Tag Archives: Food frustrations

11 Months now On TPN. Not doing so well.

It has now been 11 months since I started back on TPN. After a string of really bad bacterial infections they started to use my port for everything. Well I guess the port did not keep out the infection or it was never cleared to begin with.

About two weeks ago I got super sick again. I would have going to the ER the night before, but in all honesty I did not know how bad off I was. By the time my home health care nurse and her supervisor got to our apartment, I was not coherent and my fever was over 105. I was hallucinating and just not in good shape. My heart rate was erratic at best and I was floating in and out of consciousness. The nurse told my hubby it would be a huge risk for him to try to take me on his own. So they called 911 and asked for a special ambulance with cardiac equipment.img_20150807_105514

I am guessing it took them hours to bring down my fever and to get me stable enough to move me to a monitored room. One step down from ICU. After a few days I was moved to a regular floor and they put in a new PICC like for the TPN They wanted to take the port out right then, but my blood numbers were still not where they should so they were going to wait till end of weekend.

Then I found out they were going to do lung biopsy day after I got home the port removal next day. I kind of told them to go to hell. I was still/am still recovering from this horrid blood infection. I am sure my Dr.s are not happy with me, but I have good reason. The dr who was going to do the biopsy is not even board certified. That to me made NO sense. With my history with procedures and things going sideways fast. Just not a good idea.

I will see my regular dr today in hopes he can get me someone with the credentials to take the port out.

I have about 1/2 a dozen or so tumors in my lungs that need to be taken out. I am not happy about the fact that Kaiser is going to be doing it. I am scared, last time was just one tumor and the surgery went sideways at the end. This time we are dealing with so many more. It just scars the crap out of me.

So I should do a bit more of an update on the family front. PA started having seizures again. So she is back on medication. We are having to home school her and this is NO walk in the park. Shann was easier to home school by far that PA is. Oh My Heck this child is worse than her sister ever was.img_20150619_173119

We have tried it now for several months now and we need to go back to regular school. She just is not doing well and is so hard on me. I am spending so much more time in bed I just can not keep up. Then the house work. I keep falling so far behind I use to keep a very clean house. Now on a good day I can hardly just keep it picked up, let alone clean.

OH!!! The best news of all!! My oldest daughter Shannon and her Husband David are expecting. Due date is July. I am excited for then, but I am not sure if I am ready to be an Oma img_037988

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Results, reflections and what it all means

A few weeks ago, I wrote about my experience with the gallium scan at Stanford and the procedure I had done. What I did not write about were the results and what it means for my future.

They were not able to use any samples from the biopsies taken from my pancreas. Apparently that is common because the needle they had to use is so small and the area was so hard to get to. There were just not enough cells in the sample. They will have to try again in 6 months to a year to be able to biopsy again. The main reason I have to wait so long to have the procedure again is my Dr. is afraid I am not strong enough at this point. The pros do not out weigh the cons. He feels I would end up in hospital for several weeks after and my health would decline.

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What they did find was I do have several small tumors (too small to biopsy at this time) as well as moderate chronic pancreatitis. Now I get to drastically alter my diet for both issues. If I don’t alter my diet I will end up very sick and not able to eat at all. I would then be hospitalized and be put back on TPN or be tube fed. Changing my diet should mean less time in the hospital. I still have and will have lots of pain when I eat and I do have to take pain medicine, but as long as I stick to the diet I am much better.

The diet I have to follow is not fun and I no longer get to eat out. I had to cut out all dairy, sugar, gluten, soy, and nuts of any kind or in any form. Had to cut out as much fat as I can (no fried food) no red meat, pork, chicken & most turkey. I can have some fish, but no shellfish because I am allergic. I can’t have tropical fruit, citrus, tomatoes, avocados and anything in the cabbage family. Also have to be carful with beans and all vegies have to be cooked well. I can have a few eggs here and there. I also have to be carful with potatoes (no skin on them) and minimize how much white rice I have (brown is preferable).

Seems pretty restrictive huh LOL… Well it is, but I am learning to work with it. When I explain to people how I eat just to simplify it I say that I eat a vegan, GF diet with no nuts. It is more complicated than that, but people seem to be able to grasp and accept that a little better.

