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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...

Sit down with the doc

So I just finished with a sit-down..the docs are worried about the 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...

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...

Recent Developments

So, Lennon is doing better but still has a bit of 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 tunneled into his vein or...

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,...

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 heart rate is 190 and so we are...

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 a while and that should remove some of the problems. Since the liver is working, transplant thought it is better for GI to get involved. He is not able to...

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...

When my third son was born we lived in bliss that was short-lived. For years, because mother’s intuition doens’t lie, we were on the journey of tyring to figure out what was wrong. Just shy of  of being 4, we learned that he in fact had a rare genetic disorder.

Life as we had dreamed about was over but what came out of it was something more!

More challenging, more heart-wrenching and yet more beautiful. A life without excuses and lots and lots of coffee. 

Hoping for Answers

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...

Sit down with the doc

Sit down with the doc

So I just finished with a sit-down..the docs are worried about the 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...

Unreal

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...

Recent Developments

Recent Developments

So, Lennon is doing better but still has a bit of 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 tunneled into his vein or...

A title eludes me today

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,...

Hi, I’m Petra!

Mom of 3 boys – the youngest who is special needs. I blog about our medical journey, the challenges we are facing and other odds and ends.

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