Tyler also had this horrible breathing problem. I've never been so terrified for one of my babies. He would stop breathing for no apparent reason and turn blue/purple. I would never let anyone hold him until I explained how they could hold him and make sure they understood to watch for him carefully. I couldn't even hold him laying on my chest(my favorite thing in the world) because he would stop breathing every time. You couldn't hold him up to your shoulder(like you would for burping), you couldn't hold him in the football hold, in the crook of your arm, or in anyway that pressed on his chest. I had difficulty sleeping at night and kept him with me almost constantly so I could lay my hand on his chest and just feel him breath. Thankfully he has grown out of this. The last time it happened was about a month ago and so far he's doing great!
Tyler was born at the 85% in weight and the 60% for height. Since that time he has made a rapid decline and his weight and height have plumeted all the way down to the 1st percentile. He is absolutely adorable and perfectly proportinate, but his doctor is showing more and more concern for his health.The problem is that he eats like a champ. I've even started giving him fruits and veggies because he seems hungry every time I sit down to eat myself. Still his weight has almost come to a complete stand still.
Yesterday I was taking Tyler in for one of his many weight checks when the doctor came in and said he would like to do a blood and urine analysis on Ty just to make sure there isn't an underlying issue causing this to happen. So I took him down and had to go through the horrible experience of having blood drawn from my tiny baby boy. Just pray you never have to do that, it was awful. Then they attached this funky bag thing to his boy bits and we waited for him to pee. And waited. And waited. And then we left to drive around for a bit and go to the library while we waited for him to have wet thoughts. Finally we were successful and heading back to the hospital.
After dropping off his pee bag to the lab I thought I would go upstairs to the doctors office just to check and see when I could expect results back. The lady at the desk told me to hang on, proceeded to have a whispered conversation with the nurse, and then austerely told me the doctor needed to speak with me. So pretty much I was terrified by this point.
I got back to Dr. A and he explained that Tyler's blood levels are low. Specifically that his white blood levels are dangerously low. He said that kids with leukemia sometimes get levels of 500 like Tyler has while they are going through chemotherapy. At this point I'm internally ticked off here! WHY would you ever bring up the words leukemia and chemo to a mother without any conclusive results?! Which is a point my husband brought up later on while we were driving to Lauren's ballet recital. But back to topic here. Dr. A went through this big long talk of which I only understood about a tenth of and sort of explained that with levels this low his body would have great difficult fighting off any kind of infection.
Tyler had had this high fever all day for the last two days now. He didn't have a runny nose or cough or anything. If he hadn't been burning up I never would have had a clue that he was sick. Dr. A said that this in particular worried him with his white blood cells being so low. I was confused because in my head it made sense; he's sick, his body is using white blood cells to fight something off, so obviously they will be lower, right? But now I've been doing some research and understand what he was talking about. First, when looking up "low blood count in babies" the search results alone made me catch my breath. I know logically that acute leukemia isn't something genetically passed down, but considering Brett's little brother's history it is still at the front of my mind.
It says that when a persons white blood cells are low that they won't show outward signs of illness. Signs like a runny nose and sore throat, or a cough. All he had was a fever for 3 straight days going up to 102 degrees often. So this would suggest that his white blood cells were already low before he picked up the virus I had. I've been having a rather nasty cold for the last couple of weeks so I'm assuming he picked up the virus from me. So after all that talk, Dr. A said he wanted Ty to have another blood test run. So we headed back down to the lab where all the lab ladies let out an "O no!" at seeing Tyler back again. All the ladies had been wooed by him the first time because he gives the sweetest hugs ever. They drew blood from the other arm. Ty took it like a man. He never full on cried, but he stuck his tongue out of his mouth and up to his top lip and whined the whole time. I was so upset at not being able to help him at all. Again.
At the end of the doctors appointment Dr. A suddenly changed his face into a smile, explained that this could all be nothing and not to worry. He would call me with any results as they came in and that it could be any time within the next 5 or so days. Now today I've been called several times by the doctors office to tell me the urine test is fine so far, and that I have to take him back next Wednesday for another blood draw and testing.
When I look at Ty I don't panic as much. He's just so active and happy and healthy looking. But whenever I start to think about possibilities I start to panic. That white hot kind that only a parent can feel I think. Tonight we're taking Ty out to my parent in laws house for another of many blessing he's been giving in his short but eventful life so far.
