First night without TPN

Last night was our first night with no TPN, no Omegaven. He is still on TPN 6 nights a week, but this was our first "night off" from TPN since Boston told us we could go to 6 nights per week instead of 7.

Peter was hooked up to a "simple" bag of 10% dextrose with some added sodium so that he would receive enough fluid to compensate for the volume of TPN he is accustomed to at night. We were not sure how he would do... BUT HE DID GREAT!!! He is very chipper this morning and not a drop of fluid retention is evident. In fact, his urine went up an extra 100mL overnight. Low blood sugar was another potential concern, but we see no signs of that either. Toddler energy should be able to be bottled up and given to parents!

I am curious to see if his desire to eat/drink goes up on the day following no TPN. He is liking the choice in formulas to drink since Boston gave us some samples to try. It looks like we will be going now with Vital Jr. Vanilla, Vital Jr. Strawberry, and plain Elecare. We still get some protesting as we try to fit in 10 feeds of 60mL of formula a day, but the protests seems to be lessening with a choice of what he should drink. He is really enjoying his dinnertime feeds of baby food now too... again with an improvement when given a choice versus just being presented with what he is to eat. And of course the obvious thing is, why wouldn't he want a choice??!! Don't we all want some say in what we are given?!

Boston visit May 2009

We went up this time for the usual Omegaven/CAIR check-in as well as for an endoscopy to evaluate the improvement or worsening of Peter's esophageal varices which were not very bad in August 2007. We were also going to get Peter's gastrostomy site fixed that it may stop needing a fortress of dressing to keep the leaks under control. 

7 hours in the car on Monday, 8 hours in pre-op testing/meetings on Tuesday, and then he got sick on surgery-day which was Wednesday. Although disappointing, surgery was ultimately cancelled b/c he should be in tip-top shape for these elective procedures. Instead, we had blood cultures drawn with one positive culture in the red lumen. However, repeat cultures before antibiotics were started are revealing no infection at all. The decision is to stop the antibiotics after only 5 days. He has had nasal congestion for over two weeks now and possibly he was clearing a mild infection on his own between Wed an Thurs, or somewhere along the line there was contamination of one of the culture tubes. It is hard to be sure the exact reason there was nothing growing with the second set of cultures, but it is relieving that we can stop the antibiotics now and avoid another set of cultures. 

 Thursday we had CAIR and of course Peter was back to himself, and then we drove back home after that, pulling in to the driveway at 1:45am. Peter could not stop smiling once he got into his bed at home. 

 The things we found out from our visit to Boston are many, and as follows: 

 1. Echo of Peter's heart indicates that the enlarged coronary arteries have not changed since the last echo over a year ago. Good news! 

 2. PICC line is in correct placement still per chest x-ray. Confirmation of correct placement in a growing child is a good thing. 

 3. Dr. Jennings feels that Peter's gastrostomy may be so prone to leaking partially b/c there is very little muscle supporting the G-tube MICkey button. He is going to close up the original site and create a new gastrostomy altogether. I'll have to post a photo of the crazy dressing we have to do now to keep the current site contained. It is an infection waiting to happen b/c it creates a moist, dark environment, but the only other alternative has been to let the site leak all over the place, letting a good portion of his feeds leave shortly after he is fed. A new site should allow for minimal dressing, minimal leaks, and best of all should allow Dr. Jennings to see how well Peter is able to heal from a "simple" surgical procedure. Peter's portal hypertension, INR of 1.2, and unique bowel structure make surgery much more complicated than a child without all of that. How Peter heals from this will likely give us all some insight into future bowel surgeries for him. 

 4. Apparently Peter's hydroceles may be repairable at this point too. When we go back up for the surgery and endoscope, Dr. Jennings possibly will correct this problem too. 

 5. We are able to shave off one night of TPN a week now!! This will leave Peter with only 6 nights of TPN a week, and one night of replacement fluid since he can't currently drink enough to compensate for the fluid he will not receive overnight. The nutritionist said Peter's weight gain is nearly double what it should be at this point, so that allows for the loss of a night of TPN at this point. How exciting!! 

 6. We will add an extra 5 mg of iron to his TPN once a week since his iron levels are on the lower side again. He is biting and chewing on things now, not food, but things. While I thought that might be a good thing so he becomes more oral and interested in food, it also be a symptom called "pica" indicating that he is low on iron. 

 7. We were given some samples of other formulas to try in an effort to get Peter to stop resisting his elecare so often. He goes through periods of taking it just fine, and other times it is taking extreme bribing to get him to drink it. We are sampling EO28 Splash and Vital Jr. So far he seems to like them both about as much as he likes the Elecare. The variety allows us to at least give him a choice, but so far nothing is winning him over wholeheartedly. 

