Chunky Monkey Please!!!

This is blog is a little off topic from our deal posts lately…it’s a little update on my little man.

He’s so far been infection free for at least 3 weeks! YAY! However, he’s still not gaining weight! As of today’s follow up appointment – he has yet to reach 11lbs! He’s 6 months and that’s way below the 3rd percentile! My husband was at the appointment today, so I’m not 100% what the other details are, but he told me our main focus now is plumping up our little man! We have 2 weeks or else we’ll need to tube feed him! That is my biggest fear! As for his liver size…it’s still large for him. It’s a little upsetting, because what mom doesn’t want their little boy to be 100% healthy.

Does anyone have any suggestions on how to plump up my little man? Please let me know! Thank you!

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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

Cholangitis…what??

Another term that was thrown at us! In the beginning of March, my baby boy caught a little cold that had us taking a trip to the Emergency Room for blood test, which came back normal and we were told that it was viral. His fever left, but then it returned 5 days later, which gave us another trip to the Emergency Room, only this time we were admitted. His white blood count was too high and with his condition, he had to be treated ASAP. We got admitted to a floor a night, so no doctors were around, but he got started on antibiotics. By the morning time his fever went down and never came back actually for the rest of the stay, however we had to stay. I’m a working mom and was unable to stay with him, I felt HORRIBLE!!! but I have an amazing friend that came and helped me out and my mother -in-law was there as well. I would work and then return and sleep at the hosptial, I literally did it for the duration of my son’s stay.

Every morning the surgeron would come and then fellows and then residents. The first 2 days, I never got a confirmation but  I got the words “it’s suggested that he has cholangitis” (which is an infection in his bile ducts). Because he was responding to the antibiotics, it was surely that, therefore the choice was for him to stay for 7-10 days or get a picc line and have him go home and get it done. We were scared but the picc line (which I learned later on it was a better option) and by the time an actual plan was thought out by the team, he was already mid way done with the antibiotics, so we choose to stay. He  had the same nurses, if not new ones who were just as great as the others and he constantly had company.

 I didn’t see my daughter, every morning I heard my little boy scream cause they had to draw blood from him, I slept at the hosptial and went to work. I got woken up for almost every 3 hours by the PCAs and nurses checking up on my son. By the last day that I expected us to leave I was so happy and relieved to be able to go home to see my daughter and bring my son back. The morning of, my husband came to be the one to get my little boy discharged while I went to work. However, things did not go as we planned. His first blood results were not great, so they have to redraw his blood…and the results still came back bad. I was so upset. I had thought everything was great, his #s were steady enough the last draw and even the doctors and nurses were prepared for us to go home. By 7pm – I was told that he had to stay and he would need a MRI the next day. So all my expectations went down the drain, and another night at the hosptial.

My baby was NOT allowed to eat after 7am the next morning. His MRI was not scheduled at all. So you can only imagine how frustrated it is for me as a parent and how hungry a 4 month little boy is. At 11am we were told he was going to in an hour, an hour pass and nothing…2 hours passed…3 hours passed…nothing. At this point, I’m frustrated. I asked for them to just forget it and make an appointment the next day. They couldnt! which got me annoyed.We waited and waited and finally by 6pm he was called downstairs.  The whole process took forever- he had to get sedated and then we had to go the PACU afterwards, where he FINALLY got to eat. WHAT A DAY THAT WAS! Results came back the next day – and it was good. nothing in his liver! YAy! we’re happy about that. His blood results were semi-normal. At least good enough to be told he was able to go home after he finishes up the antibiotics.

We’re home now and he’s doing great – eating as much as he did before he got that little cold, always smiling and still achieving milestones. We’re super more careful now – spraying down everything, no germs! washing our hands constantly.

~Mama Winnie

Adjusting…

 Just when we thought we had it down …we have to start all over.

It’s been 4 days since we brought our little superman back home from the hospital after his surgery and we’re still trying to adjust to it. It’s like bringing home a newborn all over again. Sometimes I forget that the nurses aren’t around and I have to do it all by myself.  Because I’m scared to hurt him where his incision is (the length of my hand above his belly button to his side), diaper changes is twice as long as before. Although the nurses and doctors tell us its ok, I’m scared that I will hurt him. I write down everything from the time he ate to the time he takes his vitamins and antibiotics, just in case I forget when I gave it to him last. His schedule is so unpredictable, he doesn’t eat as much as he used to. I guess it’s also because the formula doesn’t taste that great! Who would blame him, it smells like catfish. I feel guilty that I did not pump and store as much breast milk as I should of since he can have that as well. Sigh!

