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.

One surgery done!!!

Well surgery went good today, and I actually came home today so even better!! The only complications we faced is I did not wake up from the anesthesia as quickly as wanted (according to Frank) and I have at least 2 more medications to add to my drug allergy list.

The pre-op prep that was used is called Sage Prep, and has chlorhexidine in it. Using the Sage prep use a baby wipe type cloth and rub the down the surgery area for 90 seconds with each wipe. We some redness is normal. However for me the redness kept getting redder and within just a few minutes my stomach looked like it was badly sunburned, and the few stretchmarks I had were swelling. Not only that I had sunburn look up my neck, behind my ears, and by the time the benadryl came but I had already been fighting to scratch the painfully itchy areas for nearly 15 minutes. They had to see if this was just a reaction or a true allergy. The dr came in and said mark this down as allergy as the redness and flat hives are spreading to her face.

The anesthesia team did a great job making sure I did not wake up this time. However, this is the 2nd time in a row waking up was difficult for me.

Then in the PACU after the surgery they gave me some fentanyl for the pain and within minutes I in burning hot stabbing needle itching pain once again. This time in the process of trying to scratch my legs I caused my stomach too hurt worse. I tried so hard not to scratch, but was on so many meds that I had no control over what my body was doing and the nurse would not let me fall back asleep like my body wanted. Once again I was given more benadryl via the IV. This helped some but not totally

Ugh my allergy list is growing longer than my med list... Sigh...

Tomorrow is Ellie's pre-opt with her peds dr
Thursday is her admission and Friday her surgery..