Go for the jugular?!

Back at Georgetown University Hospital for the second try.

Brayden finally had his ACTH test today (click here for description ACTH). It required lots of blood work and an IV line. It was successful and painful. They sent us to the PICU (Pediatric Intensive Care Unit) for the nurse to get a line. She looked him over, said she would not even try a couple of places because he had already been poked too much in those areas.

First poke, nothing.

Second poke, she hit an artery. Blood gushing, a bit of panic but quickly got several tubes filled with blood for the loads of blood work needed. Because this was an artery, they can not do an IV. They had to go for another vein.
The nurse said that she was going to give it one more try and if she did not get it they could book the OR to set up a line in the jugular. Brayden had a line once in his jugular and it is not pretty.

Going in for the third poke…Ok, fingers crossed, toes crossed, lots of prayers, deep breath and she got a vein. A little wiggle and lots of tape, Brayden finally had a IV.
He was given the ACTH and we waited thirty minutes for another blood draw. All they needed was 2 mls (that is a very small amount). It took 20 minutes to get those 2 mls, his blood was not coming out. Then we waited some more. We needed to wait a total of 60 minutes from the start of the ACTH. One last blood draw, 2 mls in 15 minutes.
The nurse pulled out the IV, band-aid on. Brayden was dressed and ready to go before the paper work was done.

One day we will have to tell you about the nurses but I am not up for that today.

Now we wait for the lab work. Probably will hear something the beginning of next week.

Brayden is wiped out and done with the day. He did amazing and handles it all with grace (not sure you could say the same for mommy and daddy).

On the receiving end

This weekend I received a basket of encouragement. It is put together by the mom’s group at my church, Reston Bible. The basket is filled with goodies and thoughtful notes. It is such a treat and true gift of encouragement. Before going on, I have to say thank you everyone who contributed. It is appreciated, especially after a few rough days for Brayden.

To be honest, I never thought I would be on the receiving end of an encouragement basket. I never thought of myself needing encouragement or help the way that I really do. I was actually a social work major in college. I assumed that I would be out there helping people, working with them to encourage and find ways to improve their situations.

Now here I am, with social workers in my house helping me, applying for medical and respite care, asking friends for help and receiving encouragement baskets.

Encouragement is sometimes difficult to receive. Reading through the notes that people send, it stirs up emotions. I find myself teary eyed. Being on the receiving end of someone’s thoughfulness is a wonderful feeling. Some people are so gifted with words, the perfect present and some with their hands (one gift was a hand painted clip board to help keep track of appointments and such).
So why is encouragement hard to receive?
o It is hard when you find it difficult to reciprocate. I feel like I get so busy with my life that I forget that others need encouragement as well.
o It becomes clear that encouragement is so helpful for me and makes me wonder what times I passed by the thought or opportunity to be an encouragement for someone else.
o “Encouragement is the kind of expression that helps someone want to be a better Christian, even when life is rough.” -Dr. Larry Crab. Encouragement is there to help us push on and become better. Sometimes I just don’t want to when I am tired and grouchy.

Encouragement brings on some self reflection. What am I doing right? How can I do it better? Am I really trusting the Lord the way I need to? How can I do this for someone else?

Encouragement is a special treat that is sometimes taken for granted. I want everyone to know that each thing sent our way is saved and cherished. I save each email, letter and gift; pull them out sometimes just to read and reflect. I may not have the chance to respond to each note but know that it is an encouragement. I thank you for that.

For being on the receiving end of such things, I am grateful.

Do Not Enter

Do Not Enter means
Do Not Enter. Right?

Today was our first visit to Georgetown University Hospital. We have been to Fair Oaks, Fairfax, Loudoun and Children’s for Brayden (I think I am missing one but I have no idea). Anyway back to Georgetown. As many DC metro people know, there are many roads that lead to the city. What roads you choose can make or break your drive. We have never been to GU Hospital so we reviewed several options for the best route. We decided on Canal Rd. Sounds simple…if you have never been on Canal Rd.

