Posts Tagged ‘diabetes’

Balancing Your Other Children’s Needs When One Child has a Serious Illness

Friday, November 7th, 2014

Balancing Your Other Children's Needs When Your Child has a Serious IllnessChildren with chronic illnesses require a lot of attention from moms and dads. That is a fact of life I’ve become very accustomed to as I’ve raised Alayna, my youngest of three, a 20-month-old with various medical conditions, including a rare form of juvenile diabetes. But what I didn’t expect to learn through this journey is the impact on the siblings of a child with a chronic illness.

As an infant, Alayna’s particular medical needs required us to take extreme measures to protect her from germs. Alayna could not be in common public places such as the mall or kids’ play places. We limited visitors and screened people for viruses before coming to our home. My older children were 3 and 5 at the time, and we just could not risk having their playmates over, as they may be carrying a virus that could be harmful to Alayna. This was difficult for my children to understand. I was always feeling torn about how to handle this. I did not want to split our family in different directions, but I also did not want to dismiss the importance of my older children’s need for socialization and community inclusion.

Despite our efforts, at times Alayna would end up sick or in the hospital for monitoring and testing, which would require at least one parent to be away from home for a few days. Depending on the floor of the hospital she was on and the particular season, children may not be permitted to visit. This presented a difficult decision about what to do with our older children, which parent goes, which parent stays. More guilt. Guilt over the thoughts of bouncing them around, guilt of the thought of missing out on a day of their lives.

My 3 year old was a bit young to be affected by all of this, and had a pretty passive personality. My 5 year old did not. She was fully aware. After a hospitalization, I would come home to having her claim she could not breathe. If she had a tiny cut, she would itch it repetitively to make it more visible, to elicit more of a response from us. One time she actually pretended to be drowning in our pool; clear-cut cries for attention. More mommy guilt.

Here are some ways we managed Alayna’s health while trying to keep her siblings needs in balance as well.

1)     We recognized that with Alayna’s medical needs being so intense, they did need to surpass others’ needs at times, and that was okay. Although we felt bad, it was nobody’s fault, and some things just needed to be prioritized. This might have been something acute such as Alayna’s urgent need for a snack taking precedence over my 3-year-old’s want for a snack at a given moment. My children may not have understood exactly what “low blood sugar” meant, but they did pick up on the urgency. They came to understand that it meant that Alayna NEEDED to eat, and they began to appreciate that. It also might mean something more long term, including the need for me to travel to see a specialist and be gone for up to a week. This truly ate at my heart, as sometimes it meant missing a school event. But I had to keep focus that in order for us to be a family and to be together again, I needed to get Alayna well, and that is what I had set out to do. I could not feel guilty about that.

2)     While in the hospital, it became my job to be there and my husband’s job to be home with the older children. He would of course visit or bring the kids to see me at night if possible, but for the most part, he was home getting them back and forth to school, and activities, and doing homework and all other hustle and bustle that came along with a busy household. This is not to say this is the right way to handle the situation, but it was the right way for us. It made me feel better that my other children were not being shuffled around amongst family and friends. It made me feel better that their routine was not disrupted. If they had a school event, at least they had one parent there. It made me feel better that they had a parent with them in case they got sick or hurt. And what feels good to you is what is good for you and your family. I was once called out by a hospital staff about my husband’s whereabouts and his lack of involvement. She was not there at night to see him visit and she did not bother to ask about our home life. She judged without knowing. I had to learn to look past these hurts and keep focused on what was important. Thankfully, technology made being away from home easier, as I was able to FaceTime with the kids when I could not be home.

3)      We always tried to be mindful of our older children’s presence. Even if they are in the other room, children are always listening. So if we needed to vent to each other, or speak about a test result or doctor’s visit, we did so behind closed doors whenever possible to decrease their anxiety. Even if they could not understand exactly what we were saying, they could pick up on tone and emotions that go along with it and are pretty good at putting pieces together. They know when something is “not good.” We did not want to put any added stress on them that could be avoided.

