Friday, April 8, 2011

A New G-Tube for Jacob...coming soon!

The last week as been quite the eventful one for Jacob. Physical therapy on Monday, Early Interventionist on Tuesday, Wednesday (all Jacob appts) Dentist 8am, physical therapy, 930, Vision therapy 1030, Speech therapy 1pm, GI doctor 3pm., Thursday Early Interventionist, Friday speech therapy 830am, ENT 930 am.

Seeing this past weeks schedule there is a few things to update on Jacob....

Food Trials at Speech Therapy!!! He ate baby food twice this week! Not much. just a few spoons full, but he did not gag, he kept most of it in his mouth, and HE SWALLOWED IT! He is swallowing about 8 out of every 10 attempts at getting him to swallow with stimulation on his tongue. So I guess the ESTEM is working :-) Hopefully over the next few months he will become more coordinated and we will be able to feed him baby food daily.

On Tuesday night we had a G-tube "accident". He has had the same tube since last as you can imagine after daily use for months now there is a little wear and tear with this tube. It is not the 1st time it has sprung a leak, I have probably cut 3-4 inches off the tube since he has had it. Over time the tube would stretch where the adapter connects and over time it would get little holes at the end of the adapter. I put him to bed Tuesday night and started his 4th feed. Feeds go in over about 1 1/2 hrs. He was asleep and so of course when the pump beeped that it was done, I went to disconnect it and flush the tube. His bed is soaked and his face is down in I am thinking just freaking great he must have puked. So, upon further examination, I go to disconnect the tube connected to the pump from the adapter...and the actually g-tube tube is blown to pieces! What the Heck! So I guess what happened is either from him being on his stomach and pinching the tube off or the clamp getting clamped from him moving it stopped the flow of the food. Well, the pump (which was new and I just got it that day) is suppose to stop pumping and alarm if their is a clog in the line. I assume it did not do this. The tube had busted open in a "T" shape for almost 1 1/2 down the tube. Usually I have only found pin size holes in the tube. So, I cut the tube and put a new adapter on. The tube is so short now their is hardly room for me to move it to the side while he is asleep. The tube felt as if it was out in the sun for months. It felt brittle and weak. This concerned me, It is not suppose to be changed until June, but what if this thing rips in half while he is asleep, at my sister etc. So I called GI and we had a last minute appointment on Wednesday. She measured him for a Mickey button and gave me the Rx to have them delivered to me. I am currently waiting on them to call back to schedule the endoscopy to have his old tube removed. His current tube does not have the water bubble on the inside like other tubes do. His has a hard disk that is attached to the tube so it can't be pulled out from the outside. They have to go down in his stomach and remove it the same way it was put in. I am so glad this tube will be gone. With the Mickey Button I can replace them at home when they are worn out. I will have to worry about it getting pulled out and leaking, which I have not had to worry about with the tube he has now. To put regular cloths on him without having to try and hide his tube all the time will be great! The GI nurse told me some of the meds he is on can make the tubes wear out faster.

Jacob's current G-Tube

Similar to what Jacob's next tube will look like

Dentist: I was worried about Jacob's yellow teeth and the way his molars are coming in. I know seizure meds and prematurity in general can make their teeth come in yellow. The dentist agreed that that is what is wrong with his teeth he has lack of enamel on is teeth so they are not pretty and white...I have the same problem...looks like I drink tea and coffee all day and never brush Grrr.... His bottom right molar has only what  I can describe as a gum blister. The tooth is trying to come in and thee gum will not let it go through. It is swollen and the gum is stretched and almost appears fluid filled over the top of the tooth. It looks like a blister you would get from a new pair of shoes. Ewww The dentist told me it is normal and that once again seizure meds can make their gums do this.

We seen the ENT doctor this morning. He seems happy with Jacob's health at the moment and thinks we should hold off on Tonsil and Adenoid surgery. Jacob goes for a sleep study on Monday night. I have to call the ENT office back if their is something abnormal. We have a follow up in 3 months. If Jacob is still stable and has no respiratory issues we will have the skin tag removed from his ear. His ENT doctor is also a facial plastic surgeon.

Jacob over all is doing very well. He is still congested. His tonsils are still enlarged, but there is no coughing. This Saturday will be 14 days with vomiting!!! Praise God! I still don't know which one is working rather it be the Zyrtec or the Erythromycin. I am just grateful that God gave me the insight to research myself and ask the doctor to try something new and different. If I would not have insisted on him trying medication for gastropheresis we would still be vomiting every day! Thank You Lord for a long awaited answered prayer!

Nothing new going on with his developmentally he still goes from being very spastic to being very limp. He has been very tired lately, but he is a busy little boy. I like his new EI she has come with new ideas of ways to stimulate him. They play with play dough and she gets him to smell things. I have never thought to make him smell things that he is touching...kinda interesting. I hope with new found wellness, good things will start happening with him.

I just made the last payment on his CharleyWrap today...hopefully we will see it in the mail soon. Having anxiety that it won't fit right and that we wasted $500 on something that won't work, but hoping if that is the case it can be remade :-/ I hope. Having high hopes that this will help him!!!

Andrew is standing more. I think it scares him to stand alone without the security of holding on to furniture or people. His knee walking is funny. He will walk on his knees and then when he decides he is not moving fast enough he will put his hands down and take off like a bullet. He is listening more and says more words. He is learning the difference between up and down, in and out. He is understanding the word bite. Hoping  for a walking, talking TODDLER by his 1st birthday!

Nothing new with Ava. She loves playing her video game, but still won't count or say her alphabet with me :-(

I went to the beach yesterday with my friend Melissa for a "girl day" Oh my I new I was going to regret my decision not to put on sun screen, but I also did not realize we would be at the beach for almost 5 hours! My back mainly and legs are so burned...I might just be bra less at work this weekend LOL It was fun though and I enjoyed my day out.
The Gulf!
Andrew decided to drag Ava's bike in from the garage and try to go for a ride LOL Little boy I don't think your feet can reach the petals yet.

 ***UPDATE*** 4/10/11
Jacob goes on 4/22/11 to get his g-tube replaced.


  1. Hey, that's my daughter's tummy. Hope your son is doing well.

  2. Hope Jacob is doing good with his new gtube.My gson is getting his on 8/16/12.