Eat Happy!

Eat Happy!

Disclaimer

**The information provided in this BLOG is in no way intended to diagnose, treat, or cure any illness. This information should never replace the advice of a doctor. Please use this information as you see fit. This information will pertain differently to each child, each adult, and each family.**

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Tuesday, August 14, 2012

A CHOP & A Wiggle

Monday, August 6th, Ian was discharged from CHOP. He is on a very similar feeding recipe and regimen as before the surgery, but some progress has been made. His healing is progressing very nicely. Peak inflammation is 10-14 days after surgery. We are officially past those days and hopefully swelling is subsiding more day by day.

Ian seems to be trying to eat more readily now. He has been trying chips, Cheerios, spaghetti, Cheez-Its, and all kinds of things. Tom and I are going on a shopping spree this weekend to get him on a Glycemic Index diet. Ian needs to be eating to stabilize his blood glucose. The Glycemic Index is actually a very healthy way to eat....... needless to say Tom is not excited! While we don’t have to do a complete overhaul, I think it is important for us to follow the same eating rules around Ian for most of the time. We want to make sure we are teaching him to eat with the foods that are good for him.

Trying some Vegetable soup at CHOP

Yummy soup!


Our first follow-up at CHOP is Thursday and hopefully we can get a great report. We are also going to be discussing Ian’s weight gain and calorie intake. Since the little tike hasn’t gained any weight or grown in 5.5 months, we are a little concerned. Despite his vomiting, diarrhea, and active lifestyle..... he is still behind.

Once home from CHOP, we only had about 5 days before Ian had a fun event planned. Months and months ago, long before the surgery was scheduled, we purchased Ian WIGGLE’S Concert tickets. He enjoyed watching the Wiggles sing and dance. Three of the four are retiring from touring this year. Ian loves them the way they are, so we thought we would give him a treat. 

Wiggles Farewell USA Tour: Hershey, PA 8.2012


I’ll make sure to follow-up once we hear more from the surgeon on Thursday. So far, Ian is doing very well and making good progress. (Somewhere inside I am still waiting for the other shoe to drop) I hope things can stay on the up-spiral.... we need the rest... although we are always thinking of those struggling and those experiencing less fortunate days than Ian. As we left CHOP, I was reminded of all the beautiful children who were not going home that day, and those who need continual prayers and hugs. We are only one of many families struggling and the roller-coaster goes on.........

Sunday, August 5, 2012

A Light at the End of the Tunnel- A Close to CHOP

After yesterday afternoon’s successes, we were skeptical about today. As history would say, what works half the day, crashes the next half. Fortunately, today was a change in the pattern. Yesterday afternoon’s 3pm and 6pm feeding went very well, today’s feedings went well also. This is fantastic news. The only glitch was one feeding, Ian seemed to dump a little more. All his sugars had been 65-110 with the exception of one 143, followed by a 56.

The 143 signals a dump of food that elevates the glucose in the blood rapidly and considerably. The 56 thirty minutes later is no surprise. After a large “dump” of food, the insulin surge overcompensated. If the sugar is below 60 and Ian has no symptoms, which he didn’t, nothing needs to be done. If symptoms had been present or it dropped below 50, we would give him sugar-water to bring it back up.

All in all, the day was a medical success..... finally. This means tomorrow discharge is looking better and better. As long as all goes well tonight and tomorrow morning, the light at the end of the tunnel should be approaching very soon.

With a visit from Nana and Pap, Ian seemed to have laughs and smiles, despite his bruised and scabbed toes. He took many trips to the atrium where he played with some toys and pointed to lots of shapes on the tile floor. He ran around and looked as though he was trying to escape a couple of times..... not that I blame him! Tom and I have seen “the outside” twice since our arrival one week ago. I am sure many families go much longer. It begins to mess with your mind.

The atrium has two very large, tall glass enclosures with all kinds of colored metal tracks for small balls to roll around. There are different paths for the balls depending on how they fall on other parts of the path. it is very cool. There are cranks and buttons which release other balls onto other parts of the toys. The paths have gongs, bells, and metal pipes. When the balls fall a certain way, they set of the noisemakers, echoing in the atrium. The kids love them. 



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 CHOP atrium toy


Ian has taken a huge liking to an Elmo Microwave toy from the playroom. He likes to take it on all of his wagon rides. He is still cruising for and schmoozing all the pretty nurses. Everyone seems to comment on how cute he is. Overall, things seem to be steering in the right direction.... however, that has fooled us many many times. We are trying to think positive. Tomorrow morning, our Dietitian, Robin, and Dr. Blinman will be in to visit. Assuming we get the go-ahead, tomorrow should be “D-Day,” discharge day!!

