Day 5 Hoping to be discharged today..

Well, we are still admitted to the hospital, Joel is getting his new line placed and personally I can't wait. I never thought I would say that however, as many times as they are having to poke him and see bruises on my baby I am glad that they won't have to poke him anymore. They have put him on 24 hr continuous feeding with his formula and has been without tpn or omegaven for 4 days and seems to be doing well. Right now we are upping his feeding intake. He is at 53cc's times 24 hrs which rounds out to be 1271 cc's of formula. which is twice the amount that he used to get. I go up tomorrow to 54 and 1cc every day/every other day till clinic on Tuesday and we see labs and get his weight. Their Infusion science which takes care of his line, does his labs are greatThey are showing us a whole new way to care for his line etc and to help him from getting infections. Thank you Lord that we are here. I miss my family terribly and am homesick, but if it can help him from getting infections and staying out of the hospital then it is worth it. We start our feeding clinic tomorrow and pray for us as I am very apprehensive about their techniques, and have heard its very hard on the parent but He NEEDS TO EAT and this is our Giant right now and I know that nothing is IMPOOSIBLE with God.

I'll post more tomorrow and oh by the way we were discharged yesterday and had one day of relaxation....

Day 4

Joel was admitted yesterday, because his line was acting funny and his antibiotic did not go through like it should. Cultures were started just to make sure nothing had leaked through and wasn't growing and sure enough as we were getting discharged this morning, they got a call that he had a yeast infection. So they took the discharge papers away :( and said we are here through the weekend. They pulled the line and added peripheal IV. and started Diflucan for the Yeast infection and continued Cipro.

He had his Small bowel series and we are anxiously awaiting results of the length and whether he would qualify for any procedures to help lengthen the bowel. I heard little bit of preliminary treatment plan from the nurse coordinator and she said that they have had patient's with less small intestine than Joel and have them off of TPN..

I'm suppose to meet with Dr. Mercer tomoorow at 9:30 and should have more details to post tomorrow. WE are holding up, leaning on the Lord and believing in hope and a miracle for our little guy. They will be teaching us new techniques for cleaning(line maintenance)and a whole new thought process on how to deal with cutting down on his infections. We will be starting feeding therapy, they are waiting to receive the paper authorization instead of Just verbal.

Thank you everyone for your prayers, thoughts and encouragement...

Our Journey begins....

Well, here were are, finally in Omaha, Nebraska in our suite at the Leid transplant center. We are hoping to get into the Nebraska house tomorrow. They are a little less expensive. We will have a quiet weekend tonight and tomorrow. Then first thing Monday morning at 8:30 we start with around of tests and then clinic appointment on Tuesday. I will update as soon as I have any news on anything or results...

Never a dull moment with a Short Bowel Kid!!

HI all,

We have had an extremely busy month, Joel had been on such a good spread of hospital stays and then boom ended up with a staph infection; which put us in the hospital for 4-5 days till we got the sensitivity and then back on I.V. antibiotics. We got half way through the antibiotics and then in the middle of the night Joel started shaking and his belly was as tight as a rock. We thought oh crap, an obstruction, we tried to vent and nothing. He was screaming on a scale of 1-10 pain level he was probably a 12 and as tight as a little ball all cramped up. We thought for sure we were headed to Portland. The venting did nothing and so we called his Pediatrician we gave him some ibuprofen for pain it subsided as we thought it was gas which can be extremely painful for him. He went back to sleep and we thought all was well.

The next day he started it again we took temp and 103.9 we new at that point we were going to be admitted to the INN (hope you don't mind Brogan's we liked your "INN" term we've adapted that to our vocabulary. I think i'm the only parent that brings their toilitries, curling iron, hair dryer, make-up etc. I know we're in for at least a 5 day hospital stay.

He ended up with another gut infection and this time growing 2 of them at the same time. Psudeomonious and Ciptrobactera, and we went home again on 2 big gun antibiotics, one given every 24 hrs. (gentamyacin and Cefepime every 8)

Then we are released from that hospital stay and then 3 days latter I put Joel down for a nap he's awfully quiet which you'd expect for someone supposed to be napping however Joel is usually doing something to his line and sure enough there is blood dripping from his line and hanging out of his shirt. He had bitten a hole in his central line and it was hanging by a thread. Then we are back to Portland again to the Emergency room except this time to be admitted because he was still on I.V. antibiotics and we had to put an i.v. in his arm so he could get the rest of his dosage and to give the line a 48 hrs rest after the repair. They had to repair the repair.

Now for the fun part, We are taking our little man to the Medical Center of Nebraska, they have a short bowel clinic and specializes in kids like him and have an intesive feeding program. They also try and rehabilitate the intestine that he has and to get him eating all of his nutrition by mouth. It is a 5-6 week program, so Joel and I will be leaving his sister Ashley to be in school and Jason to work and while we are gone they will be holding down the homefront.

Never A dull moment

Birthday's, Weddings and Line repair oh my!

