Monday, August 31, 2009

Brayden is home and details

The most important detail is that Brayden is home. We finally pulled in the driveway at 7:00 p.m.

The medical details...
Brayden did have an endoscopy this morning. Thankfully he did much better with the anesthesia than he did a couple of days ago. The endoscopy did show a few things: a very small spot that looks like gastritis, lots of little red lines that are signs distress and several spots that look like bruising (I do not remember the technical name). The picture on the side is of the little bruises in Brayden's stomach. The lining of the stomach should be pretty smooth and a flesh color. It is possible that one of these bruises came to the surface and was the reason for the bloody vomits. One of the amazing things about how God created our body is that is can take pretty good care of itself; the stomach can quickly rejuvenate and heal. That is the hope for Brayden's stomach.

Since it seems as though Brayden's stomach does not work much, if at all, we are continuing to suction his stomach every four hours for a half an hour and we will continue that at home. The big equipment will be arriving tomorrow and we will have a crash course in how to use it properly. The doctors always leave you with those ominous warnings about using equipment improperly and causing damage so I will be meticulously handling the gastric suctioning until we get the hang of it. We may also be adding a couple more medications but not yet.

Prayer details...
Please pray that some how this gastric suctioning will provide some relief from the vomiting. Pray for Brayden's stomach to heal completely without further complications. And praise that he is home!

Sunday, August 30, 2009

How are we doing?

I have to be honest this has been probably one of the hardest hospital visits for Brayden. He has been miserable for a couple of days, although today he is acting more like himself and even granting us with some nice smiles. Since he rarely screams in pain we have very little clue as to how to console him. At moments it felt like the harder we tried, the harder he cried.

Yesterday afternoon the GI specialist came in to talk about Brayden. The doctors are still searching for a solid explanation of the vomiting. I was trying to explain to the doctor our concerns beyond just the medical and how this effects his quality of life. I could feel the tears welling up inside as I told him that we have learned to be content with a lot of things regarding Brayden, a lot of things that are hard but we have accepted them. However the vomiting is not something we are accepting, it is just too much. Just as my tears were about to come pouring out, I saw two little boys peak in the room, my Carter and Luke with their big smiles arrived to visit Brayden and it made me smile.

Brayden did have a great day today, he was much happier. His stomach is being suctioned every four hours for a half an hour. He did start his formula and still on a little bit of IV fluids. He did vomit twice today. The plan is for him to have an endoscopy tomorrow which he will be sedated for and it that looks okay then Brayden could be discharged late tomorrow afternoon.

A praises along the way:
  • Brayden was full of smiles, kicks and happy noises so whatever was causing him such pain the past couple of days seems to be gone.
  • Brayden has started his formula and has been on it for about 24 hours.
  • Brayden and daddy slept well last night at the hospital
  • We have had some wonderful nurses (which can make or break any hospital visit)
  • The GI specialists that Brayden just started to see (we have been at Children's prior) are great and we really like their ability to assess and make plans
  • Wonderful visitors came by
  • Carter and Luke seem to be having fun no matter where they are and we have had some great help with them

Some prayer

  • Still for the vomiting to go away completely or for some clear answers
  • For the endoscopy tomorrow and anesthesia
  • For us to come home!

One final thought from Charles Spurgeon, We have a great need for Christ and we have a great Christ for our needs. AMEN.

Saturday, August 29, 2009

Another day at the hospital

Brayden was doing a little better today. He was able to sleep but when awake was uncomfortable fussing, crying or screaming...just not himself yet. But holding his daddy's hand seems to help.

The GI specialist came and spoke with us about the MRI of Brayden's abdomen. It all looked good, which means that there are no organs in danger or signs of a chronic problem.

