Thursday, September 9, 2010

Lots of updates

Well tonight was a reality mixed with being thankful, and angry. It seems our lives are a combination of mixed emotions on a constant basis. We are thankful, and grateful that Jude is with us! However this NG tube is proving to be a source of great anxiety, for me anyway. Jude threw up again tonight. Thank goodness for my old softball background because I proved to be a great catch, until Jude threw up the second time. Mike is amazing when it comes to inserting the tube, and setting up the feeds. It's almost become mechanical for him, but I know it truly isn't. He has stepped up in a way that has made me admire him so much. After Jude threw up Mike scolded me about the way I was holding Jude, in a nice way. I learned I can no longer hold Jude like a baby because it can cause him to gag, and aspirate. Home health had been out today, and explained all the rules to Mike. They said they didn't recommend we travel very far with Jude in the car because of the possible aspiration. When we hold him we must keep his head upright, and he cannot tip his head back. They have also recommended a mattress that is elevated to keep liquids out of his lungs, and for his feeds. We have a feeding chair, but Jude doesn't like it much. We are still searching for the best way to restrain him when inserting the tube. It seems Jude gets really upset when we remove the tape on his face securing the tube down. We have the "sting ease" for the tape, but it doesn't help much. I think it's just the sensation of having someone mess with his face that annoys him. By the end of the night I was in tears again because I feel like everything has changed, I cannot even hold Jude in our favorite spot on the couch. I know this only temporary, and I am sure things will be better with the G button. I forgot to mention that while they were training Mike on placement of the tube, they explained the risks (of course). After Mike placed the tube the nurse let out a sigh of relief, and told him how her other dad that morning had stuck the tube right into the babies airway, and the baby turned blue. So she was very happy Mike had listened, and followed all the directions the best he could. I felt terrible for that other dad, I bet he is afraid of the tube now.

I wrote the above last night, but then I had to go because Jude was having issues. So I will finish this blog up today. Jude did pretty well with the throw up last night he got me, the couch, the blanket, and more before he was done, shoo! On top of that our dog was acting very sick, but I have narrowed his issues down to anxiety. I am not sure why I was so emotional last night, but I was. I was crying at everything, it was like I had the baby blues all over again. Mike would talk to me about Jude's situation, and I would cry! I would see a pampers commercial, and I would cry. It was borderline ridiculous, and I am just moody. Actually, I am just angry! Mike said that for once he is up, and I am down. He explained he sees this as a new beginning, and something to keep Jude here longer. I see all this as a ticking time bomb, but I will work past that, I always do.

So Mike is going to request a new suck swallow test after the NG tube is out. Although, he said that the nurses had assured him Jude was relaxed during this past test. I could be wrong, but I believe the constant seizure activity has caused the aspiration. I think Jude's body has forgotten how to eat correctly. I did have to tell you one thing we have noticed that shows proper brain activity. Jude has learned to reach up, and try to pull the NG tube out of his nose. He is also bringing his hands to his mouth, and sucking on his fingers. I think he misses his bottle. Judes cough is still very prominent, and he felt a bit feverish again this morning. I do believe the antibiotic is wiping out the double pneumonia, but the viral portion is lingering. Jude also keeps sneezing, but I think that's just the tube. I told Mike it's probably like having a cutip constantly rubbing your nose, which makes you want to sneeze. I want to sneeze just saying that.

So I got up TWELVE times with the little booger last night. He would twist his body around, and somehow get his face backwards on the padding of his bed. I would have to turn him around, straighten his legs, and cover him back up. We have him on the wedge, with the boppy around his butt, and his hands covered so he doesn't pull the tube. He is a wiggle worm though, and finds his way out of our make shift restraint system. Mike had stayed up after Jude's last feed listening for Jude in case he threw up. Mike finally came to bed about two am, and that is when I took over thus explaining my twelve trips to his bed. About six am Mike woke back up, and took over with Jude, and at that point the boy was wide awake in his bed. Our conversation went something like this.

Mike "He is going to kill us I think"
Me: "Yep"
Jude "Ieeeee"
Mike: "It's like we are getting enough sleep so we don't go crazy, but our bodies hurt"
Me: "Yep"
Jude: "Ieeeee"
Mike/Me: "Little stinker!"
Jude: "Uuuuhhh!"

The nurse is not there today, so it's Mike's first day alone with everything. We should have her back tomorrow for awhile. My aunt is going over to visit Mike, and his parents are stopping by. Before I left today he said, "Babe, I promise not to call screaming at you today because I am frustrated". awwww!

Mike putting in Jude's medicationsImage and video hosting by TinyPic

Jude's loaner Kangaroo pump. We get the Entralite soon. Image and video hosting by TinyPic

Dad, whatcha doing?Image and video hosting by TinyPic

Jude's adorable birthday cake we had gotten to take to his party. We sent it to my cousins to enjoy, and they brought us the top to the hospital. Image and video hosting by TinyPic

Emily seems to be handling things pretty well. She has been a bit more distant from Jude, I think this all shook her up a bit. Although, last night after he threw up, and we removed the tape, she got down to Jude's level, and helped console him. Poor Emily has had hours of homework every night. Last night she was up until 11 finishing her homework for today. I don't understand why they expect kids to go to school for 8-9 hours a day, and then send them home with 2-3 hours of homework. It just makes no sense!


Debbie said...

my heart is aching for you are going through so much right now and so many adjustments.
It is no wonder why you are have every right!

Just know you are in thought and prayer.

sarah said...

I think your feelings are completely normal in this situation.I think that you are right about the "mechanical" part,sorta...There are specific steps to the procedure, and he knows what problems to look for, and what the outcome *should* be.

I bet you can still hold Jude on the just need to change position when you do it. As for a place for Jude to sit while he "eats", try a beanbag chair. It will give him the support he needs, and you can sit him pretty much upright in it. I never thought of it until they suggested it for Clay while he was in the body cast.

Mike must feel great that he did better at placing the NG tube than the other dad. When things get crazy, just remember that both of you are in this together...and that you need to lean on each other. Don't let your frustrations make you distant from each other. When things get crazy at my house, hubby and I find 2 free minutes and just hug. There is just something about standing there with my head on his chest, and my arms around his waist that re-charges me.

Rita said...

I am not sure how to arrange it but a nurse can be with you more with no cost to you. I realize Jude isn't dying but it is still ok for hospice to come for a period of weeks or months and help out. Check this out I think at your closest hospital. I know we could have had some help but I figured that out after I needed it.