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:)

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!

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!

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.

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.

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.

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.

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.

We're Back Home

We've made it back home on our 6th day back in the hospital. We think we're getting more answers now, which is helpful. They did find increased white blood cells in his lungs, which signal an infection. Now we have to figure out what caused it and how we can treat it. We are still awaiting the full pathology report.

Here is a cute picture of him in the hospital. He spends a lot of time flirting with the nurses, but is sure happy to be home. Now we are hoping to get a bit of rest and spring cleaning in.

Plan Of Action

So I spoke with his pulmonologist this afternoon. She said a lot of the irritation may be aggravated by the acid reflux, so we are getting a new acid reflux medicine. They are attempting to grow cultures in the lab to figure out what was in his lungs and we should know that by Friday or Monday. If that shows bacteria, they will give him the appropriate antibiotic.

They are going to wait a few weeks for another sweat test in hopes he gets bigger and healthier.

Finally, if he has a good night, we can go home tomorrow! Yeah:). Hopefully we can keep him out of the hospital for awhile:).

Done With The OR

Jayden had his bronchoscopy and the flexible tube down his nose. They decided not to do the larynxoscopy because his larynx looked normal and he had a lot of inflammation they want to minimize causing extra inflammation.

He does have some trancheomalacia and a lot of bronchialmalacia, which pretty much means the cartilage in his trachea and bronchial tubes is very soft and floppy and collapses easily with inflammation.

His left lung had some thick mucus and was inflamed, but is right lung had a lot of mucus and was very inflamed. She tried to suction some of it out, but his right lung kept collapsing in on it. They sent samples to the lab to be tested, which may or may not tell us much.

I asked her about the cystic fibrosis and she just said we'll wait to see what the pathology reports say. They may tell us something or may not, they are not all conclusive. He will still do the sweat test when we can.

For now he is sleeping off the anesthesia and they are going to continue giving him steroids to help reduce the inflammation.

He is also going to do a course of antibiotics in case there is bacteria growing in his lungs.

We'll update everyone when we know more.

Halfway Through

Jayden's Upper Gi came back completely normal today, which is fabulous. It means he does not have anything from the outside pushing on his airways (any growths or tumors). We tried to do the sweat test, but the think he was too dehydrated from not eating before the upper GI because he didn't have enough sweat to test. The doctors are thinking more and more that cystic fibrosis is not the cause of his medical issues, but still want him tested.

We just entered the period of his no eating for the procedures later today. He is on his IV fluids, but it's difficult for babies to understand why they can't eat when they are hungry. He will not be a happy baby come morning, but pray they can get him in the OR early. Also pray for the anesthesiologist and all the doctors who will be looking at his airways. He will have three procedures done and then they may take some biopsies as well to test, especially if they see any abnormalities.

I will update more as more test results come in.

Preparing For Testing

Not much to report. We are just waiting for all the testing to begin. Jayden is doing well and his oxygen levels are doing well.

Hopefully we will start to get some answers soon. We will be in until at least Tuesday evening or Wednesday morning and if they find some serious stuff, it could be longer, but we will just see. His CT scan is also scheduled for Tuesday. Not too shabby, we could get them all done in one shot:).

Love,
ria

Saturday Fun

Jayden is doing ok. He had a better night and is getting to eat again. He will be here until at least mid day Tuesday because they have him scheduled in the OR for a bronchoscopy with the ENT, whom he saw last night, and the pulminologist on Tuesday for a bit. He still has an upper GI on Monday, but now as an inpatient and he's doing the sweat test here as well.

Nothing else fun. He's just recovering from whatever he got this time and we're setting up shop here.

Bonus: This hospital offers free meals for nursing moms. I guess they figure if they aren't feeding the patient, might as well feed the one who is feeding the patient:).

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

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.

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.

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.

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.

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.

