Not-So Baby Ethan Update

So, just a small update on the family!

Three days ago Tia went under the knife to have an abdominal hernia repaired. Hafter having two somewhat large children, things like this happen! Immediately following her surgery she started going downhill. Severe headaches, severe nauseousness, sever pain...everywhere. She was completely bed ridden for 2 days. Finally at about 3 am yesterday morning, she decided that all this throwing up could threaten the integrity of the repair and the mesh holding everything in place. So her and her stepmom went down to the Valley General Hospital emergency room (I was at work). At 7:30am I get the call that she is going in for a CT Scan. At 8:30, I get another call saying that she is going to be admitted.

She checked herself in at 3am and the first doctor didn't come to see her until 5:30pm...like, in the evening! FYI, Valley Hospital is the EXACT SAME company as Deaconess. And I think we all know how we feel about Deaconess.

The doctor came in and talked to her for like 6 minutes, he sounded really confused on why she was there and gave us the impression that she didn't even need to be there. We beg to differ! He then, real abruptly, kind of meandered out of the room. In the middle of the conversation. He didn't say good bye, didn't say he'd be back, didn't say he was going to go check something...or whatever. He just didn't say anything...just left. The nurse came in and asked what his thoughts were. We were stumped, he didn't tell us anything! He did mention an OB-GYN consult (not quite sure why). But after the OB did a seriously painful pelvic exam, he determined that she either has cysts on her fallopian tubes, or Pelvic Inflamation Disease contracted from the surgery. He also said that there is a chance she could remain an inpatient for up to 4 days. If the antibiotics are not helping her in 4 days, then another surgery might be in close pursuit. That will mean she will still be inpatient when I start school on Monday...and I still have to juggle everything else. At this point I had to go to bed. It was after 7pm, and I had to get up by 9:15 to leave by 9:30. Yes, I slept at the hospital in my work clothes...eew!

I will know more when I go see her today. The stupid thing about all this is, her hospital is in the Spokane Valley, Ethan's hospital is in downtown Spokane which are probably a good 20 minutes apart in this dumb weather we are having.

In any case...more prayers please!

Take care for now.

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 12/31/08

Ok, so I know I told you I would write when he moved...and I didn't!
Just know, the move went really well, Medstar came late, it took like 25 minutes to drive 6 blocks, and then the intake was like 4 1/2 hours long. But all in all, he is at a better hospital with a much better staff.

For those of you who wish to visit him, he in on L2E (Lower Level 2 - East), room 211. You don't need to sign in, you don't need permission, you can just go right in. When you get to the pediatrics unit, he is the last door on the right across from the nurses station. You don't even need to tell the nurses who you are, really!

In any case, he was doing a lot better. We were able to get him from a continuous feed up to a bolus feed which is more desirable for his situation. He was doing really good with that until he decided that he would start having his watery stool again. We did find out that he has a class 3 allergy to pork (I guess class 3 is the highest/worst), which his Pancreacarb (his miracle enzymes) is a pork derivative. So we quickly stopped using those (even though he was having no adverse effects from it), and put him on these vegetable enzymes that we can only get a Huckleberries and insurance, nor the hospital, will cover at this point. So now we are stuck with paying for these enzymes out of pocket. $11 for 60 pills, 60 pills are only good for just under 7 days. And these are supposedly the enzymes he will use for the rest of his life. This is going to get expensive!!!

So, making a long story short, we still don't know when he is going home, we still don't know why he is having such bad liquid stool, we don't know why he is getting this serious butt rash that he has. We have gone through like 3 different g-tubes and nothing has seemed to work. Everything we try just keeps leaking around the tube at the insertion site. We started out with a bard g-tube. We took that out and put a foly cathiter in. This is a urinary cathiter that is smaller in diameter that was inserted in it's place in hopes that the site will shrink down around the smaller cathiter. We will then take the cathiter out and put the g-tube back in making a tighter fit. That was the idea. So after a couple days with the cathiter in, the surgeon decided that it was time to put the g-tube back in. Instead of using the bard, he decided that a Mickey was a better choice of g-tube for Ethan. It took only a couple days to find out that this g-tube was also leaking perfusely around the site. The decision was made to have radiology take the Mickey out and put in what is called a GJ-tube. This is a tube that bypasses the stomach and goes directly into his upper small intestine, it is called the jejunium. We did that yesterday, and now he is "frothing" at the insertion site. We are all so confused on what is going on, so we decided to take him back down to radiology today to see if posibly the tube was placed wrong, or something else is malfunctioning. No results as of yet!

