Follow up with peds dr...

We took Ellie in to see our favorite peds dr in this local area and filled him in on everything that has happened since her surgery and the results we have gotten back to this point. I even let him know that since we are STILL waiting for the Neocate to come in through the insurance I was able to get some cans of formula through a medical exchange group just for the cost of shipping to get her started earlier. He was really impressed (one box arrived today!!!!).

We talked about her sore throat and low energy issues. He thinks part of this is due to her healing process and part due NPO status. We need to increase the saline nasal sprays, and the saline neb treatments as this will increase moisture to nose and throat.

He really feels once we get her off the soy based formula and on the Neocate some of this will resolve. Unfortunately, due to her complex medical issues he said to expect the waves of energy and exhaustion to continue. He was  not surprised or worried that she has lost weight again especially with us just doing another bowel prep, and said that is most likely why her tummy feels so much better and the distension is almost all gone today.

The strep culture came back negative. She does have swollen glands again so he thinks something viral got her. I let him know my instructions by John Hopkins was to give the hydrocodone and mortin as soon as she complained of pain and motrin if we noticed fever. Then about 20 minutes after giving the meds realized I should have taken her temp before giving meds NOT just feeling and giving meds when I realized she felt hot.

We talked about her tummy issues and how I immediately took her off the formula, put her on pedialyte and started the bowel prep cleanse to reduce her stomach distension issues. I let him know that today she is staying on the pedialyte the rest of the day to let her body rest and finish recovering, then was going to try formula again tomorrow with the hopes of starting the new formula tomorrow. He wants me to start introducing the formula in small bolus amounts with the pedialyte and if she shows not reaction then the following day then move straight to Neocate. Get her off the soy because she is clearly continuing to react to it and he will help us work through any change over issues.

Her peds dr totally amazed on how much miralax her body needs to maintain normal bowel movements and how often we have to do bowel preps (and how much miralax we have to use) on her as if we were getting tests run just to clean her system out. she gets 3 cap fulls every morning. We have tried to separate the Miralax out throughout the day but if we do then she is not having any bowel movements during the day only while sleeping. If we give all in one dose then she has normal bowels during the day and none while sleeping.

He is puzzled by the fact that we start the bowel prep early in the morning and finish before noon and nothing happens until somewhere between 3-5am when she is sound asleep and her body is fully relaxed then suddenly everything slowly leaks out. Not an explosion or anything just a slow leak. She will totally overfill her goodnights pullup and flood her bed. The weirdest part is like her whole body has to be fully relaxed before this process can work.

I think that covers the important parts of the apt today...

Tube Feeding Diets? Really??

Yesterday while catching up on posts in Facebook I came across a rather disturbing article and story that ran on the Today Show on NBC making huge waves and not in a positive light among the feeding tube community. The article is Desperate Brides Try Feeding Tube Diet, (http://today.msnbc.msn.com/id/47061726/#.T42HoatDySo  ) there is also a video posted in yahoo titled The K-E Diet: Brides-to-Be Using Feeding Tubes to Rapidly Shed Pounds. (http://gma.yahoo.com/k-e-diet-brides-using-feeding-tubes-rapidly-080053646--abc-news-health.html )

This is nothing new. Fad diets have been around for years. Some of the most common and potentially dangerous fad diets that are very popular include the 3-day, Cabbage Soup Diet, HCG, Negative Calorie, Hollywood, and Grapefruit Diets. Now we have the feeding tube diet. The one thing all these (except the tapeworm diet) have in common is the restriction of calories. In a fad diet, the dieter is desperate and looks for the easiest way to shed pounds or the final extra pounds in the easiest way possible.

Some of the most common side effects of low-calorie diets include dehydration, muscle mass loss, kidney stones, headaches, and loss of energy, high cholesterol, constipation, bone fractures. When a high-energy person tries any of these diets and has no energy for running or even walking are they healthy?

Out of the diets listed, the most disturbing to me is the K-E Diet. Through this diet, women are losing the final 10-20 pounds before their wedding. In Florida a doctor is offering this diet for $1500. So while under the “supervision” of medical care, the NG-tube or nasogastric tube is placed through their nose into their stomach, while they are drinking through a straw. During the 10-day diet period they are feed at a rate of about 85ml’s/hour (according the video) continuously 24/7. This ketogeneic provides a daily 800-calorie count liquid nourishment lacking carbohydrates for 10 days. The body burns the fat through ketosis.