Well, July has been a very busy month for us. Joel had his 2nd birthday and was very eventful. That weekend his oldest Sister Katie who is 18 just got married on Saturday July 11th and then on the 12th we celebrated with much excitement his 2nd b-day.

Joel is quite the little man as I call him who is oh so busy! He is climbing all over the place including the dining room table,couch and whatever else he can manage to climb. We now have a slide in the back yard to help,in which he loves, but would still rather climb the furniture.

He has just started feeding and speech therapy 2x's/ week and is improving with every session. He is now eating 2 tbs. of rice cereal flavored with vanilla elecare. I have found that he does have some preferences. He prefers oatmeal to rice cereal and warm rather than cold.

I think he has decided he doesn't need either his central line or his mickey button, because the last 5 days he has tried to pull them both out and almost succeeding. On Friday during his dressing change we noticed that there was a slit in his central line,like it had been cut and we still can't figure out it happened. We ended up on Friday night making an emergency trip to OHSU emergency room praying that they would be able to repair the line. We go there at almost 9:00 p.m. we were seen in no joke 15mins and they repaired the line right there and then out the door by 11:00 p.m. I have never seen an e.r. work like they did kudo's to our OHSU !! We had to drive back because we had no TPN ,because we weren't sure if he would need to be admitted or not and so we drove back and arrived home saturday morning at 4:00 a.m. then I had to mix his TPN and hook up. What a long weekend.

SO far so good on infection, we are on an even keel right now and are very blessed.

Joel is now miracle of all miracles he has started drinking a bottle. He drank his total feeding at his noon feed today. I am hoping he is on a roll. He also with a late night last night drank 20cc's right before bed.

So that is all for right now, but continue to say prayers that he will learn to suck and swallow as well as he is. The therapist said that,that will be the quickest way to strengthen his jaws and get him talking and eating.

Long Awaited Update

Well, the saying is no news is good news! and I am learning that,that is the truth.
Joel has been keeping us very busy lately,and I'm desperately trying to keep up with him. He has made big strides since March; His eating has really started to take off and he will sit in his highchair between 15-20 mins at a time and enjoys it as long as he is watching TV to distract.

He is now climbing on and all over everything. He climbs up on the couch up and down stairs and loves playing outside. He also is trying to reach the door handles,so I think it might be time for locks up at the top of the door..


We just came back from Portland, for our clinic follow-up and all-in all it had good news. Urology showed that his re-plantation of the Eureter was a success and has been taken off his last antibiotic.. Thank the Lord! Those antibiotics aren't good for healthy people let alone one that has intestinal problems. So from Urology stand point he is clear and not another follow-up until 6months.

From GI point of view they are very pleased with his progress and he has one less hour of infusion and is now on a 10 hr infusion. Yeah! and they want us to continue going up on his feeds. He has been cleared down at Stanford for an isolated sm bowel transplant, so now GI is pushing us to list him on the transplant list, even though he is doing so well. They are concerned,because of how many infections that he has had and they don't want them to get the better of him. We are very torn on this issue and are just not sure what to do. Stanford would like to see how much more we can push his gut before they would do anything and that it wasn't critical.

We are praying for guidance as to what to do and looking at all of our options.

The Roller coaster of Gut bugs that wouldn't give up...

Well, the last few months have been a roller coaster of hospital stays. Joel has had GUT bugs that wouldn't give up. He had one bug after another and we were in the hospital every month for at least a week for the last 5 months.
the last break we had from the hospital only lasted a week and a half and hopefully we've killed that nasty bug.

Joel is into everything and if he's quiet he's in trouble. He is just a bowl of energy and gives a new meaning to a bouncing bundle of joy.

We had clinic appointment last month and they are very pleased with his progress. He is weighing in at 21lbs just a little over and is 29" long. He is starting to enjoy his highchair and the Dr's would like to see him eating .. His favorites are cheerios,Corn Chex,Rice, Ritz crackers and Grahm crackers..He's only have 2 poos a day which indicates he is starting to absorb his formula and solids that he's getting. His Dr. thinks his colon is starting to adapt and that is great news.

Because of the life threatning infections that he's been having we are having him evaluated for a small bowel transplant.We're still scared and yet hopeful at the same time. We haven't made any decisions yet we are just getting informed. Thanks to omegaven Joel's liver is in remission from the jaundice and does not need to have a liver transplant on top of it.

Joel's interests are Curious george cd's
Bob the builder
The Wiggles
Blues Clues
He loves Dogs

He gets to be in his first wedding this summer as his Oldest sister Katie is engaged and will be getting Married in July.. This should be interesting ..
My computer is running out of memory so I haven't been able to upload or download any pictures.. We should take care of that hopefully this week..I will try and get some pictures posted as soon as I am able.

As far as his formula intake next week he hits a huge bench mark for his feeding and reaches his targeted goal of 40 mls/hr for twelve hours which is 480cc's from the 2 we started with 19 months ago..

Joel is learning sign language to help him communicate and his signs the word please, all done,thank you, and verbally says momma and dadda and trying to say sissy and partially says the wor ugh for up.