In...and Out...of the Hospital

Sunday night Levi's belly had become distended again.  He was bearing down and crying all night long, but couldn't pass anything.  We came into the ER at Cardinal Glennon.  They gave him an enema (something I wouldn't have done on my own since he'd just had a rectal biopsy) and had huge results from that.  We were admitted and saw I think the only GI attending physician that we haven't seen before.  He explained they have done all testing they think is necessary and unfortunately we just have to wait this out with the plan of Miralax/enemas until he starts going on his own.  I didn't want to hear that, but since all the GI docs agree on that, it must be true. So my most pressing point, then, was what do we do to keep him comfortable in the meantime, while we are waiting.  He fusses and sleeps all the time, he's in pain, he doesn't smile anymore.  He said to give Benadryl. I don't like to make him sleep all the time, but it does make him comfortable, so I will just have to be ok with that.  He also talked about a different laxative that can be given, called an irritant laxative, that would help the rectum to contract.  The strange thing is that even though he hadn't pooped in almost a week, the x-ray showed almost no stool.  He said it's possible that because it's so watery it's being expelled with his urine.  Now today we have a different attending GI doctor, and he doesn't want to go with the new laxative. We are being sent home today on the same plan as before, with a suppository or enema scheduled every few days if he hasn't stooled.
 
Now for the exciting news!  This morning at 4 he pooped all on his own!  Several times he has passed gas!  I'm praying this is almost over!

I believe everything happens for a reason.  I met a lovely lady today who shared with me her desire to join mission work.  She wants to be the hands and feet of Jesus.  If we had not been here, we may never have met.  It was such a blessing to share our faith and to be touched by such a caring spirit!

Biopsy Results

Well the results are finally in, and Levi does not have Hirschsprung's.  I have to say I'm disappointed, because now we are still facing the unknown.  Why can't he poop or pass gas?  Why is he so uncomfortable and miserable?  The last couple times we used the rectal tube there was hardly anything there, so is his body not even creating stool?  What is happening to all the food that enters his body 24 hours a day?  WHY did it all start with the g-tube surgery? 

I guess the plan at this point is for 24 hour continuous feedings, daily Miralax, and wait.  If this doesn't work, maybe we can start motility meds, depending on which GI doctor we talk to.  And what kind of time frame are we looking at before we start that?  I'm not in the best frame of mind to talk about this right now, so I'll just leave it at that.

On the bright side, Levi seems to be adjusting to home and realizing that he's home.  He had therapy with Shawnery today, which started out rocky but she was able to calm him down and work with him.  He fell asleep and slept in the new feeder seat for a very long time. We have actually seen a couple smiles from him today!  Please keep him in your prayers!

 

Heading Home Today!

I am so excited to finally get out of here and go to my lovely home!  I've missed it so much!  When we left the leaves on the trees were just starting to turn, and now the majority of them have fallen.  Looking forward to rocking Levi on the porch swing and watching the squirrels steal apples off the ground.  I think Levi will feel better at home, too.  He knows now when they pull his finger out that he will be stuck, when they mess with his IV that they will flush it, which he hates, and I'm hoping he will relax and start to smile again when we get home.

The results of the biopsy for Hirschsprung's have still not come back.  It should be this afternoon or tomorrow morning.  The doctor wanted to keep us until the results were back, but took pity on me and let us go home.  If it is positive, we will schedule surgery and come back for that.  If it is negative, the plan at home is to go on with continuous feeds, start daily Miralax again at a higher dose, and pray to GOD that his bowels start up again.  If that fails, then we can look at medication for motility of the bowels. (Some doctors are against it, some are for, but thankfully the docs we will be seeing will prescribe it if necessary.)  This makes me feel better.  To me, it means that if Plan A doesn't work, there is a plan B.  It's not ideal, but it is what it is.  I just pray that we don't revisit the cycle of gagging/vomiting/no pooping. 

From a neurological standpoint, we will go up slightly on Baclofen, which is the medication that loosens his tight muscles, caused by cerebral palsy.  We have noticed a tremendous difference so far!  This med can cause more seizures, and we have seen increased seizure activity, but he's been through so much that can also be the cause that for now I'm not worried about it, we'll just continue to monitor him.  I'm praying that it does not increase his seizures, because it makes such an amazing difference!  I'm sure he will have an easier time in therapy, and learning to reach for toys, crawl, etc now that he has more flexibility in his limbs. 

