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

He's off the breathing tube


Lennon was taking off the breathing tube at 2:30 p.m. this afternoon. He still requires oxygen assistance, periodic suction of fluids and coughing. He currently is resting with the help of some sedation. He looks comfortable :o) Prior to sedation, he was fighting and attempting cry and yell ..like the Lennon we love and know! He is in a waiting period to see how he's doing, hopefully he will continue to do well and then the oxygen can be eliminated as well, as he then will completely breathe on his own.

What is happening these days?


Not much I must say. Lennon continues to be on the breathing tube. He, after coming of the antibiotics, had developed a fever again, and his belly began to swell. The c.diff had waxed and waned. These days, his vent settings are lower, his belly size remains stable, his feeds have started again. However, when Lennon is on his right side (the problem lung) Lennon's heart rate and blood pressure will indicate that he is not happy in his state of sedation. They TPA'd the chest tube, and he put out almost a liter and afterward required a blood transfusion. They are now using TPA every twelve hours to bust up any clogs/clods in the chest tube so that he can continue to get rid of the fluid.

His vent settings are being lowered so that he can come of the breathing tube. If everyone is happy with the settings, doctors, respiratory therapist and mostly Lennon, then they will take him of the breathing tube. This could happen by Friday, provided all goes well, or it could be at the beginning of the week. Keeping in mind that Lennon, in his history has not made use of the "right settings the health professionals seem fit to use". Lennon does what Lennon wants, when Lennon wants it.

This is all I have for now.

We call them Lennon steps ...


... and not baby steps.

I haven't posted in awhile because there really hadn't been any changes that were worth talking about. Today we have progress!

Lennon looks skinny (again) as most of the fluid has gone. He appears to be more awake as they have changed some of his sedation medications and starting on some withdrawal medications ~ beat it before it starts kind of thing. His belly was at 65.5 cm yesterday, but this morning is back to 68 cm, which is where it was three days ago. One reason for this is that he has not gone to the bathroom for some time and might need some milk of magnesia or something to help him out. He has been receiving continues feeds and up until last night did ok urinating and having stools. He did run a slight fever that went away on its own and that could also be a withdrawal symptom. his white blood cell count looks good this morning indicating there is no infection, but as a precaution they did send some cultures out last night.

I have been trying to stay busy as this waiting patiently can be quite nerve wrecking. I have hopes that Hippie's Creations can take off a little bit better as I now offer soap and candles (though pics of the candles have not made it up to the website). I also keep busy with class work and going to work. I am able to spend every other night at home with my other kids, and that has taken off some of the waiting game issues. When I decided I was going to expand on my business, part of me thought I was nuts...what more do I want to take on? However, I have learned from the first 3.5 months in the hospital that keeping busy can help you keep sane to some extent. While every part of me wants to sit with Lennon every second of the day, for my own well being and keeping strong for Lennon that is unreasonable. It is the reality of that "Life goes on". The world doesn't stop when one is sick and one does the things that need to be done. I had post-poned discussing this aspect but realize again that this is soo much part of taking care of Lennon and us coping with his illnesses, being there for him, while we continue to go on with the rest of normal life activities.

It is very difficult to be at home, (yes he is still alive and progressing to get better) and not see him getting into things, playing outside. Yesterday was quite a nice day and Lennon is the kind of kind that goes outside rain or shine. I thought about how much he means to us, me, his brothers, to everyone. How energetic he is, how busy he can keep us, how funny he is. His disorder and his disabilities have not impacted his spirit. He keeps fighting, from somewhere with in that I admire...

People, who are complete strangers to me (us) in the physical sense, have supported has and continue to do so.. it reminds me again the impact he has on so many lives.

Lennon is very much loved!

Earth day and post 100


This is my 100st post about Lennon and his health. Things are unchanged for the most part, except he doesn't have an infection - is what they are saying now. His sedation is troublesome as his blood pressure wants to bottom out and his heartrate wants to do similar stuff.

Yesterday his X-ray looked worse and this morning it looks better. Reason: They placed a port in so that he can get TPA a clod-buster etc, well instead of cleaning his chest tube for flow, it didn't do anything at all, except give Lennon more fluid in areas he didn't need it. So process repeart except chest tube this time, and voila we have output and a better looking x-ray.

We don't know how long he will be on the ventilator because the fluid is still there, the belly is still big but still no real answers as to why. Did this develop because of the stent replacement? Good guess. Or the yeast infection? Again, good guess in my view.

