It’s interesting in life how things can change on a dime. Since feeling “heard” last night, I now feel right back where we started. All the docs that were here on the night shift went home and I think Dallas’s pediatrician got word of the events and just said we are not doing a port right now. The vibe today from surgery too is that they just want to get him over this and get him home. Me, and Dallas, want to go home more than anyone, but I don’t want to be back here in a month, at 2am, with a sick child that needs an IV. The issue goes beyond a potential need for immune system treatments. The issue is that you cannot get and IV into the kid, therefore you cannot draw labs either. I refuse to imagine another round of people trying to get and IV going on Dallas.

I am exhausted from fighting. I feel like I fight and fight and fight, and today I absolutely feel defeated. We will be going home and this will inevitably resurface time and time again. I wish there was some way to get the point across; I just can’t seem to do it. Or maybe there needs to be someone to give me a good enough explanation as to WHY we cannot do a port. The reasons I have heard are lazy and from people too busy to think about it.

Dallas tolerated the Pedialyte overnight in his feeding tube. He has been getting whole milk through the tube for the past 2 hours, so he has had just over an ounce and seems to be doing ok with it. If he continues to tolerate the milk, the plan is to get him home sometime tomorrow.

Tonight, Scott and I will take Dakota trick-or-treating, while Nana stays at the hospital to watch over Dallas. I will come back up after the fun and stay the night with him.

HAPPY HALLOWEEN! I dressed up the kids together last week to get some pictures!

The afternoon and early evening brought quite the turn of events. The PICU doctor became less confident in his idea to start a central line once he had time to review Dallas’s chart in full. He got another PICU doctor on board and the brainstorming began. They were debating putting the line beneath his collar bone, as there is risk there of hitting the lung. The safest spot is in the neck, but then there was concern with intubation. They decided to get general anesthesia and general surgery involved and discussed how they would sedate him without an IV, and then the risk of the sedation wearing off before the line was in, etc, etc. At this point, I began to feel very uncomfortable with the whole idea and starting asking if this was really necessary if Dallas could potentially start eating in the morning. Then we would have put in this central line for less than 12 hours of use….seemed like a lot of risk for a not a very important purpose (just to keep him well- hydrated).

The Head of Anesthesia was paged in to come in a little earlier than her scheduled shift. She was great and was by his bedside in a matter of minutes. She suggested that she herself try and start a regular IV on Dallas. She felt very good about a vein in his foot….so we agreed to let her go for it. No luck. This was our last straw and she knew it. I felt like for the first time, everyone started to really see why we turn white when someone suggests a lab draw or an IV poke for Dallas. The proof was all over his body and all the experts got to give it a try. Also, for the first time, we felt in complete control of Dallas’s care. Suddenly my (our) voice was much bigger and held more clout that it had before. Scott and I explained how he was supposed to have had a port placed…..we no more than said the words and the anesthesiologist was adding him to her OR schedule for tomorrow. But I explained how it wasn’t that simple. We needed to get Dallas’s pediatrician and his immunologist involved and really understand the reasons for holding off on the port in the first place. Of course, it’s Sunday night and none of those people are around, but all the calls were placed and everyone is here tomorrow, so this will get figured out first thing in the morning.

As for the other issue of hydration, they have started giving Dallas an incredibly small amount, ½ ounce over 1 hour to be exact, of Pedialyte through his g-tube. They will see how his belly responds overnight and make a decision regarding eating in the morning. If he still can’t eat, and it’s decided that he does not need a port, then he will have to get a central line placed.

Sigh. That was a mouthful. We’ll see what they decide tomorrow. While I am sorry Dallas had to go through more pokes today, I feel so glad that this all happened because we have finally gotten through to the right people and no matter what happens, I think this will improve the way his treatment goes in the future….Oh, and we will sort of be sneaking in our immunology appointment early and hopefully get to the bottom of what is really going on with his immune system, if anything at all!

Another day of no food for Dallas. :( To make matters worse, we lost his IV. We tried to explain once again that he is an incredible difficult stick and they seemed to sort of listen....but we still went through the same song and dance that we always do. We took him down to the ER, since that is where their best IV starters are, and they tried twice with no luck.

They contacted the PICU, Pediatric Intensive Care Unit, and the doctor working over there today came by to talk with us. The plan is to start a central line underneath his collar bone. He has to be sedated for this and there are some risks of infection or blood clot. We don't feel like we have much choice on this one, so we said let's go ahead with it. We are hoping at this point that they can get the line in his chest; otherwise it has to go in his neck which would be less than ideal (as he would have to be intubated again to put the line in).

