Pics of Appendectomy incisions

She has 3 incisions from her appendectomy...one in her belly button, one up higher on the right and one down lower just slightly to the right.

They started giving her pedialyte through her g-tube last night, slowly increasing every few hours.  This morning her stomach is spasming again.  Grrr...this may be a longer hospital stay than anticipated.

Lactulose

Gastroenterology came by and urology did also.

Urology thought for now to hold the course we have been doing.  Cath her ever other day to every 3 days or so (or more often if needed).  No need to switch from clean cathing to sterile cathing and no need to add an ongoing antibiotic.  If she continues to get UTI's then changes will need to be made.  She had 1 UTI in 2006 and 2 in 2007.  So it's pretty suspicious that we start cathing and within a month she has a UTI.  They do not want us to stop cathing though.

Gastroenterology thinks the pain/spasm are probably caused by the lactulose (a med to help her poop).  So we will be switching to something else.  Probably milk of magnesia or magnesium citrate.  Either way we have to check magnesium labs for a while to make sure she isn't getting too much magnesium.  They do not think that the free air would be causing the pain or spasms.

They don't know if the bladder problems and the bowel problems are related or not.

They don't have any definite answers...just more of...try this new plan and we hope we don't see you in another month.

One good tip that I will now do in the future is if her heartrate is elevated (like it has been for at least 2 weeks---but I was blaming on the provera) I need to send in a urine sample.  Which lucky for me I can now do at home myself!  This could probably have prevented the whole hospital stay.  But I didn't know.  It didn't seem like a big deal and I had another explanation for it.

Naptime

The surgeon thinks the free air is from her bowels, but he does not think that her bowel is perforated.  He just thinks she has a weak spot on her bowels like a canker sore and the air leaks out through her bowels.

There was nothing wrong with her appendix, so there was really no reason to take it out, but they were already in there, so they took it out anyway.

Last night I made a list on the board of possibilities I can think of that could be causing the shivery shakiness of her tummy.

Pain from the rods (or pulling nerves, etc...)
Pancreatitis (like they suspected last hospital stay due to the Lipase being up to 3000 instead of under 150)
Urinary Tract Infection (Which she has, but could that be causing the shaking?)
Neuropathic pain
Free air (from bowels?)
seizures
And we can now cross appendix off of the list

Yesterday her stomach was shaking pretty much non-stop, even after the appendix was out.

Today her stomach is shaking a bit, but not too bad.  So maybe it was the urinary tract infection and the antibiotic is helping.  But then, why was she shaking last hospital stay and there was no urinary tract infection showing up in her urine.

She was awake for a few hours, but then she got sleepy about 9 or 9:30.  It doesn't worry me, she went into surgery at 10:30 last night.  And I'm beat today too.

On other thoughts...we probably need a new cathing plan, a new bowel/stool plan.

Could we have caused the UTI with our cathing?

I asked about he recovery for a laparoscopic appendectomy...for a healthy adult and the appendix has not perforated it is outpatient and you could be back to work in a few days and back to full activity in a week or two (whenever you felt up to it).

Pain and more Shivery/Shaky

We are on the surgical unit.

She has slightly woken up from anesthesia, but not much.  She has her bi-pap mask on.

It is 1:10 AM and I am waiting for the Dr. to come in and talk to me.  We have been handed off from surgical to the pediatric team Dr.'s (hospitalists).

She is in pain and they are going to give her some more morphine.  She is gritting her teeth.

Speaking of teeth, she did not lose her loose tooth (...yet).

Her stomach is also still doing the shivery/shaky thing.  It looks like contractions or spasms.

Laporscopically

The Surgeon (Dr. Scaife) just came out.  He said she did not have a lot of scar tissue.  He did not see any infection.  They took the appendix out anyway.  This is the best possible scenario.  I do not know yet what recovery entails, or if this will solve the shivery shaky problem...probably not.

Maybe the shivery shaky is from the urinary tract infection????  Who knows at this point.

But we can't come in with her in shock next month too.  We need answers.

The surgeon also took a sample of her spinal fluid from the shunt tubing (in the belly) to make sure it did not have an infection.

Surgery

Yes...you read that right...SURGERY!!!

Ellie is in the Operating Room right now at Primary Children's.

