Friday, May 13, 2011

Swallow Study and Thank You's

Yesterday John had his swallow study. It was a DISASTER in more ways than one. First let me tell you, I had a rough idea of what it was going to be like, but I had no idea!  This Barium Swallow Study was suggested by our speech therapist that sees Jasiu at every Norwood Clinic/ Cardiology appointment. Since he is still only taking 1/2 to an ounce of milk by mouth, they were thinking maybe he is silently aspirating which could cause long term damage to his lungs. I also thought that it would tell me if there is irritation in the throat or any other gastric issue with him not taking more, I was WRONG. They just focus on the mouth through the esophagus and nothing further.  So we get there and Jasiu is hungry because they told me not to feed him too much before the appointment because he needs to eat in order for the test to work. OK, great, but with hospital time, our 11:45 appointment turned to 12:30ish  and by the time they set up the x-ray machine and it was around 1 pm. I dressed Jasiu in a front snap onsie because those are the easiest for cardiology appointments since I don't have to bug him too much with dressing and undressing as they really just need to see his chest and listen to the lungs once we weigh him (in his birthday suit). However this is not cardiology and an x-ray machine picks up the metal snaps and can't get a good picture on the monitor, so we have to undress him- STRIKE ONE ! Jasiu doesn't like this... Next instead of on my arms feeding nice and snugly to mom, he is placed on a hard x-ray table with some towels - STRIKE TWO! Than the tech moves him around to get a good angle and the speech therapist practically shoves the bottle of Barium liquid into Jasiu's mouth while he is crabby and crying- STRIKE THREE! Here he's screaming and they keep trying to feed him. I know my baby by now, there is no way that Jasiu will do any sucking of any bottle when he is crying no matter how hungry, that's just not him. Apparently food and liquids doesn't console him when he's angry and if it does it's only for the two minutes it takes to realize that this is the bottle and not a pacifier. So we finally stop after 10 minutes of nothing down Jasiu's throat.  I calm him down in my arms first unsuccessfully as I'm wearing a cold lead vest to protect myself from the x-ray machine.. then I get a blanket over me and finally console this poor hungry crying baby. They decide to prop him up on a chair and see if that would work since he won't do it laying down (He's never ever eaten lying down besides in our arms) That second attempt also did not work either as he is too little and kept falling over and still it wasn't in my arms so he wasn't having it.  Our final attempt was at my request to keep him in my arms but not snuggled to me but arms extended in front of the x-ray table and the machine so that he's in both my arms but in between the x-ray machine, the speech therapist was doing the feeding as I ran our of hands and the tech was doing the x-ray maneuvering and a second speech therapist was looking on the screen as Jasiu was swallowing and looking where the barium was traveling as he was eating.  Long story short... we got 4 sucks out of this cranky baby and only saw one micro aspiration and probably because by that point he was beyond pissed off and wasn't having any of this nonsense. So we are back at square one and I just have to deal with it that he is probably just to weak to eat more and hopefully after the Glenn he will gain much more strength to take the bottle.  I know this and yet still am having a hard time accepting it so every meal time is stressful both on me and on Jasiu as I trick him with the pacifier to get more sucks out of the bottle playing the old switch-a-roo. I decided yesterday after all that that I will no longer do it. He will eat what he wants from the bottle and the rest will be in the tube, when the time will come Jasiu will eat... Everyone assures me of this, the pediatrician, cardiologist, speech therapist and heart moms who have been there and done that.  Easier said than done but I will Truly TRY !!!    After that ordeal I go to the waiting room to feed Jasiu via tube since he's starving but as always around that time, Jasiu decides he needs to take care of his needs and does #2 so we stop the feed because I will need to change him and raising his butt above hiss stomach causes him to throw up if his stomach is full so I wait until he's done but I have to disconnect the feeding tube from the NG tube. After I change him I reconnect and fill up the feeding tube practically one handed  as he's in my arms because he's crabby. So we continue feeding when the connector from the NG to the feeding tube slips off and most of the milk spills all over me and Jasiu the chair and the floor. : (   Good thing I had another bottle to pour in once we got things under control. There was also a nice lady in the waiting room that helped me clean up the mess. (more on that later)  Then we finish up feeding, gather our things and finally get the heck out of there all wet by 2:30 pm and we were there from 11:20.  Needless to say that my experiment to see if I can handle NG feedings outside of my home all by myself FAILED. I will need to continue to bring someone to our appointments to help out and here I thought I had mastered it all.

Second, today I got a nice card in the mail completely unexpected. I want to thank this special person for making my day. I really appreciate the kind words and prayers. This coming from people who had hardships of their own really means a lot to know that they care. To add to this, as I write this blog entry the doorbell rings and a delivery guy is standing at the door with a bouquet of cookies... It's Cookies by Design from the same family as he card I received. How thoughtful. Emily and I LOVE them and they are delicious.  A HUGE THANK YOU !!! I can't wait for all of you to be healthy so you can stop by and finally meet Jasiu I know it's hard with a toddler on your hands ...

Finally, a special request for Aiden, a little guy we met at Hope hospital and whose mom helped me out when I had feeding troubles with Jasiu in the waiting room. Since we had much time to kill in the waiting room, we got talking with his mom and poor Aiden has an unidentified problem. The poor guy can not keep his food down. He is one month old and has not gained an ounce since birth despite being able to chug 6-8 ounces of milk from the bottle. His problem is that he throws up most of his feeds, every feed and his mommy and doctor still have not figured out the problem. They thought that the passage between the stomach and the intestines was to too narrow.. stenosis of some sort ( I missed the suspected diagnosis) but after the first x-ray it came back negative, so they are still back at square one trying to figure out what the problem is.  Say a prayer for Aiden and his mommy so that this tiny guy can gain some weight and be a big boy like Jasiu. Compared to Jasiu he was so tiny and I was amazed that he could suck that much... When she heard that Jasiu only takes in half an ounce she was amazed but then noticed his NG.   Again, I would have no idea any of these problems existed with babies had I not had Jasiu, the world is full of problems  and kids that need lots of help and we can only pray that we can figure out how to best help them and live life to the fullest.

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