Well, lets see. What is new. I know its been awhile since I have updated you, but honestly there isnt a whole lot to inform. Cadence still is being completely tube fed. She is still hypo metabolic and needs 2614 calories a day. We have been here for 12 days and Cadence has gained 3 pounds. The doctors have now prescribed 5mg Zydis for the anxiety towards her eating in the hopes that by today or tomorrow she will want to start eating on her own. Last night she did ask to eat, however it was not time to eat so she had to wait until the morning. Dr Moshtael gave her ample opportunity to ask for something to eat for breakfast and Cadence refused, showing she is not quite there yet. I have a feeling it will be a long afternoon, once she realizes that she has to wait till tomorrow to get food. Her attitude leaves much to be desired. She must think she is at the spa. The doctors say that she needs to be respectful, however, they do not want her to "like" it here. She needs to want to leave. She has thrown up another time, so the tube has gone in again. Another middle of the night kind of thing. She is taking the new medication which causes drownyness and I was still giving her the meletonin to help her sleep. So the other night she slept right through a bowel movement. The meletonin has been taken out of the equation so we havent had any of the incontinence issues anymore.
Today there is a volunteer from the RMD house that will drive visitors to the Lloyd District where there are grocery stores and a shopping mall. I am nervous and excited to get out. It is not the most pleasant of days outside. Still raining. Im not sure what I will do. Grocery shop for sure. (Usually a Jon job thing!) I know I will forget some items, but I have made a list and gosh darnit I will be checking it twice. Hopefully Cadence will not be unruely while I am gone. I just wish I had my own car here. I know it is important for me to get out and do things, I just have a hard time leaving her, especially when shes so very moody. They will call if they need me, but what happens when I try to get back? Taxi?
After having MANY people asking what they can send and insisting on something, I talked it over with Jon. We are a bit short on cash flow now being stretched through 3 states. (the house in WI, no its still not sold, the living in AZ and now in OR.) I am quite short on clothing and once we are on Day treatment, Cadence will have a dress code which is not super expensive, but I will need to get her some clothing as well. Gift cards would be a blessing. No amount is too small. It would all help.
Also if you are interested in getting a t-shit for "Team Cadence" let me know. I am going to try and see if there is a way I can showcase the shirts I designed through a website and ordered for Jon, Cadence and myself. I have heard some chatter about others possibly wanting one. I will let you know when that develops.
Well we are still here. As of today Dr. O'Toole has started treating her as a food phobic. She is now taking the medication to reduce anxiety with eating since Cadence has stopped eating. She (Dr.) is also not offering her food. They will just be giving her calories through the tube. I have a feeling we will still be here for quite some time.
Well today most certainly had its highs and lows. This morning we met with Dr. O'Toole. She assured me we were not going to leave before the problem is solved. I now have a better understanding of what exactly is going on. First off, C is a ways away from the NG tube. She told us rather than trying to hurry and get it out, we need to look at it as if it were our friend. It is helping us get C to the weight she should be. However, she is not gaining much for weight so there is another problem here. She is orthostatic pretty much every morning. She is also hypometabolic which means she has slowed metabolic activity, and her body has attempted to survive a deficit in calories. In response to starvation, body temperature, heart rate, and blood pressure decrease. To help her she needs the prescription of calories to the tune of 2614 a day. Once established, and comforatable taking in this much without the help of the NG tube, she will begin the Day Treatment Unit or DTU. This treatment is and outpatient clinic involving counseling, schooling and therapy on many levels, mostly with groups. This treatment for Cadence will be a minimum of 8 weeks.
We are here for a long haul.
I felt better knowing this information and yet overwhelmed at the same time. The bottom line is, she is going to get the help she needs and deserves.