Now burning fat rapidly with minimal effort and liquid constantly going into the body to prevent dehydration may sound good. However, in reality this is not good at all. Why? Well they the body is going into starvation mode. Through the use of the ng-tube and the continuous feeds of a mere 800-calories a day she (the bride) could drop the dreaded 10 pounds of weight plaguing her body.

So why does this diet bother me so badly? Well regardless the diet plan, anytime one drops the level of calories regardless if you eat or drink the calories weight will come off. Of calories are reduced and exercise is added in then muscles will be toned at the same time. The “novelty” with this fad is having a tube shoved down your nose and into your stomach to draw attention to yourself. With this diet one can also say “oh no I am not sick, I have a down my nose because I am on a diet.”  “I am just dieting,” “or no my energy level is not normal right now because I am on a diet.”

Additionally, how can this diet be healthy when it forces the body into a state of ketosis, has no fiber, causes constipation, and causes the dieter to have really bad breath? Yes the before and after pictures may sell the diet.

So why would one really want to look into or follow a Ketogeneic diet? This diet has a real medial purpose. To find the real reason ask someone with a seizure disorder about seizures. Ask them what it is like to have seizures and how many different medications they have to take or have tried. How many of these meds have failed? What are the side effects?

There are many kinds of seizures all with differing effects. When the medications are unsuccessful with treating the seizures then the ketogeneic diet may be introduced while the child is in the hospital. NOT through a NG-tube mixed in a liquid while the child is home, at school, playing on the playground. Yes in the hospital under close medical supervision. This diet is very hard on BOTH the liver and kidneys. (funny how in the articles the liver was never mentioned). These seizure patients are closely watched to ensure they do not start showing signs of liver or kidney failure. See the list of side effects I mentioned earlier… Does this ketosis related diet really sound like a safe way lost those last few pounds just so one can “say yes to the dress?”

As a mother to two (YES TWO) children that both have had NG-tubes and then g-tubes I am repulsed by the fact that this doctor is allowing this “dieting” method. What has happened to the creed to help in all areas possible, to never cause or induce harm, to not encourage unhealthy practices?  How can he live with himself at night doing this all for the sake of vanity, the “perfect appearance” and his quick buck?

The day our son moved from his NG-tube to the PEG was a scary day for us. However when our daughter moved from an NG to a PEG we were relieved yet nervous, how would we manage 2 kids, a toddler and an infant both with feeding tubes. For our family these lifesaving medical devices have brought us sanity and hope. They have helped us to teach our nearly 8 year old son how to eat and at the age of 4 his feeding tube was pulled after 3 ½ years of use.

For our daughter, our family would not be blessed with her wonderful smiling personality without her feeding tube. To date she uses ONLY her feeding tube because she is unable to eat or drink foods. We are waiting on test results to determine if we can try to reintroduce some foods back into her life at 6 ½.

As a mother with 2 children with feeding tubes I “thought” I had seen it all and would not be bothered by this. However reading through some blogs I am very glad I did not see the actually story on this. I am one of those mothers who has had horrid comments about my young children with their feeding pumps running but crying because they were hungry and I could not feed them any faster because more food in their bodies would make them physically sick. I have had rude comments made to me about if I just took away all the tube feeds eventually they would be starving enough they would be forced to learn to eat.

I have had the stares because of two children sitting in a wagon with 2 backpacks hanging from an IV pole with their milk being pumped into their bodies. With our youngest it was not just her feeding pump, but also her oxygen, pulse-ox, apnea monitor. Both kids learned to walk with little backpacks with tubes. Our youngest now has one bag inside and often another bag outside for venting her stomach. She has tubes all over it seems. We still get the stares, funny looks, comments, sometimes nice, sometimes real questions, sometimes-rude questions.

So for me to read, “no I am not sick I have a feeding tube so I can diet” is repulsive to me. I have to watch my youngest child long for a time when she can start to trial foods ONE at a TIME again. Then we will pray she is fine with those foods and shows no food allergies.

When she does start eating foods if she does have an allergy will it be mild? Will the allergy be severe? Will her intestines back up on her this time placing her in the hospital for surgery?

When she starts eating again we will also be praying the laryngeal cleft repair that was done was successful. If not either they will have to redo the surgery, or she may never be allowed to eat foods again.

