Wednesday, December 18, 2013

GI appt

So for the past week and a half, Jacob has pretty much stopped eating.  He has no appetite and when he tries to get food, he has horrible stomach pain.  So instead of eating he just stopped and has lost A LOT of weight.  He is down 16 lbs in about 2 months.  He also has been having lots of issues with his POTS.  And being dehydrated.  So I called in to GI and told them that he has pretty much stopped getting food and they wanted to see us ASAP.  The doctor that we were assigned to, never sees us.  Its always the nurse practitioner and they never know what to do with Jacob.  Every time we get an appt with them they always say that they dont know what to do and has to consult with the doctor.  But yet every time we try to see the doctor, they say she has no openings for months and months.  So when the nurse said we needed to be seen, I demanded that we see the actual doctor.  But this time I said I would see ANYONE!  Well luck has it that our GI is retiring this week and so it was easy to switch doctors.  We got in to see the new one and she was great!  I felt so good talking to her about Jacobs problems.  She agrees with me and neuro that his stomach issues are all part of the autonomic dysfunction that he has.  And that it probably will never get better.  We talked about what to do to get him to eat and so she prescribed us a med that should help him get an appetite.  She said it could take up to 4 weeks for it to work so hopefully it will work soon because today, he had NOTHING to eat until he went to bed.  I figure I can get some in him while hes sleeping.  But last night he woke up with major stomach pain and turned off his machine and unhooked himself haha.  Sometimes I dont like the fact that he can hook and unhook himself.  But other times it comes in handy, thats for sure.  She also gave us some meds that will help his stomach when it hurts.  Its like Tylenol but for stomach pain.  I was very happy with this appt.  Its not very often that I go into an appt with major issues and come out feeling good!  I feel like we have some what of a plan and that hopefully this will help him eat more.  Meanwhile our amazing speech therapist is going to try to help us do some things that will make sure that he does not lose the sensation to eat.  We need to stimulate his taste buds every once in a while.  While it will never be in the cards for him to eat again, we will never give up that hope!  So we want to try everything possible to get him to eat real food again and not have all of his nutrition through his gtube.

Wednesday, December 11, 2013

POTS

Jacob has a new diagnosis.  Its called Postural Orthostatic Tachycardial Syndrome.  Here is a little info about it:

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.
Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS.  Current thinking is that there are a number of mechanisms.  Some patients have peripheral denervation (neuropathic POTS); some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic POTS); and some individuals have PTOS dominated by features of deconditioning. 

So for Jacob it means that when he stands up, he gets super light headed and dizzy and will pass out.  And that is what we had been experiencing for the past month or so.  It is something that will forever plague him and make him uncomfortable.  Right now he cant really get off the couch without feeling dizzy.  So he pretty much just stays down laying down because thats about all he can do.  Plus being dehydrated all the time makes him dizzy and light headed.  So he is getting it from both ends.   This is a new diagnosis for us and we are not sure how it effects him completely yet so this is something we are trying to research and find out ways to treat it to make him feel comfortable.  

We did find one solution that helps him feel better.  Last week, his sats were low.  So I gave him oxygen and then got busy.  I totally forgot that he had it on and went like 3-4 hours with the oxygen on him.  When I finally figured out that he still had it on, I took it off and he said he felt so much better!  It was amazing how good he felt.  He was like a totally different kid.  He was hyper and had tons of energy again.  Of course that is always short lived because of the mito, but it was nice to see him so happy for once.  So of course seeing how good it made him feel I decided that he needs to be on it for a few hours every day.  And it has been great!  But because of this new change, his ped wants us to see a pulmonologist to make sure that this new oxygen thing isnt because of something in his lungs.  So pray that if it is, they find the answers and its something easy to deal with.  