Prayers are still needed for this feeding issue. Nobody seems to know why he can't keep his food in. Also, we need prayers for controlling the acide levels of his stool to reduce the sevarity of his butt rash. We also would like prayers that he will be able to come home soon. Once he is on a feeding regiment that works, home is just right around the corner. Prayer for Tia as she is sitting behind me right now, trying to put her clothes on by herself in the recovery room after her hernia surgery. And a lot more paryers, but I think I should go help her get dressed. She is wincing and moaning. I am such a bad boyfriend right now!

Love you all!

Take care for now,

- Kip, Tia, Riley, and Baby E -

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 -

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.

Baby Ethan Update - 11/28/08

Hi all!

So we got our family photos back today. They look great!

Here is the link:

http://imagesbyjen.smugmug.com/

Click on "Ethan & Riley - nilmdts"

Password is: "Murray" (it is case sensitive)

These pictures are open to download if you want. We own the copyright on them so you all can do anything you want with them. I hope you all enjoy!

So on with the update!

As of a couple days ago he finished his lipids, finished his hyper-al, and the IV has been capped off but will stay in until we can make sure he is gaining weight on his own. We expect to take his IV out in about another day or two. We have also FINALLY gotten him to full feeds and are now able to give him small amounts of food in a bottle as long as he is willing to take it.

Our Occupational Therapist (OT) has requested that we bring in banana, sweet potatoes, and other stage 1 baby foods to try and feed him that as well. We are continuing with his enzymes, however it is the enzymes that Ethan does not like very much; we are using them as long as the pharmacy cannot get the "beads" enzymes in...these will be the enzymes he will use until smart people can develop a better kind of enzyme.

Because we are done with his Hyper-Al we are starting him on some multivitamins, an antacid, table salt, and iron. These are all the things that we were giving him in his Hyper-Al that will need to continue being given for some time. His multivitamins, and salt will probably need to be given as a dietry supplament for the rest of his life. We are not sure about the antacid though.

We are going to start him on Bolus Feedings ("a larger amount of food given through his G-Tube over a shorter period of time. Much like giving a regular child a full bottle in one sitting") sometime in the near future. And we are just waiting on a home healthcare agency to come over and begin teaching us how to use the machines and equipment that Little Man will need once he does come home. However, we still don't know when home is...they're just wanting to get us a head start.

As of today he is still 22.5" long and weighs 14 lbs 10 oz. Yeah, our little man is just a little bit bigger. Tia also says that he has a diaper rash becuase up until just recently he has had a virgin butt! Sounds kinda bad, but that is what she said...you'll need to ask her!

He has become an avid smiler, and talker (we actually caught him and his roommate, Baby R, cooing back and forth at each other), and he holds his head up all by himself very well. For being hospitalized for so long he is developmentally behind by about a month in a half or so. He is catching up rather quickly though. To help him catch up even faster, once he comes home, we will have many visits from the OT's and the DT's (developmental therapists), the ST's (speech therapists) and all kinds of other friends.

Also, the hospital is STILL giving us the run-around about his circumcision. For some unknown reason, nobody over there is willing to help us figure out how we need to go about getting this done now considering there are not many doctors left that are comfortable enough with doing the procedure. We can possibly have it done with a Pediatric Urologist, but we don't even know if she will do it or not. If for some reason we do need another procedure done, we will have a different surgeon come do the procedure who we know is willing to do the circ. But for now, it is all up in the air, and the last time we asked the hospital about it they became extremely outraged at Tia for asking and basically told her to stop! This is the Neonatologists we are speaking about. But we get the same resistance from all the nurses as well. We are basically lost at this point!

So it would be safe to say that when this is all over, we will all be very happy not to have to visit Deaconess anymore!

