Mothers know best

(Will) #1

I am a 34 year old father raising 4 healthy beautiful children. Ages 10, 8, 4, and 6 months. My 6 month old baby girl was diagnosed on the 16th. To say we were shocked is an understatement. Although signs were there for over a week, we didn’t know they were signs. And with 3 other kids we have seen and learned many things we never knew existed. Having a new baby often presents many challanges of its own. The main thing I learned this time is to speak up and speak out. Don’t just accept or be satisfied with what your doctors tell you. It may sound corny, but mothers know best, here is why. Our week leading up to the t1d diagnosis went like this. Our little girly developed thrush. For those who don’t know…is a fungal infection children can get in their mouth, triggered by a number of different reasons. Anyway Monday she went to her pediatrician for it. It was also found she had a yeast infection, which the thrush is also a type of yeast. So she came home with an antibiotic for it and some diaper rash cream as well. Tuesday her mother noticed her wet diapers smelled extremely strong. I admit I would have never given that a thought. So she made a call to Dr office only to be told that it doesn’t sound serious enough to bring her back. However we were scheduled the following day for a wellness check, so she was told to bring it up with the Dr then. So Wednesday comes along, the baby receives 3 immunizations, and a flu shot. The diaper thing…no big deal, could be a number of things. So we were told. And Thursday, baby girl was just not herself at all. No smiles, no giggles, in fact very emotionless, and seeming to stare into space. When I came home from work she seemed sick to me. In my mind I am thinking that after 4 shots yesterday, surely she doesn’t feel good, but nothing alarming. Late that evening as her mother was making dinner, and she is watching, she started to choke. It passed quickly like a dry throat or somthing. Then a few breaths later it happens again. Now we check her airways looking for obstuctions and found nothing. A few breaths later it happens again and we are wondering if she has a hair caught in her throat, or did one of the other kids leave something they shouldn’t have within her reach? It goes on every few breaths for a bit and her mother comes into the room where I am asking if her lips look blue. I said no. So she asks the other kids and they all agree with mom. I am thinking this is purely suggestive because they heard mom ask me. They also like her better! And honestly I did not see it. So I am holding her while mom calls the doctor. I am checking her out and I don’t see it. She was a bit pale but otherwise okay, just under the weather a bit. So she comes back in and says we have to take her to the ER. This sounds rediculous to me because I am just not seeing it. I am thinkig about all of the shots she had, or maybe some virus going around. With our other kids having every virus under the sun and possibly some never known by medical science to exist, I can’t imagine it being anything more serious. Also our other kids have never had any medical issues. 2 of them have had stitches, we’ve seen strep throat, pink eye, hand foot and mouth disease just to name a few. However the possibility of anything still exists, and mostly to satisfy their mother I agree to take them. So we make arrangements for a grandma to watch the other kids, as it is now their bedtime. I start to get ready to spend 4 hrs wasted in the ER. Then the baby throws up, projectile style, which she has never done in her short existence. So we get to ER which was crowded. It’s also flu season. The majority of people waiting are wearing masks, and all of the staff as well, which is just scary. So we come in thinking she is having an allergic reaction to one of the shots or possible flu. And after viewing that waiting room I would assume that if she doesn’t have the flu, we are all going to now. So she gets evaluated and of course, perks up and gives the first and best smiles of the day. People are gushing over her full head of hair and smiley cuteness! They check her all out and can’t find anything. They rule out the flu, as well as some other things. They said to follow up with her doctor in a few days, and bring her back if she begins to vomit again, or gets a fever, or if she has diarrhea. So we left with no real answers about the day. We get home at 1 am, which is awesome, because my alarm for work will be going off, at 430 am. By 2 am she throws up. She throws up maybe 6-8 times that night into late morning. As the house wakes up and kids are getting ready for school, I am planning on arriving late to work. Their mother is staying home to take care and visit the doctor. So I get updates from mom at work, baby is throwing up still, and breathing heavy. And now mom is getting nautious as well. They visit the doctor around 2pm which the baby throws up on the way. (A 5 minute drive) Mom makes mention she also hasn’t been feeling well. Which I think