Tag: Children’s Hospital

When there is no “getting better”

When there is no “getting better”

by Jaime S. G. ♥ 1 Comment

When there is no “getting better”, your definition of “better” changes.

Recently I read another blog titled “When Your Medically Complex Child Is Never Really ‘Out of the Woods'”, by Brandis Goodman. It sparked a few good conversations with family and really got me thinking about how I can express how the term “better” has changed for me.

Normally when people ask me if Lyra is “better” they are thinking in terms of normal illness. You know, like you get “better” from a cold. In that sense, Lyra will never get better. We can’t add the generic code that is missing, or take away the extra code that she has. We can’t change how her brain formed. We can try to help her other internal systems function more normally, but she will never be fully free from complications. She will never be “better.”

However, Lyra will have better hours, days, weeks, months, and (hopefully) years. When you care for a medically complex child, that really is all you can focus on. When I mentally check in on how she is doing, my thoughts sound like this:

“She has a better night, but a rough morning.” “Today was better than yesterday.” “Her morning was better.” “The last three days have been better.”

Now, does this mean that you shouldn’t ask me if Lyra is “better”?  Absolutely not!  Never be afraid to ask me about my child. Just recognize that we may be using different definitions of “better.” “Better” for Lyra doesn’t mean that she won’t stumble a few times, or end up in the hospital again, or need another surgery. “Better” doesn’t mean that she is “fixed” or cured. Better is all relative for her and changed day by day, hour by hour.

And really, there is no cure for cute.

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The Limits of Medicine

The Limits of Medicine

by Jaime S. G. ♥ 0 Leave a Comment

One of the most common complaints I hear is, “it’s seems like the doctors aren’t even trying to find out __________”.  Believe me, I understand where they are coming from. However, I also recognize that there are limits to medicine and sometimes it is more art than science. Maybe I have a different perspective because I grew up around medical professionals. I have also grown up around teachers, and they will always tell you that works for one child does not always work for another. Sometimes doctors don’t know and there is no test that can find the answer.

Now, I also understand how frustrating it is. Even knowing that doctors do not always have the answer, sometimes it really gets to me as well. This is how appointments go with Lyra:

  • Genetics: “We have no idea what the future will hold for her. She is an interesting case. She will have disabilities, but we have no idea what those will look like.”
  • Cardiology: “Well, her heart isn’t normal, but it seems to be functioning okay. We are just going to watch it and see.”  Me: “What does that mean in the long term/ bigger picture?” Cardiology: “We have no idea.”
  • Urology: “Her urethra is dilated, but she isn’t refluxing into the kidneys.” Me: “So what does that mean?” Urology: “We don’t know, but we will just have to monitor it.”
  • Ophthalmology: “Her optic nerves are enlarged.” Me: “What does that indicate/mean?” Ophthalmology: “We have no idea.”
  • GI: “We have no idea why she doesn’t tolerate her feeds. It makes no logical sense.” (BTW, I actually really like her GI doctor because he is bound and determined to find a solution, even if it isn’t logical.)
  • Neurology: “Well her brain isn’t normal and we don’t know why.”
  • ENT: “I feel like we must all be stupid. Like we are missing something. It just doesn’t make sense.” (These were his actual words)

There are a few more, but you get the idea. To be honest, sometimes I leave these appointments and cry. I try not to do it in front of Lyra. Even though she is a baby, she doesn’t need to see how sad this makes me. I want to be able to fix SOMETHING, but I can’t. I want to know what to prepare myself for, but there are no answers. I want to know why one day she eats a few oz by mouth, and the next day she pukes if I have spoon in my hand.

Trust me, the doctors aren’t being lazy. They talk to each other and to other members of their departments. I think almost everyone in GI at the hospital knows Lyra’s case at this point. I see the look on their faces that says, “how can I tell this parent that I have no answers for her?” I always tell them it’s okay that they don’t have answers. No one does. But it still breaks my heart a little bit.

Right now we are back in the hospital, and we have been for a few days. Once again, Lyra isn’t tolerating her feeds. We even put in a new tube called a GJ (a link with an explanation is below). We feed directly into her intestines, and yet she still throws up. She throws up enough stomach bile that she actually manages to become dehydrated. She is doing okay, but we can’t quite get her feeds up to the point where she is fully hydrated or getting enough calories. We have no idea how long we will be here. No one has answers, but everyone is trying. The GI nurses who see her outpatient even came by to say hi and check on her.

I guess my point is, it’s not easy, and people need to remember that medicine doesn’t have an answer for everything. Sometimes we just have to keep trying and hope that eventually something works. Or, keep watching and hope that everything works itself out.

