Long Week

Talk about 1 long week.  I don't know where I am finding time to write on this blog, I guess its a well needed break from studying or binky holding.

First off, in addition to Cerebellar atrophy Jett has some serious pain issues.  We think everything is related to his digestion system, but who knows.  Ever since he was born, he spends about 90% of his time awake in pain.  The pain is very apparent to us but apparently not to doctors.  He spends most of his days tensing up his stomach muscles, arching his back, trying to fart, and screaming his lungs out.  This to me seems maybe like he is having a problem with his GI tract.

When we were in the hospital last month we brought up this issue.  They automatically diagnosed him with Sandifer's syndrome (severe acid reflux) and started treating him for it.  They never ran any actual tests to verify sandifer's, and they definitely didn't look into any other possibilities of where the pain is coming from.  The drugs he was on for the reflux never seemed to help very much, so we kept insisting that it wasn't reflux but something else.  Doctors always assured us that it takes a couple weeks for the drugs to work, and it is definitely Sandifer's. Well it has been 1 month since his extended visit to PCMC and he seems to be in more pain than ever.  Tennille and I have been experimenting with different things that we can do to eliminate the pain (switching from breast milk to soy formula, then to alimentum), but we have been trying to get our pediatrician to get us into the GI doc.  She keeps insisting that it is reflux and we don't need to see a GI doc.  Finally, that wasn't an acceptable answer.  Tennille yelled at her, then the doc finally gave in and made us an appt for next week.  In addition to our 8 other doctors appt's next week, it will make for another long week; but hopefully we can start getting some answers.

Ok, onto our long week.  I was scheduled to have 5 tests this week in school, so Tennille thought she would be nice and go up to Logan for the week.  That way I'd have an opportunity to study and hopefully do ok on my tests.  

Problem 1- On Tuesday, Tennille took Jett off his feeding tube for the drive up to Logan.  When she arrived and put him back on his feeds, she was terrified to find out that the tube was clogged.  Oh well, no big deal.  She figured she could go to logan regional and get it unclogged and everything would be ok.  NOPE  Apparently Logan Regional doesn't employ any REAL doctors.  Not one doc could place an NJ (goes into the investing) tube, and even more frustrating no one was willing to place an NG (only goes to the stomach) tube in a baby.  After 6 hours of piddling around they told her that she would need to drive to Primary children's in SLC to get it unclogged.  I met her at the hospital around midnight and we spent the next couple hours up there.

Problem 2- When they placed the new tube on tuesday they couldn't get it to cooperate and they left it in the stomach (rather than the small intestine), and told us to observe him to see if he was refluxing/aspirating with the tube where it was.  After a day of watching we determined he was refluxing, so Thursday night we had to go back to PCMC to get the tube pushed further into his gut.  So we spent about another 4 hours up there

Problem 3- Friday rolls around, Tennille comes to pick me up from school.  As I get in the car she says that we are going over to PCMC because Jett had pulled his feeding tube out.  So we spent another 3 hours there.

Problem 4- Sunday: After holding Jett's binky in for about 5 hours straight we needed a break.  We put him down for about 3 minutes to go to the bathroom.  I heard him crying so I went in to hold his binky in his mouth again.  When i got there, Jett had a kung fu grip on his feeding tube and it was pulled about half way out of his nose.  Tennille and my mom headed up to PCMC this time and spent another couple of hours there, getting another feeding tube

Problem 5- He has no suction because of his cleft palate, and the only thing that soothes his tummy pain is his binky… so, someone is physically holding in his binky for about 12-14 hours a day.  Is this all parenthood is, Binky holders???

Problem 6- remember I mentioned that I had 5 tests this week.  If I'm lucky I may have averaged a C on all of my tests.  I haven't had anything below a 93% on anything since I decided to be a dentist, so obviously I'm a little bit pissed about this!  At this point I'm honestly not sure if I can do school right now. Jett is sooooo time consuming, that the second I walk in the door there is a 0% chance to get ANY studying done.  I think I'll see what this weeks doctors appt's bring, but if there are no answers I may have to take some time off of school to get things sorted out

Problem 7- I bitch and moan a whole lot, hence why I'm writing this blog.  Unfortunatley, it makes me feel better.  so even though its a problem, too bad!