Starting last night Brayden's stomach (remember he is feed in to his intestine) is being suctioned through his G-tube port, the tube that goes into his stomach, of his G-J tube. It is being suctioned every four hours for half an hour. The GI doctor is coming to the conclusion that Brayden's stomach has no motility, meaning it moves nothing on down into the intestine, his stomach does not work. All of the stomach bile and saliva that is collected in his stomach has to go somewhere and he vomits. They are trying the stomach suction to see what kind of effect it may have on the vomiting.

The good thing is that we know the remainder of the path small intestine, large intestine and on out, seem to be working just fine since Brayden's bowel movements have never been a problem. The problem is with the stomach.

Brayden is scheduled for an endoscopy on Monday morning just to check his stomach. In the meantime Brayden is being started on his formula through his J-tube (intestine) to see how things go and they will continue to suction his stomach every four hours, which we may be doing at home.

Carter and Luke came for a visit today. A little snack in the cafeteria, time in the playroom, they always have fun. Jeremy has befriended the little lady in the cafeteria, who always provides him with a laugh. From having back to back visits to this hospital we are now starting to know the staff around us.

Friday, August 28, 2009

A long, long day

This is one tired boy.

His day started at 3:00 a.m. with him screaming in pain. It is now around 8:00 p.m. and he is still screaming in pain.

Brayden is a seriously tough guy. He rarely screams in pain despite all that he is put through on a regular basis. He may fuss and cry but screaming like this...I can count on one hand how many times he has screamed like this. Just two weeks ago while at the hospital, he handled everything with only a fuss when it was IV time.

We have no idea what is causing his pain. And now we are discussing/arguing with the doctor about giving him something more than just Tylenol. Thankfully the nurses are helping our cause.

Besides all of that, Brayden had an MRI today. Actually two MRIs, the brain and the abdomen. The brain MRI was about one hour and the abdomen about another hour. Thankfully they were able to get them done at the same time, total of 2.5 hours to include anesthesia. We have talked with neurologist here at the hospital (I have no idea who he is) about Brayden's medical history and the vomiting. He was able to review the MRI and did not see anything that would be directly causing the vomiting from the brain. We will be getting a copy and send it on to Brayden's neurologist at Children's for her review as well.

The MRI of the abdomen has not been reviewed with us yet. Guessing they will be by tomorrow morning with some information about it.

Brayden's pancreatic levels are still high. Brayden was still having some seizures and still freaking out the doctors/nurses and that is how we got the neurologist to speak directly with us. Thankfully the seizures have been under control for most of the day. Brayden had a little breathing difficulty after the anesthesia from the MRI and was put on oxygen for a bit but then recovered just fine.

And now we wait for something, not sure what that something is but hopefully it is something. We do know that he will be here until at least Monday.

This is one tired daddy.

Thursday, August 27, 2009

Back so soon?

Brayden is back in the hospital. He vomited blood this morning..a lot of blood. And that is a fast pass to the hospital. Brayden is back after only two weeks of being home since the last stay.

He just saw his GI specialist yesterday afternoon, things were going okay. Then when I walked in his room this looked like a crime scene. Bloody vomit covered his bed and him. About an hour after that, he vomited blood again (it is brownish blood not bright red).

Brayden is at Inova Fairfax. All that was done today was blood work and an IV. Of course that was a painful process. He is not a good stick and today was no exception. They tried hands, arms and feet. After one and half hours, maybe two, Brayden had his IV and blood work ready to go.

On top of that Brayden's seizures were bad today. Again it freaked out the nurses and doctors on the floor and they wanted him to be on oxygen and they put this strange protective padding around him in the crib, apparently protocol at this hospital for bad seizures. Thankfully after a few seizures they saw that he recovers fine and only has a moment of high heart rate and low pulse-ox but they made sure the oxygen is ready to go just in case.

As of this evening Brayden's blood work is showing signs of high pancreatic levels (lipase), not as high as last time. This time it was 2x what it should be. When we left the hospital about two weeks ago it was 4x what it should be and then at the blood work last week from the pediatrician was completely normal. Brayden could have pancreatitis still or yet again, I have no idea. He may be scheduled tomorrow for an endoscopy, MRI, x-ray, ultrasound...all of those have been mentioned but no game plan yet. It would not be all of those test probably just one or two.

