Two Steps Forward, One Step Back

It was so nice to be home Friday night!  Mom had the house cleaned and decorated with Fall items, Levi was feeling good, and I was optimistic.  Saturday morning started out great but quickly went downhill.  Levi woke up in a good mood, content to lay in his own bed and hang out for a while.  I shared a short phone call with my daughter, who was in the hospital about to have a new baby, and went back in to get Levi only to find he had vomited.  Over the course of the day he threw up three times, had a couple screaming fits, and just felt awful in general. We cuddled with him and did the best we could to help him feel better.

On a brighter note, he slept all night last night, and pooped so loud this morning he woke us up.  A sweeter sound was never heard!  He seems to feel pretty good now.  I'm praying we take more steps in the right direction so he can feel happy again.  :)

Going Home!!

Well today the waiting game has ended.  It's been a few days since Levi has pooped, and that's all we were waiting for to be discharged.  I was concerned this morning because he starting exhibiting signs that he would begin throwing up sometime today.  It's been a vicious cycle of no pooping and throwing up.  So they decided to give him an enema and then possibly discharge.  When the nurses put him in bed to do it, though, they found he had already overfilled his diaper all on his own!  Even better, it wasn't the pure liquid that it's been for the last month or so, but pasty.  (I know this might be gross to some, but all you moms out there will understand.)  So now they are working on discharging us.  Praise GOD!!

This is the first day in a very long time that he has been content to be on his own without being held.  He's been hanging out on top of fluffy pillows in the hospital wagon all day.   After his big poop he's been grinning ear to ear, and I can tell he feels so much better already!  The plan for action to eradicate the ileus in his intestines is simply to remain giving 24 hour continuous feeds at 1 ounce an hour for a couple weeks, along with Miralax twice a day, and a suppository once a day.  We will see his regular GI doctor in a week or so and see where we stand at that point, and if we can begin giving smaller bolus feeds. I'm thankful that this plan has worked to "wake up" his bowels, and that we didn't have to resort to more medication. 

As far as the feeding tube button goes, I'm still not thrilled.  It looked wonderful the day after the nurse cauterized it, but already the granulization is growing again and leaking bright pink fluid.  This is a battle I do not want to fight, but I just don't have a choice.  I do have the option of just letting Mom take care of it, but I just don't like to give up like that.  The surgery nurse, Grace (an angel sent straight from Heaven), told me not to think about it so much.  She said it might do this for a while, but it doesn't hurt him and it's ok.  I just have to keep reminding myself of that.

I'm thankful that Jesus has yet again brought us through a very trying, stressful time and is healing Levi again as he has numerous times before.  I just don't know how I could have gone through everything in the last 20 months without my faith.  And a huge thanks to everyone who has been supporting us and praying!

 

Holy Crap!

Levi filled his diaper (and his bed!) with a huge bowel movement again last night.  At least we know we are on the right track.  He slept all night again, and woke up with smiles. 

Yesterday he had another tummy x-ray to see if anything had changed.  It was pretty much the same.  He may need to have a bowel cleansing, but as of right now there are no set plans. 

We had a surprise visit from my sister Casey and her little ones Faithie and Jackson, and Shelly stopped by the day before.  It's so nice to hang out with family and have a relief from the boredom of sitting in the same room all day.  I have to thank God for technology!  My laptop has made this stay much more tolerable. lol

I don't have anything else to report at this time.  It's a waiting game, but that's alright.  At least I know this time they will make sure the issue is resolved before we go back home, and that gives me peace.  Thanks again for all the prayers.  We can feel them!  God is working in our lives, and I know that all the prayers being sent up for us have strengthened us.  We pray blessings on all of you as well!

Levi in the pool over the summer :)

 

Hospital Update

Levi had been screaming more and more on Sunday, still no bowel movement, and the area around the feeding tube button looked horrendous.  It was bright pink, oozing colors from tan to bright pink.  We had cauterized the tissue Saturday morning, but that afternoon it was bright pink again and had grown.  Same thing happened on Sunday.  I had had enough.  It was time to go to the ER again.  I was actually hoping that he would be admitted so they would figure out what was going on with his belly, and the nurses could take care of the button for me while the tissue healed.  I mean look, I am NOT a nurse, I never wanted to be a nurse, in fact I emphatically did NOT want to be a nurse.  Now to have to do these things to my own child has been extremely stressful for me.  I had reached my breaking point.

In the ER we went through the normal workup for Levi, which involves x-rays of tummy due to GI issues, ct scan of the head and x-rays of chest and belly to check the VP shunt, bloodwork, and they even performed a ct scan of his belly to get a better look.  The x-rays showed that he has an ileus (a blockage of the intestines due to the lack of movement of the intestinal muscles).  This is concerning to us because when we were in the hospital five weeks ago, supposedly due to gastroenteritis, he had an ileus.  So basically his bowels have not been working for five weeks!  He has not even been passing gas.  Now we (Patrick and I) think the entire issue over the past month and a half is due to the ileus, which can be caused by surgery or trauma, and that he probably never had gastroenteritis.  I'm pretty frustrated by that fact, because Levi has been in pain all this time, and we have all been stressed to the breaking point trying to figure out why, when the problem was staring us in the face the whole time!