Every meal today did not exceed a 50% completion. Every meal utilized the tube. Her spirits were high though. Definitely wanting to move around, she managed to get herself into some trouble at school with not listening and getting up out of her chair to walk around. Not so much allowed on bedrest. After lunch she returned to school and had a much better afternoon where one of her teachers and her worked out a code of him tugging on his ear if she stood up. Rather than verbally calling her out in class and having her get defensive she sees the ear tug and remembers to sit back down. When class was over I picked her up and wheeled her down to the Starlight Lounge where the activity of the day was tying and stuffing personal fleece pillows. After that we got to return our previous rentals of games and movies and check out new ones. We went back to our cell, I mean room and played Battleship. I won. Not that that matters! Eventually she started complaining her tummy was bugging her. I sympathized because mine had been bugging me as well. Just then Nurse David came in with a late snack. She informed him she was really not hungry. "Food is our medicine Cadence. Either you eat this or you will get it through your tube." She opted for the tube then asked him for a bucket. She was sweating so I asked him to take her temp. He said she was fine and got her a bucket and headed down the hall. By 7:45 my child was asleep. RED FLAG for me. She had not even taken her medication to help her sleep yet. She tossed and turned for about 3 hours. Her eyes opened and found me, then she quickly asked for the bucket. Man was that gross. especially since the NG tube now was sticking out her throat. I knew right away that our night was going to be a long one. She was given medicine to calm her tummy and within an hour they were in to give a new tube. Cadence blew me away. She did SO good. It took 2 tries since the first one got pinched in the back of her nose. She said she couldnt do anymore. But she did. She was amazing. I am in awe of my baby girl. She is growing every day. Both physically and mentally.
Well today we thought we would be done with the NG tube. Not so much. Cadence ate less than she has been for each meal today. So the tube was utilized after each meal. I can just hear Dr. Moshtael in the morning... oh, but wait! We finally will have Dr. O'Toole in the morning! It will be nice to get the other doctors perspective. Water was much better today though and the late afternoon was not as chaotic as the last two. Since being off of her ADHD meds it seems that by late in the afternoon she gets VERY crazy. Loud voice, irrational, wants to argue everything and seems to just move a million miles a minute. Yesterday I asked her why she was yelling at me and getting so aggitated. She started crying uncontrollably and said, "I dont know why, Mom. It just feels like everything is moving around so fast." It broke my heart because usually she gets so mouthy and wont explain herself, its usually someone elses fault, or someone else did this or that. She was focused on herself and what her feelings were with regards to mine. Plus I could tell it was really really bothering her. I asked her if she would like a hug and she said yes. It was a bit of a breakthrough moment, but hurt at the same time.
Today the doctor talked about the possibility of us going to the day treatment unit, but really didnt go into what that entails. Plus it all, of course, hinges on C's eating. Which seems to change daily. She is a good doctor, but I just got the feeling today that she really didnt have the time for us. I asked one question really and I honestly dont remember the answer she was gone so fast. On top of that our day nurse was not what I would call kid friendly. To do the orthos, they patient is required to lay flat on their back without moving for 2-5 minutes. I say 2-5 because it seems every nurse does it differently. This nurse was just asking for it. It was like she was provoking Cadence. Cadence would lay fairly still, not that she cant, but she is 7 and she has been stuck on bedrest for almost a week AND the meds for ADHD are now completely out of her system. This nurse would sit and if C's foot pointed or flexed after 4 minutes she would say, well now Cadence, we have to start all over again. I told you not to move and you moved. I thought we would NEVER get done. Most of the nurses will let her watch the TV because she will focus on it enough to lose track of some time... this nurse would put her head directly in the way and when C would move her head she would put her hand on Cadence's forehead and push her back. C has also gotten used to "helping" out with her routines. She likes to hold the thermometer and push the button on the end to eject the cover when its over then stick it back into its holster. You would have thought C was reaching into this womans purse. anyways, this morning set my mood the wrong way, and without Jon here to bounce my feelings off of, I guess I kinda lost it. So today was a low point for me. As for Cadence, aside from the eating thing, I think she had a great day. She didnt scream during the blood draw, she let out a pretty good cry as soon as the needle went in, but it was really short. she even held pretty still. She did argue about going to the bathroom in the morning as per usual, but she ended up going and not having to have the bladder scan. This evening when getting ready for bed she asked for her new sketch book and art kit from Aunt Clare and I told her now was not the time because I wanted her to lay back and relax to get ready for bed. Normally this would spark a HUGE fight. She didnt even blink at me. Just laid back and started relaxing. ARE YOU KIDDING ME!?! I jumped up after a minute, which took me that long to realize that seriously just happened!, and went over to her and started kissing all over her face. She just smilled this sweet smile and said, I love you too mom. I said, Cadence, I am so proud of you! She asked, "Why?" I told her why and she just kept on smiling and said you bet! I do love to toot her horn when she does stuff like that. (pretty rare in the last few years) I hope and pray that she will start coming around a little bit with her attitude (not holding my breath) now that she is becoming more healthy. I do think a lot of it had to do with her just being so past hungry, she couldnt put her finger on what was wrong, just that she was miserable, and took it out on everyone around her. I dont know. Im having a hard time relaying what Im trying to say and Im sure reading today's blog might be tricky... thanks for sticking it through till the end. Tomorrow is another day. Who knows what it has in store for us.... stay tunned
you know something that struck me as funny the last few days is how this country is fighting obesity. Im fighting for mine to gain just a few pounds! I never realized how much of the food we give her is reduced fat, lite, non fat. I have always excluded her eating times from ours, but never fed her a different diet. The food she eats, for the most part, is the food I had always bought for myself. Even the food that I dont eat which is meant for children, is low fat. I'm assuming mostly because of said epidemic. To clairify any further confusion (and perhaps any past!) I dont think I am a bad mom, or that we are bad parents. I think I am a fairly decent mom..... not too great, most certainly not the worst. I am mearly noticing things since being under such a microscope, and being given such a window to think. Its funny to me the things you realize when you are taken out of your ordinary life and routine. Things that had become mundane and complacent are brought into a new light.
