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.

Baby Eethan Update - 11/6/08

Wow, this is another long one!

Ok, I figure it's time I give you a little more that what I wrote a week ago Tuesday. Too many of you have been begging to know what's going, for good reason, and I am leaving you all in the dark.

Last Tuesday, little man had his stomas connected ("reanastomosis"), and a Brochoscopy done (think of like an endoscopy, but down into his lungs). He was scheduled for his circumcision the very next day, but it was never done. Even though I told you all in the original email that he did well in the surgery, that information actually turned out to be quite different.

Yes, the surgery did go well, we had some confusion about having two apendixes removed (there is a story behind that). And the immediate post-op recovery was ok. It was the long term recovery, actually all the way until today, that was really hard on all of us...including the nurses. The night after he was recovering he was taking extremely badly to his ventilator and all the other things plugged into him. The nurses could not keep him calm, so they had to sedate him. The gave him his Versed, but it still was not enough to keep him from thrashing violently and risking tearing open his incision, and pulling apart the reanastomosis. So they gave him a paralitic called Pavulon (I will tell you some crazy stories about this drug later) to keep him from moving at all. In fact, the morning after that gave him that, the doctor called us and said, "if you are coming in, realize that he will look like a vegetable." What we weren't ready for is the fact that he looked like a water balloon. His whole body was so swollen that his face looked like someone smashed it into a wall with all their might. You could not distinguish his eyes from his forhead, or his mouth from his nose. It was all just flat...puffy, but flat.

Because he was so edemadous they had to give him lasics (most of you should remember him having that from the very beginning emails). It is a drug that helps him pee off his edema. This kid, before his surgery, was weighing around 12 lbs. He weighed in, after his surgery, at his worst, 14 lbs 14 oz. More that 2 lbs of water weight. This lasics was making him pee more than 1000 mL of edema every 24 hours. Now you and I will do that in one go, but for a person his size, that is really impressive...and good!

{I know I am missing something here...so we will save this thought until I can talk to Tia again and refresh my memory...insert this thought in a later email}

So things were going well, or as well as could be expected, when the doctors decided that his platelet count has been too low for too long to do nothing about it. This is something that we have been watching for some time now, but could not understand why his numbers kept coming back low. So the final decision was that his IV in his foot had been in for so long that it was giving false readins. You see, when you leave an IV in for too long, it can start doing weird things. Like there could be a blockage at the end of the IV, it can cause infections, all sorts of neat stuff. So they decided to relocate his IV to a different site. In the end, they had to put it in his head...again! It is a PICC line that starts at his head, and feeds all the way to his heart! We can give IV drugs straight to his heart.

The doctors decided to extubate him today. YAY! He is off the ventilator...again! YAY! This will hopefully help with getting rid of some of that edema he has also. He was WIDE awake before they began to take it out, and was sound asleep just moments afterwards. To Tia and I, we think he was finally so happy, and comfortable, to not have that stupid tube shoved down his throat anymore that he decided to take a good long well deserved nap.

So except for what I believe is missing from that little snippet above, I think that's about it as far as the update goes. If you wish to continue reading, I will tell you of some of the battles we have been fighting with these other doctors and whatnot...there are three of them.

The first came about when one of the Neonatologists came to Tia and said that it was in the report that the surgeon had done an appendectomy during his third surgery. SCREEEECH! everything comes to a standstill!!! Tia, "Doctor Throne sat at our bedside after his first surgery and told us that he removed his appendix then. How could he have done it again during his third one?!?" Confusing, huh? Well, we thought so also! It took something like 5 days and many arguements to get to the bottom of this. And here is how it went! Oh, wait...before we begin, I need to throw one more name at you...Dr. Cantlin (he is the Dr. that did the bronchosocopy...he is an Ear, Nose, and Throat doctor)

We call Dr. Thornes office and speak with his assistant trying to ask if she had any idea about his two appendectomies. She could not understand what Tia was trying to ask, she she asked her if she could do a little research and call Tia back. So she did. About 30 minutes later, she calls back and I answer. She told me that the final decision for the appandectomy was that it was taken on 8/1/08. Doesn't that sound like a familiar number? She continues her explination for a bit before I stop her clarified what the date was. She told me again that it was on 8/1/08. I told her, "Mam! That is the day he was born. There is no way he had an appandectomy the day he was born". She stumbled around for a bit and finally found the date. She then proceeded to tell me that there was no appandectomy done during his SECOND surgery, the one where he had the reanastomosis, which was done by Dr. Cantlin. Wait, something sounds funny here too! "Mam, his second surgery was to correct Stoma Necrosis, and remove necrotic bowel tissue." Her response was, "Did Dr. Cantin do that surgery?" "No mam, Dr. Cantlin is an ENT. Dr. Thorne did his second surgery." "OK, so then Dr. Cantlin did his reanastomosis...it looks like on the 20th of August." "No mam, the Stoma Necrosis was done on 8/20, and by Dr. Thorne. The reanastomosis was completed on 10/28, also by Dr. Thorne. What we are talking about with you has nothing to do with Dr. Cantlin." "Ok, so then what is the question." OH MY GOSH! ARE YOU FREAKING KIDDING ME?!?!? "What we want to find out is how is it possible that my son had two appandectomies." Her final answer, "I don't show anything that says we did." "Well, Dr. Thorne told Dr. Barsoti that he did. And that's what we want to find out." She said it must have been miscommunication between the two. She calls back a few hours later to tell us the same thing that a different Neonatologist told us. "Dr. Thorne said that he did the appandectomy during the first surgery. During the third he saw that the appendix stump was not quite tied off correctly and so, like tonsils, a small portion of his appendix grew back. He removed that small portion, and re-tied off the stump so that nothing will grow back again." YAY! Finally an answer!