Let me back up a bit...

Remember about a month ago we were inpatient here at Primary's and she had some "free air" in her abdomen, then it went away?  And she also had a shivery shaky tummy at the same time.  And her Lipase was up perhaps suggesting that she had pancreatitis, but the gastroenterologists would never commit to the diagnosis.

So then we went home with a shivery shaky tummy and no answers.

The shivery shaky tummy went away.

One time about 2 weeks ago when I cathed her I got a spot of blood, but then I thought it might have been her special time of the month, so I started the provera.

(This was the plan, when she spots...start the provera...then she will cycle).

She has also had an increased heart-rate for the last week or 2, but I blamed it on the provera that makes her feel really yucky.  (She only takes the provera every 5 or 6 months).

Then this last week the shivery shaky tummy returned for 1 day, but I thought I would wait until the next day to call the Dr. and voila, it was gone the next day.  (I also thought it could have been the provera, or the time of the month making her stomach not feel good).

Well, today she was NOT FEELING GOOD AT ALL at church.  I gave her ibuprofen AND acetaminophen and it did nothing to help.  She was still grinding her teeth and grimacing and kicking her leg and moving her arms.

We grabbed a few things from home and headed to Primary Children's.

On the way down she was grinding and biting her teeth so much that she made her permanent tooth loose.  (Front bottom right).  I begged her to stop, but she just had blood running down her chin the whole drive down here and she just kept right on biting and grinding her teeth.  She was in MASSIVE pain.  On a scale of 1 to 10 she was at 20.

When we got here she met the criteria that she was going in to shock.  (I actually didn't think she looked THAT BAD.)  Her heart-rate was in the 140's (high, but I've seen it higher), she was breathing 60 breaths per minute and dropping her oxygen sats to 90, and she had a fever (even for a normal person...so that's super high for her).  If you meet 3 of the criteria, then you go into "shock protocol".  So she made the cut to be placed in "shock protocol".  They send in a bunch of nurses to help and they do an IV, blood, urine, vitals, start IV fluids, start and antibiotic, etc...all really quick.  It has supposedly helped to prevent a lot of people from "crashing".  I thought it was great because #1 the Dr. came in right away, #2 we got the test results pretty much immediately.  I think Ellie should go in to shock every Emergency Department visit!  (Okay, not really...but they were FAST!!!).

They also did urine and x-rays of her chest and abdomen.

Her blood work came back looking really quite good except the white blood cells were up just a bit.  The Lipase (the number that was 3000 last time and should be under 150 and could be an indicator of pancreatitis) was in the low 200's.  Other than that the bloodwork was good.

Her urine showed a definite urinary tract infection.

The x-rays showed some possible free air...are you kidding me?

So they sent her to get a CT scan to look at her appendix.  The light refracted off of her rods and they could not get a good picture.

So then they tried an ultrasound to look at the appendix.  They could not see it because she had gas.

So the radiologist (even though he saw nothing conclusive) really feels like it is a perforated appendix.  The location of the air and a few other things makes him think this.

So they sent in general surgery.  Surgery does not think it is the appendix.  They said her blood would be a lot worse (especially if it tore a month ago), and they think it would look inflamed on CT and her heart-rate wouldn't have come down with the doses of morphine they gave her.  But they still felt like the best choice would be to go in laporscopically through her belly button with a scope (camera) and have a look around.  He is not sure if he will be able to see anything because she has so much hardware and she probably has a lot of scar tissue.

If he can't see what he needs to laporscopically, then he will need to open her up (about half of her abdomen) and have a look-see.

If they find infection, or a perforated appendix, her shunt (which drains from her head into her abdomen) will need to be removed and made into an external shunt until her belly heals, then they would go in and fix the shunt.

She went in to the OR at 10:40 PM.

We are home

We are home

Mom's first time cathing

So if you recall the first 2 x-rays showed the free air in her abdomen, then the third one showed that it was gone.  So they did a 4th one yesterday it also showed that the air was gone.  So yea!  No surgery.

They tried to consult Dr. Murphy in Special Care (she helps with complicated kiddos) but she was not in so they spoke with one of her colleagues and they gave off the attitude, "why are you contacting us, what do you want us to do about it?"  So very non-helpful unlike Dr. Murphy.

