Friday, December 12, 2008

Baby Ethan Update - 12/10/08

Hello all. It comes that time again. Some news is old, so let us refresh you!
As of thanksgiving our little boy reached his full feeds and came off his I.V. We left the line in his head just to make sure he didn't need it. It was to be taken out approx. two days later, periodically being flushed with saline; however, this did not happen and we will explain why in a moment.
We started a home feeding regiment so that when he gets home, his schedule will work better with our sleeping schedule. With this schedule, we were looking real good to have him home by the new year. In order to get him to this schedule we needed to give him a larger amount of food in a shorter period of time. Since his body was not used to having so much food introduced at such a quick pace, his bowels could not keep up with the volume and he bagan to have a more liquid consitancy to his stoole.
At one point he was very awake and alert, cooing at everyone and every thing. Smiling like there were no worries in the world, and every thing was Honky Dory! When we introduced this new regiment, he became easily upset, very lethargic, and otherwise extremely uncomfortable all the time. So in trying to fix this, we added more enzymes to help absorb some of that extra liquid, and we added an antacid, and Imodium for diarreah. Guys, you should have seen the diaper rash this poor little boy had. On both legs there was scabbing that was probably 1/2 inch wide, by probably 3 inches long. On the cheeks there was severe scabbing that was probably 1" x 2", with a HUGE gouge that was probably 4 or 5 mm wide, probably an inch long, and easily 1-2 mm deep. If you think about it, a hold in your skin that size would produce a considerable amount of pain. He had this in between his cheeks.
Food began to seep out around his g-tube site, and has created an acid burn on his tummy where the liquid would drip. This can be attributed to him pulling on it, as it is currently his favorite toy.
After this, he started having bloody stoole, which began as speckling only, but then developed into full blood within a day. We stopped his feeds and put him back on his hyper-al yesterday. This is the reason why we did not take the I.V. out of his head.
The first 24 hours off his feeds gave his g-tube to have a chance to reseal itself around the tube, his skin to heal a bit from the acid food drips, and his diaper rash to get better. Today when we started his feeds again (a very small dose, over a very long time...1 tsp per hour) and he seemed much happier than he has been in days. We do not know the plan to increase his feeds, but before he can come home he needs to be consuming, and processing, and holding down approximately 4 cups in 24 hours. However, this is just an approximation that Tia and I came up with. Last time we got him on full feeds it took him between 15 and 20 days to get to the goal. At this point, we have started again at square one, and now we have to work our way back up.
Just to clarify, his bleeding did stop after his 24 hour rest. At this point we are not re-introducing his enzymes. We want to see how he processes his food without it. But our little guy is known to throw us a few curve balls every now and then. This could go very well, or very very badly.
He has been droppnig his weight the past week or so, but now he is stabilized and moving up again...or at least for the past two days he has.
We had our appointment with LifeCare Solutions to get his feeding pump, compressor and nebulizers for his home treatments. We are working on getting a vest for his CPT (chest percussion therapy), and an in-home nurse for approx. 16 hours overnight...if he ends up having the enzymes. Otherwise, a nurese is not needed.
So that is all for now. We will update you again in a couple of weeks, or if something HUGE happens.
Take care, and thank you all for your continued support!
- Kip, Tia, Riley, and Baby E -

Friday, December 5, 2008

small steps

Well today they finally got what I was trying to ask about breastmilk. It only took a few times of fighiting with the drs to make it click. I guess if i had used to correct terms theyw ould have gotten it better. I was asking for them to let me give Ethan 10ccs of breastmilk 2 times a day. As of right now we do that with formula and he does not really drink it, he will take about 2cc. The Drs were thinking I was asking them to start changing her formula to breastmilk. Yeah later in time I want to do that, Well I want to breastfeed him not feed him threw his gtube. But one step at a time. So today the dr came in and said Ok so i understnad now what you were trying to ask, yeah thats fine we can do oral stim with breastmilk. I was like ok thanks. But was it really hard for them to figure it out. So i guess i just need to sue medical terms when I ask for things. lol.
So They are talkign about discharge alot now, but in the same few minutes that we say soon they also tell us, oh we would like to keep him all winter if we could.
I guess once he gets home we wont have to mess with these drs anymore, it will be all differnt drs, whihc we have not met yet. We are going to tour the new hospital on tuesday. We have met Ethans CF dr and he is really nice.
So there is my update here is a picture for the day.