Brayden's Hand, Daddy's Face

Brayden had a rough day yesterday, a fever and too many seizures. The seizures seemed to be non-stop. We gave him a dose of Diastat (the emergency rectal seizure medication). He pooped just a few minutes after giving it. Oh great, did it do any good? We called the Children's on-call neurologist, for fear that we may be heading into the ER. Thankfully Brayden settled down and slept well last night.

Then today...
After his morning bath, he found his favorite resting place, daddy's lap. I went into the kitchen to get breakfast ready. Jeremy called me back into the room, "You have to come see this."

Brayden has been working hard to explore with his hands, trying to find his mouth or feel things around him. His left hand is used more often and becoming more useful to him. His movements are not necessarily intentional or coordinated but slowly getting better. His occupational therapist started working with him on reaching. She also suggested that we name what Brayden is doing. We say, "Getting in your chair, in your bed, washing your face..." to let him know what is happening. This can facilitate his learning and understanding, especially since his vision is extremely impaired.

The video is Jeremy asking him to do something and he responds! His hand movements are intentional. We have tried this several times today with great success! Our little one is doing big things. We wait and pray for moments like these.

My Sorority

I attended college at Taylor University. Where is it you ask? Indiana. Take a right by a farm, left by another, pass several more and soon you will find the campus. Taylor University is a small college, no fraternities or sororities. Students were grouped pretty much by their dorm, sports or activities.

I never thought that later in life I would be a part of a sorority. I do not mean a traditional sorority with Greek letters, rush and parties. I never wanted or ever thought I would be a part of this sorority. It is a group of moms; some I have met, others just by email, moms that have special needs children.

I have been surprised and blessed by connecting with these women. There is an instant bond and understanding. A few weeks ago, I sent out an email with a desperate plea for information about a J-tube and some medication. At the time, I did not know anyone that had a J-tube. That email was forwarded and forwarded some more. Soon my inbox was filled with emails from families that have dealt with similar issues. They offered us advice, questions to ask, their experiences, Bible verses and even just an email “We have been there, we feel for you and we are praying for you.” I have enjoyed reading the emails about their children and looking at pictures.

It is not just emails that have been helpful. We have several friends that we have known for years, who have special needs children; all very different circumstances but a deepened friendship as a result.

The bond is something I have come to appreciate. My questions, concerns or fears are understood. Just in discussion about the fear of sending Brayden to school. Many moms have dropped off their child or sent them on that special bus off to school. My eyes well-up with tears even thinking about it. There is some humor in sharing our experiences with the not-so kindness of strangers, doctors or crazy hospital adventures. There is comfort and safety sharing these things with moms of special needs children. No explanations, apologies or misunderstanding, they know.

I felt it shelter to speak to you. – Emily Dickinson

This is my sorority. The rush has been painful. The connections are helpful. The bonds are priceless.

Hello. How are you?

How many times a week do we say hello to people and ask "how are you?" Do we really want to know how they are doing or have the time? Do we just ask out of courtesy?

How am I? I would say, “We are doing okay. Busy morning for Brayden, got the other two off to school. They had a wonderful time at school while I was running some errands. And I am loving this weather and ready for fall.” I am pretty sure those words came out of my mouth several times today.

Inside my head I am really thinking. Today has been rough. I have cried a couple of times and been ready to cry several times. I woke to find Brayden had vomited…again. It was so acidic that it literally burned his skin, the backs of his arms from elbow to shoulder and half of his back. I tried to bathe him but the sting of soap and water caused him to scream in pain. I could not get him to calm down. I finally took him out of the bath, wrapped him in a towel, sat on the floor and held him for about 20 minutes. Meanwhile Carter and Luke are not dressed for school and we should have already left the house. Luke is upset about being late. I am on the phone with the doctor and still trying to calm Brayden. His skin was bleeding and burning. The doctor called in a prescription for burn cream (thus my errand running). I decided to just leave the house with breakfast plates on the table, Brayden dirty sheets on the bed (I am still washing them everyday because of vomiting), pajamas on the floor and probably a dirty diaper next to them. If you know me, I like to have the house clean and tidy before I leave so walking out the door with the mess was hard. We finally made it to school. I was not sure that I even brushed my teeth. That was the first two hours of my day.

How am I? Grouchy and frustrated. Aren’t you glad you asked?

Questions? Only some answers.

