18 Months

18 Months

The realization of Dallas being 18 Months is exciting and sad at the same time.  When you hit age milestones, and don’t have the behavioral or physical milestones to go with it, it can get you down.  More and more I find myself thinking about all of the things he is not yet doing.  The older he gets the easier it is to see the gap.  But then I remember how many surgeries and illnesses he’s had and battles he’s had to fight and that reminds me of how incredibly strong and great he is doing.  Sure I wish he was running all over and getting into things, but he will get there in time.  Patience was never my strong suit, I think I have said that before, but Dallas is helping me dig for patience and I do think I am getting more of it. J 

He turned 18 months on December 9^th and his well-child visit was on that day.  He came in at the 38^th percentile for weight, 54^th for head size, and 11^th for height.  Pretty good for a kid titled “failure to thrive,” in his first few months of life.  His immunology labs came back and his levels are on the low end of “normal” for response to infection, but he does not respond to certain immunizations.  He was put on a daily maintenance antibiotic for that, but otherwise there is no port treatment recommended right now.  This is a good thing, but we still have the whole IV issue which will just present itself at the next “event.”

The last week was miserable for Dallas.  He got sick last Tuesday with a fever, coughing, and vomiting.  He was still not better by Friday, so he was put on a steroid and a very strong antibiotic.  He had a rough weekend and today is OK.  Still some discomfort of some kind and lots of coughing.  We are happy that he will be on a strong antibiotic treatment through Christmas, so hopefully we can have a healthy Dallas for the holidays!

Blessings to all and have a Merry and HEALTHY Christmas!!

Dallas got in about 2 weeks ago to get the immune labs drawn.  It was another ordeal, not surprising!  It took 2 people and three attempts to get the blood, but at least they got it.  They did try to keep Dallas comfortable by giving him gas, but this made him puke so then they decreased the gas for rounds 2 and 3 and he was screaming his lungs out anyway.  We do not have any results yet.

He is otherwise still a handful, but things are improving.  We have a hat that we have been having him wear all the time and this has been helping tremendously with keeping the cochlear device in place.  He continues to make good progress at his speech appointments and we can almost say for certain that he turns to his name!  It seems like he enjoys sound a lot, so I believe his new idea to remove the device whenever he can is behavior related.  He knows that we prefer him to wear it, so anytime he wants our attention or is upset, he pulls the device off.

We started a weekly feeding therapy last week.  His progress in this area has been at a standstill for quite some time.  He only eats pureed foods and drinks warm milk from a bottle.  He has done some straw drinking and barely any chewing.  Our first priority is to get him chewing.  Simply being able to toss some Cheerios or crackers on his tray would be wonderful, as any level of independence would help us all a great deal.

The new look

Laughing at Thanksgiving

It has been a rough several days for the Bauer household. Dallas has not been himself and it's definitely taking its toll. It started last Thursday when he started refusing to wear his cochlear implant device. He had been doing really well with it and hardly ever pulled it off on his own, prior to this day. I kept trying to put it back on him and he got more and more mad, so we finally gave up. Friday and into the weekend were the same story, he refused to wear it. He was also not sleeping well at night, which again, has always been a strong suit for him. He wakes up screaming and then thinks it's time to be up for the day around 4am. By Sunday morning, he was really not looking good and started throwing up around 9am. After the vomit started looking green, we became concerned that this could have something to do with his recent surgery, so we took him into the ER. They found no issues with his stomach other than it was really backed up with stool. We were back home Sunday afternoon, and Dallas has been back to eating and drinking fine. On Monday, we headed up to the U of M to try and figure out why he refuses to wear his device. They didn't have any solid answer and could only guess that he started to not feel well, so he removed anything that irritated him further. They decided to reprogram the device back to a much lower volume, to try and get him back to wearing it. Since then, he is doing OK with it. Still pulls it off quite a bit, but not screaming when you put it back on. It's all very frustrating to take these steps back. On top of it, he is still not sleeping well at night and very crabby most of the day. I am really hoping this is all related to teeth...it's hard not let your mind drift to more serious explanations when it comes to Dallas's history. I have decided to give him until Thursday to start making some improvements and if there is no change, we need to get him in and find out if there is something more going on.

We did see the immunologist last Thursday morning and the conclusion was that they need more lab work. Very unfortunate that this determination couldn't have been made prior to his surgery, so that the labs could have been drawn at that time. We know they can't just draw labs on Dallas in the clinic as they have never been successful in the past. It's no different than trying to start an IV on him. So now they are working on setting up a time for him to come in and have some sedation along with ultrasound, and their "best" vein finder, to get the labs they need.

Video below was catching something that actually amused Dallas recently!

http://youtu.be/ALhm8lvg79o

HOME SWEET HOME

Today was a good day. I do not feel so beaten. I do realize I may have made some assumptions or misjudgment in my sleep deprived state. Dallas's pediatrician was paged today and stopped by to talk about the situation. She explained the significant risks of Dallas having a port while also having a cochlear implant, plus a potential immune system deficiency. I was also informed that Dallas may be able to get treatment for his immune system through shots versus blood transfusions. We did discuss the separate issue of him simply being a ridiculous IV start as well, and she did empathize and understand the pure awfulness of the ordeal we just went through and have already been through many times. She just said we really need to think about this and weigh the risks and benefits. I expressed my concern about the immunology appointment now being in January, and she said she would help get that moved up to sometime in the next week or so. Sigh. This conversation changed my perspective on the entire hospital stay. This morning I was not looking doctors in the eyes...just nodding and not asking questions. I felt so down and upset. Now I feel a lot better, probably because I am home too, but everything made more sense upon leaving today.

Big thanks to the staff at Children's. Dallas is home, happy, and healthy.

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!