4)     We used simple language to help the children understand what was going on with Alayna. Instead of keeping them completely in the dark for their wild imagination to take over, we offered a simple explanation for their worried little minds. For example, when Alayna needed oxygen early in life, we explained that she couldn’t breathe as well as they could, and needed this special machine to give her extra fresh air. They trusted us, so if we were able to give a simple explanation, they were happy with that.

5)     Birthday invites and my older children’s interest in going out were a challenge. We decided that events that were deemed to be important, such as birthday parties, could not be missed. One parent took the older children, and one parent stayed home with Alayna. That was the simplest way of handling that. When our kids asked to go somewhere and both parents were not available, it was not as clear cut how to handle it. In the beginning, I constantly found myself saying “we cannot do that, it’s not safe for Alayna,” or some variation of that statement. It one day hit me that the kids could begin to resent Alayna. So we tried to divert their eagerness to go out to a different at-home activity, with no mention of Alayna’s needs. If they wanted to go to a play place, I would say, “Hey! I was thinking of setting up a really fun obstacle course in the playroom with tunnels and hula hoops, would you guys like to help set it up?” When it comes down to it, kids just want to have fun, and they were happy to have my attention, and to be doing something we do not do everyday. That’s not to say we never went out, but when it just was not possible or posed too much risk, such as during peak flu season, they were easily diverted in this way.

6)     Taking the older children out individually for a mommy and me/daddy and me date night proved to be a very effective strategy. It did not have to be expensive or extensive. My daughter was happy with getting dressed up and going out for tea and a cupcake with me. My son was happy to ride in daddy’s truck and go to Home Depot with him. Even if it was at home and I did a special art activity with them. So long as the attention was on them and it was an interactive activity they enjoyed, they were pleased and it definitely went a long way.

7)     When my 5-year-old was exaggerating an injury for attention, we addressed the minor cut, or whatever she presented with, as the situation warranted, with maybe an extra hug, and sent her on her way. Probably sounds like “tough love,” but we did not want to feed too much into this negative behavior, as she could really hurt herself. When she did things like this, it would alert us that she needed more attention, and we would plan an individual outing as discussed above.

We love all of our children equally, but unfortunately their needs are not always equal. Most days we handle things just as all other busy families with multiple children do. But when Alayna’s medical needs became urgent, we prioritized it as was necessary and made it up to other children in other ways, or on other days. We had our plan for how to handle outings and hospitalizations, and we stuck to it as best as we could.

Being consistent on how we handled certain things proved to be key. When Alayna needed to be in the hospital, they knew they would be home with daddy, and I think they were comforted in knowing this. I will always carry some of the guilt that would come to any mom in this situation. I allowed myself to have breakdowns in private when the children were not around. But once my pity party was over, I re-focused that energy to spending meaningful time with the children. I also tried to look for the positives in the situation–I know that my older children will develop the strength of being compassionate, and I am happy for that.

Michele Ogniewski is a mother of 3 who lives and writes In Saratoga Springs. She is a part-time social worker and full-time advocate for her daughter’s medical needs.

Advocating for Your Baby’s Medical Needs

Wednesday, June 4th, 2014

The birth of my youngest child followed a normal pregnancy and an uncomplicated delivery. We left the hospital with our perfectly healthy baby, eager to introduce her to her siblings and the world. We had no idea what medical problems we would soon be enduring with her. Nothing could have prepared us for it.

Within a few weeks of going home I observed her breathing loudly. We made two separate visits to our pediatrician, and both times were reassured that she was fine, even after I mentioned that the loud breathing seemed to stress her. On the third visit with the same concern, I showed our doctor a video I had taken with my phone of the episode. Once he saw and heard the video, he validated my concerns and decided to send her for a chest x-ray.

Two hours later, we ended up in a pulmonary specialist office at a Children’s Hospital. She was diagnosed with laryngomalacia–a “floppy” airway–which was complicated by severe gastroespophogeal reflux disorder (GERD), another diagnosis that she would soon be given. This would not be the last time I had to push a physician into taking my concerns seriously and get them to recognize that I do know a thing or two about my daughter.