Is Brayden’s new G-J tube working?
Brayden is getting his feedings through the J-tube portal. The food is going directly into his small intestine; which means he is not vomiting his food anymore. We have been able to get the correct amount of calories in him. Before his new tube we were only able to get in about 400-500 calories a day. The past couple of weeks he has been getting around 900-1000 calories day.

Is Brayden still vomiting?
Yes. The vomiting is no longer his food (because it is not in his stomach). It is horrible retching of stomach bile, which looks incredibly painful and burns his skins on contact. Once he starts, it takes him some time to calm down. We do not know why this is still happening.

Could it be because of seizures?
Possibly, but one of his seizure medications has been increased. The seizures have been doing better but not the vomiting.

Could it be severe reflux?
Possibly, he is taking Prevacid and Zantac. We have no idea if these medications are doing much good.

Anyone have any good insight or thoughts about any of this? Are there other reflux medications? Could a nissin help (Brayden does not have one)? Are there any questions we should be asking?
Brayden is scheduled to see the GI doctor at Children’s on Thursday, we want to be informed as possible and find a resolution to the vomiting. If the vomiting does not decrease, the plans for Brayden to eat orally or to have things put in his stomach becomes a harder goal to reach.

How is Brayden doing?
Other than the vomiting, Brayden is doing great. Last week his occupational therapist, Ms. Pam, came for his weekly appointment. He was thrilled to see her. Brayden has been working with her since he was about 3 months old. He grinned and pulled out all of his tricks that afternoon. She brought toys that make noise and things for him to bang on. He gave it his best effort. In his somewhat random/coordinated movements, he was able to bang on a little piano. If he hit a key, he squealed with excitement. The moment Ms. Pam walked out the door, Brayden slept for the rest of the afternoon. He was wiped out.

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Feel free to ask us questions, we do not mind answering.

PC

PC, or politically correct. How does that apply to Brayden? I was talking with a friend yesterday, whose daughter has special needs. She just went to a workshop for disability advocacy (I do not remember the official title). One of the topics was language and changing the language we use to describe disability or handicap.

To be honest, I have no idea what words to use. Sometimes we say Brayden is handicap, special needs, developmental delay, severe and multiple handicaps. It always depends on who we are talking to. I have no idea what is PC to describe my child. Frankly, I am not sure I care. I am aware that it could be an issue but for right now, I do not know what to think about it. Brayden’s conditions are not easy to describe and that random person in the store just wants a quick answer not his medical history. His medical history is barely understood by doctors.

Sometimes I need people to know that Brayden is handicap and he requires extra help. We have a child with special needs and we need special accommodations to make his world work for him.

Many words can be harmful but it seems more about the context in which they are used. “My son is handicap.” “Oh, look at that handicap!” Same word, different context.

Speaking of PC, I saw an interesting segment on TV this week. I would have never paid a bit of attention to until we had Brayden. A large shopping center here in Northern VA, is Tysons Corner; a mecca of shopping. The mall is trying to promote “green” living and created spaces for hybrid cars. Priveledged parking for those driving the “green” vehicles. Sounds like a great idea. The reason it made the news was not because of promoting “green” practices it was because of the location of these new parking spots. Several of the spots were clearly once handicap parking spaces. You can see where the painted handicap sign on the pavement was covered. Some of the spaces are closer to the handicap ramp to get up to the sidewalk and closer to the mall entrances. Interesting…I know that being “green” is great but over the handicap? Which is more PC?

I have probably offended the PC people of the world.

Talking

This morning Carter was talking with Brayden. I was in Brayden’s bathroom preparing all of his morning medications. I was listening.
Carter said, “Brayden what are you going to be when you grow up? I am going to be a zookeeper. You can be something like a zookeeper. Mommy, what do you think Brayden wants to be?”
I replied, “Well Carter, I am not sure what Brayden will be. He is probably going to spend a lot of his life with mommy and daddy. Since he cannot see very well, sit up, walk or talk. It might be hard for him to leave home.”
Carter looked at me with a face of disagreement. “Mommy, Brayden talks all of the time.”
I asked, “What do you mean?”
Carter went on to demonstrate several of Brayden’s noises, of which he can perfectly mimic. Sometimes so well that I have to ask who made the noise. “This noise is his happy noise…This one is when he wants you…He cries when he is sad and tired. Brayden knows how to talk.”