confused the whole situation, with it being flu season, or at least thinking they both have the same stomach virus. On the way home I get a text from mom to pick her up tylenol because she is about to be ill. I arrive home at 4 pm and mom is laying on the couch crying and moaning in pain and nautiousness, begging me to take her to med express. I change clothes quickly and Mom, baby, and I head out the door. She promptly gets booted out of the med express facility, because if you look sick they tell you to go to the ER. So we drive to a local hospital. Meanwhile the baby is in and out of sleep. Her breathing only getting worse. She is now making a grunting noise as she gasps for air. While in the waiting room, the doctor calls moms phone too see if the baby is getting better or worse, and come up with a plan. Too sick to answer, I pick up instead and explain the situation. The doctor thinks mom should be the patient now, but we still need to take the baby to the hospital. But with moms condition it could wait until morning. Unless of course she becomes inconsolable. My mother in law, who was with the baby during the day, while we worked, agrees to relieve me from the hospital, so I can take the baby back to the hospital, we were at the night before. I now call my mom to go with me. Once she sees the baby, she is quite concerned, even suggesting we call an ambulance. I am way faster, so we rush down, rush in, and get to a room quite quickly for how many people were there. My mom pleads with the escort to tell those doctors to hurry. She explains that we are in the section treated as more severe and it probably not take long. Although she will tell the doctor anyway just because she is so little, and looks/sounds so bad. They came quickly, I give them the speil I am now giving you, with a copy of the report, in my hand, from the doctor earlier in the day. But they seem uninterested. They order x-rays, ultrasound and tests. They put her on a breathing machine. They draw some blood and quickly a sound of relief is heard as they have a diagnosis. The doctor turns around and sits at her bedside, across from me and what he said next I will never forget. “So what is happening with her is called diabetic ketoacidosis.” He goes onto explain in detail what is happening. He explains she will have to stay several days. He explains we will be going to intensive care and what will happen now.My mother and I completely in shock, look at eachother with dropped jaws. I now have to call the baby’s mother to explain this. I find out she does not have the flu, but a virus. She ends up coming to the hospital, late the following afternoon. That night was awful. That poor little girl went through more trauma that night, than any of my children, at any age ever have. She was so dehydrated from vomiting, diarrhea etc that the nurses in the ER could not get a second IV in her to be able to draw blood. They decide they will let the ICU do it instead. So they try and fail. They call the IV team, and they fail. They call anesthesiologists, who also fail. It is then explained that our only other option is a central line, and if they don’t do it soon she may have swelling of the brain. Too much time has already passed without being able to treat her. It is now 4 am. I of course agree, to save her, by any means possible. So we are asked to leave the room. We come back into the room, with this little baby hooked up to what looked like one of everything they have to offer. I don’t think I slept that night. I may have passed out more than likely. The next morning was rough, but at least she was being treated. After 2 days in ICU we moved to another floor, with less frequent monitoring. We began getting educated on how to manage this at home, devices, and nutrition. Looking back at the past week, knowing what I know now, the symptoms were there. They were not recocnized by me, the doctors, or even the hospital at first. Everything we have been through, the previous week, makes more sense now. Mothers know best. I don’t think the baby would have made it through the night if we did not come back. I am greatful for this incredible hospital, the amazing resources, groups, hotlines, websites, and people that I never knew existed. It has been an overwhelming experience in the least. As I write this I am beside my baby, still in the hospital, on the couch, where we will spend a few more nights. I am connected to this group, with all of you, which I had never heard of before this morning. It means a lot to me to be able to learn and share with this tool. I would like to thank anyone, who takes the time to sign up and post here. There are people who need you, can learn from you, and look here for some faith in hard times, and share positive energy. I look forward to coming here with questions, concerns, and to share my stories, and answer questions as well, to help others as I continue to learn. No matter what the circumstance may be, I know we are not alone, and have plenty of support. Thank you for being here!

