Good News

So we took Jayden to his pulmonologist today and we discussed everything from our last hospitalization and their prognosis.

Jayden's breathing problems are officially diagnosed as tracheobronchomalacia. It is essentially the same problems we described with the bronchomalacia except it also affects his trachea. Dr. K said although he is struggling right now, the good news is that 90 percent of kids outgrow this by the time the reach 3 years old - which means we may be halfway through:). He said it is unclear whether the cartilage actually gets stronger or their airways just get big enough that the collapsing doesn't affect them as much, either way he has a good chance of outgrowing a lot of this.

As for the weight gain, he is finally gaining a little above his curve (which he really should since he is so far below the curve he's probably setting the bottom 1 percent and we can't possibly add more calories in his day). We are hoping the IPV is giving him the extra help and releasing pressure on his lungs. They said maybe by mid summer we can totally get him off of the tube and not have to consider any permanent options.

His lungs are still capturing a lot of air inside and it's not moving around wonderfully, but hopefully over time that will change.

The best news is that winter is nearly over and we will have survived another crazy winter! We are so looking forward to spring and getting to finally visit friends and family again:).

Thank you for your continued prayers and support!

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A New Week

A few updates:

Even though Jayden lost a lot of weight last week (nearly everything he had gained since November) he gained back a lot of it by his appointment yesterday, which is a blessing. He is finally eating again.

We think the IPV treatments are challenging, but really helping him be clearer, which means he burns less calories breathing and hopefully translates into weight gain.

We are in the process of getting set up with a home nurse who will likely come several hours a day to help me do treatments and give me a little break as well, which will be much appreciated.

Jayden still has bronchomalacia, which is usually gone in babies by six months. Hopefully he will still be able to grow out of it and the doctor said while it isn't the most serious problem we had to considered, it is also not something to take lightly in his case.

As long as we stick with the therapies, it will hopefully stay under control and not damage his lung tissue too much. It is considered a birth defect that does not allow people to breath normally because it makes the airways collapse, instead of move air through. The longer he can stay well, the longer his lungs have a chance to fully develop further.

We go to see his pulmonologist, which is technically a follow-up from his November hospitalization, but comes at a good time. We are just enjoying a quieter week:)

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Heading Home

We got cleared by the doctor this morning to head home today. Jayden had a bit of difficulties coming off his oxygen yesterday after the bronchoscopy, but finally was able to and as soon as we have our new consult about his new breathing treatment, we can get discharged.

We have finally been able to effectively rule out several serious issues and we are going to try this therapy and see where that leaves us for awhile. They think overall we may just chalk it all up to weak lungs that have difficulties clearing mucus, are hypersensitive and hopefully he will grow out of it.

As far as his weight, they said it still doesn't explain his issues with the weight, but we will just have to keep an eye on it, continue the feeding tube and hope the new therapy helps his lungs function easier and, in turn, helps him use the extra calories to play catch-up a little.

Thanks for all who have helped and all the prayers. As always, they have been deeply appreciated!

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Thursday Midday

Jayden just finished his bronchoscopy and did really well. He is in recovery and we will be back to see him soon.

We began his IPV treatments last night. They force air into his lungs in bursts to break up the mucus and help him get it out. He HATES it, but we are hoping he can get used to it. The treatments have already made a big difference.

It looks like we will be able to leave tomorrow and get home for the weekend. I'll post more updates later.

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Wednesday Update

So we had a busy day. Jayden is responding better to the increased drugs and therapies. It looks like we are going to switch up some of his therapies and add something that should help him break up mucus easier and in turn, hopefully, keep him out of the hospital more as well and keep him off the strong antibiotics and steroids he has been on throughout the past year.

He may be having a different type of bronchoscopy tomorrow to look at a few more things.

The docs think these new therapies may help keep us from getting to this point time after time, which is positive.

Not too much else. He is not eating well and losing weight, which is frustrating, but hopefully he starts eating more again soon. We are hoping to be out by Friday, which looks hopeful right now.

Sorry if this isn't very coherant - just trying to get an update out:)

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Settling Down For The Night

We are finally settled down a bit in here. Jayden's oxygen levels have been ok, but he is sounding really junky and they can't clear his airways really well, so we're hoping the extra meds give him the boost he needs to get over this and get home to playing and stealing his brother's trains:).

They are going to continue working on the additional labs they have been ordering. We are accepting that we may not get a diagnosis and may just have to keep treat the issues as they arrive, but if we can get him stronger, that should help.

Since the beginning of the year, Jayden has lost a good amount of the weight he has gained since starting the feeding tube so we are not sure where we are going to end up with any of this stuff. He isn't getting any worse, but wasn't getting any better after 5 days of antibiotics and steroids, which is mainly what put us here.