On the upside, the smelly child did get to have a bath today! Took a few of us to get it all organized, but it was nice to get him into some fresh jammies that were not stained with pee and bile!

The day started well, but as the day progressed, Dallas’s belly did not tolerate the Pedialyte as well as we had hoped. He was given 2 ounces of Pedialyte and this afternoon we were about to try an ounce of milk when the nurse came in and felt that his stomach was big and felt too “full.” She put the tube back on to vent him and we got a fair amount of bile out. You could tell Dallas felt much better after that, but it also meant his body was not absorbing everything properly. The nurse made a call to the doctor and they said no more liquids today, we’ll try again tomorrow.

It’s a bummer as the days here do not get shorter….it’s draining. We understand that they don’t want to push Dallas and just have to take things slowly. Patience. Not one of my virtues. Hoping for a better day tomorrow.

Here’s a picture of Dallas getting in some playtime with his auntie Jamie!

Dallas's bowels did not wake up yesterday, so he did go another day without eating. I came home last night to spend some time with Dakota and take a much needed shower!

Scott is there with Dallas and said that overnight and this morning, he noticed a few "toots" and the nurse also heard stomach movement. Today is the day! Dallas has been happy all morning and we got the green light to try giving him some pedialyte and see what happens. Dallas has never drank anything other than his milk, his choice, so Scott said he was quite surprised when Dallas downed the bottle of pedialyte!

LADD Procedure

Dallas's surgery was yesterday and things went fairly smoothly. Although, prior to him going in, I did stress that he is a tough kid to intubate and also and impossible IV start. The anesthesia DR looked at me with those skeptical eyes and pegged me as another mother who thinks their kid needs special treatment. He had a far different tone after the procedure. It took 8, yes EIGHT, attempts to get the IV going (he has all the bruises and pokes to prove it). He also noted to intubation was in fact a challenge and that perhaps if he has another surgery, they will have an ENT surgeon come to place the tube. The only change surgically, was that they were not able to do the laparoscopic approach and they had to open him up. His incision looks really good and is about 1.5 inches long. His intestines were pretty well coiled and the surgeon said he got everything straightened out, literally! They took his appendix out too.

Most of yesterday was just trying to keep Dallas comfortable. He was on a fairly high dose of morphine which eventually caused such significant desaturations in his oxygen levels that they put a nasal cannula on him to get him some oxygen. After this, they discontinued his morphine. They tried a couple of other drugs, which did not do the trick and he was restless and uncomfortable all evening. Because he only has one kidney, the pain killers that he can take are limited and usually are not the ones doctors would generally use. He usually ends up just getting Tylenol. :(

He slept fairly well throughout the night, but did not wake up a happy camper. I sat in his crib with him from about 7am until 11:30am. Every time I tried to get out, he screamed. He cried steady for the first two hours and finally the surgeon was paged in and felt his stomach. It was bloated. Sometime overnight, the nurses had closed his vent (there was a tube open/vented from his stomach to help drain stomach bile). The surgeon re-opened the vent and sure enough, tons of bile started streaming out and Dallas finally quit crying. He still whimpered on and off until 11:30, when he finally fell asleep. Because this bile isn't being absorbed by his stomach, this tells them that Dallas is not ready to eat.

He will remain vented to rest of the afternoon, and then they will try again to close it off for 4 hours. If when they open it back up, there is no bile, then the will consider starting to feed him again. This is definitely going to be a process, and we were informed that today will be or should be the "worst" day. Child Life folks did bring by a bottle of bubbles and that cheered Dallas up for a little bit. He was even kicking his legs, his signature move!

Watch him sign on YouTube: http://youtu.be/7tx3aOKUfyQ

Well, the pre-op appointment was today and we are a "go" for surgery.  However, there has been a change in plans regarding the port.  Dallas's surgeon talked to the immunologist and they decided that they are going to hold off on the port for now.  While this is frustrating because we'd prefer to get it done now, the reasons behind it do make sense....I think.  They want to try Dallas on the IV blood treatments for about a year and make sure that they work for him before they place a port.  The part I do not like about this plan is that starting an IV on Dallas is like mission impossible.  It has taken up to 1.5 hours to get an IV started on him, and that's while he's sedated.  I am trying to keep an open mind and I will see how this all goes before I throw a 2-year old tantrum.  The port would just be much less pain and heartache for all of us....but if the treatments don't help him, then we'll be glad we waited.  The bad news is that our regular appointment with the immunologist was of course scheduled for this Thursday at 10am......right during surgery. :(  So, the new scheduled date is January 5th.  Another 2.5 months of waiting, not to mention 2.5 months of cold/flu season.