Please pray for our little guy. This is just too much.

Tuesday, August 25, 2009

A little graduation

Brayden finished his time with the Early Intervention Program. He has graduated and is on to school!

His occupational and vision therapist have been a very big part of Brayden's life. The OT has been with him since he was 3 months old and vision since he was about 5-6 months old. They were the first people that Brayden trusted. He was not comfortable in his own skin let alone trust someone else but he trusted them to hold him, move him and play with him.

The first few months of Brayden's life we had an ever-growing list of things he couldn't, wouldn't, shouldn't do...a list that was overwhelming (and still is on some days). When his OT and Vision ladies came in to our lives that changed. They helped us think about what we wanted Brayden to do, set and reach goals. They taught us ways to play with him, opportunities to help him learn and ways for him to be part of our daily life.
They helped us with bath time, car seats, sitting at the dinner table, playing with his brothers, wheelchairs, toys (Five Below) and much more. They helped us see things in a new way...a box of beans is an excellent toy/therapy; a pink pencil bag is still one of Brayden's favorite things.

They will always have a special place in Brayden's heart (and mine).
Brayden starts school September 8th!

Sunday, August 23, 2009

The busy fair

It was a cool and extremely humid Saturday and we headed to a local fair. The rain that covered the area was sure to be a muddy mess at the fair. We did not want to take Brayden's KidKart on such an off-roading adventure for fear it may never recover so Brayden was in the double jogger stroller. I have held onto our double jogger from when Carter and Luke were little; we lived in a neighborhood with sidewalks, lots of little parks and a neighborhood pool. I would load Carter and Luke into the stroller and off we would go.

Brayden was in the jogger for the fair. He was in one seat and his food bag was in the other, both strapped down. He did alright in the jogger. He managed to dose off and when awake he seemed like he was trying assess his situation...what he was sitting in, what were all the noises, where we were...

One of the best thing about being a mom is seeing my boys have fun, absolutely filled with excitement and joy. Carter and Luke enjoy fairs (we hit up a lot of them). They run for the pony rides, petting animals, rides, cotton candy, snow cones...all just a blast for them.

Of course we drag Brayden along for most of these adventures without much of a clue if he likes it or not. We do think he enjoys to be outside.

I had a deep breath moment yesterday at the fair, watching a mom fuss over her children (in a "I love, love, love my children and everyone else should too" way). Her two little toddlers were all over the animals, so excited to be amongst the little goats. One of the children I would guess was Brayden's age, two years old. I actually felt myself get irritated with this mom, I know...not really mature but I have those moments.

It made me think of what the age of 2 really entails. Lots of exploring, getting into things, playing, busy, busy, busy; which makes for a busy mom. I have a busy toddler but in a completely different way...a way that I pray was better for him and our family. I felt like this mom at the fair had no idea what real busy was. I stood there and thought about how much I longed for Brayden to be in there with the animals right along side her children being a busy two year old, being excited for the fair.

Seeing Brayden in the jogger stroller, made me think about when Carter and Luke were toddlers sitting in that jogger. I had no idea how busy my life was going to be. I felt busy enough with two little boys. Then we had our third boy. We adjust.

Friday, August 21, 2009

The results are in

The blood work results came back today. All is looking good. Brayden's pancreatic levels (lipase) are well within normal range. The pancreatitis is no more!

The doctors are still unsure about what caused the pancreatitis and if it could be an ongoing problem. At least for now it is doing good!

Brayden's vomiting is still around and today in full force at 6 times by the afternoon.

That still leaves us with questions...What is causing the vomiting? Is there an answer?

We will see the GI specialist next week to discuss.