The other thing my GI specialist told me no more over the counter pain medicine. He said it will aggravate my condition and he wants to know exactly what I am taking at all times. He went as far as to put in my chart allergies to ibuprofen and Tylenol products. Just so no other Dr. would order them for me if I were hospitalized.

He also put me back on octreotide injections to help control the Carcinoid Syndrome symptoms. This has helped greatly. It has made it so I am able to get back to doing some of the things I use to. Things like cleaning house and playing with my youngest daughter. It has made it so I am not as sick all the time.

I am grateful for this even if it s just a few days out of the week. I am not as well as I have been in the past. He explained to me that this is chronic and progressive. It is something I just have to accept. I should enjoy the good days and rest on the bad days. I should not dwell on how awful this disease is and how it is robbing my health and me of time.

So my focus now is one getting stronger and make every day count. We do struggle with bills and trying to make ends meet. That’s the other thing being terminal and in and out of hospital is expensive and well bills pile up. Pretty sure we will not be taking a vacation anytime soon or ever. I had wanted to be able to see my mom and her family again, but don’t think that’s going to happen. At least we have social media LOL…

Case of the Missing Cookies

Case of the missing cookies

The other night, I had just gotten PA out of the shower & I was in her room looking for clothes. While I was going through her drawers I found a surprise in the bottom corner of her drawer

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A mystery was solved from a few nights previous.

The missing cookies

It all started few days before I found the “surprise” was on Sunday. It was PA’s sister’s 18th birthday (yes, I feel old).  On Monday one of her friends brought a bag full of cookies to school for her. She shared a bunch with her friends and brought the rest home. After dinner she offered two cookies to PA, and she promptly ate them. As the evening went on the bag of cookies was left on the counter unattended. We did not think twice about it.

The next morning we got up and when my older daughter went to put the cookies in her lunch they were gone. We could not figure out where the cookies went. When we went to bed there were 5 cookies in the bag. I know we did not eat them, and as far as we knew PA had only had the two cookies. My older daughter went to bed before us, so I know she didn’t eat them.

Now back to the drawer. That is where I found pieces of many cookies sitting in the bottom corner of her drawer.

This is not the first time we have had this problem with her stashing food. She has done it with soy sausage, cheese, pretzels you name it. However it has been about a year since she had done it.

I did go back in her room the next day after she went to school and found what I feared.

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Found an old ham & cheese sandwich from Subway.


Also in her closet:
IMG-20130302-00017I found pretzels in the big teapot that holds her tea set.Now I am thinking I need to go through her room again. We have been lucky to this point, she has not gone back and eaten anything that has made her sick. I need to figure out why she does this.I have read a few places on line and most say it is because kids were deprived of food. This is totally not the case. I am having a hard time finding anything more on this subject. She is not overly OCD either. I am really kind of baffled on this one.If anyone has any ideas or experience or insight feel free to share.  Thank you.

A Day with PA in Pictures and A Few Words

I thought I would do something a little bit different. This is a typical day with PA. Not everything we do together, she does lots with her dad and sister. We try to do things to help with her various developmental needs. We do things a little different from many families with special needs kids, but this works for us right now.
I just thought you would like to see a day with PA my way….In pictures..Enjoy 🙂

This is what I see when I can focus my eyes in the morning.

Then I go check to see what PA has put on her “doll” the Buda.

Before I even wake PA up I need my one vice my Diet Coke.

Mornings are never good for PA so I skipped the getting ready part & went directly for “Ready For School”

On our way out to wait for the bus we walk through the garden to see if there is anything we need to pick.

This starts my time. I usually have lots to do and almost NO time to do it. I am a frazzled mom. I start lots of projects and almost never complete them. I also do try to do housework during this time. Some days I even get to go out and do errands.

Then PA gets home & it is snack time. She has a very narrow range of foods she will eat and this is about it.

We do crafts. Play dough is her favorite. We also do painting and coloring.

