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

Hate waiting for results


On Friday, I received a phone call telling me Lennon's EBV levels are through the roof and the Dr. want a CT Scan to check for lymph-nodes. Lennon did great during the process and even with the fact that the contrast dye infiltrated through the vein in which his IV was in. We had to check for circulation and make sure that blood flow was present as his arm was rather swollen from the dye. I am happy to say that his arm today is back to normal.

However, I can't help but wonder what the CT scan showed and if we have to worry about a Lymphoproliferative Disorder . I can only hope and pray this isn't the case because according to this article: Lymphoproliferative disorders are among the most serious and potentially fatal complications of chronic immunosuppression in organ transplant recipients. Another article here discusses the PTLD more in depth. Seriously? 


What has been done so far is that we reduced his immune suppressant medication. The next step is to go back to the Pic Line or other permanent type of access to give him his gancyclovir through the IV as opposed to oral/g-tube. This is in the talks with the docs right now and I won't know about this until I suppose next week. 


Again we find ourselves in limbo about diagnosis and prognosis. I am trying to maintain calm, collected and 'just wait for the results' and hope for the best. I suppose I can't really elaborate on much more until I know 'something'. 



Painful reminders of not being super-mom


Tonight I was painfully reminded that I am human (who would have thought it?) and that at times I don't have it all together. A small mistake made Lennon cry out, his belly hurt and vomit. Normally I would panic but one look at the feeding pump and I saw the problem... I forgot to change his rate from the day feeds to his night feeds. Lennon the trooper...went to the bathroom...got undressed...got cleaned up and is back in bed, while I'm sitting here thinking how did I miss this and why didn't I pay attention to it? So yes I recognize I am human, but I'm still going to beat myself up over it because it didn't have to happen.

The other day I got into it with one of my other kids because I was told I need to do a better job watching him, so that Lennon doesn't go into his room. Say what? Are you serious? It's not like this is a big house, and oh yea I do watch him (and Lennon was in his room at last check). I am still baffled by this a bit...though I recognize its part of the teen turning adult...but yet again I am baffled..has he not been here?

Perhaps it is because the schools are giving me grief of allowing his private duty nurse to be with him. We were told in the meeting that if he has a private duty nurse that they couldn't do anything for him and that the nurse has to handle everything. So if Lennon cuts himself...the nurse is in charge...no one will step forward to help other than calling 911. If Lennon has a dirty diaper, they can't change him but have to wait until the nurse gets there. I keep thinking I'm making this up, but I wasn't by myself in the meeting and I know I wasn't dreaming it or imaging it. It's like what the hell. I talked to the nursing care provider and even they are like this is incredible and ultimately the bottom line is...its about money. Why is it about money? Because if nursing care is provided by a private provider, than the school isn't getting paid for it by doing the same things. It's a circle and we all are shaking our heads. This morning we went into school, to make sure that staff who will be handling the feeds knew what to do and discuss what to look for in case his ammonia is up. I want to be vigilant about his care, but I don't want to be over-paranoid and I don't want the school to be overly paranoid either...just do what a school is supposed to do...teach my child!

Due to this no-nurse in school dilemma, I will be left without a nurse on Friday. Lennon is returning to school Thursday (yay) and so care will not be needed until he returns from school (12 p.m.). I have nothing against the nurse, and I understand that she lives about an hour away. At the same time I will need to shift/change my own schedule...did I mention I am in my internship? I spend an hour talking to the guy who manages the nursing care, laying it out and clearly Lennon qualifies for nursing care not because of my schedule but because of his needs...because of his state of health...because of his medical challenges... though it certainly adds to that I am able to do the things I need to do.

I try to keep things together...I try to make sure that all kids have attention...I try to make sure my relationship has attention...I try to keep my business going.. I try to manage/incorporate my internship..I try to stay on top of my school work...and tonight I just don't have it together!

Thanks for listening!

Some fun and some challenges


On Saturday we took the whole family to the Monster Truck show and let me tell you that Lennon was elated and excited. He could not wait to get there (he was talking about it all day). He really liked the light show (the trucks were making their entrance and being introduced) and the fact that one of them fell over doing a trick. he loved the cotton candy and he loved the popcorn. I remember sitting and reflecting that a few years ago this would have been impossible to do because it was challenging to take him to places without 'crashing' into a high ammonia level or simply because he couldn't sit still for so long. He stayed in his seat just about the entire time and smiled from ear to ear. Once again I caught myself in awe of him, his will to live and what appears to be a carefree attitude.