(joe) #2

@Will72 hello Will, after this ordeal and horror, taking care of diabetes will be the easier part. yea you have to learn a new language, and have to learn to do a new juggle: “food - activity - insulin” but you already proved you are tough as nails and fearless in an emergency so this is really practice and observation.

along with an endocrinologist and a CDE (certified diabetes educator) you will build a team to help this first year and I promise you’ll be a expert in a very short while.

please reach out and talk or ask questions we are here for you. -Joe

(Elsie) #3

Hello, I’m so sorry baby and all of you had to go thru this, I was diagnosed at 8 yrs old, (27 yrs ago) it took Dr’s like 6 months to diagnose me. I want you to know that your baby girl is going to be ok, and looking forward many years…teenage years will be xtra difficult because of T1D lol!! If being a mom is something she wants to be someday, make sure that no Dr or anyone tells her she can’t/shouldn’t. Having T1D shouldn’t stop anyone from doing pretty much anything they want. Love and blessings!!!

(Will) #4

Thank you! I realize that is a bit lengthy. I guess I really needed to get it off of my chest, as well as share with people who will understand. We are pretty confident we have everything we need. She is going home with a pump. That is the main reason we are still here, as it took extra time with the beaurocracy of insurance. It is really hard for the doctors, to figure out dosing with her little 14 pound frame. The pump can deliver the tiny amounts she needs much easier, and reliably. You are right that the hard part is over. We really are greatful to be a part of this. Thank you again!

(Cris Cooper) #5

Hi Will—- reading your story made me go back down memory lane. We had an almost exact same situation as what you went through. My now 4 yr old son was seen by his pediatrician and diagnosed him of constipation, days after and still no changes. Doctor advised us to take him to the ER and so we did. They asked us what his primary doctor diagnosed him with and we said constipation. Got him an X-ray and suppository which made him “go” and then was sent home thinking that everything is going to be back to normal. But the next day he Just did not look right and was gasping for air. With no hesitation, I told my husband that I am taking him back to the ER. Same time as yours, it was the flu season and the ER was packed. The triage nurse approached my husband and asked to take my son’s vitals. As soon as he did, he told the medical staff that he should be seen next no matter how long the line was, he needed to be seen right away. My husband and I looked at each other both thinking that there is something serious going on. They took us in and there were about 4 nurses attending to him while the doc told us that he is DKA. My son was lethargic at this point and they could not get a line on him either due to dehydration. The doc said that they need a line soon otherwise they’d have to do it through his shin bone. They were able to find one on his neck. As soon as they stabilized him, we were sent to a better hospital where T1D is better handled. I am sorry for the long message, but bottom line is you are not alone. I won’t sugar coat it, it will get frustrating. But you know that your baby will depend on you. You and your family will go through this together. There will be a lot of unexplained highs and lows, fighting with pokes because they are kids… but you know you’d have to do it because it is what she needs to stay alive. I guess I needed to vent too by telling you my story. I should utilize this community as much as I can and I know you would (and should) too. We will all be here for you even if you just need to vent or if you have any questions. There is a lot to take in especially the first few months from diagnosis. Hang in there and stay strong for her and your family.

(Cris Cooper) #6

PS—- it will get better!!!

(Karmella) #7

Thank you for sharing your story. My story began last year on February 28 when my then 7 year old was diagnosed after I pushed doctors to do something, anything! My situation was not quite like yours but I am sure we went through very similar emotions. I feel for parents with such young children that have been diagnosed because I just can not imagine having to go through this with my daughter any younger. Forgive me I really just responded to tell you that a year ago I could not see today. I had no idea how we were going to survive, how I was ever going to be able to learn to care for my daughter. The new language, the books, the needles, it was all so intimidating and my 7 year old yelling at the nurses and doctors that mommy is not a doctor and so she was not going to let me poke her, well it made it all even more difficult. But we came home and we learned together, and we learn to overcome challenges everyday. It is still difficult for me to administer insulin. My stomach flips every time I put a needle in her, but I do it, and every time her sugars are in range I sigh a sigh of relief. Life has changed and I know I will not get through it with out all the support of others who have gone before me. The T1D community is an amazing group of people. I usually just read what people post on here, but with our 1 year date approaching, your post hit close to home. I wish you and your family well.

(Will) #8

Everyone is very supportive, making sure we know this will not stop her from doing anything she wants to do. I don’t know any different, but cannot imagine the struggles I would have with my older kids. It is hard enough to get them to bring home their math book. Getting them to do homework or clean their rooms is a daily struggle as well. Not that the baby will like getting poked, but will at least not know any different. Thank you for sharing stories, not matter how long.