Thursday, August 20, 2009

Blood work

Brayden had a visit with the pediatrican today. Blood work was done and we should get results tomorrow. Brayden is doing pretty well. Vomiting still happening 3-4 times a day. Curious to see how his pancreatic levels (lipase) are doing.

Carter and Luke are the ones sick. Yesterday, Carter vomited on the side of the road, in the kitchen, bathroom floor and made it once to the toliet. Luke made it to the bucket beside his bed. Today they are both feeling better but I am sick of the vomit!

Oh, our house is non-stop action.

Monday, August 17, 2009

Behind the scenes of our hospital visit

Brayden is not an only child. He has two wonderful big brothers who are 6 and 4.

We do our best to not have them upset by the ever changing events surrounding Brayden's medical care. This summer has been busy for the big brothers, lots of camps and they have really enjoyed it. Carter, the oldest, was signed up for football camp but Luke was too young by 1/2 a year. The coaches for the camp saw Luke's enthusiasm for football and offered for him to join the camp too (Luke was so excited he smiled the entire week). Little did I know what a gift that would be, for the Tuesday of that week was when Brayden entered the hospital. What a wonderful blessing to have Carter and Luke in the football camp having a great time. Since we had no idea when Brayden was coming home we frantically tried every day to arrange help with them after camp. Carter and Luke were with some one different almost every afternoon but they got the royal treatment from pool time to yummy snacks (that mommy would never allow so they enjoyed it even more). Jeremy and I would talk to them every afternoon to check on them and they always seemed to be having a blast.

I would handle the day time at the hospital while Jeremy was off to appointments for work or just running home (we were an hour from the hospital) for a shower and to check on the dog. Everyone was back and forth some where.

Since Carter and Luke were staying with other people, Jeremy did the long night shifts with Brayden at the hospital, I was home alone for a few nights. Arriving home some nights way after my bedtime, I was walking into a dark, quiet, empty house. I was not scared, mostly lonely and desperately wanting everyone home. One afternoon last week there was an attempted break-in in our neighborhood. If you are not familiar with Waterford...well stuff like that just doesn't happen. I am by no means an alarmist, still felt safe coming home at night by myself.

Then come Friday morning, 4:45 a.m. It is dark outside, when you live out this far there are no street lights. The door chime went off, a chime that beeps twice when a door or window is opened in the house. I sat straight up in bed. Did I really hear the door chime? Then the house alarm went off and the dog was barking like a mad woman. I grabbed the phone and called 911. I was shaking so bad that I could barely push the numbers. I spoke with the dispatcher and was having problems hearing her over the alarm but explained to her I was home alone and wanted someone to come out. Then the alarm stopped and started up again. Then stopped again. I attempted to read the alarm panel to see what was happening and I realized that I did not have my glasses on...reading was not going to happen. But I realized, I did not set the alarm...I do not even remember how to set the alarm. I was still freaked out by the door chime and the dog barking like crazy. I sat and waited for the police to arrive. When they arrived they searched inside and out and nothing was found.

I think that it was a problem with the alarm system since I did not set the alarm. I was definitely not going back to sleep so I headed in to the hospital.

The chaos behind the scenes.

Sunday, August 16, 2009

Brayden is home and the news

Good news: Brayden is home. We are all under one roof and it is wonderful.
Not so good news: Brayden's pancreatic levels were extremely high this morning, higher than any other day. They sent us home because he was no longer on IV fluids, keeping his vomiting to a manageable amount and his has been taking his feeds. Anything they were doing at the hospital, we could do at home. Brayden has a new medication and new type of bag to attach to his food bag.

Good news: All other things look good except the pancreas, which rules out any major dangers (like the liver, kidneys and such).
Not so good news: The doctors are still not sure what is causing the pancreatitis. After consulting with the neurologist, it is possible the pancreatitis is caused by one of Brayden's seizure medications.

Good news: Seizure medications can be switched and there are several options.
Not so good news: Transitioning seizure medications is sometimes a difficult process and can cause more seizures until Brayden's body is acclimated to the new medication which can take weeks.

