Kyle’s update…

Today is the first day off his antibiotics – hopefully no more bacteria. It was also his followup at Mt. Sinai and his over due well visit.  His current weight at both doctors is 10lbs 12ozs – extremely underweight – but my little superhero has been thru a lot. He is however growing in length- 25 inches… That’s an inch more a week ago.
We are waiting for his blood results to come back and if the numbers are good they’ll take the Picc line out. Hopefully sooner than later since it can be a resource for bacteria.

His liver ped even said if his numbers are approving at his next follow up and weight goes up- he may be able to go back on his regular formula! Yay!!! Crossing fingers that it will happen as the current formula is expensive! They encouraged baby food as well- however his ped said not yet since he wouldn’t get as much calories from it. She told us to do all types of grain first. So onto oatmeal next week!!!

My superhero is such a happy baby! He didn’t cry when he got 3 tubes of blood drawn but he screamed like crazy when he received his shots! Haha! Go figure that one out! Hopefully  he’s on the road to recovery! No more fevers! No more infections!!!! That’s all I’m asking for!

**update on his blood results – NP said doctor LOVES his results! his bilirubin direct is 1.7! wohoo! and i believe total is 2.7

Never a break…

Kyle is back at Mt Sinai battling another case of infection. Luckily for us this time around it did not seem to have effected his liver based on his blood results. In fact, his bili came down, which we are very happy about, but of course not happy he’s here. He has another case of E. Coli! why is it constantly happening? Why cant we just get a break? He needs to grow…have a life!!! I need to put him in a bubble – but even the doctors say it will not stop it. The bacteria is in his body, and with his condition – it’s likely to happen. I really hope it’s not a consistent thing, because even if he does need a liver transplant, it’ll happen anyway because of the fact he was open up before.

Is there an end to this…a break? I feel like I’ve been here more than being home!

~Mama Winnie

Infection Again…

3 days after my little boy comes home from the hospital from his 10 day of antibiotics treatment – he spiked up a fever again and had hives all over his body. Since he just got discharged, the doctors kept telling us it was viral. For a whole week, everytime we called they kept saying if the fever does not spike to high (pass 101) it’s viral and let it run it courses. We even went to his pediatrican – who said he had hives where his liver team doctors called it roseola. Kyle had fevers come and go thru the week but nothing above 101 – finally that Sunday morning it spiked to 102. So off to the ER again. (3rd time in the month of March)…

We got to the ER after our daughter was picked up by my parents – again it took forever for them to draw blood for him. and again it was so heartbreaking. This time we were put in a double room – at least 2 patients were there before we were told our results. He’s blood culture came back “negative” – uh oh! that’s bad! Which meant being admitted again (twice in a month). We get admitted to his usual floor, same nurses, same PCA – so that was good, obviously not the condition I would want to see them though. Because he had a fever, we were put in a single room. That night and the following morning alot was the worst ever. My baby boy was not his usual self. His usual doctors were like he’s not smiling, he usually smiles…he isn’t moving. And he also was retaining water, so he was very very bloated. The team was so worried that within an hour a PICU resident had to come observe him, thank goodness they rejected him off that floor. However, he was put near the nurses station and was put on being monitored every 2 hours. So you can only imagine my sleeping schedule was very screwed up. When the doctors did the rounds, the first thing they said was “Mommy, this is real! this is real!” My heart was racing – questions started coming out – will he be ok? does he need a transplant? why? how?  – it was heart breaking to see him like that, that somehow i just blurted out to the doc “wouldnt it just be easy for him to just get the transplant” – the doctor told me “it’s still early. this can be a hiccup”. The whole night watching my son just be so fussy, i just didnt know what to think anymore. I just know I wanted him to be my healthy happy little boy!!!

By the next day, his blood culture was determined what it was…it was E.COLI(it takes 48 hours for them to determine what it is)! can you believe that? my 4.5 months old baby boy had E.COLI!! How did he get it? Why? I learn something new everything, apparently it’s a “bad” bacteria that sits in your small intestine and everyone has it. With Kyle’s condition it’s more vulnerable to be “activated”. Isn’t that insane? by that day, his blood cultures were negative – which meant E.coli was gone anyway! He started smiling for me and laughing…I had hope! I knew he was coming around.

That same night, my mother in law had the pastor and his wife come say a pray. I’m not religious, but she is and my husband and I were married by the pastor. We said a pray for Kyle. The next day, Kyle was improving. His doctors were happy with his results. I knew then, the pray helped and he is being watched over. They decided he can get a PICC line, so we can go home to finish off his antibiotics then to do it at the hospital for 14 days.

After a week, we’re home administering his antibiotics via IV. I hope it’s the last time ever again at hospital for him. (little man’s time for IV must cut this short….)

~Mama Winnie