I said, “You are right buddy, he does have his own way of talking and he loves that you know that.”

Handicap on top of Handicap

Brayden is almost 17 months old. For the first twelve months of his life, I felt like we had it pretty easy with him. Brayden had no huge medical concerns. Of course he is dealing with seizures but we have come to accept them as part of his daily life and know when an adjustment in medication is needed. Since his first birthday, his handicaps seem to become greater.

As Brayden grows, his limitations and abilities become more apparent. I spoke with the neurologist for a long time last week. We have discovered that his basic function of controlling his body temperature is not working. Throughout the winter Brayden’s hands and feet would become red and extremely swollen, his body overcompensating to keep his extremities warm. Then come spring it has not happened once. Then we noticed this summer that Brayden does not sweat, not a drop of perspiration on his body.
His basic function of digestion is not functioning properly. He just had his G-tube was replaced with a G-J tube; his stomach was not digesting properly (G-tube) and needed a J-tube to go right in to his small intestine.

The decision for Brayden is get the G-J tube was some what difficult. I said to Jeremy, “How can Brayden be more handicap?” Having his food go into his small intestine instead of his stomach, that seems like a major set back. He is going to be hooked up a machine, the feeding pump, around 20 hours a day. What kind of life is that? There is some comfort in knowing that he is getting nutrition and not vomiting it all up, giving him the best growth opportunity.

It seems as though every couple of months we add another aliment to Brayden’s medical issues. As he gets older handicaps become more apparent, like his seizures. When a baby twitches no one seems to notice, when a toddler twitches it looks more dramatic. The past couple of months, he vomits after some seizures.

Each month passes and we are adding handicap on top of handicap: unable to hold head, sit, talk, walk, see, eat, etc. We do not expect much from a baby so we were not aware that Brayden maybe dealing with more and more. As he is becoming a toddler, issues are coming to the surface that may have been there all along but we are just learning to recognize them. As a baby he used the same baby gear his older brothers used. Brayden grows and he needs more handicap equipment: KidKart, bath chair, feeding pump, etc. We are grateful for the equipment because it makes life easier and more comfortable for Brayden but it makes things feel more handicap.

Handicap on top of handicap and we adjust.

Tolerate

*Update Sept 11
Brayden was able to tolerate his feeds so he was discharged. He is home and doing well. This is his new hardware.
Gastric - into his stomach
Jejunal - into his small intestine
Bal - checks the water balloon that helps hold it in from the inside
He will be on 20-22 hour continous feed.

Anyone that has experience, advice or comments about this please pass along. We have only come across a couple people whose child has had one. Post in the comments or email, thanks for your help
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Brayden had his G-tube removed and received a G-J tube. The hospital stay has been/will be about 6 days. Starting with IV fluids, scope to see his digestive system, placement of the J-tube and some feedings to make sure he can tolerate the feedings going into his small intestine.
I cannot even begin to describe G-J tube. It is much bigger than the mickey button he had for the G-tube. We have requested a full tutorial on the new tube. We want to know all about it.
Brayden is doing amazingly well and tolerating everything with flying colors. I mean that he is tolerating the hospital experience, the constant vital checks, nurses & doctors poking at him, not eating for a few days, sleeping in the hospital crib, noises of having a roomate, etc. He is tolerating it all, even making his happy noices and smiles this morning, despite what his body has gone through.
The next couple of days he will be watched to determine if he can tolerate the feeds.

A visit

Jeremy brought Carter and Luke to the hospital this evening. It was the first time they have been at the hospital with Brayden. Carter and Luke sometimes attend Brayden's doctor visits, they are home when the therapists come to work with Brayden but they have not been a part of Brayden's hospital adventures. You wonder what they will think of it all. Of course, they were completely fine. Carter and his little enquiring mind asked what each machine did and how it helped Brayden. Carter immediately stood up on the chair next to Brayden's bed and gently patted him, saying "Hi Buddy." Luke asked to be picked up and give Brayden a kiss, of which Brayden does not always enjoy but did not mind this time. The boys talked to Brayden, sang some songs, dined in the cafeteria, watched a little TV and did it in 15 minutes.

They miss him and want him to come home. Driving back to the house tonight, Luke sat in the back and whined every couple of minutes (it took us 75 minutes to get home), "I want Daddy and Brayden home." All I could say was, "Me too."