The second one comes as no one will do his circumcision anymore because he has gotten to be too big, too old, and too sick. We don't have a docotor willing to touch him, and even if we could find one, we don't know if we will have the money to do it anymore. We did pay a pediatrition to come do it, but now that he does not feel comfortable, he has sent me my money back. Because this is considered a cosmetic surgery, insurance will not pay for it. Because he is so big now, they will need to give him a general anesthetic. Yeah, we get to pay for all of that also. What we don't understand is why the hospital wouldn't let the pediatrition in earlier when he was smaller and not as sick. Before the surgery! We don't get it, and they don't have a good answer for us! So now we are stuck! We don't know what to do. If they ever end up putting this Broviac in (a semi-permanent IV in his chest), we will get a different surgeon who can do the Broviac, and is also willing to do the circ as well.

Finally, the third fight, which is really not a fight at all, but stupid all the same is going back to Dr. Thorne's office. We tried to ask a very simple question today...when was his first surgery done. Was it 8/4 or 8/5? We have a consent form singed on the 4th, however, I also have a copy of the surgeons report that says the date of operation was 8/5. In this report, the very first line says that "Baby Boy Ruck was taken back to the operating room on this day of life 3..." Now wait a minute! How can the 5th day be his 3rd day of life? Also, there is some speculation of the NICU considers the first 24 hours as day one, or if they consider the day he was born as day one. They couldn't tell us that either. So we are sitting there in the NICU at his bedside with 3 nurses trying to figure out what day his surgery was actually on. I think I really pissed off one of the nurses when I mentioned out loud that how they do their paperwork really sucks and there are far too many discrepancies in his chart! But I don't care, I am glad that they know we feel frustrated by it!

So that is our fun week we have had.

Well, you want to know something crazy about this drug they gave Ethan, Pavulon?

Pavulon is a nerve blocking agent...a paralitic. Pavulon is also used with sodium thiopental as a lethal injection used in capital punishment in some parts of the USA. It was also used as the drug of choice by the mass murderer "Angel of Death" Efren Saldivar (check out this link http://en.wikipedia.org/wiki/Efren_Saldivar). Yeah, they are giving this crap to my 3-month-old son. How stupid is that?

Ok, this has gone on for long enough. Hopefully there is enough information here to feed the hoards for another week...lol! I am just kidding!

Take care to all of you out there that are praying for us. We appreciate each and every one of you! Keep your eyes open for a simple website we are putting together for Ethan. It won't have much, but it will have all his updates, pictures, and even a place to sign his guestbook and leave prayers for him that we can print out and read to him!

So until next time...which will probably be like another week...

- Kip, Tia, Riley, and Baby E -

p.s. Mom, because you asked, we got an answer for you! PICC = Percutaneous Intravenous Central Catheter

Percutaneous = Denoting the passage of substances through unbroken skin, for example, by needle puncture, including introduction of wires and catheters.

Baby Ethan Update - 10/28

Today our little guy had his 3rd and hopefully final surgery. There were a few things done! He had his stomas reconnected, he had a bronchoscopy where they looked into and took cultures from the inside of his lung. He had a feeding tube put into his stomache. And tomorrow he will have his circumcision. We are just biding our time until he begins to poop. Once that happens, we can put him back on some food. Once he is stable with his feeds, we can start talking about coming home.

It has been a long day, I am tired, and I really don't feel like writing any more! I am sorry this is so short! When I have more energy, I will write again!
Take Care for now!

Sincerely,
Kip Tia, Riley, and Baby E

Baby Ethan Update - 10/23/08

Hello all!

Again, I wish to thank all of you that visited Baby E last sunday for coming to see him. It was a wonderful turnout, and it meant/means a lot to us that you would take time out of your busy scheduleds for comming to support us! Thank you again!

Well, for some time now our little guy has not been being fed because of some irritation issues with his bowels. They tried to feed him a small amount of food and he ended up bleeding out his little stomas. So we don't really know what is going on there. They believe that only one loop of his small intestines is inflamed (or not functioning properly), so when they go to reconnect him, they will probably cut out that little piece also.

Our reconnection surgery is scheduled for 7:30 am next tuesday (10/28). We don't anticipate that this will be a heafty surgery, but knowing this kid, anything is possible. They will reconnect his small intestines, possibly remove the infected loop, do a Bronchial Endoscopy to look at his lungs and take sampls of tissue and fluid, and circumcise him all at the same time. Wow...sounds like a lot, actually!