Anyways the Dr is very happy with Cadence's appetite. She has put on almost a pound and a half since we were checked in. She (Dr Moshtael) thinks we will be able to remove the tube hopefully tonight and more than likely in a few days we will check out and stay at the Ronald McDonald House. At this point they are not thinking it is food phobia and they are fairly sure she has selective eating issues. She will still be observed, but at the Kartini clinic across the street. Right now, clear answers are not defined. Hopefully I will get some answers. Will let you know as soon as I do.
As of the end of day 4 I can say, Today was a good day. Blood draws are down to once a day. 6 AM. They sure know how to wake her up! They removed the food from her feeding tube last night. She is getting enough food down. So now its just water. I guess they are taking that away sometime during the night. Not sure why yet, or if the tube will stay even though they arent using it... just in case?
After our check up with Dr. Moshtael we felt pretty good. There is a long road ahead of us. But we are doing the right stuff. They really listen to us. It is highly believed the medication C is taking for her supposed ADHD was thought to be the highest culpret. Where I dont deny it had absolutely nothing to do with it, I dont think it is what is to blame. We are about another 8 hours or so from the medication being out of her system completely. Her hunger is back up. (she ate ALL of her dinner. A grilled cheese, crust and all, and a full glass of whole milk.) I know it doesnt sound like a lot, but for her, its huge. She complains about being hungry even between meals. She even falls asleep at night. Tonight's bedtime was 8 on the dot. It has been a LONG time since that has happened. We will have her re-evaluated for the ADHD with proper testing. I was rather silly to put my faith in a Dr. who supposedly knew what she was doing. Not only did this Dr. not do any psychiatric testing, but she perscribed a drug to my child that was ultimately killing her. Even during each monthly visit, I would ask, "Is it ok that she is losing weight?" "Oh, she's fine. Just let her adjust to the medication." Shame on me for not doing more homework. I wanted a solution for her in school... I didnt want to kill her. I am upset with this Dr., however, no one is to blame more than me and Jon for not reading more up on things. If there is any advice I can give to young parents, it is that. DO YOUR HOMEWORK. Get a second opinion. Never settle.
Still working on the diagnosis. We will have Dr. Moshtael again tomorrow and I believe Tuesday is when Dr. O'Toole comes back? The nursing staff here is amazing! We are truly blessed. No rain yesterday or the day before.... I worry that is coming to an end! :) Jon will be leaving today. We will check out officially of the RMDH until further notice. C is sad for her daddy to go. "He just brings a different kind of joy to the room", she said yesterday. I am going to miss him as well. The support is so great to have. Plus during the week starts parent group therapy. If the other parents agree to it, Dr. Moshtael says we can Skype him in. Hopefully that goes well. This week C will also get to start school here in the hospital. There are also MANY other activities happening. Keep checking back for all the fun details. Keep praying we keep moving up. Thank you. Thank you
Cadence's mood has overall been better. We met Dr. Moshtael yesterday. She works the days Dr. O'Toole is gone. She started off the day letting C know who was boss. C told her she just wasnt going to eat until the NG tube was removed. Dr. Moshtael said, well we cant take it out until you start eating and you cant leave here with the tube still in, so who do you suppose that is working for?! C ate 12 grapes for breakfast. For lunch she had part of a PB&J and for dinner she had mac n cheese. During a few moments she did say she was hungry. However, they can not give her anything between meals as she is following a strict diet guideline. I am not sure what the next step is exactly. I believe starting tomorrow they will remove the option of what she wants to eat until she decides she wants to eat. It is to remove any stress pressed on her about eating. I think they will also be giving her a medication to help ease the anxiety associated with her eating. They are pretty confident she does not have a food phobia at this point. I guess ruling out diagnosis' puts us on the path to finding the right one. Why wont she grow?