When we see the doctor next will her weight be the same, will it have dropped again, or will she have FINALLY gained a few ounces?

These are the things we parents of tube fed children worry about, not how do I get these last few pounds off. Do I look fat with these extra 10 pounds on my body? Or how “perfect” can I look for…?

Crazy busy day

Well today has been busy, yet quite productive. This morning started with my needing to call John Hopkins pharmacy due to discovering the antibiotic we need for Chantelle was not enough to cover the prescribed dose. According to the bottle we had no refills and should have had enough. Afraid I had dosed the meds wrong I called to make sure something had not been done wrong. During this call I discovered they actually owed us more medication even though the med bottles did not reflect this. Also during the call I asked about the medication bottle topers allowing for easy dosing with syringes and more syringes with caps. The pharmacist let me know she would toss in some extras for us.

Thrilled about the fact I had not messed up on the meds and even more thrilled I had found where to get the bottle toppers I really liked and would get more I set the next task of figuring out the DME issue. After speaking with the DME intake person discovered they had no idea about the needed scripts for Ellie’s supplies. With this knowledge I called the local peds dr to see what I needed to do to find out about making sure everything was covered.

I found out the date the scripts were faxed, then forwarded on to Tricare. Unable to get ahold of the local office I next called the GI office to find out if they knew anything. My next step in this task was to call the main Tricare North regional Office and find out about the DME referral, authorization dates, authorization number, our copay and the information that John Hopkins Home Health Care would need to know to verify this authorization. To my pleasant surprise everything that had been faxed in had been approved and was covered at 100% leaving us with NO copay!!!

Right now the only scripts we need faxed back in are for the feeding pump, backpack, and new formula. We have to have the backpack for sure as we moving from the Kangaroo joey to the Infinity pump.

With this information I called the GI office back and left a message letting them know what was needed to be refaxed in. I will call both the peds office and the GI office tomorrow to have both clinics fax in the scripts to make sure the scripts are received. The formula has to come from the GI office as they need to calculate the calories for Ellie, but the pump and backpack can come from either.

I finally got the Mini Buddy Bunny sent off to Bday Bears. We got Celidah from her after school drama thing, dropped by the commissary for some needed items, then as we were heading home got a call from a desperate and very confused delivery person who could not figure out how to get to our house. The sign on the road he was on said all visitors and trucks must use the 715 gate, yet his GPS device would only take him to the 22 gate. He had called John Hopkins several times asking for help and directions and only got more lost and the GPS kept bringing back to the same location. Finally, out of total frustration he called us begging for help. Unfortunately with my partial hearing loss and his accent I had a very frustrating time understanding him. Finally Frank asked, “Is he trying to deliver something to us?” He must has heard this question because he replied with, “I have medication you need.” At this I asked what gate are you stuck at? He let us know the 22 gate. We were then able to get the description of his vehicle and let him know what we were driving.

Lucky for him we were literally minutes away and could meet him to get the meds. We drove past to the first light, made a U-turn met him on the shoulder of the road and got the needed antibiotics for Ellie. Frank was able to tell him how to bypass the GPS and get to the 715 gate next time he delivers to APG. He left, and we headed home. Once the groceries were unloaded we started to rest for a few minutes then got a  call letting us know that Corbyn was returning from Washington DC from his rehearsal.

At this point Poppy and I hopped in the truck and left to get Corbyn. As we were turning on the road toward the school we got right in front of the 2 school busses. Got Corbyn, I got the needed info about the upcoming PTA meeting, talked with the principal about the Mini Buddy birthday party we are holding for Zach in May, came home and now I am exhausted and writing about my crazy busy day…

Pulmonary Update!!

We got a call from Ellie’s pulmonologist today concerning her bronchoscopies. For the first time her cultures all came back negative for bacteria, micro bacteria, fungus, and abnormal bacteria!!! The mucus culture came back positive for mild aspiration despite the no liquids and only purees. This is a HUGE improvement for her especially with her lungs.

The only real changes we are making when she returns to school on Monday is he wants her to have her Albuterol breathing treatments during lunch as she is still NPO until further notice and before she heads out for recess.

Also he wants her to have at least 4 breathing treatments all weekend and make we use her accapella device to help vibrate things out of her lungs. On school days to make sure we do a treatment before school, right after school, and right before bed again making sure to use the accapella device.