So almost every day we have therapy time with him where we do stretches, and coordination things...basically we play with him. We have a neat little mat that lays on the floor, and we have toys and things and he seems to LOVE his play time with...well...mostly mommy! All the nurses say he is a big flirt because he always smiles at everyone, he is so cute! The other day his occupational therapist said that she was noticing that he was laying on his back and deliberatly swatting at his fish mobile that he has hanging over him. She was shocked at how well he was doing because, according to her, most kids his age (who have been bed ridden since birth) don't have the strength to fight gravity and lift their arm up that high for that long. So we were really pleased to hear that.

Last time we spoke I think I mentioned something about possibly moving to Seattle to continue/finish his ICU care. After much consulting, and debating among ourselves, Tia and I have decided that it is in Ethan's best interest to stay here at Deaconess, at least for the time being. If you have no idea what I am talking about, last time I wrote about the "political" things that needed prayer for. Some of those prayers have been answered, but not all...yet!

Well, in any case, I think that is where we stand at this point...I really don't know why I say that. Every time I email all of you, Tia always "reminds" me that I missed something...lol! But that is her job, to keep me on top of things!

Thank you again for all of your support! There is an end of the road out there somewhere.

Take care for now!

- Kip, Tia, Riley, and Baby E -

p.s. I really do hesitate to put this in here, I don't want to leave on a bad note. Tuesday afternoon, Tia and I were in Ethans room. I had left to go get some drinks for Tia and I and noticed that in the room that Ethan was in for the "viewing" they had another baby, TONS of doctors, TONS of nurses, and everything was all draped off. One of the nurses told me that thay had two little babies that were just born (premies of course), and one of them was the one in the room. She was telling me this as I was washing my hands and getting gowned up to go back into Ethans room. After I got back into the room, about 2 minutes later, Baby R's mom came in just absolutely sobbing! I went to her to give her a hug and asked what was wrong, she told Tia and I that as she was getting gowned up, she overheard the doctor in that first room announce the babies time of death. From what I gathered, the baby could not have been more than 1/2 hour old. It made sense to me now why when I went to go get the drinks that there were so many people in the waiting room crying. How devestating for that family! I think this time, you can give our prayers to that family. They need it WAY more than us right now! I tried to ask our nurse yesterday what happened, and because of HIPAA, she could not say anything...understandably.

p.s.s. Two of Ethans roommates have been able to go home. Baby K and Baby Z are now at home with their parents. We are very excited about that. We are friends with Baby K's parents (My sister actually graduated with the mom, so she ends up being a long time friend of ours), and she says that Baby K is doing great. We don't know anything about Baby Z, but our best wishes goes out to that family as well. Baby R is still having a rough go! Every time they get him to a stage that he might be able to go home, he slips back into a stage of intese care. We are really good friends with his parents, and they are struggling much more than us. They have been there since May 15th and there is no end in sight for them. They stay positive as much as they can, which is good. But it is just a mask, and Tia and I can see that!

Ok, that's all!

Baby Ethan Visit 10/19/08

Hello Peeps!

Please remember that today we are having our Baby E "viewing" at the Deaconess MC NICU from 1-3pm ONLY! The unit has been very accommodating in helping us set this up, but while Ethans nurse is in the viewing room with him, they need to find a substitute for her other baby she is caring for. So when 3pm comes, she needs to get back into that room to relieve her substitute.

Also, Ethan will be hooked to a bunch of machines that helps him breath, feed, give nutrients, and give medicines. It can be all overwhelming at first, but don't be afraid, this little guy is TOUGH!!! Grrrr!!!! Just know that most people we take in there for the first time tell us that it was really hard to see and get used to! Just want to warn you all!

Anyway, I am excited to see you all again, for some it has been FAR too long! The directions are posted below just in case you may need them again!

God bless every one of you, and thank you all for your continued support!

- Kip, Tia, Riley, and Baby E -

DIRECTIONS:
- We take the Lincoln St exit and turn right at the first light (I believe it's 3rd st)
- Stay in the right lane and turn right on Wall St.
- Take a right on 5th st.
- The first entrance you come to is the one you want to take. The bulding on the right is the Mother Baby unit. That is the entrance you need to go in
- If you follow the driveway around to the right you will enter an extremely small parking garage.
- In this parking garage you can park ANYWHERE you want except the Neonatologists parking. This garage is not patrolled by security because they know that parking is limited. You will not get any sort of ticket if you park in a spot that is not designated for you. JUST PARK ANYWHERE!!!
- Go in through the front doors and take the elevator to the 3rd level. Make a right out of the elevator, make a right at the hallway (a large fish take will be on your right), and go through the double doors. When you look to your left you will see another set of double doors that will say check in with the staff. You can do that if you want, but there is no need. To the left of the double doors is a small waiting room, that is where I will be, and that is where you will need to go!

If you need more directions, please feel free to call me.

We look forward to seeing you all there!

Take Care,

- Kip, Tia, Riley, and Baby E -