Bad Brain

The list of Brayden’s aliments and medications is long. I have all of them memorized. I regurgitate the information a couple times a week to doctors, insurance companies, on medical forms, etc. In emergency I have to pass on the information to the EMTs, ER nurses and doctors, admitting physicians, floor nurses, head nurses, medical students, on call doctors, residents, attending physician…the list goes on and on.

After our last hospital stay, I created a card that contained Brayden’s information. All of it is there, spelled correctly, proper diagnoses, medicines and doses written, ready for anyone to read. Then I could concentrate on Brayden, comforting him. It looks something like this:
On Sunday, we were in the ER at Children’s and in the process of being admitted. We handed the card to the doctors who were seemingly impressed that we had everything right there ready for them to read. We waited and waited in the ER for Brayden to be transferred to his room. The admitting physician came in to get Brayden’s medical history. He asked a few simple questions about Brayden’s development, I did not hand him the card. Then he asked the big question; “What is his diagnosis?” I never really know how to answer that question. Brayden has so many things and no real label that would describe him. I pulled out the information card I created. The doctor started reviewing it, asking a few questions about his medications. Then he reached the part listing the brain abnormalities. He read each word. Then tried to make a joke and said, “I used to work with a doctor that said this and I am going to say it now. BAD BRAIN. He has a bad brain.” He chuckled. Jeremy and I were a bit shell shocked that he said it. We know that Brayden has a bad brain but have never had someone say it with such little tact.

Bad brain but a good baby. Bad brain but a loved baby. Bad brain but my baby.

Again

Brayden is in the hospital again. Again, it is a waiting game. We are waiting for him to be scoped to see if there is any explanation as to why his stomach is not digesting. The vomiting has been happening the past several weeks again and again.
Again, we do not have any easy answers. Again, we have doctors, nurses, med students asking tons of questions.
Again, we wait.

Below are our emails leading up to this adventure.
Aug 31
Well, I thought this summer was going to be pretty smooth and uneventful…I was wrong. Brayden needed to shake things up.

He is 16 ½ months old. He is still struggling with seizures and that is just going to be part of his life. But the seizures are not why I am writing this update. It is about the vomiting, it has been all about the vomiting this summer. Since the hospital stay, the vomiting has decreased in frequency but it is still happening. Every morning he vomits. I have to wash his sheets, crib bumper, mattress and him. Thankfully he loves the bath. The past week he has been vomiting 2-3 times day. We continually adjust the amount of food he gets through the G-tube to see if we can find a happy place where there is no vomit…We have not found that place.

Just to give you an idea of his feedings (30 ml = 1 ounce)
8 p.m. – 7 a.m. continuous feed, 11 hours he is hooked up to the feeding pump getting 35 ml per hour
10:30 a.m., feeding pump - hooked up for 1 hour and getting 50-75 ml
2:00 p.m., feeding pump – hooked up for 1 hour and getting 50-75 ml
5:30 p.m., feeding pump – hooked up for 1 hour and getting 50-75 ml

If you add all of this up, he is not getting enough calories, several hundred less than he should be getting. He is really under weight for his age; did not make the growth curve for his last check up.

Brayden has been doing wonderful with spoon feeding. We are able to get about half of a small baby food jar in him (not on him). This helps with him getting additional nutrition. We try to spoon feed him 2x a day, some where between the tube feedings and vomiting (FYI when yogurt is vomited, it is the smellist thing ever, I do not wish that on anyone).

We talked with the doctor this past week and we are going to add a high calorie powder, DuoCal, to his feeds. This will help get a little more in him, not enough but more. Over the next couple of weeks we will be trying to figure out what to do and hoping to see the GI specialist at Children’s.

A new thing to add to Brayden’s list, no sweating. Brayden does not, in any way, perspire. This summer we discovered that in the heat, Brayden does not sweat/perspire. Any one with little ones knows that the summer time and car seats makes a child sweat. Their little backs are usually damp with perspiration from sitting in the car seat even if the air conditioning is cranked. Jeremy and I have been watching Brayden the past month to see what happens when Brayden gets hot. Well, he gets hot, red and hot to the touch. He gets a fever but no perspiring. It seems as though Brayden’s body does not know how to control his body temperature.