CHOP – Low Profile GJ Tube

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Wagon ride down to the cafeteria for lunch with Mommy and Daddy

How to Survive Your Child’s Hospital Stay

How to Survive Your Child’s Hospital Stay

by Jaime S. G. ♥ 1 Comment

As many of you know, Lyra was in the hospital again for a few days last week. She had an infection and became dehydrated. Because she is a complex case, it required closer monitoring than an average child. She was home two days later and it doing great. During my stay I ran into a mom in the elevator. I have no idea why she was there. It really doesn’t matter. It’s never a good thing. She was obviously stressed, upset, and worn down. She mentioned that it was the first time her son was in the hospital and I could tell she felt overwhelmed. While I wasn’t able to say much to make that mother feel better, I figured I would pass along what I have learned.

How to Survive Your Child’s Hospital Stay:

  • Take a deep breath: Panicking will only make the situation harder/scarier for your child. I used to view hospitals as scary horrible places. Going into one nearly gave me a panic attack every time (even though it was never because I was sick). Oh how my views have changed. When my baby is hurt or sick, I now view the hospital as a safe place where we find solutions.
  • GO HOME!!!!!: This may sound CRAZY to many people, but trust me. If you are going to have a child in the hospital for any length of time, you need to take breaks and GO HOME. When Lyra was in the NICU at Children’s National, nurses used to “yell” at me all the time to go home and get some sleep. I get it now. By going home you are NOT neglecting your child. You are recharging. Since Lyra is older, Mark and I trade nights there. No one really sleeps in the hospital (Lyra included), so this allows us to always have one adult who is fully functional taking care of her. And, if you can’t have someone else stay there, let the nurse know. Night nurses will make sure to keep a special eye on your child if you can’t be there. I know that Lyra has been passed around and held when we couldn’t be there.
  • Get to know your nurses: Nurses are amazing people and your biggest ally in the hospital. They are your teammates and they care about your child. If your kid has a rough day, they take it home. Trust me, I have been told by nurses. Nurses will help you take care of your child beyond administering meds. For example, Lyra is a terrible sleeper, especially in the hospital. At night, the nurses will frequently rotate with whomever is staying with her. They will rock her and hold her and try to put her back to sleep so we can get a small amount of rest. Now, if you happen to not like your nurse, it is totally okay to request a new one. Not everyone clicks. It’s okay.
  • Ask questions: No one is going to think you are stupid for not understanding something. Sometimes the medical professionals get so wrapped up in their conversation they forget there is someone in the room who is not familiar with the terms. It is okay to remind them that you need an explanation in normal people terms. Many doctors are happy to explain and even draw pictures. While their picture of often about as legible as their signatures, it’s the effort that counts.
  • Know where the refreshments are: I am not talking about the cafes and cafeterias. Every wing that I have been in has an area with a fridge, water cooler, and coffee (at the very least). Make sure you are keeping hydrated and for the love of god eat something. I can’t tell you how many times I have heard a code go over the speaker system because a parent fainted. If you are on the floor, you can’t take care of your child.
  • Accept the help that is offered: You would be amazed who comes out of the woodwork. Don’t be too proud to accept food, a change of cloths, or the offer to take your dog until your child is home. I am still humbled by the outpouring of support.
  • Ask for help: If you need something, ask for it. I have had to ask for food in ERs, asked friends for help with my dog, and a number of other things. People often don’t know what to do or how they can help. You would be surprised at how willing they are to give support.
  • Speak up: If you think something isn’t right, say something. While they may be the medical professionals, you are the specialist in your child. Especially if they are non verbal, you know when your child is in pain or just not doing well.  You know how they normally act and how they communicate things. It’s okay to be “that parent”.

I am sure many of the other parents who read my blog have their own words of advice. Please feel free to add them in the comments section. While I hope no one ever has to have their child in the hospital for any length of time, know that it happens and you can survive it.

A Love Letter to Nurses

A Love Letter to Nurses

by Jaime S. G. ♥ 0 Leave a Comment

This is for the 30ish (give or take a few) nurses who have helped take care of Lra up to this point.