There really isn't much else to say right now, except we sit with Lennon, watchi his monitor, missing him and hoping that we get to interact with him.

What's new?


Nothing really. Lennon had a bronchial procedure, in which they flushed saline into his lungs and sucked it back out. They are culturing this fluid to see if anything will grow, but nothing as of yet.
Later that day, he had a procedure to clear out some fluid so that his right lung could hopefull expaned, ended up with a double chest tune. He continues to ooze blood and receives plasma (ffp) and regular blood to help him, thus he is still dealing with some coagulation (sp) issues. The hope is that the clearing of the fluid will help him get off the ventilator. But I think the verdict is still out on that.

Lennon is still critical and still deals with some major fluid in his body and abdomen. A lot of this is going take time and sometimes that is the hardest part in itself. And of course they still suspect an infection somewhere that is hiding, but haven't been able to pin-point the exact issue of what is going on. There are many things that are running through my mind. Was it the stent from the procedure? Is it the c.diff that doesn't want to go away? Is it the bile duct leak? Is it the liver - though the biopsy came back ok? Are his lungs or rather the right lung his problem for the issues? Is it the yeast infection, and the fact hat it was attached to his port? There are so many questions to where there seem to be no answer to. That's tough.

Small Progress


With added medication such as lasix, they have been able to get Lennon to get rid of it and they have been able to lower the vent setting some. Small progress is good and the docs seem hopeful while still very much concerned.

An ultrasound showed that Lennon has several pockets of fluid that the chest tube can't rid of on its own, and so they will go in tomorrow to remove and drain as many bubbles as they can. They will also do a bronchial procedure to get a specimen of Lennon's lungs to see what it is, alas does he have a yeast infection in the lungs?! Further, they will talk to infectious disease to see what can be done about antibiotic, are there too many, not enough etc. He is still positive for the C.Diff and they are going to treat it through the NG once again.

Everyone's positive thoughts, energy and prayers are appreciated.

Some minutes are easier than others. I still try to keep busy as to not get overwhelmed and too concerned, but sometimes a song, a word, a commercial will bring to reality how sick my little boy really is, and how much I miss him. I have been able to spend a little more time with my other kids, but often that means not being with Lennon but having to have faith in the care that he receives. Trust is always an issue when it comes to your kids and someone else is taking care of them. You become very aware of the nurses and doctors and either learn to trust them or you don't and then you make decisions from there.

Unchanged


Things are unchanged. He is comfortable and heavily sedated. He is a little puff-ball and they are going to help him loose the fluids. The cultures still have not grown anything to indicate what kind of infection might be going on. Talking with one of the docs today, it could be this yeast infection that caused all the trouble. Lennon does have some minimal (or huge - its in the eye of the beholder) they are not sure where it is and where it is coming from. He is very very sick. This is what we know.

Knowing that he has pulled through in the past it is difficult thinking about the alternatives. But they are real, it can go either way. I have a lot of anxiety that leaves me with chest pain, which lets me know I need to take care of myself. The support once again is overwhelming.

We realize that docs can only do so much and that the rest is up to Lennon and whatever powers there may be. It is difficult to fathom that after the long fight Lennon has endured and fought that it could just stop. I belief in his spirit and will to live but still realizing that his body may have different actions.

We fear the unknown! How true those words are today and every day in which we don't know what will happen next. Realizing that while the doctors of the PICU do everything within their power, it could not be enough. Again I pulled by the thoughts that he is a miracle and an inspiration with the will to live.

We are asking for...


...prayers, positive energy and thoughts ...

At this time Lennon is on the breathing tube being supported comfortably with sedation and medications to fight "whatever" infection has consumed him. The biopsy indicated no rejection and appears to be functioning. However since he is getting TPN and some of his medications are processed by the liver, it can make it work harder. He has colonitis and inflammed bowls and an infection they don't know what it is. The docs are worried but have not given up hope ..and these are their words. While they are waiting on culture results and other lab results it is unclear the infection that has taken over. Things are done to increase his white blood cell count but there is a fine line due to the immune suppression he requires.

This is very difficult time for us as we are not sure which way it will go. We want to hang on to the positive thoughts and the faith that has brought Lennon through so many times before. Lennon is critically ill and only time can tell if he is going to pull through this one. I hope, I pray, I cry, and I worry...

What is going on?


