Monday, August 31, 2009
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.
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
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
- 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
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
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
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.
Tuesday, August 25, 2009
They will always have a special place in Brayden's heart (and mine).
Sunday, August 23, 2009
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 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
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
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
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
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
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.
Thursday, August 13, 2009
Wednesday, August 12, 2009
Tuesday, August 11, 2009
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
Tuesday, August 4, 2009
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
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.