Dear Nurses,

I love you and thank you. Now, don’t get me wrong, the doctors are great. But you were the one who rocked my two-day-old for hours in the middle of the night when I couldn’t be there. You are the one who stood vigil by her side after a scary day at another hospital. You were the one who showed me how to change her diaper without making a total mess. You were the people to show my husband and I 10 ways to feed and burp her. You were the ones who hugged me when I melted down by her bedside. You were the ones who made sure I ate and drank…. and sometimes slept. You were the ones who helped me at 2 am clean her off…. and me off….. after she puked for the 20th time that day. You were the one who stood up for me when doctors didn’t believe me. You were the one who allowed to me sleep peacefully when I couldn’t be there. You were the one who fed her patiently when I felt so discouraged. You were the one who made sure I knew how to do CPR and how to feed my baby with a tube. You were the one who listened to me when I knew something wasn’t right. You were the one up all night with her while I slept a few feet away. You were the one to put hearts on her cheeks after she had surgery. You were the one to change her diaper when I couldn’t due to tubes. You were the one who diligently checked her vital signs around the clock. You have done all of this, and a thousand other things I can not name. I have watched you take tender loving care of daughter. For that, I love you.

Love,

Jaime and Mark

The Blessing of Family

The Blessing of Family

by Jaime S. G. ♥ 2 Comments

I am one of those people blessed with a supportive family. That is not to say that we don’t have our own conflicts, lord knows we do, but at the end of the day we support each other. For me, yesterday was one of those days that I needed a little extra support. Most days I deal just fine with Lyra’s diagnosis. I put my head down, take care of what she needs me to take care of, and I try to keep a sense of humor about things. Other days I find the uncertainty overwhelming and sad.

All parents have dreams for our children. We look forward to taking that picture on their very first day of school. You know, the one where the backpack is so big compared to their little bodies that we are worried our little one is going to tip over. We look forward to their first words, tottering steps, and their first birthday cake all over their cute face. I looked forward to her first swim meet and sharing a sport that I love so much with her.

Then I am reminded that she may never do any of those things.

She may go to “school” at some point, but it will be nothing like what the average child experiences. While she will likely speak (she is very vocal right now), she will likely struggle to make herself understood. Forming words and/or sentences is listed as a challenge with both of her genetic conditions. She will likely struggle to walk, let alone run. And birthday cake….. yesterday we met with the surgeon to talk about putting in a G-tube (information below). Unless sometime really changes with her eating, that cake will not be on her face. Everyone around her will eat it, but she probably will show little, to no, interest. Lastly, while she already shares my love of the water, swim meets and a swim team may not be in her future.

So, some days I get really sad. And this is where my family steps in. I can always talk to my husband and my family was always available over the phone, but there is something about being able to sit with my mom on the back patio while she plays with Lyra. There is something about sharing a drink a with my brother-in-law. And it is so different to be able to sit on the couch with my sister with Lyra sleeping on my shoulder. The physical presence of family makes all the difference for myself, my husband, and most importantly, Lyra.

Some time in the next two weeks Lyra will be having surgery to have the G-tube placed (we do not know the date yet), and this will be a very different hospital experience than the last three. This time there will be no emergency room, no ambulance ride, and no frantic phone calls to get our lives reorganized. This time it will be planned, and she likely will not be in the hospital for more than a day. This time we won’t have to worry about who is going take the dog. This time I will actually have a bag packed for myself. And this time we will all be surrounded by family.

We are truly blessed to be here.

G-Tube information: http://www.chop.edu/treatments/gastrostomy-tubes#.VeePadNViko

Let’s Call Today a “Learning Experience”

Let’s Call Today a “Learning Experience”

by Jaime S. G. ♥ 2 Comments

Today was ….. interesting….. Lyra has a follow up appointment with ENT at Children’s Hospital.  There had been a little confusion because we thought the appointment was on the 28th, but when we received the phone call to confirm it, we double checked. The office said the appointment on the 28th had been cancelled and her appointment was, in fact, on the 22nd (today).

So, my mom and I prepared. The goal was to be out the door by 10 AM. WE MADE IT! Once we got down to the parking lot, Lyra puked….. So, my mom did a field change in the car while I ran the barf cloths back up to the apartment. After all was said and done, we took off by 10:25ish. We still had plenty of time to make it to our 11:20 appointment.

We get to Children’s and realize that the stroller in in my husband’s car. I ended up just carrying Lyra. The carseat was too heavy.

We then wait for over an hour to see the doctor.  Finally, we get called back and a nurse comes in to talk to us. Apparently, we have to see the doctor who did the surgery and that doctor was NOT in the office. Mind you, at this point, Lyra is really REALLY hungry.  So, we make a new appointment, they gave us a parking validation, and we left to give her a bottle. The good news is, she took a bottle well!