So that is pretty much it for now. When something new happens, we will let you know!

Don't forget to check out the pictures. Take care for now!

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 11/22/08

Hello Peeps!

Well, we have had enough progress to get you all updated again. So, even though he reacted poorly to the pavulon they gave him (which I was told from someone outside of the hospital that the reaction was normal), he has recovered quite well. We feed him through his G-tube about 29CC of formula over 4 hours every 6 hours (4 hours on, 2 hours off). The other day we started him on his enzymes again because he had been tolerating his feeds so well.

By the way, Ben! All the prayers are working...HE POOPED! lol

Ok, so what I mean by that is that after his reanestamosis, we were afraid that either more of his small intestines or his colon might not work and they were going to have to go in and remove more things. They did start to give him glycerine suppositries to kind of jump-start his blowels, but in the end he can poop and not need any help. This is a MAJOR step to him coming home. This is a key role in determining if he would need more surgeries or not. Because all this has happened, the feeding, the pooping, the enzymes, we can now start talking about going home. And today, we kind of did!

We are still very hopeful for Christmas, and now it looks like it might very well be. He is still on his Hyper-Al (hyperalbumin, his nutrients), but we are slowly wheaning him off of that as well. Once he is off of that, we will keep the IV in and flush saline through it for a couple days to make sure he can sustain himself without the Hyper-Al. If he can show us progress with that, then they will take out his IV (PICC line) that is in his head.

We have already gotten him off of is oxygen sensor since he was proving to us that he can get upset with out desatting (is that a word? the process of not going into a state of desaturation? what-ev!) Now if he desats we just wait until he starts turning blue. Sounds crazy, I know. But since he doesn't really do that, being able to take him off all his wires, and tubes and such makes us feel like he is a big enough boy to start taking care of himself.

the other day we had a charity group called "Now I Lay Me Down To Sleep" come in and do free family photographs with us. We should be getting the pictures back here in the next couple weeks. When we do, I will post some on here so you all can see. It is not our first family pictures, but they are our first professional family photographs. I can't wait to see how they turned out!

We have started oral and nasal stimulation (tastes and smells). It has come to our attention that babies that are in the hospital for long periods of time with nothing going into their mouth can cause them to have what is called an oral adversion. We know of a young boy who is 8 years old with his G-tube still in because he has never been able to get over his oral adversion. Also, we know of another young child who was in the NICU for 11 months, when he went home he could not stand the smell of the aromas coming from the kitchen...his mother moved the stove to the front porch and now cooks outside. We don't want either of these to happen, so we have started giving him things like bubble gum, peppermint candies, pretzles, all kinds of things for him to suck on so that he can get used to different tastes and smells...and he LOVES them!

Ok, so I kind of need to get back to work, but that is for the most part what we have been able to accomplish over the past couple weeks or so. He is doing so very well, thank you all again for all you have done for us!

Until next time, take care!

- Kip, Tia, Riley, and Baby E -

11/18/8

Well today is day 109 in the NICU. Is this ever going to be over? They tell us that we might be able to come home around Christmas. I could see that happening but who knows. One BIG hurd le Ethan has to overcome is to get up to full or partial feeds. At this point most of his nutrion comes from TPN. But he is takeing some feed by his G-tube. To be up tp full feeds he needs to take 60ccs an hr. Right now he is at 18 ccs per hr, at 11pm he will go up to 19 per hr. He gets 4 hrs on then 2 hrs off, Every 6 hrs his feeds go up by 1cc untill he gets to around 60ccs per hr. We will be starting Enzymes in a day or so. Im not sure what kind we will be using. If he cannot get up to full feeds they will talk to us about going home on Tpn.
We have one last hope to get his circumsision done and that would be to put a Broviac iv, but that one only be if he is going to go home on tpn. So only time will tell on this.
Well just a few more days of Tobi, we started on the 1st of october and the dr wants to continue untill the 21st. he is also on a few other antibotics but im not sure off all the names of them. The drs dont tell us what all they are becsaue they change them alot. The drs done tend to tell us a whole lot becsue we have found so many erros that we have started asking them about everything. So now they tell us we dont need to knwo every detail.