Ellie was so excited to hear that she can return to school on Monday. We had been advised to keep her out while we she was on 36ml of prednisone because she already has a lower immune system, and we did not want her system exposed to additional bugs and germs at school with such a high dose of steroids knocking her down lower. (Not to mention that she has been wiped out on such a high dose for her little body.)

Snapped this picture yesterday of Ellie snuggling with her toys while watching a movie. She has not been thrilled that she has had to stay home to recover longer since her throat surgery.

Since she already has a lower immune system and is currently on a very high dose of prednisone. Until her prednisone is gone we want to expose her to as few kids, bugs, and germs as possible.

This seems to be a good choice because even on prednisone, antibiotics, her regular breathing treatments she is starting to cough already. Not to mention the fact that she slept in until 9:30 this morning and her energy level has been lower than normal.

Very Rough Days for Ellie

On Thursday we arrived at John Hopkins Children's Center as she was scheduled to be admitted on Thursday prior to her Friday surgery/procedure combination. Since she has a bowel ileus and things do not move through her little body easily she was scheduled for a golytely clean out.

Well, we made the drive out there, sat for a while as they tried to find a room for her to do the pre-op procedures that were necessary. Nothing was available. Unfortunately, this did not help with anxiety issues she was already facing and fears over this surgery. (this was about 12:30 -1pm) since nothing was available the milk was turned off.

Chantelle is now 6 1/2, and this makes I think her 10th ot 11th surgery. She now knows all to well what the word surgery means. And this time she knew this surgery was going to focus on her throat, fixing her laryngeal cleft. For her this was worrisome and scary, because Dr S had explained her cleft was right at the larynx and the larynx sits right by her vocal cords. Hearing vocal cords, Ellie asked Dr S "is it my vocal cords that make me sing and talk?" So Dr S and Ellie had a very interesting discussion about how the vocal cords work, and how her larynx is needing help to not let food into her lungs any longer.

Well every since that discussion with Dr S Ellie has been so worried that one of her dr's may do something wrong and hurt her vocal cords making it so she cant ever sing or talk again. This fear has been such a heavy burden on her little mind and shoulders that all she could do and think about was her upcoming surgery and not being able to sing or talk again.

Then going through the paperwork with her we had to discuss the slight possibility of her needing a trach if something went wring in surgery. While we told that was not likely because she has amazing dr's, her first question was, "will my friends at school still me friends if I have that thing poking out of my neck?"

We calmed that fear by letting her know that just like we taught her class about her feeding tube, we would do the same thing and teach them about about the trach before she went back to class if that happened. That calmed that fear. At least she was at ease with that but still very worried about losing her singing and speaking voice.

Pre-surgery prep done at home since (safer in many ways) there were no beds available allowed for Ellie to be with her brothers, sisters, Nama, Poppy, and her puppy.

To get her ready I took half a jug of pedialyte, using a funnel added 5 heaping caps of miralax filled to the top (not the 17 gram serving) and dumped it in. Poppy helped me shake until mixed well. Because I had surgery on Monday I am finding many everyday things are still very painful to do. At 7pm we gave her tylonel and zofran,  and then over the next hour we just started giving bolus pushes of 2-3 ounces of the pedialyte/miralax mixture every 20-30 minutes until this gone. This mixture was in her by 7:30.

By 10 she had still not started going yet so I mixed up another dose This time I took 1/2 a liter of the pedialyte 7 heaping capfuls, (again had Poppy shake it well for me) dosed more zofran, tylonel, and both her motility meds. Then I gave her the meds, waited about 5 minutes, tried to encourage to try going potty.

Nothing... This time I gave her as large a bolus as she could tolerate every 15 minutes. FINALLY!! at 11pm she had her BM. I gave the rest of the pedialyte mixture, gave an extra zofran and tylonel dose about 30 minutes before it was due again and we sent her off to bed. She promptly fell asleep.

Her big sister had fallen asleep before we could tell them that we were having to do the colon prep and clean out at home and it had been started at bed time. They had NO warning and woke up to quite a surprise when her bowels exploded and leaked outside her pull up.

The noise the were making woke Frank and I and Nana up. We had to calm all three girls down, let Ellie know she was NOT in trouble, let Celidah and Jade know this was supposed to have been done in the hospital but they had emergency admits and had no rooms available for her, and we were given instructions on how to clean her out at home. We also had to let the girls know due to her GI and bowel motility issues nothing was moving through her little body until she was sleeping, therefore leaving her with no control at all.

