A Little Update

So we got some of the tests back and we are more confident now that he doesn't have cystic fibrosis or Shwachman Diamond Syndrome based on the levels of pancreatic functions they could measure, but the doctors will still not totally rule them out. He did another sweat test and his results were even better than the first time, which is good.

We are still awaiting many tests results and if he can get over whatever he has had for the past several weeks, he will be rescheduled for his CT scan of his chest at least. We are going to try to hold off on the one of his abdomen because they said that one is like getting 40 xrays worth of radiation and so unless we think it will give us some answers, we will not do it right now.

He is tolerating his night feeds a bit better, but we had to cut back to half because the full amount was just messing with his system too much.

He had actually lost some weight when we went to his doc for the post-hospital checkup, but he has weekly checks in the office coming up so we are hopeful he will show some improvements soon.

Jayden is still bordering on going back in the hospital right now though. His breathing is labored and we can only kick up his medicines so many times in a row before it becomes ineffective. Please continue to pray he can regain some steady health at least.

Ethan has been such a good big brother. He loves singing songs to Jayden when Jayden is upset about his treatments and kept rubbing his head to make him feel better. Ethan is getting quite excited about Christmas too.

Hope you all had a great Thanksgiving!

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We're Home

Well we're set up at home again:). We are really hoping the hospital visits are held to a minimal this year, but grateful they can do so much to help Jayden.

He will be on a feeding tube for at least a few months at night as well as eating normally throughout the day. He will then be evaluated to make sure he is gaining anything. If not, they will have to adjust his feeds and go from there.

He has follow-ups to see all the specialists and will hopefully stay well enough to wait to see them until those visits.

Not many of the tests are back so we'll hear over the next month results and maybe be able to figure out what to do to keep him healthy and help his weight.

We have a home nurse coming today to set up all his machines and meds and give us additional training so we will be pros at home.

Other than that he is a happy baby as usual. We are glad to be home in time for Thanksgiving and thankful for the wonderful support from our friends and family.

NOTE: We will not be coming into town anytime before the end of April at the earliest - at least as a family. It is just too risky to Jayden's health to travel and it's a risk we're not willing to take. We will miss everyone at Christmas and Thanksgiving and pray you all have a very blessed holiday!

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Monday

Sorry - no creative ideas for a title:). We just got word we will not be able to go home today because they can't get all the equipment we need to go home with until tomorrow so we are just hanging out.

They just did another sweat test this morning for their records and drew more blood last night.

He did really well with the feeding tube last night and even got up to 40 ml/hr for the last two hours. He was 7.93kg (or 17.483lbs) when we got in last Thursday and is 7.96kg today (or about 17.549lbs) today. The doc said it may take his body some time to adjust to the change in food and to start getting positive gain.

I still have no voice and spent the night in the bathroom with the flu so I am sure that is what made him throw up on Friday, which is a bit of a relief because at least we know it wasn't an allergic reaction.

He did have an eventful morning because he managed to jiggle his side of the crib down after bouncing on it while pretending to nap and fell out onto the floor. I got them to replace his crib because it freaked me out - especially because I always check the sides before leaving him in it and had just before that. He was thoroughly checked and is doing fine - he was just really mad.

No new tests back - just a lot of waiting. Hopefully we will get released tomorrow morning. As much as we love living in CHOP world, it would be great to go back to my own bed and do normal things like think about shopping this weekend for Christmas:).

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On The Right Track

Jayden had a great night last night. He did not throw up again and the slowly increased his feeds to 25ml/hour. The goal is 40 ml/hour. If he does well again tonight, they may let us go home tomorrow because they are nearly done collecting the samples (blood urine, stools) they need to collect.

Jim was a rockstar last night and successfully inserted the feeding tube, tested it and got him set up for the night. I reinserted it this morning and will be in charge tonight. Then we will do it at home for awhile while he hopefully gains weight.

They have not weighed him today, but hopefully his gain will be positive.

His lungs are improving as well - just an added bonus. It has been a bit of a break for Jim and I to not have to administer every breathing treatment and med as well.

Many of the test results will trickle in over the next several weeks and we'll see how it goes. There's no point in us staying here after we get set up as long as he is doing well, so that's great for us.

Not much else fun. The weekends are quiet as many of the labs are done only throughout the week and the docs tend to just check in and keep the status quo more or less.

Besides the tests, he has been as happy as usual and he and Ethan were having fun playing with the trucks child life brought into us.

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Saturday Update

Sorry for the delay but it has been quite busy and I got sick so by the time I got home last night and got Ethan settled down, I crashed. I also lost my voice so thank you for all our friends and family who have called and offered support - it really means a lot to us. Please forgive us if we don't get a chance to call back but at least for today, I'm are not planning on answering many calls or returning calls so I can rest my voice (unless you're our mom or one of the docs:).