She went on to have blue spells, needed oxygen and eventually surgery to correct her breathing issues at the tender age of eight months old. Two months after her surgery, I noticed she wasn’t responsive to my playfulness and seemed to be in a fog. I called the pediatrician four times in one day reporting that something was just not right and that I was very concerned. All four times I was reassured that she was fine, and that it was likely just her reaction to a recent UTI. One hour after my final plea for help, she had a seizure in my arms and was rushed to the hospital, blue and unresponsive.

Advocating for your child

After hearing that she had a UTI, the physicians in the emergency department quickly and carelessly diagnosed itas a febrile seizure. I told them over and over that she did not have a fever and had not had one all day. They stabilized her and sent her home, reassuring me she would not have another seizure.

Two days later she had another seizure. After a long series of hospitalizations and tests that followed, she was eventually diagnosed with a rare monogenic form of diabetes, and her seizures had been from severe hypoglycemia. Months later, she started having blue spells again during her sleep that were repeatedly dismissed by her physicians. A sleep study was ordered after I presented them with a video and pictures of her coloring following sleep. She was diagnosed with both obstructive and central sleep apnea.

Instead of enjoying every moment of my youngest and final child’s infancy, and “just” being her mommy, I quickly became her case manager, full-time nurse and advocate. She did not have a voice and was nowhere close to the age where she could report how she felt, so it became my job to be her voice and obtain the best care for her possible.

I like meeting new people and am easy to get along with, but I had plenty of friends and was not at the doctor’s office to make another one. So I decided to put my polite, quiet nature aside. If she turned blue three times a day, I was on the phone three times that day. It turns out my most valuable tool turned out to be my smart phone. Video and photographic evidence of my concerns was able to tell the doctors what I did not have the medical vocabulary to describe.

It has been a long 15 months and my sweet baby girl has had her ups and downs, but I like to think that I played an integral role in solving some of her mysteries and ensuring she received appropriate diagnosis and treatment.

Here is what I have learned about how to be effective in advocating for your young child’s medical concerns and needs:

1)     Stay calm. It was very easy to become angered by a physician telling me everything was just fine when I knew otherwise, but keeping my cool and dealing with it when I’ve had a chance to take several deep breaths proved to be effective. Yelling gets you nowhere, and in order to get your point across effectively, your mood needs to be stable. Leave the office, drive home, listen to the radio. If your child is an inpatient, go for a walk, grab a cup of coffee, scroll through some cute pictures of your kiddos. Whatever calms you, employ that strategy and call back when you are able to have a productive conversation about your concerns.

2)     Vent to your friends and family. I always feared that I was a burden to my friends and family and that they had “heard enough.” I worried that my situation with my daughter would drive them away. Who was I kidding? They were not going anywhere. I would be there for my friends just as they were there for me. If they ask how you are and what they can do, don’t answer “fine” if you’re not. Tell them how you feel and what your frustrations are. Get those frustrations out so, again, you can be productive when dealing with your concerns head on.

3)     Realize that you do have choices. Although I maintained my composure so that I could maintain a good, working relationship with her current physicians, I also knew that there were other specialists out there and I was allowed to shop around. Call your insurance company and find out what those options are. Call other offices and let them know what you need and determine whether or not they might be a better fit for you and your child. Second opinions exist for a reason, so don’t be shy to get one.Advocating for your child

4)     Accept help. If someone offers to take your other children for a play date, or to send a meal up, thank them and accept. You will need help to get through this, and you would do it for them as well.

5)     Trust your instincts. I have never experienced such strong mother’s intuition as I have during this journey, and nine times out of ten I was right. Hearing a doctor tell you your baby is fine should be reassuring, but when the pit in your stomach tells you otherwise, then you need to voice what your gut is telling you. Don’t be shy. Don’t give up. There are some great doctors out there and somebody WILL eventually listen to you. Even though the end result may not be great news, having a diagnosis is the “good news” because that means you can start addressing the problem instead of searching for answers.

Michelle Ogniewski is a mom of three and full-time advocate for her kids. She lives and writes in Saratoga Springs, New York.