Poor girls as tired as they were, I gently reminded them I needed their more than ever tonight, and Chantelle needed their loving patience. This seemed calm them down enough to get both girls working together with Nana to strip the bed, get the linens washing, and her bed remade before she was out of the shower. When her bed was remade we placed a blue pad under the sheet, put the sheet on, 2 more blue pads on top of the sheet, and a soft town over that in case she exploded again. Then for pj's she simply wore a daytime pull up (perfect fit for school cause no one notices) and an underjams (larger to hold more) over that. Good thing we had both because both were full...

Once she was  dressed for with her pull ups, and just an old large t-shirt she was more than ready to head to bed and get back to sleep. Poor girl was exhausted.

We still do not have answers as to why her ileus blocks everything up so fast and so tight. If we miss one day of miralax with her she struggles to keep things moving. If we miss 2 days of miralax she becomes impacted. We are HOPING that changing her from the soy based formula to the Neocate things will become much more manageable.

What amazed us (even the dr's) is that she really only 3 good bm's with the amount of miralax and pedialyte she had been given. How can a child weighing barely 40lbs handle over 10 caps (remember they were heaping too) of miralax and NOT be running to the potty every few minutes then not have a very raw sore bottom?

Her surgery was 3 hours long and because they were not needing to place tubes, her ears are the only opening they did not enter, explore, and take needed biopsies from.

What we do know right now is she does still have lower bronchial malacia still. The other malacias seem to have finally lessened or resolved (YAYAYAY!!!!)

We amazingly enough did get her colon cleaned out so her dr could get a very good look and the biopsies needed. Again YAY!!! but oh my the process the amount of miralax needed to get her to that point is insane! (now we know what process to do and use to get her cleaned out at home if her ileus blocks her up again...)

Oh and Monkey got to stay in the OR with her!!!! they just moved Monkey to a different part of the room then made sure to place her on the bed right beside before leaving the OR to make sure Monkey her Mini Buddy was touching her during transport from the OR to recovery, then from recovery to her room. The nurses asked if Monkey could be moved for just a minute while they moved her from the transport bed to her room bed. LOL she grabbed her monkey tight and curled tighter into a ball. So the nurses moved both Ellie and her monkey at the same time.

They did find signs of inflammation throughout her GI tract and respiratory tract.

The laryngeal cleft was fixed and no trach was needed!!! One of her biggest worries was having to have a trach and not being able to sing. (the only question is: will this be a permanent or another temporary fix?)

The surgery did not cause vocal cord paralysis like it sometimes can.

All biopsy results will be in within about 7-10 days

Daddy said this morning she is wide awake, happily playing in the play in the play room and talking up a storm. She is so happy the dr's did  not take away her voice letting her talk and sing still.

pre-op procedures delayed

Well we made the drive to John Hopkins today to have Ellie admitted for her GoLYTELY clean out prior to procedures and surgery tomorrow. However, when we arrived we waited for a while to find out what room we would be in, we found out that there was an unexpected number of admits today. Basically we did not have the option of waiting for a room to come available.

After talking with her DR A, her GI, we decided the best thing would be come back home for the night, and do another clean out as best as we can with a large dose of Miralax. This is going to make for a LONG night. Unfortunately, we started the strong Miralax at 7 and it is now 9:30 without even having to go yet.

We talked about the plan for tomorrow, and she asked if I am against a GJ-tube for her to try and increase the feeds that are digested and not just dumped back out into the ferral bags. For now we are going to have to start with a Mic-key GJ, then we will be able to switch to a AMT JG with her next button change.

We talked about placing a gj during the at the end of her scheduled set of surgeries and procedures. If they are not able to place the gj at that point they will move to the flouroscopic procedure and place the gj tube then.

At least we know the colonoscopy will happen tomorrow whether or not we can get her cleaned. Dr A will finish flushing her out then get the pictures and biopsies needed.

They are also switching from her soy based formula to Neocate, an all elemental based formula effective tuesday. Tomorrow will be a long and exhausting day for all and we are HOPING to get her at least mostly cleaned out before going in tomorrow.

Sadly the hardest part is that Ellie is now not allowed to eat anything at and can only have pedialyte now until the dr's say otherwise. This is going to be by far the hardest for her to deal with.