No matter how hard it is or what we have to do to adjust to his schedule, no matter how tiring it is – as long as our little boy is healthy at the end of this journey and a happy baby – it’s all worth it.

Get Well SoonThank you to my west coast team for the flowers and balloon for my little man!

~Mama Winnie

Biliary Atresia…Kasai…What?

Words that were thrown out on us that turned our world upside down. What should have been a regular monthly check up for my 8-week-old boy turned into an 8.5 hour surgery…

When his pediatrician told us that we needed to get blood work for him because he was a little more yellow in color and his liver was slightly enlarged, and the fastest way was to an ER, I didn’t think that visit would turn into 2 different hospital stays and a major surgery.

The ER pediatrician attempted so many times to draw blood from him; it was heartbreaking to see him getting poked left and right. Results came back within an hour, and it was not good, per the ER resident. The bilirubin count was too high, and not just the bilirubin counts where they can stick him under the UV light, it was the bad one, the one that affects his liver. The doctor told us he’s going to need to be admitted for further tests. We waited for a day for the GI specialist to let us know what is wrong with our lil trooper. She told us, it might be Biliary Atresia. (a blockage in the liver duct that produces the bile – http://www.baaware.org/) and that we should transfer to another hospital. Thru out this whole time, his pediatrician has been touching base with us and felt that what my son has needs to be expedite and taken care of ASAP, so they did their magic and we ended up transferring to Mount Sinai. I’m calm and just want everything anyone can do to make him feel better.

When we arrived here at late Thursday, they wanted an IV in him. Most tiny babies have hard veins to find, they did not imagine that my lil man would be as well. That night, it took 2 specialized nurses that put IV on newborns, 1 resident and 1 nurse, to try to find his veins. I was in tears with him. I wanted them to stick me. After an hour and half (but felt like forever to me), they said “sorry, we tried, he’s a hard stick.” Another term I’ve come accustom too thru out this whole week. On Friday morning, they tried again…even the IV nurse could not do it. So when it was time for his liver biopsy, they had to do it there. I was waiting in the waiting room, what would be a 10 minute procedure turned into a 30 minute one cause they were having issues to put him an IV in him. It was there that I broke down, not only from after hearing about this condition more from the doctor but also hearing him cry in the other room and I cant hold him. I asked myself “why my little boy. How come he had to be 1 out of the 15,000 that can be diagnosed with this rare disease? How did it come about? Would he not need to go thru this had we found out earlier?”

Later on that day, the results came and it was suggested he has biliary atresia. More medical terms were thrown at us, but this whole time I’m scared for him. They have to open my tiny little boy up and do some reconstructing to his organs and but first it needs to be explored to see if it’s even biliary atresia. Lucky for us, the amazing team of liver doctors and surgeons explained everything, step by step, the outcomes, the risk, everything we wanted to know and needed to know were answered.

With his procedure scheduled for the following Tuesday, I had the weekend to spend quality time with him. I’ve been sleeping in the hospital since he’s been admitted. That weekend whenever he was up, I held him. When he wanted to be rocked the sleep, I cared less about the spoiling rule. I did everything I was told not to do that spoils him. My precious little boy knew nothing that would happen to him, he was happy! He laughed, smiled, eat, pooped, and peed like a normal baby would do.

The day he had his surgery, it was the longest ever. I waited forever. I was scared, nervous and overwhelmed. I was hoping that surgery wasn’t too long, but it lasted longer then they expect. When 11:00pm came around and we were the only patient’s family in the waiting room, I was worried and a wreck, I just wanted to see my lil boy. Finally at 11:30pm, the surgeon comes out, I jumped up and when I looked closer, he had a smile on his face (that made me relax a little). He sat down, and explained to us everything. How his duct never formed properly and he did have to perform the procedure Kasai on him. He said everything went well and no complications during the surgery and that we shall see how successful this is. (It’ll take at least 4 months to see results). Seeing my little man puffy from all the liquids and not being able to hold him, killed me, but I was glad the worse part is over.

It’s been 3 days, and my brave little man has been in ICQ and stats are good. His nurses love him! He’s doing everything he should be doing to his road of recovery.

Words can not express how thankful I am of a great team here at Mount Sinai taking care of my son. We’re praying that the Kasai will be a success and but I already know he’s a fighter and it will be.

Thank you everyone for your support, prayers and well wishes! It means the world to us.

~ Mama Winnie