The CT Scan showed that his colon..ok his whole bowl system is inflamed...the source...c.diff more than likely. This could force/develop more fluid in areas where there don't need to be fluid. He is currently on 4 antibiotics, most everything is via IV so he doesn't have to take anything through the NG tube and his belly can rest. They are checking the kidney function and the pancreas functions as well.
The results from the biopsy are not in as of yet...so probably tomorrow. Oh he also has nodules (sp?) on his lungs that could be either lymphnodes or from the yeast infection where little yeast balls have attached themselves.
So he has several things going on, some are more clear than others now comes the time for the docs to figure out which ailment they will treat first and will it simultaneously (sp) take care of the rest. For now he is on the breathing tube. They attempted to take him off, but he is too sick right now and this is probably how they keep him comfortable.
It's been a long day of crying and emotions, praying and hoping. And though I have faith in the docs and faith in Lennon it doesn't make things any easier eery time he goes through them.

Hoping for Answers


So yesterday Lennon received another chest tube because he has fluid everywhere (again). Today they did a biopsy - though they are not suspecting a rejection issue - they are hoping/thinking that they can find some answers to Lennon's situation. They also did a CT Scan as an ultrasound (again) would have not been beneficial and the scan may (or may not) give them some answers. For the Scan and the biopsy Lennon was put back on the breathing tube - and we were told they wouldn't take it until tomorrow. Do they not remembe the last time, or the time before that? It worries me beyond belief. It worries me that they are worried and they don't know or understand of what is going on. So here is to hoping for answers...

...part of me is scared to know what is going on, but of me feels like where we were several years ago when we didn't have a diagnosis...it brings back certain memories I do not wish to think about. It makes me angry to think that he has to go through so much just to be alive. Oh the things we take for granted. I realized that I in some instances am numb. Four months ago a chest tube was a big (I mean BIG) deal for me, yesterday was like ..oh ok.. moving on now. But I lost it later on that day. Crying is a healing emotion, anger is a motivational emotion (from a wise woman). I went home and made soap before going back to the hospital because for just one minute I needed to focus on something else. For one minute I didn't want to think about all the possibilities. For one minute I didn't want to think at all, let alone feel any emotions. I have said it before and will say it again, I don't ache for myself but I certainly hurt for him. I miss Lennon, I miss him a lot and the transplant has changed him. But I feel his pain, I can see it in his face, the uncomfortness of whatever it is that is going on. Even when the ammonia spiked - I never has seen this in him. There are all these emotions - sometimes easy to understand and sometimes complicated to explain. He is however my inspiration to keep going...

The nurses often tell me how much that little boy loves me.. he says my name in his sleep..he says my name when his mental state is altered (when high with ammonia in system or due to medications). He says my name to let me know he really needs me - to hold him - to stroke his head - to tell him I love him. He says my name to make sure I didn't leave him - that I am forever present to help him have his needs met - whatever they may be.
Of course this too leaves me in agony - I have other children while older and perhaps less needy - still need me. Often feeling that I am abandoning them as my time is spend at the hospital or work, rarely at home. I often feel that I need to find that pot'o'gold that allows me to divide my time between them all (i.e. not work). But it isn't an option. My kids understand this - my kids are great. They keep the house running - do their homework - feed the animals and don't set the house on fire or anything else. They are mini-adults. They too are my strength and inspiration. They often do not get talked about - but they too have some much insight and so much to share - and so much understanding beyond their years.

This post has gone on longer than I intended but that happens. All I can say right now is that I am overwhelmed with mounds of emotions that I haven't quite figured out how or where to place. I feel more drained this days than I have in a while, so I will end this with saying good night and thanks for all your prayers and thoughts as Lennon continues his battle of recovery.

Sit down with the doc


So I just finished with a sit down..the docs are worried aboutthe fluid collection that is going on in Lennon's system. The liver is functioning okay but not too optimum,but they aren't sure how much of his problems are related to the liver function. They are keeping him in ICU because they are worried about the fact that he is brewing some other kind of infection as his x-rays where whited out today more than yesterday or the day before. He will be receiving another chest tube to help drain the fluid.

His brething is labored but his oxygen requirement has not changed. If the docs tell you they are worried, well that just adds to the worries I already have. I hope that too this will pass and we can head towards recovery, because the alternative is not acceptable, right? They are holding off on adding more antibiotics for a few days and see what the ultrasound indicates. Of course with the bile duct problems he's had and has perhaps that is the evil of his problems. Further, another transplant is at this point not an option or considered, but then it doesn't mean that it wouldn't be in the future. It was mentioned to me, so I figure I will mention it here.