Please continue to pray for Levi, that his bowels will work regularly again, that the seizures again decrease, that he feels better and can be happy again.  We haven't seen a smile from him since the day after we got here, almost three weeks ago.  Thank you so much for following his blog and supporting us with your prayers.  We are praying for you, too!   I know the Lord is with us every step of the way, and you all help to make that happen!  You will never know just how dearly we appreciate you!

 

Going Home?

Our regular GI doctor was here this morning.  Some of the GI team believe that (if he doesn't have Hirschsprung's) Levi's slow comeback after surgery could be due to neurological issues, so they are calling in the neuro team today.  Since they aren't doing anything here that we couldn't do at home, Dr. Rosenblum is talking about sending us home tomorrow.  He said we don't need to sit here and wait any longer, especially since flu season is here and he definitely doesn't need that.  If Levi has returning issues of gagging and vomiting we can call him.

We have decided to organize a care conference with neurology, GI, surgery, and dietary.  It makes great sense to us to have all the doctors in one room to discuss Levi's issues and a plan to resolve what's wrong.  Dr. Rosenblum was completely on board with this, and Joanna from the Footprints program is working to make that happen for us.  Thanks, Joanna!! 

The biopsy results have not yet come in, but I will post an update as soon as I hear anything.  It could be today, or any time within the next couple days.  I'm praying it's soon!

 

Update

The rectal biopsy was done very early this morning.  Levi did very well, and has been sleeping restfully ever since.  He was crabby and awake much of last night, so extra sleep is great for him today.

The nurses were flushing the rectal tube every four hours yesterday, and through the night, with saline solution.  This cleanses the stool from the colon as well as helps to "wake up" the bowels.  I was surprised at how little stool was actually present, after four days of no bowel movement/rectal tube, and being on regular feeds the entire time. 

Now we just wait for the results to come in.  Hopefully we will hear the news tomorrow, but it may take a couple days.  I still pray for Hirschsprung's syndrome.  Otherwise we are running on theories.  I don't like to think of weeks or months of continuous feeds/suppositories/enemas/rectal tubes, and the like.  Please keep Levi in your prayers :)
 

Biopsy Tuesday Morning

Levi is scheduled for the biopsy on Tuesday morning.  Please join me in praying for his safety.  I will also be praying that he has Hirschsprung's Syndrome.  For me, it would be a definite answer and solution.  Although I don't want him to have to undergo another surgery, it seems preferable to doing the same thing we've been doing for weeks or months down the road in the hopes that it will self correct.  I just truly want these issues to be fixed.  Levi has been through so much!  I will update through the day tomorrow.  Thanks for your prayers!

 

Waiting Around to Wait

Well the biopsy will not be done today.  Hopefully we find out today when it will be done, though.  So we are waiting for the biopsy, then will wait a minimum of 3 days for the biopsy results.  If that comes back negative I guess we will continue with continuous feeds and wait to see if his bowels start working on their own.

The dietitian raised his calories slightly because he has lost so much weight.  When we came in here two weeks ago, he weighed 18 pounds 9 ounces.  Last week he weighed in at 17 lbs 1 oz.  The sad thing is that he had been doing so very well on the ng tube before the surgery, he was looking pudgy and had grown up to 20 1/2 pounds.  That's a lot of weight for a little guy to lose!

He woke up crying this morning and has been crabby ever since.  His belly is largely distended again, so they will be placing a rectal tube today to drain the gas and stool.  It's been four days since this was last done.  I can't imagine how awful his tummy must feel.

Please keep the prayers coming.  My frustration is growing, and although I'm trying to be positive I'm finding it more and more difficult.  Thanks!

 

So Frustrating

This week Dr. Foy is the GI doctor on hospital rounds.  They are still planning to do the surgical biopsy this week, whenever surgery can fit us in.  Unfortunately they are down two surgeons this week, but hopefully we won't have to wait too long.  The doctors don't think that Levi has Hirschsprung's, but it does need to be ruled out.  Dr. Foy's theory is that the trauma of the surgery caused damage to his nervous system, and that we should continue as we have the last month with continuous feeds and begin suppositories again.  He said we can give this course of treatment six months, and if it doesn't correct, he may need to have colon surgery that would result in a colostomy bag.  I am definitely praying that it does not come to this!!  I feel like we're back at square one, doing what we've been doing, which doesn't seem to work.  What he said does make sense, I'm just so frustrated that no one seems to have a definitive answer.  For some reason, they have not been discussing starting medication to increase motility of the bowels.  I'm waiting for someone to come in and talk to me about that now.  Unfortunately I didn't think to ask him while he was here.