Here is Wikipedia’s explanation of Canal Rd.
Canal Road has reversible lanes to handle rush-hour traffic. From Foxhall Road to Arizona Avenue, Canal Road has two lanes, both of which are reversible. From Arizona Avenue to Chain Bridge, Canal Road has three lanes, of which the center lane is reversible. During morning rush hour, which runs from 6:15 a.m. to 10:00 a.m., the reversible lanes change to the southbound (towards Washington) direction. During evening rush hour, which runs from 2:45 p.m. to 7:15 p.m., the reversible lanes change to the northbound direction. At all other times, the center lane of the three lane portion is used as two left turn lanes, one to turn onto Arizona Avenue and the other to turn onto the Chain Bridge.

Did you get that? Canal Rd is complex, we were ready for it. We knew what to expect on Canal Rd. Lots of Do Not Enter signs that you ignore because of the time of day. Double yellow lines that you can actually cross. And then more Do not Enter signs with several signs on top and bottom as to when the Do Not Enter applies. We knew this but we did not know about the side streets. We were not prepared when we came to the streets we needed to turn on. They had Do Not Enter signs but signs on top and bottom as to what time it applies. You cannot read the signs fast enough, in rush hour traffic, to know if you can turn. Well, we missed a few turns but finally made our way to the hospital. A bit stressed from all of the Do Not Enter but we were there.

Brayden met with the pediatric endocrinologist. Then he was set to do an ACTH test. This required him to be hooked up to an IV, receive the ACTH and draw blood work three times during the test. Sounds simple…if you have never tried to stick Brayden.

Brayden is a difficult stick. He has had countless blood tests and IVs. Only two times have people got him on the first stick. It usually takes three. We know this and always push for an expert to come in (head nurse, anesthesiologist, resident). This time they sent a team from the NICU. Everyone uses some sort of light to help see his veins. They came with a light. The light helped them find a vein…poke and the vein was gone. The NICU nurses were patient and would let him rest for a moment then look again, look some more…poke and the vein was gone. This went on for over an hour. Jeremy was holding onto Brayden trying desperately to comfort him and hold him steady for each stick. Finally the NICU team said that they could not try anymore and call a resident or a PICU team.

The nurses also said that we could stop and come back another day. We said stop. The pediatric endocrinologist came in about this time and was suggesting ways that we could have it done today. That moment Brayden vomited his awful vomit. He said stop.

After being there for almost three hours it was decided Brayden will be going back next week to try again. He will be placed in the PICU for the test and can be hydrated before the test to help.

Brayden should have come with a Do Not Enter sign today. Those needles found no place to enter no matter what route was taken. It would be nice if he came with signs and times that worked for him and the best possible route to take. The only clear sign we got from him today was DO NOT ENTER!

Scared

I figured this would be an appropriate blog for this time of year…Halloween. I actually enjoy being scared, well kind of. I watch scary movies but I prefer them to be on TV so I can turn the channel. I like the haunted houses, campfire stories and a good scary book that I can close when I want or flip ahead to check things out. I can feel my heart beating a little faster when I get scared.

The past week, I have been experiencing a new kind of scare. I am scared for Brayden. Since he was born, I have never really been scared. I have been concerned, anxious or worried but never really scared. All of those feelings pass, sometimes in just a moment. I do not feel scared everyday but lately I lay in bed with my thoughts, my heart beating faster…

I am not really sure why I have been feeling this way. It could be because we have yet to find a good answer for the vomiting. One doctor told us that we can do our best to control the vomiting but it might be something we have to live with. Live with?! I accept a lot of things about Brayden but I will not accept this, I cannot accept this. Maybe I am scared we have to.

Brayden is starting to understand things a little more each day. Some days I feel like he seems uncomfortable just being Brayden or unsure of what is happening to him or why things are a struggle. Does he have any idea that things are so hard for him? I don’t want him to know, I am scared for him to know.