Cupcake Anyone?

Saturday, August 4, 2012

Sugar-Go-High.... Sugar-Go-Low....

This morning, we all awoke starting the day fresh. Ian had an excellent night sleep and was happy. This means Tom and I also got a good night sleep... thus making for happier Mommy and Daddy. Today was the trial of Plan B for feeding routines and recipes. Yesterday morning’s gold standard trial was an initial bust. Plan B worked well yesterday afternoon, and we were feeling hopeful for this morning to be the same.

I know it is important to always have hope and stay positive, but it seems whenever Tom and I feel like something is “in-the-clear” or we have taken a huge step... our happiness is quickly shattered, then that thick feeling like a heavy blanket comes over you. Unfortunately, even though Ian’s glucose levels stayed between 239 and 79, (perfectly normal for the intervals it was taken) the second trial this morning was not as successful. Ian’s numbers began fine, and then at 90 and 120 minutes after feeding completion, he dropped to 65 and 50. Ian’s safe cut-off level is 60.

Plan C quickly came across the plate and we took a good look at what was next. Fortunately, Tom noticed it was very similar to the pre-op recipe and routine. The only changes were more pectin than pre-op (to slow movement down) and .25 tsp more of corn starch per meal (to slow digestion). Ian’s daily meals and overnight meal were going to be the exact same dose, but at a slower rate. This didn’t seem right because if Ian was doing fine on what was going on before pre-op.... why would be moving backwards now?

After speaking with the Dietitian again, we made a few tweaks she said she would be comfortable trying. We left the recipe the same, but increased the rate overnight. Since the time was the same, Ian would be eating more food overnight than what Plan C would have given him... thus giving him more calories. She also said we could try increasing his daily rates to 45 minute feedings instead of 60 minutes. While this would not increase calories or volume, it would allow for less backpack-wearing time during the day.


*****If this sounds confusing, trust me, it is!! I have done my best to break it down and organize it so it flows in the mind. I have re-read this over and over all day to make adjustments. While it may not become crystal clear, re-reading down help... of course if you are ME, you make an excel spreadsheet with has every single number, glucose level, and detail about Plan A, B, and C. But hopefully none of you are as neurotic as me.... especially since it is someone else’s kid!! Without the organization, it is hard to ask the right questions and make the right comparisons to point out to understand.***** 


It all boils down to the result that Ian responded superbly to Plan C both this afternoon an this evening. All of his glucose levels were between 65 and 100 which is practically perfect. The goal for Ian is to be between 60 and an unidentified high number, LOL. The number below 250 or so are acceptable depending on how recently he finished eating. The important thing for Ian is the low threshold and not really the high... as long as it isn’t creeping toward a ketoacidosis of 300+.

As I put together the spreadsheet earlier today, the underlying details became more clear. Ian’s issues tend to be with high volumes and high rates, and not so much higher densities of calories per milliliter. By adding extra corn starch and microlipids, Ian has more calories, higher density, and more longer fats and sugars to buffer the blood glucose. No surprise there as that was pretty much what was going on pre-surgery. However, we have still made a step in the progress direction. He is eating an extra ounce each day, giving him 44 more calories, and upping the density as well.

After an exhausting day of glucose up, glucose down, glucose running all around... ok, so that was a little lame... we were able to find what seems to be a middle ground between pre-op and gold standard. While closer to the pre-op end of the spectrum, it is still progress. And let’s not forget about the huge progress in Ian’s anatomy and reflux issues. His dysphagia (difficulty and painful swallowing) is much better and he is eating a little bit on his own everyday now. Today he ate half a french fry, three bites of cookie, a sunchip, 4 bites apple, a small part of bacon we broke off, about a dozen Cheerios, and drank about an ounce of Pedialyte..... not to mention took his Ibuprofen and Prevacid by mouth this morning one right after the other... totaling over 10 mLs. Ian hasn’t eaten this much in a day in over a year!

He has been such a good boy despite all the hospital ickiness. He is so cranky and bored and tired. I can tell he misses his bed, his toys, playing outside, his pool, and all his books and stuffed animals. We brought a lot with us, but it is never the same. All of his blankets that once smelled like his bed, now smell like hospital bed. I am sure they have lost most of their “homey” touch. Between his wagon rides, the playroom, and lots of space to run around in the hallways, he still has fun when he can. His new thing is playing with the corded phone in the room. He loves to “make calls.”