Her kidneys looked good on ultrasound.

They were unable to see the pancreas on ultrasound due to gas in her intestines.  They said we would have to do a CT if we wanted to see it.  The gastroenterologists said we didn't need to do a CT and expose her more radiation.  They said she does not have pancreatitits.  They didn't really care that her lipase was 3000.  I asked if it could go even higher.  They said yes around 15,000.  They said it was just a number.  To be considered pancreatitis she would need to have at least 2 symptoms.  The lipase number would be one, but they would need to see physical symptoms like vomiting or severe pain.  Whether she had it or not the treatment is the same.  The old way of treating it was to stop feeds, support with IV fluids and give pain meds.  The new way is to feed through it.  It has been shown to have a faster recovery rate with less infection.  So whether she had it or not they would not stop or slow down her feeds.

Urology came by several times and not just the resident.  The Dr. came by and I really like him, it is Dr. Wallis.  If you recall the resident said we would need to cath her every 4 hours which I was really not looking forward to. When Dr. Wallis came in he said that he has a patient that doesn't pee and he just cath's himself once a day.  As long as the kidneys aren't getting damaged it is fine to go longer periods of time.  So he wants us to do an ultrasound of her kidneys once a year.  And we can just cath her once or twice a day.  He wants the amount we are getting out to be between 500 and 1000 mL.  So if we are doing it twice a day and only getting 300 mL then we should go to once a day cathing.  If we are doing it once a day and getting 1200 out then we need to go to twice a day.  So thankfully they won't have to be doing it at school either.  If she starts getting infections or it starts damaging her kidneys, we will have to cath her more frequently.  He thinks that she just has a big floppy bladder with low pressure and always has.  If you have high pressure that is when you risk refluxing urine back up into the kidneys and causing damage.  So she can handle larger volumes because her bladder has low pressures.

Also, we don't have to follow sterile procedures at home, only clean technique.  So we don't have to create a sterile field and wear sterile gloves and use iodine.  We can just wash our hands, and clean her with baby wipes and we can even wash and reuse the cathedar's if necessary.  Using clean technique seems a lot less intimidating than sterile technique.

We had arranged at bedtime last night that I would be cathing her for my first time this morning at 6 AM.  She had a wet brief with 580mL and we got out 325 mL out with the cathedar.  I got it on my 3rd try, not too bad for my first attempt.

I was wondering how they weigh the diaper and convert it to mL...I found out that 1 gram= 1 mL.  Why don't we use the metric system?  Seriously.  It is sooooo much better.

I think they want to keep an eye on her today and see if she pees on her own and then how much she is still retaining tonight when we cath her at 6 PM.  Then I am guessing we can go home tomorrow.

I asked the Urology Dr. why her urine retention got worse about a year ago and he said he didn't know.  I asked him why it got acutely worse this week and he said he didn't know.

Here is my guess from the theories that were thrown around...Either the spinal surgery or the infection caused nerve damage to her bladder.  Then for this acute problem I think she had some kind of virus or bacteria.  But who knows.

I think this was a good hospital stay.  It has been long, but I think this new plan will work well for Ellie.  I am assuming we will go home tomorrow morning.

So far she is awake and alert this morning.  Her heart-rate and temp both look good.

The plan for today

Urology came by a second time.

I asked if her bladder can go back to it's normal size and how long it would take.  He said yes and it is immediate.

He wants to do a kidney ultrasound to make sure no permanent damage was done.  Because urine can reflux back up in to the kidney and cause damage.  All bloodwork for kidneys look good.

They want to stop the Zyrtec that she takes for allergies it could cause urine retention.

They are going to remove the foley and do a straight cath every 4 hours.  This is not necessarily what we have to do at home, they just want some data now.  They will do a bladder scan before the cath and then a bladder ultrasound after the cath.  This will tell them how much she emptied versus how much she has left in her bladder to see if she fully empties her bladder with a straight cath.  They will also be teaching me how to cath her...yippee (said 100% sarcastically)!

We are supposed to follow up with urology in 1 to 2 months to do a "uro-dynamic study".  This tells them, among other things, what pressure her bladder has to reach before she urinates.

Then the hospitalists came by and went over the overall plan for the day...