I have been reading many blogs on and off the past year about families and their special needs children (sorry I was lurking, never quite knew what message to write). A couple of them have lost their children in the past few months, several have been in and out the hospital. That scares me. Our situations are very different but similar. Brayden is not in any danger but some days I just feel scared. Scared that I have no idea what lies ahead.

Last week he vomited blood a couple of times. The vomiting looks and sounds awful. I can do nothing to help him, just try to comfort him. Every morning, I hold my breath before I walk in to his room not knowing what I will find. I am scared about what I might find.

This scare is deep down, it maybe feelings about Brayden that I have not addressed yet. The past six months have been really hard and it seems as though each month brings another challenge for him.

I am his mom. I want to protect him. I am scared that I cannot.

My head tells me
Be strong and courageous…Do not be afraid or discouraged, for the Lord God, my God, is with you. He will not fail you or forsake you… 1 Chr 28:20
If only the rest of me will listen.

Something old, Something new

Old – the vomiting. It is getting old. I am tired of the vomiting. It seems to be doing more and more damage to his little body. The vomiting looks so violent and painful. The GI doctors have crossed everything off of their list; nothing new to look for, tests or medications to try.

New – cortisol. Last week Brayden had blood work done to check his cortisol. It came back abnormal. What new information does this bring? The test looks for the cortisol levels in the blood, looking for potential problems with the pituitary gland. Just above the pituitary gland is the hypothalamus. The hypothalamus sends signals to the pituitary gland. Over the summer we have started to realize that Brayden’s hypothalamus may not be functioning properly because of his difficulty regulating his body temperature and now his gastric refluxes. The idea is that Brayden’s brain is not sending the proper hormones to regulate his body, some of the results being vomiting and extreme acidity in his stomach.

Our pediatrician talked with a pediatric endocrinologist at Georgetown Hospital, one place we have not been to yet, to review this new finding about his cortisol levels. Brayden is scheduled for an evaluation and an ACTH test for this Thursday, Oct 23.

Same old problem, hopefully a new answer.

18 months...almost

Carter, Luke, Brayden and I left the house this morning a few minutes after 7:00. We headed to Brayden's pediatrician for a blood test that had to been done first thing in the morning and, while we were there, his 18 month check up. We try to make the appointments a one stop shop, no need to have two.

Here are his current stats for 18 months old (I did not pad them the way Jeremy did, oops I mean, some people do for college football):
Height – 32 ¾ inches, in the 50%, he has always been long but getting longer
Weight – 23 lbs. in the 10%, hooray! He is finally back on the growth curve; he has not been on the curve since he was 6 months old.
Head – 16.5 inches, not on the growth curve, never been on the curve but it is growing.
He is really growing! It is amazing what can happen when he is finally keeping food in and getting good nutrition through the J-tube. He just feels sturdier.

The vomiting is still an issue. He is on 4 medications (not including his seizure meds) to help but it is not eliminating the problem. The past couple of days he has vomited 2x a day. It does damage his skin with a very sensitive rash and the vomiting sometimes contains blood because of the damage it is doing to the inside. The pediatrician (who is amazing) is in communication with Brayden’s GI doctor and neurologist and is talking to a neuro-psychiatrist (who knew there was such a thing). They are discussing other options. Brayden had some blood work today for cortisol, to check his pituitary gland. We are also talking about another medication that could stop the brain from sending these strong signals to vomit, something similar to the Zofran that he is currently on.

After being there 1 ½ hours, we strolled out. Carter and Luke got a surprise flu mist, which they both handled just fine. The nurses (who are amazing too) kept them occupied in another room with stickers, highlighters and a pad of paper.


I attempted to take some pictures but after his long day he was not feeling a Kodak moment. These are the reactions I got…

He will officially be 18 months old October 17th.