Ironically, whenever we leave the room door open, he closes it immediately. We leave it open to get “fresher” air (hospitals never have fresh air) and open-up the space to feel amongst the non-prisoned. It is almost as though Ian is locking them out. He often looks into the hallway before closing the door. Today after smiling and laughing with a nurse he gave her a high-five, following her to the door. She stopped to speak with us once more. Ian proceeded to reach over and push her leg as if to say “Hey lady, it’s time for you to go now.” Tom and I simply laughed..... fortunately, Ian did not see this.

We will be here through the weekend now to make sure all the trials are successful for a full 24 hours or more.  Hopefully, we will be able to go home on Monday.

"Hey nurses.... My room in 15 minutes!"

Friday, August 3, 2012

CHOP Photogenic Moments from 8.3.2012

View from Ian's window

View from Ian's window

View from Ian's window onto the streets below

View from Ian's window onto the corner address: 34th street and Civic center blvd.

the sunlight through the colored glass panes paints colors on Ian's bed

Fun with Bubbles

"Noodles Nissen," Ian's G tube Build-A-Bear

Munching

Thinking about breakfast this morning

Playing where he shouldn't be ;)

Sitting with toys

View from Ian's window

Feeding Daddy today

Munching on a Spoon

Resting earlier today before the madness began

The Good & The Bad

If any of these terms seem to be unusual or extravagant, I do have a Glossary page to help understand some of the lingo I am not able to make a little simpler.



FEEDING

Yesterday was a great day at CHOP. We made a lot of advances in the feeding routine. We were trying 2/3rds the volume and rate as the goal before discharge. Ian tolerated the one hour trial of 105 mLs perfectly. We moved the second feeding to 50 minutes, the third to 40 minutes, and still.... perfection. Ian was responding exactly how we needed him. The fourth and final feeding ran for 30 minutes. Ian did perfectly again. No signs or symptoms of dumping or overfeeding.

Overnight, another feeding ran for 7 hours exactly at 2/3rds again. Ian had no troubles and we were cleared to move forward to full strength and full volume today.

Apparently, too much of a good thing....... turns into a bad thing...... well, for today at least. Ian’s body and tummy accepted the first 155 mLs feeding wonderfully and we had no retching or gagging, or vomiting. However, at 30 minutes past finish, the glucose sticks began. Ian’s first stick was 134. This isn’t bad, but not exceptional..... as it was a little high. At 60 minutes, another stick was done. This time, we were not so lucky. Ian’s blood glucose was 45.

While this is not detrimental, it isn’t acceptable either. once blood sugar levels reach the 30’s high risks of seizure and brain damage can occur. Within 30 minutes, Ian’s sugar had dropped 89 points. This is huge. Ian’s tummy was clearly dumping the feeding. To refresh, the stomach cannot always “remember” or regulate how it empties after gastric surgeries. Sometimes children grow out of this and sometimes they don’t. It’s a 50/50 crap shoot. This is called late-dumping, or post-prandial hypoglycemia.

The feeding recipe we were trying was similar to what we had before, but had no cornstarch or pectin added to help buffer blood sugars. This trial was done to see if Ian really is dumping. According to yesterday’s events, we were good to go. However, once the volume increased, the dumping began. unfortunately, we cannot simply go back to the volume of yesterday. That volume would not offer nearly enough calories or protein-fat concentrations.

After the low blood glucose, Ian began another feeding right away to help pull up the sugar. This was only a brief and temporary fix while the dextrose water was arriving. The dextrose water comes in small bottles in hospitals like Pedialyte does. We were able to push 25 mLs through the G Tube to bring his sugar back up into the 120s after 20 minutes. As we proceeded to the next feeding, once the temporary one was stopped, our Dietitian returned to update us on the new plan.

The new plan is very similar to both our original and the attempted plan. We seem to be floating in the middle. We are back to adding corn starch and pectin to buffer the blood glucose with longer chain sugars and slowing the process down... but we are sticking with the same increase in volume and calories. This will give Ian an opportunity to grow while still keeping his sugars buffered and safe.

It seems as though Ian will be following a “diabetic” or “ketogenic” diet for most of his life, unless he completely outgrows the late-dumping, which is not likely in his surgical position. Even though we may be tube free down the road, Ian will probably always need to be a “grazer” and focus on what simple versus complex carbohydrates he eats. But the ketogenic-diabetic diet is another day’s post.