 8. Discussing why Peter tends to do so poorly with his feeds when he eats too closely to bed-time or when he has to sit for long periods of time (in the car or waiting in the hospital), Dr. Kamin feels that it is likely that Peter's digestion is somewhat positional. The duodenum is very scarred and likely has a tendency to balloon with feeds. We notice that Peter eats much better on days he is more active. He is more prone to vomiting when he eats and does not have the opportunity to to move around much. We also notice that he vomits more when he is holding onto fluids and getting more ascites in the abdomen. I didn't ask about the why's on this, but wonder if it could be that as he has more fluid in the abdomen there is less room for movement of the bowel as he is digesting. We are having some issues with feeds now as he recovers from so many days of sitting and possibly from side effects of the antibiotic. As much as Peter enjoys the trip to Boston, we usually have to deal with feed and/or fluid issues for a bit until he settles back out. 

 I think I have recalled all of the main points from the trip. We feel it was a really encouraging visit!! 

 Oh, by the way, Peter is in a "big boy bed" now. We replace his crib with a toddler bed a month ago. He has not missed his crib one little bit!

Spelling Genius??

I don't know that we can declare genius status yet, but we decided to see just how many words Peter is spelling these days, and we get at least 50! He is only 3 years and 4 months old and can spell several 2 letter, 3 letter, 4 letter, 5 letter, 6 letter, and even an 8 letter word accurately. OK, he still isn't jumping or running, and he still isn't eating table food, but what a curiosity is his spelling capability.

The other neat thing we see is how much he has progressed in what he can do physically. We finally captured the backwards bear walk on video before he moves on to some other trick and leaves this one behind. He is now independent on stairs if there is a railing or something else to hold onto. We still hover nearby to catch him if he should stumble, but his confidence and skill are gaining. We are in the process of attempting to learn how to pedal a tiny "Big Wheel" so he can ride in the driveway with his siblings. He is also walking around the block twice a day on many days, versus just once a day, for a total of a mile and a half a day!

One last hurrah is that we are up to 100mL of elecare every two hours now. He can drink the 100mL all in one sitting. He takes 5 feeds like that per day, and then nothing enterally overnight. He is still on TPN and Omegaven 7 nights a week for 12 hours per night, but we are having dreams of reducing some of that now that he is up so far in feeds and still not needing to be vented at night via G tube.

Spelling:


Backwards bear walk: (forgive the protesting halfway through, and the overly-exuberant-mom-talk, I goofed on the first three attempts at videotaping and he was ready to be done the bear walk by the time I finally got the video recording going properly.)

February's Boston Visit

Peter had the best check-up to date when we went up in late February. He went in spelling words - "a-p-p-l-e is apple," "J is for Jill," "v-i-o-l-i-n is violin," and so on. I have never seen a three year old spell like he does, but Dr. Puder and Kathy Gura say that the Omegaven kids all seem to be really smart, so perhaps it is that good fish oil at work yet again.

After the spelling impressed everyone we went on to focus on his growth and behold, Peter has grown in height and weight, and not just following the curve this time. He grew almost 4cm in two months, and the weight gain is not fluid weight, it is real weight. Dr. Kamin felt his abdomen and we all agree that his abdomen doesn't have the feel it used to. Instead of feeling a little spongy with fluid along the sides, it feels more solid.

Peter had essentially been able to keep the G tube closed for the last month and a half also, which was huge progress compared to our December visit where Peter was needing the G tube put to drainage overnight every night in November and December.

We dropped the dextrose in the TPN a little bit and made plans to advance feeds further. He was and still is at 26 calorie elecare and it was felt he can stay there. We have been working on changing his feeds from 45 mL every hour to 90 mL every two hours and we just reached that goal in the last week. So far, so good. When we get to 115mL every two hours we get to drop a little TPN and begin to try our hand with baby food again.

Currently he takes 10mL of stage 1 baby fruit with his probiotics, but we have not pushed foods further since the focus has been on advancing elecare. Peter is the type of child that does better with one change at a time versus multiple changes, so we can figure out what causes problems more easily (usually more easily said than done though). We are stocked with stage 2 foods in anticipation, but also know that the last two times we fiddled with baby food he blocked up. Hopefully he'll do better this time... we think we'll be able to try the baby foods in another week or so. This time he is on probiotics, so we'll see if that is helpful with the baby foods advancing. Maybe a happier intestine will be less likely to block up. Blockage could also be from stricture, so we'll see as we go along.

More photos to come along soon. :)

Playing in the snow

The photos are a month old, but here they finally are. Peter had a great time sledding and being out in the snow... until one of his brothers threw snow at him and it went down into his coat. Ah, siblings! One of these days Peter will have his revenge snowball throw.



OK, Peter didn't really clear any of the driveway, but he at least held the shovel for a while and smeared a bit of the snow around.




Thanks for taking me sledding and out in the snow Kristy! (Kristy is one of Peter's wonderful homecare nurses.) I'm sure it is obvious, but the girl in the photo is not Kristy. This is Peter's sister in the photo.



After an hour plus in the snow, it was time for a nap... anywhere!