Finally, we get down to get the car to go home (we had to do valet because the parking lot was full) and the valet can’t find my car.  This is a bit more of a problem because my car is old and doesn’t have a fancy button to make it beep. They finally find my car and I am trying to set up her NG feed. While setting up the bag, two of the bottom pieces (including the piece that makes direct contact with the NG tube) fall off and land on the ground of the yucky parking garage…. Oh, did I mention we are having a heat wave in swampy DC?…..The good news is, I had an extra bag! We finally get everything set up with the NG and go to drive out of the garage. The final blow, the validation ticket we were given wasn’t working. Luckily they just let us out.

So, here is what I learned:

  • Always double check that you have an appointment with the right doctor
  • Give yourself at least an extra 30 min. when you have to drive a long ways
  • Always pack extra cloth for the baby and any other people who may be holding the baby (luckily this time she didn’t puke on either of us)
  • Pack at least 1…. probably 2…. extra NG bags
  • After all of this, go to lunch and have a nice cold sangria with your mom

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Lyra’s Second Swimming Lesson with Grandma

First Morning Away

First Morning Away

by Jaime S. G. ♥ 3 Comments

The thing I keep having to remind myself while Lyra is in the hospital is that I can’t take care of her if I don’t take care of myself. So, this morning I am going to my 6 week follow-up after giving birth. It means that I will miss rounds for the first time in the 21 days she has been in Children’s Hospital. My husband is there, but it is incredibly tough for me to not be in the room talking to the doctors. However, I know that it is very important to be checked out by the doctor post labor. I may not always be the best at taking care of myself. I can’t bring myself to stay home and go back to Muay Thai. I don’t have time to go to the gym and make rounds in the morning, and it is normally closed when I get home at night. Once I am in the hospital, I have found it impossible to leave her to go for a run/walk in the are. Plus, it is beyond hot and humid right now. So, the least I can do is go see my doctor.

So, my morning has been surreal.  I am watching last nights episode of So You Think You Can Dance, drinking coffee, and eating breakfast. I feel kind of like I did before I had Lyra, but with this anxiety bubbling just under the surface. Honestly, I am trying to just maintain my cool and not say “screw it” and head out to the hospital. I just keep reminding myself that this is what is best for my baby. Hopefully my husband calls soon with additional information from the doctors.

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Blowing my husband a kiss after feeding the baby

Truly Humbled

Truly Humbled

by Jaime S. G. ♥ 3 Comments

Todays post is more of that thank you. I am truly humbled by the amount of support we have received from friends, family, and even strangers. My family has been incredibly supportive, despite the fact that they can not always physically be here (the live on the other side of the country). Our friends, both locally and otherwise, have also been wonderful.  Two of our friends have been taking care of our dog (our first born) for over a week. We asked them to watch him for one night and they have taken care of him ever since. The words of encouragement and offers to help out with anything/everything have been greatly appreciated. My husband and I are not always the best at accepting (or asking for) help, but we have learned to embrace what has been offered.  Beyond the friends and family, I am humbled by those who I do not even know who have reached out and shared their stories and kind words. All of this reminds us that, although we are experiencing challenges we could have never prepared for, we are blessed. From the bottom of my heart, thank you all.

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Tyke and Lyra when we first brought her home

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Our first Father’s Day

One Step Forward, Two Steps Back

One Step Forward, Two Steps Back

by Jaime S. G. ♥ 3 Comments

It’s funny how you can go through a whole day feeling so positive, only to have everything turned upside down by a single number. When I came in this morning we found out that Lyra had lost a little bit of weight. The doctor increased the amount of milk she is supposed to take and we moved on with our day. Throughout the day she did great. She was taking more orally than she did yesterday and she didn’t have any trouble keeping down the extra volume pumped in via her NG tube. Her personality was also coming back today today. She spent a long period of time awake and checking out the world. We spent much of the day just looking at each other and making faces. She even did a little tummy time in her crib. With all of these positive indicators, I decided to stay until she was weighed again. I was really excited. We had done everything right today and she looked great.  And then the numbers came in….. 3.445 kg  (7 lb. 9.2 oz). It is a full oz less than she weighed yesterday.  She should be gaining an ounce per day, not losing it.

I just don’t understand. We are doing everything right. The surgery fixed the laryngomalacia. She is eating more AND keeping everything down. I am actually eating regular means and most of them have solid nutritional value, so my milk should be okay. I make sure to eat protein, fresh produce, and fats. Her reflux seems under control…. I just don’t get it. What are we doing wrong?  She has to do two things to be able to come home: 1) Consistently eat and keep her meals down, 2) GAIN WEIGHT. With the NG tube we have #1 taken care of. I don’t know how we will fix #2.  I don’t even want to go home tonight and see my apartment full of my baby’s things, only to know that I have no idea when she will be home again. I just want to be home and sit on my couch with my baby, husband, and my dog.