In this video I explain what it is, why Conner got one, NG Tube vs. G Tube, what it looks like, how it works, and my input on it. I hope you find it helpful!! I hope what ever you choose works for your kiddo! 🙂
Click the link below to be directed to my vlog
Such a sad week, Conner’s seizures have become worse. He now is having 3-5, 1-2 minutes grand mals 70-100 infantile spasms a day. He desaturated during his grand mals, and is now foaming at the mouth with these ones. I haven’t needed to give him his emergency med yet but I can tell they are getting worse. It takes him quite a while to breath normal again afterwards. Please keep us in your prayers. We need as much strength as ever right now. Thanks everyone for keeping up with him through his page http://www.facebook.com/HopeforConner  He is so strong..
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How to make your child’s doctor listen to you!
1st : VIDEO TAPE (If possible) what your child is doing.
For example, if you suspect any of the following, try your best to capture it on video.
Autistic features, seizure activity, pain, loss of coordination, or anything that is visual.
Bringing only your words to the table when the doctor asks, “What going on?” You might as well be walking into a courtroom without evidence! Keep a recording device on you at all times so it’s ready to go when you notice the change.
This is based on personal experience. When my son began having Infantile Spam’s. I brought him to his pediatrician, I told him what I was seeing. He said “Kids do funny things sometimes”. I knew he was wrong. So very wise advice was given to me by another TSC mom. “Video your son having his spasms” she said, and so I did. Doing this made the world of difference. We drove our son to the city and showed every doctor that came in to see him, the videos. As I thought, Conner was then admitted and diagnosed with Infantile Spasms. TRUST YOUR GUT!
2nd : JOURNAL your heart out. Keeping a log of your child’s activity is important. When the doctor asks you “When did that begin?” “How often?” “How long does it last?” Questions like these can be referred back to your journal which makes it a whole lot easier. Instead of just sitting there and saying “Oh I don’t remember…” It is amazing how much they appreciate your seriousness of your child’s care. They respect your efforts so they know that you will be expecting the same effort from them!
3rd : MEDICAL BINDER’s are very helpful. You can make your own or ask your resource center if there are programs that provide you one for free. Conner’s binder consists of Medication lists, dates of surgery, clinic notes, MRI and CT scan disks, and lots of other important information. I don’t know about you, but I hate being asked the same question a million times. My son’s binder has become my best friend. The first thing I do is hand them his binder. I hand it to his pediatrician, the ER nurses etc…All they have to do is make copies of what information they need to obtain.
4th : RESEARCH. I know the internet can be scary and some of you may disagree with me, but I have found researching my son’s symptoms, extremely helpful. The stories you find of other parents could possibly save your child’s life. When Conner was on ACTH (Steroid for Infantile Spasms) it began making his tumors in his heart grow! Thought the big city hospital never heard of such a thing. I printed out what I found and brought it to their attention. They quickly ordered an ECHO, long and behold, I was right. They immediately stopped his medication. Who knows what would have happened if they didn’t believe me.
I hope you have found this helpful. Please contact me if you are having difficulties communicating with your doctor. Remember that the doctor will only be as polite as you are to them. So only be stern when you feel the need to be. Again…trust your gut, you are usually right. Yes some of us may be looked at as “Paranoid”, but my motto is, ”It’s better to be safe than sorry!”
Here is a link to a video I took of Conner’s weird symptoms. I already knew they were Infantile Spasms, the beginning diagnosis was Multifocal seizures but they transformed into IS a month later.
https://www.facebook.com/video.php?v=457172697667480&set=vb.431526783565405&type=3&theater#
Hey there care givers! I just happened to come across one of my old videos and I received over 12,000 views! Unfortunately I do not remember how to log in to that account, but I am going to post the link below and I hope you all find it helpful! Please comment if you have any questions or would like to add something I left out. http://youtu.be/qFsoYoSyNv8
My husband and I spend a lot of time at the hospital with our son. At this very moment, we have been in the hospital for 6 days. Conner will be having a pacemaker put in tomorrow morning. Whether your child is sick or has special needs like our child, at some point you will be forced to temporarily move on in to the chaos.