I think that the liver contributes to all his problems, and while he is not "obviously" rejecting it, it is functioning but I think it is functioning at the bare minimum so to speak. I am not sure where my mind is at the moment, I think overwhelmed is an understatement. Oh yea and tired.

So the reason for his bleeds are varices along the esaphagous varices ...more information here: http://en.wikipedia.org/wiki/Esophageal_varices or here http://www.webmd.com/digestive-disorders/bleeding-varices. His are due to vomiting and irritation along the esaphagous and stomach.

Today he's better. He is sleeping for the minute but even in his sleep he will call or me. Last night it went something like this: mommy mommy ooh ooh hehehe mommy mommy ooh ooh ..I am not quite sure what this is about, and I do hope this will pass. This morning they are ordering an ultrasound because his belly is big again, if no information comes forward from that, then he might get a CAT Scan to help figure out what is causing his belly to be so big.

So this is all I have for today.

Bleeding stopped


The bleeding appears to have stopped. So the medication is working. He will be on this med for one more day and a half. Until then no food or drink except for his medications. The fear is that the clod that has developed over the bleed may start up again. Of course we will always have to watch for that now.

Lennon is grumpy as to be expected, he's thirsty, hungry and tired. I'm breathing a lil easier this morning. Yesterday was bad, scary and a day I never want to experience again.

I dont have much else to say this morning. Except that he continues the fight, and he does not bow down.

Unreal


So Lennon came out of the PICU yesterday, but within hours he was vomiting. Later on that evening he was vomiting blood. The doc came by...given Lennon some FFP as his coagulation (sp) is low, and he is a risk for bleeding. All the docs are aware..several reasons for bleeding:

  • his coagulation is not what it should be
  • he is taking asprin
  • other/new infections no one is aware of

This morning there was blood in the diaper, and there is evidence of blood in his NG. We are heading back to the PICU, and hope to find where this bleeding is located. There is one medication they can give to stop the bleeding but will have to watch him closely, hence the PICU. The other thing they might do is sedate him, send a scope down his throat to locate the bleed. If all else fails, he may have to go into surgery and at this point in time that is the last thing he wants or needs due to the bleeding risk he is.

I am a little frustrated (little being an understatement). How much more does Lennon need to go through? Isn't this about enough? Everybody is wondering how I am holding up, and amazed by all the things I continue to maintain (work, school, home and Lennon). Well it isn't about me, I didn't sign a choice contract at his birth giving me the option. I don't remember asking for this, not once. Lennon is an amazing little guy and I wish that everyone could spend time with him to meet him. He can be funny, honory, silly and lovable. Lennon doesn't have many emotions but the few that he has, man they are HUGE.

Recent Developments


So, Lennon is doing better but still has a bit recovery to do. The removal of the old port went well and was very much necessary as the yeast literally stuck to all the parts of it. He now has a different type of port that is external and tunnled into his vein or where ever it went. The chest tube that went in, came out today :o) so that's a plus. They started feeds via NG tube yesterday and he has been tolerating this quite well. In addition, they added a new medication that is supposed to bind his stomach contents a bit and slow down the massive diarreah that Lennon suffered from.

Other developments are that the G-tube is becoming more likely. While hesitant and fighting it it is becoming a necessity. The NG tube could be more damaging to Lennon in his nose, throat and even the stomach and the G-tube is much safer in that regards. It doesn't make me worry less about his infection risk but we don't want to add injury when not necessary. Until his feeding issue is under control he will require additional assistance via feeds. It could very well be years before he recovers from the feeding dilemma. While he is a master at eating chips, he no longer is interested in french fries or anything else. In part I think because he is in the hospital because at home he was beginning to eat different foods, but still not enough to be considered nutritious for what he needs. The G tube surgery will not happen within the next week, but possibly within 2-4 weeks. This can be done as an outpatient thing, if he happens to go home before then :o)

In the process of it all, yeast infection and fluid collection, Lennon has developed airspace lung disease, and the best I can tell you is that it labors his breathing. It is not pneumonia but acts similar when it comes to the breathing aspect of things. The air space lung disease should get better/go away once the yeast is completely gone. He is requiring less oxygen 1 liter as opposed to 2 liters. He is still in ICU, and until the PICU docs feel he can go to the floor he remains here, unless space for the PICU becomes an issue.

In the mean time we are hanging in there, making the best of things. Going to work, going to school and ensuring our other kids are taken care of. It is not always an easy task to do but I suppose we are up for the challenge once again.