(Stepmom) #9

My prayers are with your family… having been a stepmom who kept saying something was wrong with a 13 yr stepdaughter and her mom wouldn’t do a thing about it until she collapsed onto a kitchen floor, ER and then discovered T1D. You have a lot of support in the community, learn, listen, when she is able help her become her own advocate and when she’s ready help her do it and be independent… After things calm down check area for support groups thru JDRF – I go to one locally monthly just to hear from T1D to pass along info when need… Everyone is here to help Take it … also if need touch base a local schools your kids go to and you can find some other children with it and see where groups or info at. Best of luck and God Bless your daughter.
A side note - I do believe that some vaccines for some reason are triggering our childrens bodies in an earlier stage of T1D to appear - funny I have heard of many within weeks of suddenly are T1D, she was within months of …

(Will) #10

I have a suspicion about the vaccines as well. It is frustrating that schools require certain ones, and it is like we as parents don’t have a choice! Which ones are actually necessary? It makes me angry that they don’t trully know long term or even short term effects. And then the schools require it so that they recieve the government funding. How can you have a “say no to drugs” campaign, and then tell your kid you gotta take these drugs?

(greg) #11

Hey Will and Crew - thanks for sharing your crazy story, great news is you made it thru-awesome!
We had a similar deal with our 11 yr old daughter (3rd child) JAN 7th 2018, crazy scary…how did we miss this, what did we do wrong, what could we have done to prevent this, answer very little/perhaps nothing. What a rollercoaster ride.
Grateful we finally caught and we found an amazing team at IU/Riley Hospital!
Keep on asking, reading, fighting and working hard to deal with all the changes.
Peace 2U and yours!

(Will) #12

Thank you! I can totally relate to where you are coming from. Of all my kids this was the worst. I feel like once you get through that first part, managing at home is a whole new experience.

(morseyami) #13

Hi Will, how are you doing today?
Oh my, i can relate to your story completely. My son was diagnosed sept 2012, he’s now 18. He too had DKA and we had a terrifying experience initially on arrival at the hospital, terrifying. I actually did pass out!
Yes, it does get better…for me its a mixed bag of emotions…like life i guess.
I agree, its comforting to know we are in this together. This forum has helped me a lot.
All the very best :slight_smile: :slight_smile:

(Karlatucker) #14

Wow, I am very impressed that you are so poised considering all that is going on, but I admire you. It is so helpful to reach out. I can tell you are going to get SO many replies that mine won’t matter much. The online diabetes group is a group you don’t think much about until diabetes happens, but they are the most awesome people I have ever been around. My sons diagnosis was missed, and by the time they drew blood, his glucose was 1096. He was 5 years old and now 12. He is the happiest, healthiest, bravest kid I have ever known. I, too, worried that his life would be forced a different route, but it is not so. We, as a family, decided to do everything in our power to keep him happy and healthy. You can do this! My wish for you is to keep your head up, learn all you can and remember as time passes, you learn to adjust. Unlike you, I did not reach out to anyone, nor did I know another type 1 diabetic. It was over a year passed his diagnosis when I found JDRF. I attend their educational Summits, raise money on their walks, and getting ready to attend Government Day in a couple weeks. I am at my happiest educating and advocating. You will find your niche and ANYTIME you need a shoulder, you can reach out to me or ANY of the thousands in this absolutely, incredibly awesome community!

(Will) #15

Karlatucker thank you! I don’t feel like I was poised. I never realized a severe situation until we were sent to the icu. It was her mother who was worried. I’ve seen my kids sick with many different things. Nothing they ever were hospitalized for. I just figured it would pass, like it always jas before. If not for Ivy’s mom, I’m not sure what would have happened. Also her getting sick at the same time, confused the situation, and being flu season. Even the pediatrician said to take care of mom until the next morning unless the baby gets visibly worse. Thank you but I don’t feel like I desereve the nice comment. To me, it was more like luck. And once I did realize the severity of the situation, I knew I had to trust the staff. It was a helpless feeling. I only worry now about further complications.

(Rachael) #16

Thanks for sharing. I think the point of your message is that if you have a gut instinct about your child, don’t quit until every stone is turned. My 9 y/o son was constantly thirsty and peeing 8-10x per night. At first, I didn’t notice the frequency… it seemed a little odd, but maybe it was a fluke?.. until my husband went out of town and my son slept in bed with me for 5 nights. Feeling him get up again and again and again and changing his underwear again and again and even peeing the bed, sometimes 2x/night, made me know there was a problem. I’m lucky that I was able to get in with the pediatrician the very next day and they caught it immediately. He was rushed (by ambulance) to Cleveland Clinic Children’s Hospital and diagnosed that day. Luckily, no DKA, but they took it very seriously. Today is our first day back in the “normal” routine of school and work, and so far, so good. I am taking comfort in the messages of each of you telling me this will become more manageable and begin to feel more “normal” over time. Thank you for this community!