Kids Say the Darnedest Things

Remember the Art Linkletter show and later hosted by Bill Cosby, “Kids Say the Darnedest Things.” The host would ask the little children big questions, trying to get their perspective on grown up type things. The children would be asked about current events, marriage, people, pop culture, and more. The children would give their insight. It was always amusing and humorous to hear their thoughts and how they process the world around them.

I have been asked several times lately how Carter and Luke handle Brayden’s circumstances. I am not always sure how much they understand or how much we should explain to them. They love him and treat him like their brother that needs special help. They know all about the feeding tubes, seizures and can recognize them, the vomiting, mommy doing laundry because of the vomiting, the KidKart, they know all the therapists by name and most doctors.

Have are a few glimpses of the way their little minds are trying to understand:

Carter (at the time was 5 years old) and his friend were in the house playing. The little boy asked Carter, “How old is your brother?” Carter said, “He is one.” The little boy replied, “My cousin is one and he can walk.” Carter casually said, “He isn’t walking ‘cause he is missing a bone inside his head.” The little boy exclaimed with excitement, as if they discovered a dinosaur bone, “Really!?” Carter said, “Yep!” And they were off the play.

Luke (our 3 year old) has always been curious about Brayden’s eating habits. Probably to detract attention from his bad eating (he prefers to make the dinner, rather than eat). When Brayden came home after getting his first feeding tube, Luke was all about it. He immediately remembered it was called a Mic-Key button because at the time he liked watching Mickey Mouse. Now that Brayden has the G-J tube, Luke remembers the J-tube because J is for Jenkins. Just last week a friend was passing us in the halls of Luke’s preschool and asked how Brayden was doing. Luke answered before I could, “Brayden has a J-tube now, not a Mickey button.” The person just smiled and nodded not sure what to make of Luke’s assessment. Luke knew more medical terms than this adult.

Carter loves Brayden and seems as thought the two of them have their own conversations. Of course Brayden is so agreeable and likes the same things Carter likes (according to Carter). Carter just calls him “my buddy.” Today in the car, "Buddy this is your favorite song, just like me."

Luke is just starting to process everything going on. Carter understands most of the circumstances. Luke says things in passing, not really to anyone in particular. Last week, he passed Brayden and announced, “Brayden, you not walk yet but Brookie (Brooklyn, the boys’ cousin who is the same age as Brayden) can walk.”

Carter is protective of both his little brothers. When it comes to Brayden, Carter is quick to tell someone to be gentle or watch out for his feeding tube. Carter’s explanation of the feeding is interesting, especially when explained to his friends… “He has a thing that puts the stuff right into his belly. You have to be careful when he is eating.” The children look so perplexed by Carter’s explanation.

Luke’s preschool has been having Safety week, with visits from the local fire department and EMTs. We were pulling away from school and Luke declared, “Ambulances came to school today not the house this time!” We have only had to call 911 two times, both happened this summer.

The first time we call 911, Carter was listening as we discussed the plan to call for an ambulance. As we hung up the phone he came running into the room and was very upset and agitated. “Mommy, you cannot call 911 unless the house is burning. The house is not burning!”

Kids say the darnedest things.

Definition of Chaos

Chaos - A condition or place of great disorder or confusion.

I think today fit the definition of chaos.

Today is my oldest son's birthday. Carter turned 6 today and selected waffles for his birthday breakfast. I made the boys breakfast and felt like the morning was running smoothly. I walked into Brayden's room and found that he had vomited blood. The last time he did this, he ended up with all inclusive stay at the Children's Hospital for several days. Immediately, the house exploded with energy and me shouting commands, trying to get things in order.

"Carter, bring me the phone." - I called Jeremy and then called a couple of doctors, waited to hear back from them.

"Carter and Luke get dressed." - I called a friend to pick up Luke to transport him to preschool. After I hung up the phone, a neighbor called (completely unaware of what was happening). She asked if Carter could come over for the morning to play with her son, a huge answer to prayer. Both the boys were taken care of this morning.