I'd show some pictures of Jett, but he looks just the same as he did when he was about 3 weeks old.  he is now 12 weeks and has only gained about 1.5 pounds total

Sorry for my rants

A little story about a boy named Jett

As I'm sitting here in the middle of the night typing one handed because little Jett man is sleeping in my other hand, i figured i would copy and paste a couple of thoughts i have recorded over the last few weeks.
These are just thoughts I jotted down, so bare with the bad spelling/grammar.

The last little bit has been quite the rollercoaster ride, actually that is not a good comparison because there hasn’t been many ups, only downs.  1/19 we took Jett to the dr. because of his hysterical back arching.  She prescribed some Zantac because he “probably” has acid reflux.  Well, On 1/20 we took Jett to the instacare because Tennille didn’t feel that he was breathing really good, and that he was getting a cold.  They referred us up to Primary Childrens because his O2 saturation level was in the mid 80’s and he wanted them to observe Jett.  Once we got checked in to the ER they started drawing blood, placing IV’s, and testing Jett for all sorts of problems.  They eventually told us we’d be here for at least the night, so they were admitting us and going to move us up stairs.  Before we went up we met the attending Dr. for the infant unit, Dr. Brinton.  We talked with her about Jett and I voiced my concerns about his arching in addition to his cold symptoms.  I told her that his eyes don’t track, he is very colicky and in pain frequently and he is also very jittery, and I was concerned about cerebral palsy.  She looked him over and told me that CP wasn’t the problem because he is able to relax.  Well we moved up stairs and the nurses took over and told us to go home and get some rest.  When we showed up  the next morning there were 6-8 doctors/nurses around his bed for rounds.  It was kind of like arriving at your house and the fire trucks and ambulances are out front… we thought there was a major problem due to all the people there.  I guess that night was a really rough night and the nurses were worried about his arching, so they called in some additional dr’s.  Those dr’s decided that he was suffering from severe acid reflux and they referred to it as Sandifers syndrome, they also mentioned that the neurology team would like to come check him out as well.  They ordered a PH probe for the next day to decide if it really was reflux or not.  Right before he was supposed to start the PH probe they decided that his symptoms were in line enough that they were convinced it was reflux and the PH probe was not necessary.  They started treating him with double Zantac to address the problem.  At that point, I was pretty worried about some neuro problems so I started requesting an EEG to see his brain activity.  They kept insisting that he has Sandifer’s  and no further tests were necessary.  Unfortunately I was concurrently learning about seizure disorders as well as neuroanatomy, so I felt that with my little knowledge there was reason to at least eliminate the possibility of any neuro problems, but the doctors continued to refuse.

            After the PH probe was cancelled, they decided that they wanted to do a swallow study to determine if he was aspirating (in addition to his other problems, he had lost weight in the last week).  They decided (still can’t convince me that I saw aspirations during the study) that he aspirates when he eats regular breast milk as well as thickened milk.  This, coupled with reflux made them decide to place an NJ tube (feeding tube that is inserted in the nose, passes through the stomach, and the 1^st and 2^nd parts of the small intestine and ends up in the Jejunum).  Initially we were rather ok with this because of his recent weight loss, hopefully a couple days of a feeding tube would get him right back to where he needed to be, right???