Dallas had an exciting appointment with speech today.  We are still in the early stages, so at each session I try and distract him with a toy and then the speech pathologist will make one of the LING sounds and try and get Dallas to turn his head and look for the sound.  The sounds are "ah, ee, shh, sss, mmm, and ooooh."  He will generally turn to 3 of the 6, but today he responded to ALL of them!  We were clapping and so was he.  We really needed this today.



Can't you see I am at a tea party?  Pick me up please!!!



 

New haircut!

 


Bath time!  My FAVORITE thing to do.





Gimme the spoon, I can do it.



It's a beautiful day!



I get by with a little help from my friends.



Dallas's surgery has been scheduled for Thursday, October 27th at 9:15am.  He will have the Ladd procedure (to correct the malrotated intestine) and also have the port placed.  The Ladd portion of the surgery will involve taking his appendix out and then tacking down(for lack of a better word) his large intestine so that it is not at risk for twisting (a normal intestine tacks itself down during the first 4-7 weeks in utero).  Dallas's intestine is currently floating around and his body has made an attempt to tack itself down by creating useless "bands" near the top of the intestine.  These bands will need to be removed which causes such a significant amount of swelling, it takes several days for the intestine to recover and begin functioning again.

The surgery itself is scheduled for 2.5 hours.  His hospital stay is estimated to be about a week.  If things go perfectly, his stay could be as short as 4 or 5 days. 

Upper GI Results

Dallas had his Upper GI this morning and the radiologist confirmed the findings from the dye study last Tuesday.  His intestine is in fact malrotated.  I did ask the radiologist why his Upper GI at birth was normal, since it is my understanding this is something you are born with, and she said she could only guess, but it was probably just missed or it was at just the right angle to make it appear "normal," when in reality it was not.

We believe he will have to have the Ladd procedure to correct the problem. (I have researched this surgery online, but don't want to explain it until I get confirmation from the surgeon...)  The radiologist was sending report to his pediatrician and we are just waiting to hear back regarding meeting with a surgeon.  This finding is frustrating to me as there have been signs of potential GI trouble.  I did mention the events at his 1-year checkup which lead to the immune system check, but GI wasn't considered (probably because his upper GI at birth was "normal").

My chest feels heavy over this one, but I keep telling myself, THANK GOD Dallas pulled his g-tube out on Tuesday morning.  We are so lucky that this was caught and hopefully will get corrected before his intestine actually twists and creates a block causing very serious trouble for him.

The Implant

I would say the "equipment" necessary for Dallas to "hear," has been our biggest challenge over the last 3 weeks.  If there was a magical way to keep everything "ON" him, that would be wonderful.  It falls off 50 times a day.  It has added another component to everyday life and it is taking some getting used to for everyone. 

It's not only a challenging transition for us, but more so for Dallas.  It's a whole new world for him and he has to learn how to listen and respond to sound.  The first step has been teaching him to "detect" sound and then respond.  We have been learning ways to encourage a response by making it rewarding and exciting for him.  It is not as easy as many would think....this will absolutely be a process.  We have made the decision to go cochlear (as I have been calling it) and do not regret it, it's just far more involved than we ever could have known until we are incorporating into our daily life.  Both school staff and hearing team at the U of M seem to be encouraged by how Dallas is handling everything so far.  He has been through 10 different programs and many volume increases and so far he has been tolerating it all without a fuss.  He has his first round of official sound booth testing this Wednesday.  They will simply sit him in a chair in the middle of the room and present sounds to see how he responds.

This is the device pictured above.  The round piece is attached via the magnet that was placed under his skin.  The ear piece is the processor, and the portion clipped on his shirt is the battery.  The sound goes into the microphones on the processor, processes the sound and sends it to Dallas's brain through the piece attached via the magnet.  Technology is amazing.

"Exciting" Morning

Dallas, Dakota, and I were watching cartoons and playing in the living room this morning when I noticed Dallas's entire g-tube laying on the floor.  Yikes!  He pulled it out.  It was 7:30 am and by the time we got into the ER and had it replaced it had almost been 2 hours.  They had a little difficulty getting it in, but all went relatively smoothly.  There was a dye test conducted at the end to make sure the tube was in the right place, which it was, however, there is now speculation that his intestine is malrotated.  The Upper GI study done when he was born showed no indication of intestinal issues, and since this is a condition you are generally born with, we are scheduled to have a repeat Upper GI this Friday morning to confirm/deny the diagnosis.  If his intestine is in fact malrotated, he would have to have something called a Ladd procedure to correct the problem, but we are not going down that road until after the test on Friday.