Good news: The doctors are looking for some possible answers.
Not so good news: Brayden will see his pediatrician, GI doctor and neurologist this week and next to discuss the pancreatitis and chronic vomiting. Blood work will be done to check Brayden's pancreatic levels. If they do not come down significantly then he may be scheduled for an endoscopy and/or MRI, both tests he is sedated, which we do not enjoy.

Good news: Brayden is seems to be feeling better and is happy to be home.
Not so good news: We still do not have answers to the pancreatitis or the chronic vomiting. It may be a long couple of weeks.

The best news: We love Brayden. We know he is completely in the Lord's hands, the entire situation is the Lord's sovereign plan. We may not understand (much of anything) but we rest in knowing He knows.

Home with a inside picnic and movie. It is the best to look into the family room and have all my boys (and a girl dog) together.

Saturday, August 15, 2009

Another Day

Brayden is doing better. His pancreas levels are still high, better than yesterday but extremely high. Thus a CT scan was done. The CT of his pancreas came back mostly normal, which is good because it is probably not chronic pancreatitis. Still no explain about why he has pancreatitis.

A neurologist, who works with Brayden's neurologist, came to consult with the GI doctor. They are looking into the pancreatitis being caused by one of Brayden's seizure medications. They are not really sure but there is not much else to explain it.

Brayden will be staying yet another night at the INOVA Fairfax, with Jeremy sleeping beside him in that oh so comfortable fold out chair. Then in the morning Brayden will be checked again for his pancreatic levels.

He has been such a trooper this week. He is such a hard stick and getting blood work or an IV started on him is hard and then keeping it is always a problem. His little chubby arms and feet have been poked and poked. He is still vomiting, not as often so that it better.

Brayden continues to be in a pretty good mood. Smiling a lot today.

Friday, August 14, 2009

Fun at the Hospital?

We thought Brayden would be coming home today.
That did not happen.

He was started on his formula via J-tube (into the intestine) this morning. Shortly after that, the vomiting came back in full force. Blood work was done and the pancreatic levels were up. When we arrived at the hospital was 813, then later down to 650 and today it was 1023. The normal range is 32-219. So the GI doctor would like for Brayden to stay and be watched. Still no idea what is causing the pancreatitis. The pancreatitis is assumed to be some of the cause of the severe vomiting (not all the vomiting but could be a contributor). The doctor ordered something called a Farrell Valve, an enteral gastric pressure relief system, to help relive pressure on Brayden's gut. It is basically an empty bag that is connected to Brayden J-tube. While he is being feed, the food goes in from his feed bag and air comes out through the Farrell bag. We have to wait and see what effect it could have. We also may be revisiting some medications that Brayden has tried in the past but this time in larger doses. Brayden has still been vomiting all day. His pancreatic level should be checked again tomorrow and decisions will be made from that point.

We still have many questions about the pancreatitis and what it means.

As many of you have experienced, the hospital is all about waiting. Thankfully the playroom and court yard are not too far from the room so Carter and Luke had some good playtime, riding bikes, tossing the ball around, painting pictures and more. Brayden has enjoyed getting out of the room, going for a ride and being outside. Jeremy caught a nap on a bench.

Thursday, August 13, 2009

Acute Pancreatitis it is...or is it Chronic?

Brayden's pancreatic levels are coming down. The GI doctor is treating him for acute pancreatitis. Brayden vomited blood in the wee hours of the morning and a few times, just stomach bile and saliva, throughout the day.

Brayden's gut has rested and seems to be doing better. He was quite happy most of the day and excited to have some visitors (Great Grandma, Great Grandpa, Aunt Janine, Aunt Heather and Youth Pastor Shull from our church). He was "talking", smiling and pleased to have people around. We even had a couple of opportunities to unhook all the monitors and stuff, for a ride around the floor in his wheel chair, a look at the playroom and a chance to sit outside in the children's courtyard.