Her blood labs and urine and blood cultures all look good except for 1 number and that is her lipase.  The lipase has to do with the pancreas.  The normal lipase number is under 100.  When she came in on Tues, her lipase was 200.  Which is higher than normal, but they were OK with it.  This morning her lipase was over 3000!!!!!  They think she might have pancreatitits which just means an irritated pancreas.  She doesn't have the normal symptoms however.  Normally you would be in severe pain, vomitting, not tolerating feeds.  She is not.  Her heartrate is slightly elevated (probably from pain), her stomach is twitching and she is sleepy (probably due to pain).  They need to consult with gastroenterology.

They also want to consult with Dr. Murphy because she is familiar with Ellie and she deals with complicated kids like Ellie all the time.

They want to consult with Orthopedic surgery to see if the spine surgery could have damaged nerves, or if this is a common side effect they see.

They want to possibly consult with neurosurgery to check on her shunt since she is sleepy...I don't know if they will end up doing this or not.

They redid the abdominal xray this morning to see if the free air could be seen.  I have not heard the results on that.

Urology

She is half awake today.  I was hoping for wide awake.  Oh well.

The Urology resident came by.  He said that an 11 year old's normal bladder capacity is about 360 mL.  The other night Ellie had about 2100.  So almost 6 times as much as normal.

He said that she probably has a neurogenic bladder.  It means that her brain can't tell her bladder to empty all of the way.  But he said that it is not usually progressive (it doesn't usually get worse as they get older).

He thinks that perhaps (because she has been holding her urine for longer periods for about the last year and it got worse after spine surgery) that either the spine surgery itself caused damage to the nerves of the bladder or the infection damaged some of the bladder nerves.

He thinks that this most recent episode this week  was probably caused by an infection or a medication change.

She has had quite a few medication changes lately.  However, I would lean towards the infection because her bloodwork was off and has improved on antibiotics.

He thinks we will probably have to do intermittent cathing at home.  He suggested every 4 hours.  I'm thinking in my head..."Are you kidding me?  Every four hours?  How about once a day?"  Instead I say "But if she pees on her own then we wouldn't have to do it, right?"  He says that is correct.  But his concern about her peeing on her own is that she might not be fully emptying her bladder.

Well my concern with straight cathing her is that when we straight cathed her in the ER and even pushed on her belly and thought she was empty she still had another 1900mL out that night.  So I don't think that straight cathing her is good enough I think we need to leave a foley in overnight.  However that increases the risk of infection.  He said we could figure out about how much she should be putting out.  He said that she should be putting out about 1 mL per kg per hour.  But that would mean weighing diapers and tracking...bleck!

(Straight cath is just putting in a straw type device which allows the pee to come out and drain into a diaper or wherever.  A foley has a balloon which holds the tube in place and the pee drains into a bag over a more extended period off time).

Urology said that the hydrocephalus wouldn't cause urinary retention it causes incontinence.  So he didn't think that it would be related.

Cold

I woke up at 4 AM and Ellie's heartrate was down to 53 which is definitely not the lowest it has been, but that tells me that she is cold.  I took her temp and sure enough she was at 92.7 F.  Anything below 93  and she needs to be warmed up.

I am kind of frustrated, I have said at least 3 times during this hospital stay that her normal is 93 to 95.5 F.  I did not specifically tell this nurse however.  Anyway, it will be fine.  It is just a tad low, but does need addressing.

The blanket warmers are ridiculous here.  They used to be good and make the blankets all nice and warm.  But a year or two ago they changed their hospital regulations and now by the time you get them to the patients room they are not warm at all.  They are pointless and a waste of electricity.  We put some blankets in the clothes dryer and those were MUCH better.

I asked them to get orders for the baerhugger from PICU which is a warming blanket.

Last night before bed she started having some sediment in her urine and now it is dark colored.  Her urine output has slowed down so that it is now too slow enough that they did a bladder scan.   I suggested that everything kind of shuts down when she is cold, so let's focus on warming her up and see what happens.

I really hope that she was sleepy yesterday due to the late night last night.