The docs said we will be here at least a few days.

Good news: his lung biopsy finally did come back and it looks like he does not have primary cilliary dyskenisis and the rapid RSV test came back negative too, so at least his Synagis shots seem to be doing something.

Thanks for the prayers and keep them coming. We are hoping to head home by the end of the week:).

(The picture is from a few weeks ago, but it's one of my favorites I've taken of him so far.)

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Some Test Results

We got back some results for Jayden yesterday. The GI specialists said the biopsies were generally normal. He had some gastritis in his stomach and some abnormal cells indicating a mild allergy in his lower bowels, but nothing too serious in the GI tract. We will have to wait a few weeks for the pulmonology results.

We still need to figure out what is causing the constant fluid in his lungs, but it does not look like he is aspirating from his reflux. Maybe the primary ciliary dyskenesis testing will tell us more. If it is inconclusive, they would like us to travel to North Carolina for more testing, but we are just taking it one step at a time.

The plan is to keep his tube in for at least a few more months and then, hopefully, he will be able to go without it. His synagis shots seem to be helping and he has only had to do the oral steroids a few times since winter began, which is too bad for him.

Truthfully as long as we can keep him relatively healthy, we're happy:). We are so grateful that his hospitalizations haven't been because he is in acute distress lately. Thanks for all the prayers - we really do appreciate them!

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We're Home

We got to come home, but with the day being a very long day and a lot going on, we just kinda crashed so sorry for the late update. Jayden did really well overall. Here is what we know:

His right lung was very filled with fluid and mucus. It was the same problem he had last year, but this time it wasn't infected (probably due to the two months of strong antibiotics and intermittent oral steroids he's been on). It still shouldn't be there though, so we have to figure out why it is there.

They hoped to rule out primary ciliary dyskensis, which is essentially where the cilia in the lungs doesn't move the mucus through like it's supposed to. They couldn't because of the lung full of fluid, but sent a biopsy and should get test results either way in a few weeks.

The GI tract (stomach, intestines, colon) looked alright when they went in. They took samples that will tell them if his enzyme levels and vitamin levels are alright, but the tissue looked good.

The CT scan looked alright, but the doc only had a quick glance at it due to time and was going to look more closely this weekend.

The five biopsies they did in GI should be in result-wise in the middle of next week.

He's doing alright now. He's cranky and probably a bit uncomfortable but is at home, so that's good.

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In Recovery

Yeah! He did better than they had hoped and we are now hanging out in recovery waiting for him to drink some and eat some and to make sure his oxygen levels are ok.

A lot of the test we will not have back for awhile. Except for a brief period during the lung biopsy, he did not have many additional breathing issues while he was out.

It looks like he did so well they have talked about letting him go home if he is ok without the oxygen, so that would be great since they were just going to keep an eye on him.

Thanks again for all the prayers and now we will just be waiting for more test results....

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In The OR

He's still in the operating room. He began about one and we just spoke with the pulmonologost. He is done and we are waiting now to hear from the GI specialists. The pulmonologist said his left lung was clear and right lung was full of fluid, but at least uninfected.

They got two good biopsies and are now doing the other five biopsies in his GI tract. The biopsy results will not be back for a few weeks. He said he initially got a quick scan of the CT and it looked ok, but he needed to go back and look at it more in-depth.

More info later:).

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First Round Completed

Today was our easy day - VERY easy day:). We did the milk scan which was just long, but not a big deal and met with anesthesiology. We are set for tomorrow and our hospital stay. It looks like Jayden will be put under for several hours to get everything done.

He begins at noon tomorrow (EST) and will likely end somewhere in the late afternoon time. We will not likely be in a room until mid evening. Depending on when we get information, I may post again in the afternoon, but definitely will after we get settled in his room.

The doctors are taking five or six biopsies when they go in tomorrow in different places. The biggest thing that's different is they don't tend to do this stuff on babies as young as Jayden, but then again he's not the typical baby:).

Anyway, all of your prayers are appreciated!

More soon....

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Jayden's Next Hospitalization

Jayden's next hospitalization is scheduled for next week. He has a pre-op appointment on Tuesday, a milk scan on Wednesday and then will be put under for the CT scan, endoscopy and lung biopsy on Thursday.

Hopefully it will all go smoothly and we may be out by next weekend. If not, we may have a bit longer stay, but he's a trooper and we hope these tests may give the doctors some more insight.

We'll keep you all updated on here:)

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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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Some Photos

They are increasing his feedings but haad to increase his oxygen again. Now that I have my cameras up here I am having fun taking photos - every day is a photo op. He is one of the biggest babies in the NICU (as is evidenced by his bed). More tomorrow:)

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