Doing all of that to pass time until the doctor came in.

The GI doctor at Fairfax did speak with Brayden's GI doctor at Children's. They reviewed Brayden's lab work and tests from his stays at Children's and the pancreas was never tested. I don't think because of negligence on the doctor's part, it just never came up, he never had history of things that would bother the pancreas and other indicators of such a problem were not apparent (other than vomiting).

That is why a fresh pair of eyes helps. These doctors at Fairfax, that we have never met, thought to look at the pancreatic levels (amongst many other tests).

We have no idea if this was a problem in the past and the only way to know if it is a chronic problem is that each time these extreme vomiting episodes come up in the future then his pancreas will be looked at.

The plan for now, is to continue the IV fluids, start Brayden on Pedialyte via his J-tube, then a bit of Pedialyte and formula, to formula. If everything goes smoothly then home is the next step.

It looks like the pancreatitis, at least the acute version is being taken care of...the chronic version is yet to be determined and still a BIG question mark for the vomiting.
I cannot forget the mention that we have the best neighbors...we love the Olivers. They treated Carter and Luke to an afternoon at a pool, lunch, snacks, dinner, lots of lovin' and fun.

Care Goals

I think the care goals written on Brayden's hospital board says it all.

Brayden had an ultrasound yesterday to look at his pancreas, liver, kidneys, spleen and gall bladder. Then he was wheeled to another room to check the placement of his G-J tube. Everything looked good except his pancreas, it was enlarged. Which was no surprise because his blood work was showing pancreas levels were high. He started with levels at 813, moved down to 650 and needs to be close to 200.

Brayden has pancreatitis. The cause for this is unknown.

Right now Brayden is being treated for acute pancreatitis. The GI doctor is looking into whether it could be a chronic problem since the circumstances surrounding our reason for bringing him to the hospital, extreme vomiting, has been a reoccurring theme now for 4-5 times.

The treatment for acute pancreatitis is gut rest for a few days, to be on IV fluids only then introduce food. We know this routine because it is exactly what Brayden has done in the past: extreme vomiting, bloody vomit, hospital, gut rest for a couple of days with IV fluids, pedialyte then his formula, sent home, no vomiting for almost a week, vomiting starts back up, vomiting gets worse and worse, back at the hospital...We have been doing this for a year.

The GI doctor at Fairfax discussed, at length, Brayden's pattern and all of the tests, procedures, medications, we had tried this past year. For better or worse, he thought we had really covered our bases and that Brayden's GI doctor at Children's was doing the same thing he would. Good to hear but not, leaving us with no insight into the ongoing vomiting problem.

The GI doctor at Fairfax is speaking with GI doctor at Children's to discuss the pancreatitis and the history of his vomiting.

Where does that leave us?

Brayden is technically being treated for acute pancreatitis at the hospital. He will continue to have blood work to watch the pancreatic levels and possibly a CT to get a better look. In the meantime the GI doctor will be looking for something to explain the vomiting.

I was brutally honest with the doctor yesterday telling him that we cannot continue the same patten of vomiting and hospital stays. Brayden cannot vomit this much. His life cannot be like this, it is not a way to live and has to be looked at until an answer is found.

We will see what today brings.

On a much light note, Carter and Luke came in for a visit. They actually like hospitals...the cafeteria, playroom, video games, movies, all fun. Jeremy's parents stopped by and treated them to ice cream. Then a surprise visit from one of our pastors Ed Nalle. He talked with us, laughed with us and prayed with us. We have always appreciated his genuine care for Brayden and the family. It was a nice way to end the day.
One the way home last night, Carter and Luke were watching a movie in the car and I was watching the most amazing sunset. The sun was a burning orange/red. It was breathtaking. It was huge. All I could think was about how amazing God is to create such a thing. He really does know what He is doing.
From the highest of heights to the depths of the sea
Creation’s revealing Your majesty
From the colors of fall to the fragrance of spring
Every creature unique in the song that it sings
All exclaiming Indescribable, uncontainable,
You placed the stars in the sky and You know them by name.
You are amazing God
All powerful, untamable,
Awestruck we fall to our knees as we humbly proclaim
You are amazing God
For the song, click here.