The doctors explained that we have several option to try to get the bowels working again.  Thank God!  Let me tell you, hearing that your child's bowels have basically shut down is not easy to take!  The first course of action would be to put him on continuous feeds, and give one suppository a day.  That should wake up the bowels and get them moving.  I was skeptical, but last night Levi had a huge bowel movement all over his bed!  This morning he woke up with smiles and has been content to lay in bed and entertain himself.  He has not done this since before he got sick weeks ago.  I think that's a great sign!  His belly is still distended and full due to so much air in the bowels.  I don't know yet what the course of action is for today, but so far things are looking up.  Thank you all for the prayers, and please keep them coming!! 

Still Having Issues

So the Upper GI and small bowel series tests came back normal, thank God!  Levi was very happy the day of the testing and we were hopeful that the worst was behind us.  It was, but his recovery from the gastroenteritis has been slow at times.  He has had good days followed by bad.  He's still having bowel issues.  His tummy grumbles all the time, and he's taking Miralax twice a day, but with no results.  We have had to resort to using enemas when he goes four days without a dirty diaper.  This is painful for him, and add teething to that as well.  He still has the huge cyst on the right side of his mouth, but thankfully the one on the left side has burst, and he's actually cut his first molar!

Wednesday he had the G-tube switched to a button.  The button is a small device on his tummy which comes with a removable tube.  It's much, much easier to navigate and use than the old tube was.  He can have tub baths and swim now.  However, it's causing him a LOT of pain.  Some tissue, called granulization, has grown up around the tubing.  The nurse cauterized it with a silver nitrate stick.  Patrick and I had to cauterize it again this morning.  He's been crying for the better part of the last two days.  The button is bothering him so much that he was pushing against it so hard it was pulling out of his tummy.  Patrick wrapped it with an ace bandage so it would be more secure, and this must have made it feel better because he fell asleep and took a 3 hour nap. We had been alternating Tylenol and Advil every four hours, but he was still in so much pain that I contacted the surgeon in the hopes of receiving a prescription for something a little stronger.  He told us to alternate every two hours instead of four for a little while.  That has made Levi feel a bit better.

Hopefully tomorrow he will feel better.  I plan on calling the GI doctor Monday about the continued bowel issues.  We would greatly appreciate prayers for Levi!  Please pray for his pain to go away, for restful sleep, and if there is a larger problem, that it be brought to light!  Thanks for all your prayers!!

Levi's first nap in toddler bed  :)

GI Doctor Appointment

We met with Dr. Rosenblum today, Levi's GI doctor.  After I went over the details of the last three weeks, he agreed with me that something doesn't seem right.  He said it's possible that his body is just still trying to recover from the severe gastroenteritis, but he wants to do some tests to be sure nothing more serious is going on.  They scheduled us at Cardinal Glennon on Monday morning for an upper GI and bowel series.  He said, "Let's put some stuff down the tube and see where it goes."  I love this guy, he's funny and comforting all at the same time.

Yesterday I gave Levi pedialyte, and 1/2 Ketocal/1/2 water. He was able to keep everything down.  Today he has had full strength Ketocal and also kept it down.  I will start progressing from 2 ounces as he tolerates it.  I pray he doesn't have any more episodes of vomiting and that nothing is seriously wrong, and that the true problem is brought to light very soon!

Levi asleep in the gait trainer after working with Shawnery today :)

Tummy Issues, but What is the Cause?

Saturday was 16 days straight that Levi had vomited at least once a day.  We had had enough!  We took him down to only diluted Pedialyte that day, and he had no more vomiting.  The next afternoon we added chicken bullion soup, which is the next step for sick days on the Ketogenic diet.  He did well with that, too, so Monday we moved him to some feeds of Ketocal, the Ketogenic formula.  Instead of putting the feeds through a pump over an hour, we trickled it into a large syringe and let it flow into his tummy by gravity over about 15 minutes.  We began with one ounce and were able to progress over the next couple days to 2 1/2 to 3 ounces at a time.  He cried with the formula, but no vomiting.  Interestingly enough, he didn't cry when given water or Pedialyte.  So last night I decided it was time to try 4 ounces through the pump.  He did fine.  This morning I was expecting him to be absolutely fine and began another 4 ounce feed with 1/2 the prescribed MCT oil (this is a fatty medium chain triglyceride that raises the diet ratio to 3.5:1).  He fussed throughout the feed, but I didn't think too much of it.  Not five minutes after it was finished he vomited every bit of it.  How upsetting!  He had gone three full days without throwing up, I had really thought it was over!  He's been able to take dilute Pedialyte and small bits of formula again.  I tried to give him 2 ounces this evening but only made it through one before he began gagging.  I plan to start continuous feeds in the morning for the entire day so his little body can get the nutrition it needs.

We have a GI appointment on Friday, and I'm very much looking forward to hearing what his doctor has to say.  Originally when they planned the G-tube surgery they were also going to perform a Fundoplication (a stomach surgery to correct GERD, or reflux) but since he was taking goal feeds with no reflux the doctors decided that it wasn't necessary.  We don't really know what's going on, but we think reflux is unlikely since the Nexium has been controlling it, and the vomiting began so very suddenly.  Hopefully everything is fine and it's just taking his tummy a while to rebound after the extreme gastroenteritis.  Please keep Levi in your prayers!!

This pic was taken at our last hospital stay.  St. Louis Cardinals baseball player Lance Lynn was passing out Build a Bear toys wearing Cards shirts to the children, and he autographed the shirt.  He was so kind and compassionate, we really enjoyed the visit!!