...and this is March 2nd. Lennon's care will not falter simply because we would be at home. We may qualify for a medicaid waiver in which we can have a skilled nurse come to the house. Our working hours allow us to be with Lennon around the clock just about. The feedings and the feeding schedules can be adjusted at home, via telephone, via e-mail and via doctor visit. Of course this means we may be on the road a lot for therapies and doctor visits, but then again maybe we can do it twice a week to line up with his lab days.

Lennon is still far away from going back to school, but he will have school at home. I just think he would be so much happier and not feel like he's sick. He's been so chronically sick that he may have a hard time feeling well in the hospital. Kluge isn't like the actual hospital but it is the same/similar setting it can make it tough to feel normal and well.

So yes I am pushing to go home.