Wednesday, August 12, 2009

Patient Brayden

Brayden is in the hospital.

His vomiting was really bad yesterday. He was vomiting blood. Mostly coffee grounds type blood but as the day progressed it was looking more and more fresh.

By the afternoon we knew he had to go in.

We asked to be sent to INOVA Fairfax instead of Children's because we have been waiting to see a new GI specialist who is out of Fairfax. Thinking we might be able to see him and have whatever tests may be needed, we headed to Fairfax.

Brayden was in the ER. They ran some blood work, x-rays, swabs, etc. Things were coming back normal. The ER doctor came in to tell us that if everything came back normal Brayden would be sent home.

I was getting ready to give a case for Brayden to stay in the hospital on IV fluids to give his gut a rest...we have been down this road a few times before and know the routine. However, it has always been through Children's and we were starting from scratch at Fairfax. I was starting to feel anxious about trying to convince the doctor that he had to stay. Not that we want him to stay at the hospital but sending him home would not be the best answer. So I was prepared to have that discussion.

The ER doctor came back in to the room, I toke and deep breath preparing to bring up a stay at the hospital and before I could she starting talking about Brayden's pancreas.

Now Brayden has had most of his body looked over (several times) but never the pancreas. I pretty sure my eyes widened with questions with the mention of his pancreas. Apparently Brayden's pancreas level (I do not yet know the proper terms) was 4x the amount it should be; normal is at 200 his was at 800.

Needless to say, Brayden was being admitted.

This random ER doctor, whom I was starting to question just in the short time we were there, thought to look at his pancreas. This could be a piece of the puzzle to Brayden's GI difficulties. It is my understanding that the pancreas is a problem but more of an indicator of another problem...what that is, who knows yet. It could be acute or chronic.

When I spoke to Jeremy this morning, Brayden vomited blood again. The plan is for him to have an ultrasound to look at the liver and pancreas, then possibly a CT to get a better picture. He will be on IV fluids for a couple of days until they figure out what to do.

Brayden slept ok last night but seemed to have several seizures. We know that his heart rate increases and O2 decreases but the staff at Fairfax was still extremely alarmed each time it happened and ready to pump him with oxygen. So that disrupted a bit of the night.

Please pray for clear results from the tests and a good direction to go. Also for Brayden's seizure activity to be at a minimum...we do not need to deal with that right now.

Tuesday, August 11, 2009

2nd opinion

Brayden is still vomiting.

It is not abnormal for him to vomit a dozen times a day.

Since his food goes into his intestine, the only thing he vomits is stomach juices. And this morning had a dash of blood in it. He wretches the worst kind of wretch every time.

We are going on one year of this and no real answers.

It feels abnormal to really question or second guess doctors. They are the experts, they have gone to school...they have tried many things for Brayden but no change. When is it time to look for a second opinion?

It is time.

This Friday we will seeing another GI specialist. There are not many around that handle children with G-J tubes. I have no idea what to expect from this doctor visit. I am typing out Brayden's medical history in regards to the G-I issues, especially since we have been to different places for tests. It is a lot when all of it is put together. Lots of scopes, tests,...the list is long.

Even if this doctor says we have covered our bases, then we will know that we have covered our bases. Or he could have fresh perspective and offer a bit of insight.

Something has to happen. Brayden cannot live with this. He cannot.

Please pray for the vomiting problems. We feel at our wits end. Pray for the doctors to have some wisdom and direction for Brayden.