I am trying to convince the Dr.'s to do a shunt series on her which is a CT of the brain and some x-rays of her chest.  It would ease my mind greatly.  She has not wanted to sit up for as long of periods of time which I have been blaming on the rods, but what if it is the shunt.  When she sits up she goes to sleep.  So either she is actually going to sleep or it is a way of communicating.  Perhaps pain or she is uncomfortable.  (A shunt is a 1 way valve inserted into the fluid in her brain to relieve excess pressure).  Also if the pressure in her head changed it could mess up her urination.

Later today (Thurs) they are supposed to send in Urology, orthopedic surgeons, neurosurgery.

Recently

4 weeks ago
Ellie was grinding her teeth which mean s she has an ear infection.  I took her to the pediatrician and he said that she DID NOT have an ear infection.

3 weeks ago
Ellie was still grinding her teeth and had a low grade fever and congestion.  I took her back to the pediatrician and he said that she DID have an ear infection.  He prescribed oral antibiotics.

2 weeks ago
She was still grinding her teeth so the Dr. called in ear drops.  She still had an elevated heart-rate and low grade fever.

10 days after that
No more grinding teeth.  Still had an elevated heart-rate and low grade fever which I assumed was still a lingering  ear infection.  So the Dr. called in another 10 day course of ear drops.

A few days after that (which would have been Monday morning)
She did not have her normal morning stool.  We did a saline enema.  With no results.  I called her pediatrician to take her in about the low grade fever and increased heart-rate.  He did not have any appointments until the next day (Tues).  It wasn't urgent, so I got an appt for Tuesday morning.

Monday night
Her stomach felt really hard.  We got a medium size stool which was softer than normal.

Tuesday morning
Her stomach was really hard, I mean REALLY hard.  I assumed she was constipated.  We increased and added a few meds to encourage some action.  We got 2 medium size.  But her stomach still felt really hard.  We went to the Dr. appt.  He was concerned.  He did not hear hardly any bowel sounds at all in addition to her stomach being hard and the low grade fever and increased heart-rate.  He ordered x-rays to see if she had impacted stool.  He also ordered blood-work.  The x-rays showed no air down low, only air up high.  You should be able to see air in your bowels.  So he assumed that her bowels were filled up.  Her blood work was slightly off, but not off the chart.  He called her gastroenterologist and between the two of them decided to do a direct admit to primary children's to do a bowel clean-out   This was a relief because it meant I got to skip the ER altogether.  Then her pediatrician called back and said that the pediatrician's at Primary Children's (called hospitalists) did not want to do a direct admit, they wanted her to go through the ER.  Yuck!

Her stomach was getting bigger and more painful as the day went on.

We got to the ER at 4:15 PM and got in to a room at 1:30 AM.  Now you know why I say yuck!

The ER Dr.'s were not convinced it was only constipation because they didn't think it would affect her blood-work   Her stomach was really tender.  She was grimacing and pulling away if you touched her stomach at all.  She was in extreme pain.  On a scale of 1 to 10 she was at an 11.  Her pain was probably worse than I have ever seen it.

She has a baclofen pump on the left so you can't really feel her abdomen very well on that side.  But her right side was huge and tender.  They thought that it might be her appendix.  So they ordered an ultrasound to look for the appendix.  They also ordered additional blood-work   They said that they saw a little something strange on the x-ray that her pediatrician had done, so they ordered another x-ray.

The ultrasound person could not see the ultrasound because her bladder was enormously huge.  They called the nurse from the ER in to cath her.  Once they pushed on her belly and got all the urine out that they could they tried the ultrasound again.  At this point her stomach was much better to me and Ellie was smiling and feeling much better.  The second time trying the ultrasound the bladder was still enormous.  She measured on the ultrasound at least 500 more mL of urine still in the bladder (after we thought we emptied it).  They estimate that they had already gotten out 200 mL of fluid.  She still could not see the appendix.  They also did not see a lot of stool.  And the bladder was still huge.  They compared an x-ray from Jan to the x-ray done at the pediatrician's and the bladder was almost twice as big now.  So at this point I was so relieved because I thought that she probably just had a urinary tract infection.  It would explain all of her symptoms.

They inserted a cathedar to stay in and drain her bladder completely overnight.    From when they inserted it until 12:30 she drained 1500 mL (and that didn't include the approx 200 mL from the beginning).  By morning she had drained a total of 1900 mL (not including the 200 mL) that is over 1/2 gallon.

