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
8 comments:
I'm so sorry you're frustrated. Reading this tugs at my heart. Jett is truly blessed to have the family that he does. Sending love and prayers your way! Hope things start looking up soon!
-Amanda
You can Bitch and Moan all you want, I think you deserve it. Hopefully things will work out with school. Also sending loves and prayers your way.
If you don't bitch and moan, you'll let your frustrations turn into bitterness which is even worse. Vent all you want! That's what we are here for. You guys will get the hang of this and things will settle down. You've had to make a LOT of life adjustments in just a month and you can't expect yourself to not be frustrated or even angry.
Anyway, Jason and I are always here for you. Stop by whenever (or call us and have us come visit! either way!). You guys are awesome.
i look up to you two so much. vent all you want, i do it all the time. i'm so sorry for what you are going through. it seems like it is one thing after another and it isn't fair. i wish i could do something to help. love you guys more than you know, and i miss you!
Hi, I'm Chelsey Seamons Markham's step mom and she has been telling us a bit about Jett.
You have been dealing with so much in the 12 weeks that Jett has been here and I just have this to say. Don't let those Dr's tell you one thing when you feel so strongly there is something wrong. Keep pushing for answers, and I am glad Tennille finally yelled at the Dr. and got her to schedule an appt with a GI dr. You are the parents and spend 24/7 with Jett. You recognize when he is in pain and unhappy. A Dr. sees him for what, 20 minutes, and says its this......nope. Get a second opinion. You know what is right for your son. Stay strong and keep fighting for him.
As for your schooling, I can understand your frustration. Once you have met with Dr's and can make a better decision based on what you learn, you will make the right choice with school. Keep finding ways to vent and release the frustration and know you have so many people cheering you and Tennille onward.
Oh my goodness you guys. We seriously think of you guys so much. I hope you find some answers abotu Jhett. How frustraing. Needless to say the doctors are not our favorite people either. You guys are such awesome parents and Jhett is lucky to have you. I am not sure if you have ever thought about taking Jhett to a prediatric chiropractor. I know that may sound weird to you but I have seen amazing things happen with little babies and having chiropractic care. Please do not feel I am trying to tell you what to do with your son, you know best. I just know with my experience that it would beneficial to him. If you need help finding one I know Chris has some connections in your area. Anyways, we are praying for you always. Wish we lived closer so we could help.
-Kerri
I second what everyone else had to say! I'm so sorry you guys are having to go through this, I can't imagine the frustration. You're in our thoughts and prayers!
I know I shouldn't be, but I am laughing. Cody- this kid is my favorite already, kung fu grips and binky holdings. love you Jett!
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