Hopefully she can come off of bedrest soon too.
Well I am a day late on posting for yesterday. I will try to remember and let you know what happened.
Cadence, Jon and I got to meet Dr. O'Toole. After about 3 hours of proding, peeing, weighing, questioning and answering, we were told Cadence would need to be admitted the the hospital across the street. The Dr. is concerned about a few things. One, her failure to thrve. Why? could be a few things. She wondered about renal tubular acidosis. The pH level in C's urine was very high with alkaline. It would explain her low interest in food and her not growing. It could be a food phobia. But her brain is so very malnurished it cant make rational decisions about food. So first thing is first. Administering a feeding tube and "re-booting" her system. Two, she is concerned with her medication. She is ceasing her medication for ADHD. It is not important at the moment and also hindering any hope of appetite. We will revisit that later.
At the hospital an IV is introduced. Not a favorite. They also did an EKG. But the kicker was the feeding tube. This put Cadence into hysterics. She cried and yelled for a good hour. Yelling to go home. It was awful. It still is not the best thing, but she is getting more used to it.
By evening the Kidney Doctor came in and said after reviewing her case, he is not concerned with any sort of failure. He explained that people who eat meat tend to have a urine pH on the acidity side. Because C doesnt eat meat.... that would explain the high alkaline level.
Now we are playing the waiting game. Jon will be leaving to go back to Arizona on Monday. Currently he is holding our room at the Ronald McDonald House by sleeping there. The people and facility are amazing to say the least. Hopefully by Monday night I will be able to leave C overnight at the hospital and sleep on a bed again. As much as I hate to leave her, I dont see being much good to her if I cant move and am sleep deprived.
The nurses and hospital staff are great and they offer so many things I didnt know existed. Movie and game rentals. School. Activities. We met a great girl yesterday who is the "art therapist" here. I think that would be a cool job. She seems to love it!
For now that is it, I believe. Thank you for your continued support and prayer. We will take all we can get!
Well we couldnt get to Portland when we had originally scheduled. Jon, Cadence and I will be leaving tomorrow, the 3rd of March for Cadence's Friday appointment. We will check into the Ronald McDonald house sometime in the late afternoon and maybe get to see some scenery. Then its resting up (hopefully) for the big day. I am eager to meet Dr. O'Toole, but nervous about what will happen. Will I get to take my baby back to the RMD house with me? What will I do if they admit her?! I guess I have to try not to think about that since there is nothing I can do about it now. I am thankful Jon will be there. He will be leaving on Monday though. I am praying this will be an "easy" fix. Maybe we will only be out for a few weeks! That would be amazing! Cadence has agreed to let us take pictures along the way to check our progress.
I'm not sure what I was expecting to feel, but this was not it. We were told that the clinic in Denver would not be a good fit for Cadence based on there not being a "support system". Their youngest patient is 15. They referred us to a clinic in Portland. We started the process over again including a 27 page questionaire mostly dealing with family history. Then there was a fiasco with insurance, but alas... the clinic has decided our case is one they are willing to take on. Now that we have a date set to meet the doctor I've been told can help us, I just feel more nervous than before. Not knowing where we are going or what is going to happen is driving me crazy! I am also nervous that I am going to be expected to know what the doctors are saying and making decisions alone.
Thursday Cadence and I will board a plane to the Kartini Clinic in Portland, OR. It's a one way ticket. I have no idea what to pack. How long will we be there? I dont have any answers and Cadence is (rightfully so) scared. The only thing I have been able to reassure her with is that mommy will not let anyone hurt her. I dont know if she will be admitted and if I will be able to stay with her. All I know is that Dr. O'Toole is considered one of the leading doctors for pediatric eating disorders in the country. I pray I can stay in one piece.
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29862 N Tatum Blvd. #2038
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