After Ian tried the second round of feeding with blood sugars, glucose sticks were taken at 30, 60, 90, 120, and 150 minutes afterwards for mapping. At 30 minutes, Ian’s sugar was 240..... not what we had planned, but nothing detrimental according to the doctor on call. He mentioned that if we took our blood sugars within 30 minutes of eating that we too would have high numbers such as these. At 60 minutes Ian’s sugar was 140 or so. This is a much better number than 240, but not a big enough dip to show dumping, because the number is certainly not considered hypoglycemia.

When the sugar was checked at 90 minutes it had raised to 177. This is from buffering and also from the fact that he had a few Cheerios in between :) Once again, no room for alarm. At 120 minutes his blood glucose was 89 and at 150 minutes, 107. This trial was considered a success.

Overnight will be a bit different. Ian did very well with the continuous feeding overnight at a higher volume than the daytime feedings. Tonight, he will be getting one continuous 8 hour feeding instead of a 7 hour feeding. This will help his sugars and increase volume. he will have the pectin in overnight to help slow the entire progression of the food through the stomach and intestines, but no corn starch. The corn starch is needed more for shorter, more bolus type, meals.

The plan is still to use the Peptemen Jr, water to dilute to a good osmolarity (density), and add the long chain fats (Microlipids) and long chain sugars (dextrose- corn starch). the pectin is OTC and will help make the food more “molasses-like” in order to slow the process down completely.

Tomorrow will bring new food challenges. In the morning, one hour after he finishes his overnight continuous of 8 hours, they will check sugars again to see if things are stabilized. If all is ok, we will have another meal or two here at CHOP and then be able to come home. If things creep up again or we don’t do well overnight, that plan may change. Poor Ian’s toes look like they have Chicken Pox because they are covered in little red spots and scabs. We have been giving lots of toe kisses and having toy playtime!


SURGERY

This morning, when our Dietitian was visiting, we found out that not only had the Nissen slipped and then herniated, but it had twisted as well. The way she spoke of it implied that there was no way Ian was ever going to be able to learn to eat with it being the way it was. Imagine the stomach, clamped at the top, then having that clamp slide almost halfway down over onto your stomach..... then push 2/3rds of that up through your diaphragm, and then twist it all around. The only image that comes to my mind is a balloon animal!!! Thankfully, all of this is gone now and we can make progress. Despite the sugar issues right now, Ian has not retched, gagged, or vomited once! This is incredible and a huge step forward in our book, and in Ian making eating a positive experience.





Ian spent most of the day being clingy, interspersed with moments of laughter and squealing. he can go from high to low in a matter of seconds and sometimes even laughs and cries at the same time. His naps were interrupted by lots of needles and he very much needs a good night rest.

His G tube button site is very inflamed. This is not a new site. The G tube stoma was able to be kept in the same place, thankfully. However, since the site was used as the 5th laparoscopic access point, it is irritated. He also enjoys sleeping on his belly which as irritated it more. Right now it is very red and inflamed and incredibly tender. It does not look infected, but seem to be very very sore. The doctors are going to see what it looks like in the morning, after using some special split-IV gauze over it tonight and decide whether to use some Nystatin powder to help it clear a bit.

Trying to clean and dress a G tube, and then place an overnight belt and extension, on a very sore button is never fun...... especially since he has already been stuck over a dozen times today for glucose checks and is beyond cranky.

The day has come to an end and we have said goodbye to our nurse from the last four days. She was exceptional. Her kindness and caring was always reassuring. Ian even gave her a hug goodbye and a high five, despite the dozens of blood sugar sticks, IVs, button checks, IV checks, and overnight vitals.

I once again sit in the hallway filled with windows, looking out onto the streets of Philly. We are on the 4th four; the building has eight. I am able to see the green, purple, and pink glass panes in the front of the hospital, surrounded by huge glass walls. At night, the hospital lights up the colored glass panels with colored lights. The reflections are beautiful and can be seen from buildings all over downtown since the building is so high. The space and light between them brings a lots of quiet and peacefulness to the hospital. We are very blessed to be able to see these from Ian’s room. 

CHOP at Night


I was very thankful today to have my anchor tattoo close by. It is times like these that I wanted it in the first place. It is very easy to reach over and touch, to look and see, and to feel so close. there were times today when Tom and I both needed breaks. I was able to stay for the medical concerns, while Tom took a breather; then he helped with sleepy time while I could come and write about the day.