So for now we are still in waiting mode.  Hopefully the tides will turn and something will happen soon, whether it be a diagnosis of Hirschsprung's, or even better, for Levi's bowels to begin working again.

 

Another Biopsy

Dr. Rosenblum was just here with the unfortunate news that the biopsy sample was insufficient for testing.  We will consult with surgery today, but Dr. Vane isn't here until next week, so it will be Monday at the earliest that the new biopsy is taken.  We were trying to keep him from another surgery, but at least they will definitely be able to take enough tissue for a complete testing.  Then we will be waiting around three days for the results.  If it is positive for Hirschsprung's Syndrome then he will go into surgery to correct it. 

It may sound funny to some of you, but I'm hoping it is Hirschsprung's.  This would give us a definite answer and a solution.  I've researched it, and Levi has all but one or two of the symptoms.  Not only would this give us an answer for what he has been going through the last two months, but also all the constipation/tummy issues he's had his entire life.  The best part is, it's completely corrected by surgery.  His entire little life would be so much better!  One of the symptoms is explosive bowel movement during a rectal exam.  This makes me laugh in memory of the time last year when we were yet again in the ER with constipation/gas/screaming issues.  Dr. Josephsen decided to insert the tip of his finger in the rectum to stimulate the bowels.  He got more than he bargained for!  We heard an explosive POW and suddenly the doctor was covered in poop!  You should have seen the look on his face!  He handled it so well, joked it off and left to change clothes.  The nurse completely lost it when he walked out, and the rest of the night people were popping in to see the little guy who covered Dr. Josephsen with poop!  After all the laughter had died down, we noticed that the poop had ricocheted off the doctor (who had been standing at Levi's feet), flown past Levi, and hit the wall behind his head!  To this day if Dr. Josephsen sees that we are in the ER he stops by for a visit. 

Testing for Hirschsprung's Syndrome

Yesterday Dr. Rosenblum decided to test for Hirschsprung's Syndrome. This is a congenital condition that is typically found shortly after birth, where the nerve endings in the intestines don't reach the rectum.  It is somewhat rare, and even rarer still to be diagnosed at an older age, which most likely means it is a mild case.  After having researched online, though, I can understand why they are testing for it.  Levi has nearly every symptom. The doctor performed a biopsy yesterday and we hope to have the results by the end of the week.  The treatment would be to surgically remove the part of the intestines that lacks nerve cells.

Levi slept all night last night, and has been more alert during wakeful periods today, though they are few and far between.. They have stopped all pain meds except Tylenol, which doesn't help him much, so when he's in pain he receives Benadryl. I wasn't thrilled with this idea, but he had the first dose today and when he woke up hours later he seemed to feel better. 

Overnight he was on continuous feeds of 15 ml an hour Pedialyte/Ketocal blend, after again going about 3 days without food. That increased this morning to 30 ml an hour of straight Ketogenic formula. If he tolerates this (which he has very nicely) they will add the mct oil tomorrow to raise the diet ratio to 3.5:1, his norm, and then Monday proceed on to Ketocal 4:1.  Not only should this increase seizure control, but we can also get rid of the oil. 

Friday he is having the cyst on his gums surgically removed as well.  Please continue to pray!

 

Solving the Puzzle...

Over the weekend Levi continued to scream every waking moment.  This pattern of sleeping/screaming has gone on for days now.  Yesterday morning when the GI team rounded I was probably at the most frustrated I've been.  We had been in the hospital for a week, with no answers and no ideas.  All the tests had come back normal, and yet Levi was still screaming in pain and still having no bowel movements. His tummy was no longer distended, he was no longer vomiting and gagging, so Dr. Mangalat felt that the GI issues were resolved.  She decided to call in neurology and perform another x-ray of Levi's tummy, mostly to satisfy Patrick and Dr. Rhadans, who both  thought the GI issues were NOT resolved.  They were right.  Levi had been on no food for three days (he's lost over a pound since last Monday), one day of Pedialyte, and one day of Pedialyte diluted Ketogenic formula, and the x-ray showed that gas was already building up in his tummy.  Evidently the intestines are just not working at all, not even enough to pass gas, which we knew, but what is the cause, and the solution?  Dr. Mangalat decided to confer with our regular GI Dr. Rosenblum, who by the grace of God is on rounds at the hospital this week.  He came in this morning and has decided to do a lower GI (he already did an upper GI and small bowel series over a month ago) to look for blockage or some other cause for these issues.  Hopefully that will be done today. 