"Boys be quiet." - The phone rang, it was the doctor. I held my breath and answered the phone. Sigh of relief; Brayden did not have to go to the hospital. He did need to see the doctor for some tests.

"Boys, grab your things. It is time to go." - Carter headed to the neighbor, Luke was picked up and Brayden was ready to head to the doctor's office.

My mind was in a state of chaos. I was trying to make sure the boys had everything they needed for the day and into the evening, just in case. I was trying to figure out what plan of action was best for Brayden. I did not know if I should give Brayden his medications, or feed him, or what to feed him. So many things to keep straight in that moment and still think ahead. I would walk into a room and forget why I was even in there.

We all left the house. Beds were not made, dirty dishes in the sink (and they are still there),...House in chaos.

I like order, chaos is not my friend.

Brayden and I finally arrived at the doctor's office. He had vomited a bit too much the past couple of days and caused some bleeding. It heals quickly and the remainder of the day he was doing fine. We are adding more medications and adjusting his feedings. After months of this, the only answer still seems to be that his vomiting issues are not a GI problem but more of a neurological issue, his basic functions including digestion are not working properly. Brayden has been tested, scoped and medicated with no real evidence to point to the root of the problem. Days of chaos may still be ahead, we pray that they will not happen but I am not holding my breath.

I would prefer our days to be the definition of order not chaos but Brayden likes to keep us on our toes.

Surrender

I have to say, I have held off writing a new blog entry because the previous post is still so special. Anyway, here we go…

This week has brought heavy conversations and new questions.
My grandfather, Grampy as we call him, has been fighting the effects of Parkinson’s disease for sometime now. The last several months have really taken a toll on his body and mind. My grandmother, Grammy, is exhausted from driving back and forth to the nursing home, making medical decisions and being there for him. She and I have shared many a similar conversations about Grampy and Brayden. They have similar types of therapies and dependence on other people. Their minds are desperately trying to communicate with their bodies but the brain is not always making the connections.

Grammy asked me this week, “What do you do when you feel so discouraged?” At first I did not know how to answer that question. I really am a the-glass-is-half-full person. After some thought, I realized that it is all about surrendering. I do not mean giving in to the disease or problems. I mean surrendering to the fact that we do not have control over the situations. It is complete and utter dependence on God. I have no control over what happened to Brayden or how his brain may develop. Of course we do all we can to give him the best possible chance. But the situation is out of our control. Jeremy and I have handed him over to the Lord. It is quite freeing and comforting knowing that there is a grand design and plan for Brayden. To be perfectly honest, I may not like the plan (hospital stays, seizures, vomiting, procedures…) but it is out of my hands. I am still trusting the plan.

We try to make the best decisions possible for Brayden and pray that we are lead to make the right decision. Just a few weeks ago we were wrestling with the idea that Brayden may need to get a J-tube. Still on the way to the hospital, I was not sure about it. I felt like I need some confirmation that it was the right decision. As we were driving to the hospital, Brayden vomited all of his food. Not something that I wanted him to do but a clear sign that he needed the J-tube.

Surrender is hard. It first glance it seems as though you are waving the white flag and giving in. The truth is surrender shows us our humanity and that we cannot do everything. Brayden’s brain abnormalities happened without explanation, even from the best doctors. Parkinson’s disease happens without explanation. We are fighting this seemingly gigantic uphill battle, pushing Brayden up the mountain. Grammy is fighting a downhill battle with Grampy that is rolling down faster and faster. Different sides of the mountain, fighting the effects of brain problems. It is not our strength that will help us, is it strength from God.

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear…The Lord Almighty is with us. Psalm 46:1-2, 7

Back to the question, “What do I do when I am discouraged?” I surrender.


A link to the hymn "I surrender All" performed by a former Backstreet Boy for fun!