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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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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Back In The Hospital

This is a quickie, but I will update later tonight. Jayden got admitted into CHOP today because his medicines are not effective and he is struggling to fight off whatever he has. They are starting intravenous antibiotics and we are still trying to figure out the plan for him. I hope to update more later tonight.

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A Little Under the Weather

We seem to have caught a cold, and of course, Jayden caught it. He went to the doc on Friday because his breathing was getting really bad and we put him on oral steroids and a strong antibiotic. He went back yesterday and they said he sounded good, but it was right after his treatment (literally within a half hour) so we are not sure if it was a false hope.

We are doing around the clock treatments with nebs every 4 hours. He is lasting about 2 1/2 but we are hoping we will see an improvement tomorrow.

The good news is his meds are working in terms of bringing his breathing under control, at least initially. His respiratory rate was up to nearly 70 on Friday and as soon as we did his treatment, it slowed to 40 again. Usually at 60 they consider kids in distress, but at least it is coming down.

We have been trying to get Jayden to drink the same amount of Peptamen without the tube because his nose and stomach were getting so irritated he was having a lot of bleeding. He is drinking it, but in two weeks he hasn't gained an ounce so we are pretty sure they will put him back on the tube. Still, it has at least been a nice break for him and hopefully he will be off it this summer sometime.

I will write an update tomorrow or Tuesday after we visit the geneticist. We are just praying we can keep Jayden out of the hospital and that he will turn around soon. He hasn't gotten any worse in the last day, which is definitely a blessing.

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Great News

We got the test results back for Jayden and he does not have cystic fibrosis. That means that although he has lots of other breathing problems, the worst has been eliminated. Some of the other problems he may grow out of as he gets older and the asthma may even get to be less of a problem as well. Thank you all for all your prayers and support over the last 5 months - we wouldn't have been able to do it without those. And praise God he is negative. You don't realize how much we take good health for granted until it you or someone you love's health is threatened.

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Some Good News

I just spoke with the doctor and the lab found two bacteria in Jayden's lungs is two of the most common bacteria around. That is great news because if they found weird ones, we would be very worried. They are going to start him on a course of antibiotics along with his 5 other medicines and hopefully the combination will clear up his infections and keep him healthy.

We will repeat the sweat test in a month or so, but hopefully he's on the side of kids who just have really bad asthma and acid reflux and just was having trouble fighting off everything at once.

Thanks again for your prayers. Please keep praying we can make it safely to summer.

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We're Back ... In The Hospital

So Jayden got admitted into St. Christopher's this morning. He was having trouble breathing, not getting mucus up, an increased heart rate and respiratory rate, etc. etc.

He is going to be here until at least Tuesday morning so they can stabilize him and then run the tests they need to run. He was temporarily taken off feedings, but one of the medicines they gave him here is helping a lot, so he got to start nursing again this afternoon.

At least we can get all these "appointments" out of here quickly:). Hopefully this will be the last time for a long time.

As always, prayers are appreciated.

We're at a new hospital and Internet access is limited so cell is better to reach me on.

Love,
ria

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Jayden's Heading Home

The doctors just cleared Jayden for going home from the hospital. We still don't know about our trip, but at least he is going home for Easter:). Thanks for all the prayers and love. We will keep everyone updated.

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Another Night....

Well, he had to go back on oxygen for awhile and so we're staying the night. He's back off it again, so hopefully he has a good night and we can head home tomorrow. Only time will tell. Not much else news. His CF test is scheduled for a couple weeks from now, but they will have the results 24 hours after it is performed, which is good. Until then, we hope to get a bit more rest.

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No More Oxygen!

So Jayden decided he didn't want his oxygen anymore and took it out early this morning. The nurses laughed and let him go, and this time his oxygen levels didn't go down too much, which is a great sign. The doctor said if he can keep this up throughout the day, we may get to go home.

His doctor said he definitely is asthmatic (really, you think;)?? They are trying to get him in for the sweat test this morning to test for cystic fibrosis, but if he can't get in this morning and he gets released, we will come back for that as an outpatient.

The prayers are great and he has been getting a lot of rest, especially since Ethan can't climb into his crib or poke him every minute of the day.

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Some News

So we have some good"ish" news. Jayden did test positive for a virus and hopefully that explains everything. We are hoping that means he's just been a somewhat unlucky little boy who hasn't had enough time to really build up his immune system and not signaling some more serious possibilites.

They are still looking at a few other things and haven't tested him for cystic fibrosis yet, which they will be doing in the next day or so. We are praying that comes back negative, but it is a possibility and we need to check into it. So at least we will know after he is tested.

Keep the prayers coming. They said if they can get him off of oxygen, he may be able to leave tomorrow, so we'll see.

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Update on Jayden

Well, he's doing ok, but they had to put him on oxygen overnight to stabilize him more. His oxygen levels were getting too low as he slept. We'll see how he does with/without it today. Today they are looking at many underlying causes for his never-ending breathing issues and we'll see what all the "experts" can come up with. In the meantime, it's just a lot fo waiting. Thanks for the prayers and keep them coming.

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Back For Another Round

I will update the blog when we get info.... As always, prayers are greatly appreciated.

Jayden is in the hospital again. Pleas say prayers they can help him and get to the bottom of his breathing problems. He is having chest xrays and a lot of PT, deep suctioning, etc. and will be staying for at least tonight. In his current state, he is not able to fly and will not be able to travel. They said they think with some effective treatments, that should change, but we just have to see.

We will have more updates later...hopefully this is a short stay:)

Love,
ria

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