We also work on self-help skills. PA is just now getting to where she will put on socks and shoes. She thought her dads black dress socks would go with her Sunday shoes. Backwards no less. I had to take a picture because it was number 1 an accomplishment for her and number 2 is was so darn cute!

This is what we call “going shopping”. This is how PA will get her food. We have had to make it fun for her and interesting. I picked up this shopping cart last year when we were having issues getting her to eat and it has done the trick. We still have many days a week where she will not eat, but she is doing better.

It’s play time till bed.

Story time before bed.

Then while she gets her story we also do her medicine. We also do this in the morning too. Also includes her nebulizer treatments morning and night as well.

Before bed we also set our clothes out and get her backpack “packpack” as she calls it.

PA Sleeps for a few hours then she is up again. She gets up 2-3 times a night to have her drink, because she won’t eat the right or enough food in one day.

This makes for long days for me. I don’t sleep well and have not since she was born.

Apple Jacks Cake

Now before you go YUCK… There is a good story **laughing** really there is 🙂

It all started this morning when I was trying to get PA to eat something before the school bus came.  I went through the normal things cereal, white cheese rollup and mashed potatoes (because of the SPD, she will not eat normal breakfast food). I ended up just giving her a Pedia Sure drink because she was not cooperating.  When I went to give the drink to her, she told me she wanted to make an Apple Jacks cake. We did not have time right then and I had no idea how we would do it, being she wanted to use the cereal to do it. I told her maybe after school.  I thought she would forget, but I should know my daughter better than that.

She came home, I was in the kitchen making dinner & the first thing out of her mouth was “We make Apple Jack cake now?”  She did not say Hi mom… She wanted to know if we could make the cake right then.  After I finished making dinner & she had her bath we made her cake.

This was an experiment because I could not find a recipe using Apple Jacks (the breakfast cereal), but after tasting them, they were good and PA is happy so it does not matter. Now she wants to take them to school to share with her friends.

Here are the pictures: This one before they went into the oven. No I did not let her put them in..

What they looked like after they came out…

I could not believe it she ate them! She usually will only lick iceing off & put the soggy cupcake in my hand to get rid of for her.

P.E.C.S(Picture Exchange Communication System) book for PA

A few weeks ago, I went to a Make & Take night (where parents can go and get help making items to help their kids) at PA’s school. I chose to make cards to put into a PECS book (Picture Exchange Communication System) for her.

When it comes to food and meal times, we have much difficulty getting PA to eat. Several things come into play here. Her speech difficulties and getting her to use her words, but then understanding what she said is hard. Add to that her sensory issues it just equals to much frustration for her and for the rest of us in the family. Her teacher at school said they use the Picture Exchange Communication System to help the kids decide what they want for snack and PA does very well. I thought about that and then this opportunity came up so I had to do it.

These books are used for communication when a child is unable to tell you what they want. I am using the one I made for PA two ways. First in the way it was intended, because some days we just cannot understand her. So I have the typical pictures in the back for everyday things (tired, potty, brush hair, brush teeth etc.). In the front of the book I have all the foods she will eat or has eaten in the past. At this time, there are just 12 food items in the book. The past few weeks she is maybe eating five of the items. In the next few weeks, I will be getting more of the 2×2 cards done for the book.

I was chatting with PA’s teacher to get ideas for how I would put it together. They use overpriced heavy-duty binders. Apparently, they cost upwards of $50.00. I could have used a regular binder from the dollar store but I wanted something I could take with me. I looked for a week and just was not finding what I wanted. One night my husband needed to go to Office Depot for something so I tagged along. I started wandering the isles for anything I could use for the PECS book. I saw some business card holder books (4×8) and after thumbing through one of them, I decided maybe this would work. I did not want to spend a fortune and happen to find one on sale for 5 dollars. Even though it was not what I was looking for, I could not pass this up and had to try it.

I was lucky in that the school gave me all the Velcro I needed to hold the cards in the book. I took some pictures of it after I got it all put together. I know these books cost a lot of money. I was blessed to have this opportunity and got to thinking there has to be a less expensive more stylish way to do this. This is why I am sharing. It does not have to cost a lot of money.