It’s best to remember to stay positive. If you are instantly negative, time will pass much slower! The best way to (somewhat) enjoy your stay, is to devote time to making yourself at home. Here are a few tips to help the time pass for you and your child.
First, you will want to make sure you pack the essentials. If your child is still in diapers, don’t worry about packing too many. Usually hospitals provide, diapers, wipes, shampoo, lotion, and brushes. If your kid has sensory issues like Conner, make sure you pack everything they need to stay comfortable.
Second, it is also a good idea to contact the admissions office ahead of time to let the nurses know what they need; to be prepared for. In Conner’s case, he needs a special bed that is mesh (like a playpen) because of his seizures. If your child is G Tube fed, make sure you bring a couple of boxed formulas with you and your pump. Just incase it takes a while to get his/her supplies together.
Third, there is a program called “Child Life”. For those of you newbies, you will find that child life is a huge help when it comes to you and your childs comfort. Usually when children are admitted to the hospital they are required to receive an IV for quick medicine access or for other reasons. There are a few tricks that can help keep your child to stay calm during this process. Usually child life will already be aware of these tricks, but just in case, I’ll tell you them anyway (just because I’m awesome)!
STAY CALM
1.Numbing cream (LMX) applied 30 minutes prior to the poke. The cream will be taped down.
2.Sensory confusion with vibration. There is a device called “Buzzy” that is made for this specific purpose. Here is the link to learn more about it. http://buzzy4shots.com/ . At our current hospital, they don’t actually own one. Instead, Child life came to the rescue and found a vibrating back massager, which worked just as well! Usually you will want to hold the vibrating device right over the area that will be poked. Hold it there for about 5 minutes before poking. Remove the device just seconds before the needle is placed.
3.Distraction is a huge key. I have an iPad mini, but usually Child life already has one on hand. We play either cartoons or a calming apps. Here are just a few that Conner likes “Soothing” (by fisher price) “magma” (by sensory). Try to keep the staff that’s assisting, quiet and calm so your child doesn’t sense fear.
Sleep is ALWAYS an issue while staying in the hospital. Make sure you pack a sleeping mask (that’s comfortable to sleep with) and ask the nurse for ear plugs. These are MUST haves!!!
When you are bored, and trust me…you WILL be bored. Here are some ideas to keep you busy.
1.Start a new TV series on Netflix either you will need a tablet or laptop for this.
2.Decorate your child’s crib area with bright crafting paper (ask a nurse to help)
3.Get addicted to Pinterest! (Duh!)
4.Read a new book
5.Ask “Child life” or a nurse to show you where the board games are kept. (obviously you can only play a board game if your child is old enough or you have a partner staying with you)
6. Ask for some BUBBLES! These are really fun for adults…..I mean kids….
7.Check out a movie (Ask “Child life” for help)
8.If your child is still small enough. Ask the nurse if they have little push wagons. This is something we do with Conner every hospital stay and we all really enjoy it. Sometimes, if the sun is out, you can even go outside in a designated area! (Oh yeah, I forgot how much I love fresh air!)
9. Craft a huge card for all of your childs nurses to sign and take home.
Having a notebook is a huge life saver while in the hospital. I have found myself dumbfounded when the doctor is done speaking and they ask the famous question “So, do you have any questions for me?” and I sit there staring at the floor trying to remember the 50 questions I had floating around somewhere in my head. I bought a notebook at the gift shop the first time Conner was in the hospital. I organized my questions like this:
Example
(Q) How long after the procedure can he go home?
(A)
Leave a couple of spaces in between so you have enough room to write the answer before you jot down the next question. Doctors are usually impressed by so many questions. It makes them feel like they need to be on the ball more, and it helps them view us more seriously. (or so I have noticed)
I hope I have helped in some way! I hope that none of your children have to stay in the hospital, but obviously you are here for a reason, so I am sending *HUGS* to all you caretakers. STAY POSITIVE for yourself, and your child.
Here are a few pictures of my cutie bug in the hospital. Sometimes he is miserable but about 90% of the time, he is one happy camper!
Onepoopedmom 