With the repeat x-ray and with the 2nd x-ray they both showed "free air" in her abdomen.  You are not supposed to have air in your abdomen.  It typically means that you have a perforated (ripped) bowel.  They immediately called in general surgery to consult.  They consulted with radiology and informed me that it was a very tiny amount of air.

We were no longer worried about poop at all.  The enlarged bladder was concerning, but not the most pressing matter.  A tiny air bubble would mean that she would need surgery.  And from what I could gather it was a doosy of a recovery.  They told me that in a few uncommon cases people get air into their abdomen and it just goes away and it is not a perforated bowel.  So that was a possibility.


They were going to admit her and repeat the x-ray in the morning and the blood work.  They also started her on antibiotics because they are assuming that she had a viral stomach bug.  That would explain the no pooping and diarrhea and fever and heart-rate and slightly off blood-work.

I really didn't want or need a surgery with a big recovery right now.  We are trying to get our house ready to sell.  We would do it of course, but it was definitely not in the scope of my plans.

Wednesday morning (today)
We slept in until 9 AM or so.  They repeated the x-ray and blood-work.  We waited for several hours to hear the results.

There was no longer any air in her abdomen.

Hallelujah!  That means no surgery.

The surgeons are handing her off to the hospitalists (pediatricians) to take care of.  They have not rounded yet.  We will need to pin down why her bladder got twice as big.  And I'm assuming I am now going to have to cath her occasionally at home.

I am assuming they will consult with urology.

She has been having problems holding her urine for the last year or so.  It has been worse since having her rods placed.  I was taught how to do crede (which is basically pushing/thumping on her bladder to get her go).  It works OK, but obviously not well enough for Ellie.  Ellie's anatomy is a little unusual so often nurses have a hard time cathing her.  Several months ago they sent a home-care nurse to my house to teach me how to cath.  But the nurse couldn't do it.  So I didn't ever really learn how.

She was acting great last night after urinating.  Lots of smiles and wide awake.

Today she is sleepy, probably because we didn't get to bed until 1:30 AM.

Long time ...no write

I haven't posted since Christmas...whoops.  Well it's only been 4.5 months.

Let's see...she finished the 6 months of anitibiotics she had to do after her spine surgery got infected.  That was about 2 months ago, and so far no infection.  That is really good news.  It is possible for the infection to return, but not likely.  Her blood work 2 weeks ago looked fantastic.

She has had several ear infections, enough that it is time to graduate from her pediatrician and go back to ENT.  I have decided to switch ENT Dr.'s.  We are going to try Dr. Grimmer.

We saw pulmonology and decided to lower her bi-pap just a tad.  But the Dr. thought she looked and sounded good.  Her breath sounds in her lower right quadrant were diminished...but still OK...probably just her normal.  I talked with her about how she has been congested (upper airway) all winter.  We normally only have to suction her when she is sick.  But this winter we have been unable to go a day without suctioning.  She thought that perhaps she might have a bacteria inside her nose and so she wrote for an antibiotic cream to put inside her nose for 10 days.  She also thought we should see ENT about it.

Dr. Klatt, that did her spine surgery, thinks her spine looks great.  The bad news is he is moving to Colorado in September.  We are terribly saddened by this.  He was our new favorite Dr.  Along with Dr. Murphy. and Dr. Gabrielson.  Thankfully her spine is done and she probably won't need her hips done, (cross fingers) we might not need another orthopedic surgeon.

Dr. Murphy raised her baclofen pump (which relaxes her muscles) and stopped her botox injections.  Dr. Murphy also doubled her morning ritalin because it was taking Ellie about 2.5 hours to wake up after giving her dose of ritalin.  It has worked great.

Ellie had to go back on allergy meds and nasal spray due to spring allergies.

We went on a family vacation to St. George.  It was fun, but Ellie had an ear infection, so the first part of the week she was not feeling well.  Then we got eardrops and that seemed to perk her up a bit.  Traveling is TOUGH with Ellie.  We did not have our respite worker come with us.  It was a lot of work for Mom and Dad.  I know I shouldn't complain, half of families with a child with disabilities don't have  a respite worker.  But we do and it is rough without her.  Overall we had fun though.

I can't think of anymore previous stuff...so on to today...

Maybe tomorrow.  I'm tired.  Goodnight.