Hmm where to start. His first night of tube feeding went smoothly - they started him off slow. His second night wasn't as smooth and he threw up everything - including some undigested food about 1:30 am. Consequently he also lost weight, although just a bit. He still had undigested lunch from eating at 4, which wasn't great, but we're just going to have to keep with it and see if there is a pattern. If the same thing happens tonight, we will have to back off and try to change up the Pediasure and/or change some of his meds.

They also doubled his antibiotics he's been on since Monday because he is still not close to 100 percent. Even though that's not the main reason he's here - he was nearly admitted last Sunday because of his breathing and wheezing so we really need to address it.

They are analyzing a stool sample to see if he is really taking in the nutrients and fat from his food or if it just goes right through him. We really think that will be the key to guiding us where we look next.

Otherwise he is having fun. Ethan has helped him turn this room into a playroom and they are having a blast with watching a ton of movies.

We are putting a hold on the CT scan because of whatever is going on in his lungs right now. If they sedate him for the CT scan and he's having issues with his lungs right now, he could have to be intubated and on oxygen and we would be here at least another week. They think the tests they have in right now may tell them what's going on or at least point them to the right area.

The nurses are extremely skilled and obvious veterans on this floor and the docs we are working with are superb, so we are in a good place. His basic blood work came back relatively normal except for some areas that indicate he is sick right now, but when isn't he:)?

Most of what they are looking at makes him more susceptible to infections and viruses, but we already suspected that. It just makes the washing hands, hand sanitizers, flu shots and immunizations that much more important.

He has ripped his NG tube many times and since he is only doing night feedings, we are waiting to reinsert them until night time so we don't have to worry about it.

Jim and I are going to learn how to insert his NG tube tonight so please pray for us. It's not supposed to be difficult, but neither of us set out to become medical professionals so we are a little apprehensive of doing it. It's also not fun doing stuff to your own kids when they are screaming and pleading for you not to. They are ordering us the equipment we need at home and we are hoping this is just a short-term deal.

We are so grateful to be getting answers, but still it is a bit overwhelming. We definitely have moved to another level of care. The benefit is they all really take your concerns and opinions very seriously as a parent (not always in general peds). The hard thing is being part of the chronically sick kids, but at least we have what we need here.

Not much else happening this weekend. Thanks for continuing to pray. That is what we truly need more than anything and what helps us to walk this journey and have the strength our boys need for us to have.

PS: I am working on adding a subscription link where you can enter your email and get notices each time we update the blog ... just an FYI for those who are interested.

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We're Settled In

We're settled into our room and got set in the South tower of CHOP. We got a private room (YEAH!) and have a litany of specialists heading in to evaluate Jayden. Thia is going to be brief because it has been an extremely long day, but Jayden is doing his first feeds. They are doing NG feedings (not through his stomach unless they have to do this more long-term) and they are just doing it at night. Jim and I will learn how to insert the tubes and set up his feedings later, but the nurses just took care of it tonight.

They sent off for a ton of blood work and he has been seen by the geneticist, two pulmonologists, respiratory therapies and GI specialist. He was also taken to get some more xrays completed.

Tomorrow they will be collecting stool samples and he will be sent off for a CT scan. He may also have a lymph node biopsy, but a lot will depend on his blood work ups.

A funny note: one of the pulmonologist came in to see him (the pulmonologist on rounds) and was talking to us about lymphactasia (sp?), another rare condition he thinks is worth looking into. We talked about the day and this new idea and then we talked with him about Shwachman Diamond's Syndrome (SDS).

He said, "Well Dr. K gets a bottle of champagne if it's SDS and I get a bottle of champagne if it's lymphactasia." Jim and I looked at each other and burst out laughing. (Dr. K is normal his pulmonolgist). At least we know we're providing a bit of entertainment here.

Dr. Coren said they do fine with the normal kids here, but what they really love are the puzzles like Jayden, who are a lot more complicated to figure out. Jim said at least we're adding to their knowledge and expertise:).

Ok - good night and more info tomorrow.

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On Hold ...

So after spending most of the day on the phone working out arrangements for Jayden and Ethan, we could not get him in this afternoon as they had hoped because we ran out of time. He is set to go in tomorrow morning at 9 am and we should be set up in our room by midday. Thanks for all the prayers - they bring us strength as we continue working on figuring out this challenging problem and helping Jayden grow to be a healthy baby.

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We're Heading To CHOP

So we went in for Jayden's 1 year checkup today and things were a bit shaken up for us. He has only gained 2 pounds since his 6-month checkup, even with the extreme addition of fat and calories to his diet so they are admitting him into the hospital for a week or so and putting him on a feeding tube. They will also teach Jim and I how to give him feedings as he will probably be on the feeding tube for a month or two at night while he sleeps.