Friday, August 7, 2009

The Water Park

Remember the not-so-nice conversation I had with someone regarding a water park? Well, I did stop by the water park and spoke with a manager. Before even speaking with him, I realized that the person I spoke with on the phone was way off base. The water park was great and easily a place I could bring Brayden. I have no idea why I got the response I did when talking to whomever on the phone. I explained my conversation and the manager, of course, was apologetic (over and over). Water under the bridge so...

A few days later we went.

Carter and Luke loved it! Brayden did too.

Brayden and I enjoyed the lazy river.

Tuesday, August 4, 2009

A Stroller?

Brayden technically has a wheelchair. It is called a KidKart. We have had it for about one year now. Brayden is incredibly comfortable in it. He can play in it (it has a tray to attach), he can ride in it (a little off roading for the boys soccer games or trips to fairs) and he can certainly fall asleep in it.

When we are out and about with his wheelchair three things typically happen:
1. No one notices it or cares
2. People think it is a stroller
3. People think it is a wheelchair

I am going to talk about the second, people think it is a stroller.

After having three boys, I certainly know what a stroller looks like. I researched strollers till I could not see straight. I still get stroller envy...I would love a bugaboo. When I had my first, those strollers were not really around but Peg Perego was the thing. Anyway, I digress...I am surprised that people think Brayden's KidKart looks like a stroller, it has some resemblance but have you ever seen a two year old sit completely still in a stroller?

Let me tell you about two conversations I had this past weekend.

Luke, Brayden and I were shopping at a pet store. I was pushing Brayden and Luke was pushing that adorable little kid's shopping cart. I load the cart down with a huge bag of dog food. Luke managed to push it through the store but I needed help getting it out to the car. The man that came to help me was extremely kind. As we were walking out of the store, he touched Brayden's wheelchair saying "I have a two year old and I must say that is the coolest stroller I have ever seen!" My response, "Thank you for thinking that it looks like a stroller but it really is a wheelchair." His response, "Well then that is a cool wheelchair!"

That was nice.

The following day, Jeremy treated us to a meal (and of course dessert) at the Cheesecake Factory for my birthday. We arrived shortly after church. Northern Virginia is usually an extremely busy place, people every where, always in a hurry, with more important things to do. That is unless it is Sunday morning. Our church service is over around 10:30 a.m. and we are usually the first ones banging on the door of any restaurant at 11:00 a.m. for lunch. We arrived at Cheesecake Factory, only a few people in the entire restaurant. Jeremy asked for a table and asked to make sure there was a place to park Brayden. The restaurant is not fond of strollers and will "kindly" take yours and park it close by so that it is not at the table. I am not sure if the hostess understood we had a wheelchair.

We proceeded to our table and were trying to get situated. I had Brayden's KidKart at an awkward angle because I was trying to hook up him up to his feeding pump. He was between our table and a table next to us, not in the way of servers or people walking by. The hostess was handing out the menus and as she handed one to me she said, in an extremely not-so-nice tone, "Um, Ma'am you are going to have to move your stroller so that it does not disturb other customers here to eat."

I just looked up and around.

Just look at the picture. The place was empty. I did not say anything and proceeded to take care of Brayden. I did not think she wanted to hear my response anyway and I sure was not going to let her put a damper on the only restaurant where I eat dessert! And I am pretty sure she did not know it was a wheelchair.

I just had to toss in this picture
of Luke with his Great-Grandma at the Cheesecake Factory, they look great in yellow.

Saturday, August 1, 2009

Brayden the Thrill Seeker

We ventured to the local fair last night with some family. Despite the ferocious thunderstorm that came rolling through in the afternoon we still made it out that evening, Brayden's Kidkart needed some ruffing up anyway (a little dirt and animal extras).

We thought we would let Brayden experience the fair this year rather than just tag along.

He got to pet a sheep.

And no trip to fair would be complete without a ride. Brayden and daddy braved the giant slide. Brayden did great all the way down until the last bump, it scared him and he was not too happy with us but quickly recovered.

It was fun. For all of the family action check the family blog.

Who knows maybe next year it will be a roller coaster (just kidding).