I want to know if YOU have had any experiance like this or know of anything that could help me feel better. I'm praying that this turns out to be nothing at all and I can update the blog next week saying Tyler is 100% in the clear. So what if he's small? I certainly don't care.
***I finally figured out why Ty opens his mouth really wide and puts it right on mine, he's giving me baby kisses! He's been giving me "kisses" and hugs all day. Is he trying to tell me it's okay that I put him through torture almost all day yesterday?
10 comments:
This is scary. Nothing a mother ever wants to experience...even if it turns out to be nothing. I sure hope he is okay. We will be thinking of you and cute, cute Ty.
I am so sorry you have to go through this. You and Tyler will be in my thoughts and prayers. Love you!
What a sweet little man. It's hard to watch your kids get poked and prodded around. I'm amazed at his cooperation. Please keep us posted. Thinking of you, and hoping for the best!
So my heart dropped to the pit of my stomach when you said leukemia. That has to be one of the scariest words in existence. I know the white hot panic...and it is worse when you can't do anything to relieve it until you get the results. I don't have any words to make you feel better but I can say we are all praying for Ty and for your whole family. I sure hope and pray that your next post will say he is in the clear.
He is such a cute, cute little man and he looks so happy and sweet. I got tears when you talked about him sticking his tongue out to the top of his lip as he having things happening to him he can't understand. What a brave little guy.
Prayers. Love you.
oh man, cheri. i went to reach for my phone to call you and realized i don't have your phone number. i am praying for you and little ty. my heart breaks for what you are going thru. i guess the only comfort here is to remember that Heavenly Father knows what he's doing. i'm sure everything will be ok. it's makes sense that they would be low if he was getting sick. i will be checking back daily to see any news. poor guy.
Cheri, I don't know if you remember me or not. My name was Lisa Ahlborn in high school, and my family moved away our senior year.
My nephew went through a situation just like this last year. Like Tyler, his doctor was worried about his growth and ordered blood and urine tests. (Right now he's 18 months old and almost the same size and weight as my 7 month old.) He's always eaten like a horse, but he seems to grow very slowly. Doctors expressed concerns about his white blood cell count as well and did more blood tests over a 2-3 week period to track his WBC levels.
In the end they decided that he was fine. He's just little. They had him drinking meal supplements between his regular meals to see if that would improve his growth, but eventually they dropped that too. It's not much of an explanation, and it was so frustrating for his parents, but he's happy and healthy and all is well again.
I'm sure that our family fasts and prayers and priesthood blessings made a difference. I also believe that this is just the way my nephew's body works. Tyler does look happy and healthy and active - even in his pictures. You'll be in my prayers.
I just thought of something else. when brady was little he had little things he would do that showed signs of autism. it was always in the back of my mind and then there would be people who i would talk to about it that made me nervous and i was paranoid about it quite a bit, but for some reason my gut instinct would always tell me he didn't and that things would be ok. listen to your instincts. it sounds to me like you know your little boy better than any doctor ever could(obviously). it doesn't make it any easier to not be nervous, but it will all be ok. your in my prayers!
Cheri, do you remember Deborah Metts from our ward? She adopted a little boy who has had the same things happening minus the breathing stuff. Anyway her son has already done all these test and they think they know what is wrong with him. It might be good to e-mail her and talk. She might be able to shed some light or at least give advice or support. It's hard not to get crazy. Usually things are not as bad as they seem. With my experience, doctors jump the gun and head right for the worst thing a kid could have when really it's minor or nothing.
Thanks for all the information! Lisa, that is very interesting to me about your nephew. That made me feel a lot better.
I've always been told that my kids weights are too low and that I need to boost them up. We've even resorted to giving them high calorie chocolate drinks, those meal suppliment ones, to try and help them gain. It neer did a thing to help, it's just how my kids grow. Each one is very healthy and they've always been very smart. I wouldn't even worry about Ty at all if it weren't for his WBC count being so low.
Jana, I know exactly how you feel shen people are asking those type of questions about your kids. I get pretty defensive, I don't mean to, it just happens.
Steph, that name sounds familiar, but I have no idea how to contact her. Do you have her email?
And thanks every one else for your thoughts and prayers. Our bishop lives right by us and came over and gave us all blessings. I'm not really sure that everything will be okay, but I have felt a lot more calm since then.
Cheri and Brett, We love you guys and are praying for all of you. Wish we were their for you to lean on.
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