When the night comes, and all begins to get quiet in the hospital, I enjoy watching the town below become quiet. Unlike lots of other cities, downtown Philly near the hospital becomes very quiet at night. Most of the surrounding area is medical... CHOP, offices, PENN, the campus and such. Having the quiet time gives me a chance to recharge for the next day. I don’t know what tomorrow will bring, but I hope it holds more laughs than tears, more successes than failures, and more happiness than sadness for all of us here spending the night in the hospital with our littles ones.

Wednesday, August 1, 2012

Music Therapy CHOP

This morning Ian was able to venture down to the playroom and take part in a 45 minute session of music therapy. It was wonderful. He played the tambourine and xylophone. It was almost nap time, so the end was a little fuzzy, but he enjoyed it.

Playing in the Kitchen

Maraca fun

Tambourine with Grandpa

Xylophone Pro

Practicing Scales

I have included a few videos too:

video


video


video



Busy Day of Doing Nothing: The Day After Surgery

Yesterday was a long, busy day of doing nothing. Those of you with kiddos in the hospital know exactly what that means! Lots of visits form doctors, lots of small advances, lots of sitting around, and lots of waiting. By the end of the day, we could definitely tell we had taken steps forward.

In the morning, Ian’s surgeon, along with lots of other residents and departments came for Ian’s daily visit. They always begin at some UnGodly hour of the morning; thankfully CHOP usually begins after 7am. Nothing is worse about “news” than having the doctors come in to tell you updates and plans at 5:30 am when they wake you! You never remember anything!! One of the big things we mentioned was Ian’s pain medications. The morphine was doing nothing but knocking him out for 2 hours. That’s al fine and good, but he is allowed a dose every 3 hours. With the Toradol being every 8 hours, Ian had a lot of painful time when he wasn’t sleeping. Dr. Blinman moved him over to Nubain, a non-narcotic that’s in the narcotic family...... don’t ask me, I don’t know.... ;) This new med won’t slow his gut like the Morphine. Slowing the gut after “gut” surgery didn’t seem like a good long term plan anyway. 

Ian was cleared to have oral food as desired. He was cleared for the three “S’s” as they call them...... sips, sweet, soft. He had a little juice and about 30 cheerios. He also wanted a few sips of juice and chewed on tiny bite off a french fry. Along with 1/3 of a chocolate chip cookie..... this was the largest smorgasbord of a meal Ian had eaten since surgery last fall. He was very hungry. They didn’t do any tube feedings today and will being those this morning sometime. They will be playing around with new “recipes” to see what he needs based on new dumping patterns..... or lack of them. They will be testing his blood glucose to feel out the new plan.

Ian did sleep better last night since there were fewer interruptions. He even is sleeping on his belly now and seems most comfortable that way. He still draws his little legs up underneath him like a little bug. He enjoys snuggling up to and even lying on his little Gloworm. He likes falling sleep to his little light-up face. I have been staying in the bed with Ian. Somehow, children always migrate to the middle of the bed.... no matter how big the bed. I end up being smashed against the side. Thankfully I can put the rails up...... I might get pushed off without them!

Ian was able to get out and walk around yesterday, and even took some wagon rides. He began his usual schmoozing of the nurses. Most of the CHOP nursing staff is very young and super cute.... Ian has a blast with them! I can’t say my husband is complaining either!! With my “super-adorable hospital mommy look” (haha) of two day old hair and sweatpants, it’s a little rough in my book. ;) But, they are wonderful to Ian and to our family....... so who cares!? We have been so happy with the nurses. Some of the others simply barge in and make lots of noise at all hours of the day.

The hospital has BINGO everyday at 2 pm on channel 51. Ian slept through it yesterday, but I am hoping today can be a BINGO day. It would also be great if he could venture to the playroom and move around. We did make a trip to the atrium yesterday on the first floor, but not much as going on. Ryan Seacrest created a radio station here years ago. Maybe we can go watch them do some cool stuff? Thank goodness, for us “super-adorable hospital mommy looking” mommas, Ryan Seacrest doesn’t ACTUALLY do the radio station!

We continue to stay strong and feel blessed for all the support we have. I realized this morning, after discussing it with my mother-in-aw yesterday, that I am part of 11 support groups and pages online. Between fundoplication, reflux, feeding tube, preemie, HELLP, and miracle baby groups, I have the best medical support from families!

I will make sure to keep everyone posted as our second post-surgical day moves forward. Hopefully it will be filled with more smiles and laughs...... we were able to steal a few yesterday! ;)