            A few days after he was started on Zantac, it was not helping with his back arching and obvious pain that he was experiencing, so they decided to finally call In the neurology team.  Neuro suggested that we take an MRI and the genetics team also wanted to get a spinal tap to check his CSF.  A few hours later Tennille was signing our sweet little boys life away for the anesthesia (he needed to be perfectly still for the MRI, so the had to drug him), luckily they were able to do the spinal tap after he was out, so he didn’t have to feel the pain associated with that.  They did the MRI and took Jett back to his room.  The Dr. earlier in the day told us that we would get our results shortly after the MRI, so we waited there for hours before we were finally told that the neuroradiologist wouldn’t be in until the next evening. What??? Our sons fate is on the line, and we have to wait for 24 hours… do they know what the imagination can do in 24 hours.  The sweet attending Dr, Dr. Brinton, knew how we were feeling so she wanted to talk to us before we left for the night.  I think she was trying to do the right thing, but she told us, “All I can say is that the MRI is abnormal.  Jett’s cerebellum is not the correct size.  But I can’t tell you more than that because I’m not a radiologist”

            You can imagine the feelings that Tennille and I were going through for the next day, it wasn’t much fun.  For some reason though, I knew all along that there was something wrong and the news of the MRI didn’t shock me.  The things Jett does are not normal, and I had lost a lot of sleep the past couple weeks worrying about what could be wrong.  The time had finally come, our team of Dr’s assembled, and came to bring the news and answer questions.  They told us that Jett’s cerebellum is much smaller than normal. The cerebellum controls fine motor movement, balance, muscle tone, and many other things.  They don’t know if Jett will ever walk.  They don’t know if his cognitive functions will be affected.  He also has a smaller than normal brain stem.  The brain stem controls many things but most importantly, your respiration and heart.  They said right now his brainstem seems to be doing everything that it is supposed to do, and they hope that it continues to.  They also said that his optic nerve is in place and it appears that everything neurologically was connected, but they had made an appointment with the eye doctor because they don’t know if he can see.  Tennille bluntly choked out the question Does this affect his life expectancy? And they answered that they didn’t know!

            Wow… that’s kind of hard to stomach.  A week ago we thought we had a perfect baby boy that had a cleft lip/palate, now we don’t know if he will ever walk, see, or even grow up.   We went home that night and cried more than I ever thought possible as we wondered what would become of our baby boy.

            The next couple days in the hospital were pretty lifeless.  I remember that Jett lost weight even though he was on the feeding tube. Lots of doctors, and empty promises of sending us home.  They finally ordered the EEG that I had requested early on, but ended up sending us home a few days later without ever performing it.

            Since we have been home from the hospital Jett’s weight has started to increase slightly, at least were moving upward not down, and he has been to multiple doctors appointments.  The first piece of GREAT news that we got was that the internals of his eye are all normal and he should be able to see.  The dr told us to give him a break, he isn’t tracking normally because he has had so many other problems that his eyes haven’t been a big concern.  Next we got a kidney ultrasound.  He has what they call a horseshoe kidney, and hyperuresis.  The kidneys are usually 2 separate bean looking things but a horseshoe kidney means they are connected and it forms a horse shoe.  Most of the time this doesn’t cause any problems, and lets hope this is the case for Jett.  They hyperuresis means that there was a lot of urine in his kidneys.  They don’t know why, or if it is bad, so we will follow up in a few months to see if it has resolved by then.  Lastly we went to the cardiologist.  They did an echo, heart ultrasound, and an ECG.  The Doctor said that his heart is healthy and normal (hallelujah!!! Something works right)  His cleft lip surgery was scheduled for February 21^st but we obviously had to change it until he is bigger and healthier. 

            Now that we have had a little time to digest the situation; these are our current thoughts.  This can’t change who we are.  We will still continue to do what we love to do and what we have done in the past, it may just be harder to do those things.  Jett has high expectations placed on him, but likewise for Tennille and I; Jett is expecting a lot from us.  We understand he is going to have some hurdles to overcome, but we are going to push him to amaze us and everyone around us with what he can do. 

Thanks so much to all of our friends and family that have taken care of us with dinners, cookies, date night, games, adult conversation, etc…  Everyone has been so nice and supportive of us.  I'll try to update this as Jett continues to progress, but seeing as we (maybe mom and dad too) are about the only ones that read it, the updates may be few and far between