Today is going to be an interesting day. Lennon already was at UVA getting his labs drawn for a weekly check on his levels and here shortly I will be heading to a meeting with the school to get him re-enrolled. Though I am baffled of why this meeting. I told him he was ready for school (again), I told them he will have nurses with him (shoot he's been approved for nursing care since he medically qualifies no matter where he is) and I told them that he needs feeds at 10 a.m. (even if they are only for 30 minutes). It's what I want, what Lennon needs anything else they need to take on with the nursing care provider and the doctors. The docs and nurses at UVA are awesome and baffled by all this 'drama'. Though part of me certainly understands the legalities of it all, but how much more sure do we need to be? Do they care about Lennon, yes of course. I just never understand why these things are so difficult. So I have no idea why we are having a meeting, but we will have this meeting.

There are some days I wish I had the finances and the patience to home-school but unfortunately I'm just not a person that could do that. It encompasses much energy that I am not sure I have or I can give. Working (my business), going to school from home and raising 4 kids often takes out much of my energy. I often feel I am not doing enough, but then there is the question how much more can I do?


I was happy to get the whole family out on a night together because this don't happen very often.

Angels Who Care For Us


 Angels Who Care For Us

Caregivers are Angels with Halo's inside,
they give us Help and Hope and in God they abide.

Caregivers are Angels because of their Love,
They always Encourage and look for Guidance from above.

Caregivers are Angels with a Gentle Touch,
they Ease our pain and Understand so much.

Caregivers are Angels through Faith they inspire,
they always Believe in Miracles and seemingly never tire.

Caregivers are Angels who always Endure,
they Understand every need and administer God's cure.

Caregivers are Angels throughout the night and days,
they have great Courage, but never sing their own praise.

Caregivers are Angels who are great Friends,
their Hearts are steadfast, because their love never ends.

Caregivers are Angels because of their Spirit,
they posses the gift of Healing, they can not deny it.

Yes, Caregivers are Angels with Halo's inside,
dividing darkness from the Light that they can never hide.

Thank God for Angels Who Care for Us.

(Author Unknown)

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We are trying to get Lennon squared away for school but the school has to make sure that everything is set for liability and legal reasons...blah blah blah ..so it will be another week or so before he can go back. This process is entirely too frustrating for me at tiems.

Lennon is a little emotional and tired today but overall seems to be fine. He's been enjoying his video game time and time outside on the trampoline. It's beautiful to watch him play with his imagination which is "a new" thing. For some children it comes naturally at a certain age like 3 or 4 ...Lennon is 6 3/4 (almost 7 in a few months). He seems to be happy for the most part and content, still wanting everyone's attention, well primarily his brothers.

I'm happy to see him to do so well, but I can't shake the constant worry about his health. I try not to dwell on it, I try to take each minute for what it is and love that he's funny, happy, playing. I hope for a miracle to make the clots and collapsed veins to heal themselves so that he will not face any more complications. Given his long history I feel that I can't relax and settle in because in an instant the craziness can come back and it seems I'm merely waiting for it to happen, while life goes on.

Check up Appointment


Today we had another appointment this time with transplant and gastro. So it seems that no sooner we stopped the IV medication and switched to oral medication his EBV level (Eppstein Barr Virus) went way high again. This means that we had to reduce his immune suppressant medication in hopes that his own immune system is strong enough to fight this EBV. Lennon will require weekly blood tests to check his level and see how they are fairing out. If they do not go down and/or he becomes more sick they will do a scan checking for lymphnodes. This also may mean that he's going to get another 'permanent iv line' and go back on IV medication, but everyone agrees that this is not what we want due to the high infection rate he has with these things.

On the positive note, Lennon has been cleared to go back to school and I hope to get him back beginning on Tuesday. Will have to make some mad phone calls on Monday i.e. school, nursing care provider etc. Overall the docs were happy with the way he looked i.e. active, no jaundice etc.

It's interesting because Lennon is still quite moody and concerns came up that his ammonia could potentially be elevated but no other signs are present for this. My ultimate thinking on this is that we have had a new nurse for two weeks now, and he is STILL testing, manipulating and seeing just how far he can go and push her. It will be interesting going back to school as we are going to see if the nurse is or will go with him, how it will be handled by the school, insurance etc. though the thinking is that if he's approved for x amount of hours it shouldn't matter...but I don't (at this time) have a clue about this and will be interesting to find out.

This is all I have for now/today. I've been super busy with my business and start new classes on Monday.

I said I would tell ya the good stuff


Lennon's pic line came out today and man he's such a champ. He's doing so good its difficult to fathom he could turn ill again and so I try not to focus on this so much. He now has a new (additional) nurse who he's given hell to..well lets just say he's making her work and testing how far she will let him go...in other words...some training still required in being assertive and not letting him run the house or my weekends are going to be insane..

I am hoping that he will return to school soon and should hear about this tomorrow (crossing fingers and toes).