The biggest underlying concerns with his weight and health is that if he would catch something, it could be a struggle for him to overcome it. They want us to go in tomorrow, but have given us a few days to work out the details.

They (his pediatrician and pulmonologist) are discussing possibilities for what we need to look into and what treatments and specialists are next on the list. While we are there, he will be under the care of pulmonology. He is getting set up to see a nutrionist, GI specialist and the geneticist as well. They are also talking about sending us to John Hopkins in Baltimore to get some testing done that can only be done there currently.

He is being treated as a cystic fibrosis patient right now because although we did a genetic test, they are still not comfortable ruling out cystic fibrosis. The test we did only tests for 70 known mutations and there are more than 1000 known mutations linked to cystic fibrosis. If he does have it and they delay treatments, it could cause permanent damage for him, so they feel they should be more aggresive. We feel we would rather be safe than sorry.

They are looking at us using some more aggresive therapies with Jayden to help break up congestion in his chest and hopefully prevent infections from brewing.

Also as first signs of any cough, he will have to start some aggressive antibiotics to hopefully ward off any long-term infections.

We will also continue to look into Shwachman Diamond's Syndrome.

The good news is he began Synagis today and hopefully that gives him an extra layer of protection as we get deeper into the winter season.

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One Year Old Fun

Jayden turned 1 on Saturday and had a birthday party with a few close friends. He LOVED his cake and sucked on it for awhile which was comical. He also had fun playing with Luke and Ella (and all the adults of course:). He and Luke start getting really excited now when they see each other.

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Immunologist Update

His antibody levels and bloodwork can back in the normal ranges - yipee! It doesn't give us any answers but we may just have to rule out a millions pieces before truly being able to help him. He goes in for his 1-year appt. next week and will begin the Synagis. Hopefully he's gained a bit of weight. He was 18 pounds the other day with two layers of clothes on and a full diaper, so I'm guessing he at least has hit 17 pounds.

Also if you can continue the prayers. He is getting sick with something and has been sounding worse throughout the past two days. Hopefully we can just continue to fight it at home and the wheezing doesn't get too bad.

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Jayden Got Approved

I just got a phone call that Jayden was approved for Synagis this year - praise God! Hopefully that will help him get stronger and help us figure out his complicated immune system.

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Just The Four Of Us

Man it is difficult to get kids to smile (or even look) at a camera when no one is behind it... I guess that's a downfall to being a photog and never usually hiring one to take formal pics:). BTW dad, I took this with my point and shoot because I lost the head for my real tripod and just had my tiny backup one... worked out pretty decently.

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Now An Update ...

We went to the pulmonologist yesterday and it looks like we are on our way to visit more specialists.

First some really good news: it looks like the insurance company is putting through an approval for Jayden to get the Synagis shots throughout the winter (once a month for 6 months). It's casually referred to as the RSV vaccine and may help keep him healthier. It doesn't mean he can't get RSV, but may be able to build up antibodies ahead of time to help fight it. It is extremely difficult to get approved for and very pricey so the only way we can get it for him is if insurance covers it. The nurse in charge of it has been working on getting him approved for several months now.

The pulmonologist was nice and gave us some interesting insights/opinions. He said he's not convinced he has asthma, but thinks it is a secondary symptom of other issues. I could give you a long explanation of all we talked about, but I'm just going to sum it up here, so if you want it call or email me. We will be going to see a pediatric GI and the geneticist.

We are also looking into a genetic disorder that while rare, actually encompasses all of his problems. It presents itself similar to cystic fibrosis, but doesn't affect the lungs in the same way and the kids test negative on the sweat test. The name is Shwachman-Diamond Syndrome.

We don't want him to have any issues, but he does and right now we are just spending a lot of time treating what seems to be the symptoms, but not getting down to the problems. The long-term effects of some of his medicines can cause problems and we want to help him develop how he is supposed to.

One of the biggest blessings is that we are located so close to CHOP and they see a lot of kids with this and similar problems on a regular basis so they are very equipped to handle it. Hopefully somewhere along the line we can come to a conclusion and not keep adding specialists:).

As always, continued prayers are appreciated, especially that we can help him by not sticking him through a million more tests or procedures.

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Grandma and Grandpa Neels Visit

The boys had a lot of fun with Grandma and Grandpa Neels and Aunt Lauren and Uncle Paul. We took a quick family photo at a park near our house as it got dark. It actually too dark at the end so whatever:). You work with what you have.

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Halloween!

You can see all our Fall pictures on our family gallery. Password is Neels .

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