What we learned today

Lennon had his weekly appointment today and so the word is that Lennon has chronic liver disease caused by the lack of blood flow to the liver. This means that the clot in the portal vein, the collapse of the hepatic vein and the clot in one other vein do not allow enough blood flow to the liver. This means that we can only hope that these clots perhaps will eventually go away, that they will not get bigger or that more accumulate over time. In hopes that the liver can heal itself throughout time. This also means that he’s at risk for developing more clots, experiencing liver failure more and more with time and that there is that chance (a good chance) he will face another transplant at some point in his life if the clots do not go away on their own.

For now he is well. His protein is restricted and it will continue to be restricted until further notice (as long as those clots exist and liver failure is present). The IV meds should hopefully be converted to oral or g-tube as it is in his case and he could potentially be back in school within a few weeks. It will be discussed, evaluated and based on Lennon’s health. If he cannot handle it or if it isn’t safe for him, he will go back to being homebound for education. Quite clearly, the doctor does not want him on the monkey bars, but that is easier said than done with a child who LOVES to climb. So his medical is being managed and maintained. And we are ensuring that he has the best quality of life (at home, with or without school), but he will have it. The docs will continue to watch him closely, check for jaundice, rashes in the mouth or anywhere else and so forth.

And this is all I have right now, I think. Lennon is a little moody today, but we are allowed a day where we are not on our top game.

*** Adding on to this post***

So it came to my attention that I should perhaps let everyone know that Lennon is on a medication regimen that is a blood thinner (aspirin) and should in time remove the clots. However, Lennon has developed a coagulation problem in his blood which leaves him to be at risk for bleeds. Thus when he falls I have to check him to see how it is bruising. He also tends to get minimal (not gushing..just kind of there) nose bleeds and minimal bleeding from his mouth. For this reason Lennon takes vitamin K (something for thickening the blood and reduce bleeding risk). Management of the aspirin and the vitamin K are done closely watching his blood level and adjusting his medications as needed.

It is quite apparent that his road of medical turmoil is not over and that complications are anticipated at one time or another. The complications can be a variety of ones. There is not only the potential that if the liver continues to fail due to the lack of blood flow he is facing an additional liver transplant, but there is that risk of bleeding. There are many facets of Lennon’s care that cannot be predicted or speculated on.

Of course this doesn’t mean I don’t worry (quite the opposite) but I also don’t want to be in panic mode when I don’t need to be. The doctors are keeping a close eye on him, the nursing staff is taking care of him, and we at home watch him closely, paying attention to every mood swing, behavioral episode (for a lack of a better word) and the hyperactivity if it elevates.

I have never nor will I ever turn down any prayers, positive energy or anything else that is beneficial in our journey and foremost in Lennon’s journey. I will continue to write posts about the good days and the bad days. There will be days and weeks perhaps of silence, but know that in the day of silence it is then when we experience normalcy.

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6 thoughts on “What we learned today

  1. PetraWhat a little cutie!! Love the picture it's great to see his little face shining out at us and allowing us to view this amazing child.Your emotions must to so stretched. Each time I read I feel like I can't fathom the ups and downs and goods and bads and how they must be affecting the family. Living with the unknowns of what may happen and when is so challenging to ones body and mind, and even more so is having to evaluate every little thing that goes in and out of Lennon and on around him just drains a person. I continue to pray for strength for all of you.Hugs

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