Yesterday, also by the grace of God, our regular neurologist/epileptologist Dr. Gibbons was on call.  He has such a calming presence, when he walks into the room you just know everything will be ok.  We discussed starting Baclofen again, a medicine for cerebral palsy that loosens spastic muscles.  Levi was on that over a year ago, and it worked wonders for him, but just after we started he began having Infantile Spasms, and we were afraid that Baclofen caused it, but Dr. Gibbons said although it can cause seizures, it's unlikely that it caused a new seizure disorder.  So we began a low dose of Baclofen last night, and Levi also had another IV placed and began a pain medication, Toradol, which has helped immensely.  He's actually been comfortable and able to sleep.  Last night he also started sneezing, coughing, and having a runny nose.  Poor little guy! 

At least we have a new plan of action, and we'll see what happens.  Thanks for all the prayers.  Please keep them coming!!

 

Feeling Worse

So yesterday the doctors decided to change the plan.  Instead of calling in neurosurgery at this time, they decided to run more tests and concentrate on issues that would directly effect the stomach/bowels.  They put a tube up his rectum, attached to a bag, to allow all the liquid and gas to drain.  The results were amazing!  Right away his very distended tummy started shrinking.  Most of the tests have come back, all within normal range.  We are just waiting for a couple cultures now.  They started him on an antibiotic that is good for the gut, in the off chance that there is infection there.  His IV went bad, and they had to call the mobile team in to use an ultrasound machine to find a good vein and placed the IV in his leg, which was pretty much the only vein they hadn't tried.  It worked, but he hated it and it only lasted a matter of hours.  So now he is on a continuous drip of pedialyte through the g tube.  At least he doesn't have to go through another stick right now. 

However, he's feeling miserable today.  More so than before.  The fever is down, but he still feels horrible.  They are getting ready to remove the rectal tube and see if that is the cause of all his discomfort. 

Prayers are needed now even more so than ever.  We have theories, but still no solid reason for all that he's been going through.  Which means, of course, there is no solid solution at this point.

New Plan, More Doctors

So yesterday I mentioned the cyst (or whatever it is) on Levi's gums.  It's HUGE and has been there for about three months.  He had a smaller one on the other side, and it popped and bled about two months ago, but this one continues to grow in size.  I've meant to take him to a pediatric dentist, but with all the other issues he's had it fell to the back burner.  I began thinking yesterday that all the swallowing he does could be linked to possibly swallowing fluid from the cyst, and if it is absessed or infected, that could be a problem.  Not that I think it's causing the issues, but adding to them.  Thankfully the doctors took me seriously and decided to call in a pediatric dentist to check it out.  It may be completely harmless, or not.

Many of his issues are consistent with shunt problems, so although the shunt series (x-rays and ct scan) looked fine, they are calling in neurosurgery to tap the shunt so they can test the fluid.  I think that just involves sticking a needle into the shunt and draining some fluid, but I could be wrong.  We will soon find out. 

Our favorite nurse Grace did basically the same thing to his little bottom.  Using a tube, she drained stool into a syringe so they can get the other two tests going. 

Dr. Rhadans was Levi's doctor last time we were here, and I feel like he has been wonderful in advocating for Levi.  I'm excited to have many new options today!

 

Blood Culture

Four o'clock in the morning.  I'm sitting here in our darkened room, listening to Levi screaming down the hall as they try to find a good vein to draw blood from.  The doctors want a blood culture from him while his fever is high.  Some of the nurses who are highly skilled in drawing blood tried yesterday, with no luck.  Levi is not usually such a difficult stick.  They called in the transport team, which is the medical team that flies out to work on children who are air lifted to the hospital, but they were so busy they were unable to come.  I'm praying they will be able to take the blood needed for this test so he doesn't have to go through this again.  UPDATE: the blood draw was successful!!  Please pray this gives us the answers we so desperately need!

On a brighter note, he slept for seven hours straight, and so did I.  It's been a very long time since he's slept that many consecutive hours.  That alone should help him feel a little bit better today. 

 

Infection?

Yesterday afternoon Levi spiked a fever or 100.8.  He was breathing rapidly and obviously uncomfortable.  Tylenol only brought it down slightly, and after a couple hours it rose to 102.9. Advil did a better job, and Levi was able to sleep for 4 hours uninterrupted, probably the longest he's slept since we've been here.  He woke up crying, hot, and feeling miserable.  Nothing I did soothed him.  Thankfully, he was able to have another dose of Advil and he's sleeping peacefully now.  He spent most of the night whimpering in his sleep.  Poor little guy!