November....the month of hospital visits

So Halloween kicked off our month of hospital visits!! And I just have to say, I am tired of it. We went in on Halloween to be admitted for some testing and to get some fluids.
The next week we went in because Jacob was having major dehydration symptoms. So we went to the ER and they admitted us for fluids and for watching us for other symptoms. He was impatient for about 2 days.
Then we went back the week after. He was having a lot of chest pain and his heart rate was crazy high and would skyrocket every time he would move. He also had some symptoms of dehydration and was just not feeling like himself. We went in and they wanted us to see a cardiologist while we were there. So he got admitted again and we had an echo and EKG and all kinds of stuff. They all came back fine so that's good. We don't have to worry about his heart for a while.
A few days before thanksgiving he started having dehydration symptoms again. It was starting to get very frustrating. His heart rate was going crazy again and I was talking to a friend and she said we should check his ketones. So I did, and they were fine. We rechecked them again a few days later and he actually had some in his urine!! It was pretty dark which means its in the high range. So I emailed our ped and he told me that if he didnt get better than we should head to the ER. Well we went through thanksgiving and then the next day he was just getting worse. So we headed back to the ER. And they gave him fluids and then sent us back home.
He felt good for a few days and then was back to where he was before. We tried this time to wait for longer than a week but it only took us a little over a week until we were back in the ER! He had dehydration again. I am getting a little irritated with this. I really wish we could figure out a solution to all of this. I am not liking that the ER nurses know us, and zelda, by name now. When we left this past time, the nurse said...if we don't see you before, have a good Christmas. I love that they know us and that they take such good care of us, but I wish we could just go 2 weeks without a hospital or ER visit!!
It has taken a toll on ALL of us! Poor Tyler has suffered in lots of ways. This poor kid has had to get thrown to the side while we deal with Jacob. His school work is suffering, his behavior is suffering, and he is super clingy which means that he is missing me for sure. Dad usually stays behind and takes care of Tyler but its not the same. I am so scared for December after seeing what November had in store for us. I LOVE the Christmas season and its so hard to do anything living in fear that Jacob is going to get sick and we will have to go back to the hospital. I know that we shouldn't live in that fear but its hard not to.
Every time we try to do something fun, its too much for Jacob and he ends up needing oxygen or he is exhausted and goes to sleep for hours or he just gets so sick he cant get off the couch. Tom and I are trying so hard to make this Christmas great for BOTH boys!! They both deserve it. But Tyler especially. Usually for Christmas we do a lot of baking and eating. But since Jacob can't eat anymore I feel so bad making ANYTHING! But then Tyler gets sad because he misses making and decorating cookies, and trains, and gingerbread houses. Sometimes we focus so much on the child that is "sick" and leave the siblings out of it. But at times they need just as much, if not more, attention because they get left out of so much. Hopefully this Christmas season will turn around for us all and we can enjoy the last 2 weeks of it!!

Tests test and more tests!

In October Jacob started having major stomach pain.  Every time he would eat, he would either throw it up, or have horrible pain.  We tried everything!  Every once in a while his stomach wouldnt hurt but that was pretty rare.  So I took it upon myself to start a blended diet for him.  I got a few recipes off the internet and started feeding him through his tube.  From the first feeding, he had NO pain!  I couldnt believe it!  He was getting food and was not in pain!  So I talked to our ped and he said that if Jacob isnt hurting then we might as well just start doing it for all meals (we just did it for breakfast for a few weeks).  Once we started doing it full time, I noticed a huge change in him.  He no longer had pain and it was great!  So we went to GI and she said that he needs more food so she has him on pediasure as well.  It is working great, so far.  He has pain still but its not while hes eating.

So because of the mito, every time Jacob has to be put under, it requires a hospitalization.  Well his GI doc wanted to do a few tests because of this new pain in his stomach and no longer being able to tolerate food.  We did a scope and biopsy and they both came back fine.  The scope showed some redness and irritation but she said that is normal because of the reflux.  The biopsy came back with some abnonrmal findings but she said that in her GI forums, they talk about this issue all the time and its nothing to worry about.  Its pretty normal.  Sooo no news there!  Of course!  But we were admitted for a few days because of this procedure and then he was really dehydrated so he needed fluids.  The bad thing about it all, was that he was admitted on halloween!  So he was not able to trick or treat and we got there too late in the day to partake in any of their halloween fun at the hospital.  So it was pretty lame.  But I got to stay home and Tom went and helped Jake at the hospital.  And Tyler and I went out and trick or treated for a few hours.  It was a lot of fun being able to spend some time with Tyler.