Jumping Up (Well at least a little:)

Jayden went to see GI yesterday and he went from the .40 percentile (yes less than half of a percent) to the .97 percentile, which means he is almost at one percent and he doubled where he was at. His height is almost at 10 percent. His head, in true Lozano form is still at the 25 - 50 percentile (right in the middle). He still hates his new treatments, but we are working on getting him to do it about 15-20 minutes two times a day, which takes about double that time each treatment because he fights it off so much. Regardless, we are seeing him working less daily to breathe, which is great.

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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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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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Fun In The Snow!

The boys had a blast playing in the snow in our first significant snowfall this year. Ethan finally got to build his snowman, but because we didn't get to build it the day it snowed and it got cold, it became difficult to pack and the snowman was quite funny looking:). Ethan didn't mind. Jayden made it out for a bit too, but fell over right onto his face and cried because of how cold his face got ... poor baby:). Anyway, enjoy;)

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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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