The GI doctor feels that it is an infection of some sort, and the fever supports that theory, even though all the tests have been normal.  We are still waiting for his next bowel movement so the remaining two stool tests can be performed.  They are repeating the CBC blood test to check white blood cell count, and when he spikes a fever again they will do a blood culture.  The doctor said it will be a lot of hurry up and wait, but that's okay.  She knows I don't care how long it takes, I don't want to leave without a solution this time.  I think she's determined to find out what's wrong.  Please continue to lift him up in your prayers, and share to others.  I know God is working through this situation, even when we can't easily see it. 

New Test Results, New Theories

The GI team just rounded and we have new information.  This is very exciting because at least we have a different direction to explore. The x-rays showed that the colon is now inflamed.  It may have been inflamed before, but now it's worse and very obvious, so the new course of action is to run more labs and check for things like infection and parasites. They will also try to get another stool sample to complete the remaining 2 tests ordered.  Levi had a huge poop this morning, after 4 days, so who knows how long it will be before he goes again? The GI doctor said that if all the cultures come back negative, she will send a scope up his rectum and see if that sheds light on anything.  So at least we have a new course of action planned out, and we aren't stalled with doing the same old thing that hasn't worked.

We had a very nice visit from two of the ladies from pastoral care.  They prayed with us, and that always leaves me with a sense of peace.  Please continue praying!

Back in the Hospital Again

Thank you for all the prayers!  We are really feeling them, and I think we've actually found the cause of the granulation tissue around the feeding tube button.  This morning when we changed the bandage we saw a small black spot in the tissue, which Mom said looked to be a stitch.  I called the surgery nurse, Grace, and she was able to make time for us right away.  It actually was a stitch, which had most likely irritated the area and caused the growth of tissue.  She cauterized it and helped me change the button, which was not nearly as traumatic as I'd expected. 

We had again been very concerned about Levi because he continues to vomit, have only liquid bowel movements, screaming and gas.  I hadn't been able to contact our GI doctor, and since Grace is also a GI nurse, she helped us out.  She contacted a GI physician new to Cardinal Glennon and had Levi evaluated while we were here.  The doctor agreed that something is not right, and she admitted him for observation.  She has ordered all the normal tests that we have already been through twice in the last two months since the feeding tube surgery.  We expect them to find the same thing, but I know this is the starting point.  Please pray that they find the core issue and can come up with a plan that will actually work this time!  To put it into perspective, I can describe what Levi must be feeling as having the stomach flu continuously for two months.  NOT something anyone would want to go through.  We appreciate all of you so very much!

 

Call for Prayer!

Today I'm asking again for prayers for Levi.  We've been out of the hospital for over a week, and he's not doing any better.  In many ways he's worse.  He's vomiting at least once a day again. Almost every morning he vomits when he wakes up.  Twice daily Miralax and once a day suppositories are just keeping him from needing enemas, but the stool is still completely liquid.  We can hear and feel the gas in his tummy move around all day long, but he's still unable to pass the gas.  Where does it go?  Is it just circulating through his already painfully irritated intestines?  The feeding tube button continues to grow granulation tissue almost faster than we can cauterize it.  It oozes and bleeds, making bandage changes necessary twice a day.  He seemed to be feeling alright this morning, and just as we were getting ready for church, huge gas pains overtook his little tummy, and he screamed and screamed for nearly an hour.  He's so wiped out from that experience that he fell right asleep and now, 3 1/2 hours later, he's still sleeping.  Since the surgery two months ago his sleeping pattern is messed up and (excluding this afternoon) he doesn't get enough sleep, even with the Melatonin we've added at bedtime. 

We are calling his GI doctor in the morning to discuss all these issues.  He has been on continuous feeds/Miralax/suppositories for two weeks now, and we should have seen results.  Levi has been having these issues for two months now, ever since a few days after the surgery.  He's been in so much pain for so long, but he's a little trooper and fights so hard!  Let's flood the gates of Heaven with prayers for Levi today!  Let's ask for healing of all that ails him.  Jesus sees all and knows the cause of what is hurting him, let's all pray that He fix the issue once and for all!  Levi needs all of you to petition for him today! The bible (Mt 18:20) states "For where two or three gather in my name, there am I with them.”  Thank you for joining us in praying for Levi!