This answers why Brayden’s hands and feet would be red and swell during the cold weather. During the winter, Brayden’s hands and feet would be red and extremely swollen. It seems as though his body would overcompensate for his hands and feet being cold and pump and pump blood to them making them red and swollen. Since we have had warm weather it has not happened once.

We just started talking with the doctors about controlling his body temperature and have no idea where this may or may not lead. Just another thing to add to Brayden's ever growing list.

Ok, that was the heavy stuff. Now some good things about Brayden. He is developing in his own way. Smiles are coming more often. He is a people person. He likes for people to be around, especially his brothers. He is doing really well with therapies. He is relaxing his tight body and trying to discover that his has two sides and a bottom half. He little hands work hard to discover things around him and trying to make a somewhat coordinated effort. Brayden is easy going and seems to continually surprise us with things he can tolerate (vacations, parks, his brothers, etc.).

We are turning the corner into Fall and starting new routines and activities for everyone in the family. Please pray for us as we try to juggle school, activities, doctor visits and therapies. Please pray that we can find a solution to Brayden’s vomiting and body temperature issues.

Sept 5
This week has been a rough week in our house. Brayden has not been keeping much food down. All of his food is through his G-tube. When we try to spoon feed him, it seems to come up as well.
Basically Brayden's stomach does not seem to empty very fast as a result we can not give him much food. The quantity is about half of what he should be getting. Even if we change formulas and change things around it still would not be enough change because of how slow his stomach empties. The GI doctor wants Brayden to be hooked up to the feeding pump for 22 hours a day and getting a very slow drip hoping that we can get some food in him. If we cannot make this work in the next few days. Brayden will be admitted and possibly getting a J-tube. The J-tube goes directly into the intestine and bypasses the stomach completely. Even if Brayden gets the J-tube he would have to be hooked up for something like 18 hours per day to get enough food since it is not holding it like a stomach would.
For the next few days we are trying to get the vomiting under control and get enough calories in him. The GI doctor gave us a prescription for Reglan. Reglan is supposed to help with gastric emptying but is known to have neurological side effects. I told him that I did not like the drug and was against it. The doctor found that it is one of the last options. I am waiting to hear from the neurologist about the medication. I am not going to give it to him until I hear something about it.

I want to ask anyone and everyone about Reglan and a J-tube. If anyone knows anything about Reglan please email me. Also if anyone knows much about a J-tube please email me. I do not know anyone who has a J-tube.
It seems as though we will need to be making a decision in the next few days.


Sept 7
We have been laying low this weekend partly because of the weather and mostly because of Brayden. We have been trying the 22 hours continuous feed and Reglan (with the okay from the neurologist). Things are looking a little better but still vomiting. After at 3:00 a.m. giant vomit, bath, change of clothes and bedding, we decided we cannot delay the J-tube any longer. It seems that this is the best option for Brayden right now.
We are heading into Children's of Washington DC this afternoon and will probably be there at least a few days. We are not sure yet about the details.
Thank you to everyone to passed on our plea for help and information. We received tons of emails, of which I will respond to at some point. We received emails for doctors, therapists, parents with disabled children and people just offering support and prayers. Thank you for taking the time to send us all of the information. It was extremely helpful and helps me feel more informed about this next step.

My love hate relationship

I have a love hate relationship in my life. A relationship that started off as an always positive experience but the more and more time I spend with it, the more I cringe when I see it. I am talking about the washing machine.

I love the results of my washing machine. Put in the dirty clothes of my boys, with food, dirt, grass and whose knows what else on it, and out comes clean clothes showing no evidence of the previous mess.

I hate my washing machine. I tell the boys never to use the word hate but I am making an exception for myself. I am spending too much time with the washing machine. It is constantly running. You would think all of the clothes in the house would be smelling fresh and clean but that is not the case. If you lift the lid you would find Brayden's clothes or sheets or chair covers.

In Greek mythology there is a character, Midas, that has the ability to turn everything he touched into gold. If only that were the case here; anything that Brayden touches turns into dirty laundry. Yesterday, he went through three sets of sheets, three outfits, two baths, one seat cover, four towels and one blanket. The smell of the his dirty laundry is too much for my nose to handle so it is immediately placed in the washing machine. It was running non-stop yesterday.

The vomiting has to get under control. I feel terrible for Brayden and what his little body is going through. We will hopefully find a solution soon but for now I am turning my frustration towards the washing machine.

My love hate relationship.