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

Home Again

So Jayden came home tonight. He had an unidentified virus that caused the respiratory issues and a weird rash, but is doing a lot better. They weren't sure we'd go home today, but luckily they decided at 8 pm we didn't have to spend the night because he did pretty good and was finally eating enough (with a little prodding from mom:). Thanks again for all the prayers and please pray the rest of winter is uneventful for him and he is able to just be a healthy baby.

Update On Jayden

Great news - he tested negative for RSV this time so he may just have bronchiolitis caused by another virus. We are in a regular room and if he does ok with his breathing, we may be allowed to go home as early as tomorrow. They said he may have hit the worst of this one this morning. A quick stay isn't so bad, but please keep up the prayers because we will need them to make it through the rest of winter:).

Back At CHOP

Jayden is getting readmitted into CHOP. He is not going to be in the NICU this time (hopefully at all) but they think he has bronchiolitis again from another strain of RSV. We will let you know when we get chest xrays and the mucus tests back.

Fun Tidbits - Ethan and Jayden

I am enjoying our time at home now that Jayden is home. Jayden is still sick and will likely be for another week or two, but is also improving, which is great.

The doctor said when he was admitted to the NICU his lungs were holding the most fluid they could hold without shutting down, which is why he was admitted into the NICU and not just the hospital. She said he was one of their most severe RSV cases they've had this year. Praise God for all the prayers and that he is recovering so well!

Now we just have to get through the rest of the cold/flu season without him catching something else. The doctor said that is the biggest threat to him and could be very harmful if he caught something. When it's put that way, it's not too difficult to become a shut-in for awhile.

Onto something not health related(it is so nice to be able to do that).

Many people have asked us about why we picked the name Ethan and even more about why we picked Jayden.
The biggest reasons were

• because we liked them


• we loved the meanings


• they were not too common, but still known (at least when we picked them)

Ethan means firm, enduring, strong. The origin is Hebrew.
Ethan was a man distinguished for his wisdom in the Old Testament. He lived during the time of Solomon. He authored the 89th psalm.

Jayden was derived from Jadon. It means thankful or God has heard. The origin is also Hebrew.
Jadon assisted Nehemiah in rebuilding the walls of Jerusalem (Neh 3:7).

Homeward Bound

The doctors came in and said Jayden has made such good progress we can be released TODAY:). They said he isn't 100% and won't be for awhile, but because he is doing ok off the oxygen and other help he needed until yesterday evening, and because he is eating well we can bring him home.

Thanks to everyone who has offered prayers for him. This virus is very scary and does kill some babies every year. While we knew that, we were praying he was strong enough to fight it off. We will have to be extra careful with him in the next year, but he should make a full recovery.

Thank God our little one is on his way back. He even was playing and awake a bit this morning before wearing himself out eating - he is a true Lozano / Neels .

More Progress

Jayden made some good progress today. He was finally able to nurse again and I don't think I've ever seen him so happy or content. They warned me he may have a lot of problems and may not take to it right away again, but they were wrong.

He was very happy to be nursing again and so far has not had much respiratory distress while nursing, which means he can keep doing it. His oxygen levels have been reduced again and we're getting to even talk about maybe getting released from the NICU. We may be in the regular hospital for a bit, but it all depends on how he is doing with returning to normal.

We were happy to see him finally smile a bit again and start cooing, so he's finally getting back to his old self.

An additional blessing ... he tested negative for whooping cough so although he is still in isolation, no one has to wear masks anymore around him.

Hopefully we will have more good news as the week progresses. Keep the prayers coming:).

Jayden's Baptism

Jayden was baptized today in his cozy room 2026E at the NICU. Mom actually got here right before the baptism and was able to be with us. A sweet nurse took some photos for us as well. We will have a ceremonial christening later, but he won't be rebatized because once you're in, you're in...lol:).

As far as his health, he is still improving and the are optimistic he may be turning the corner. He still is on oxygen and IV fluids, but is taking more milk through his feeding tube and may even get to nurse by tomorrow evening or Tuesday.

Thanks again for all the prayers. We are optimistic we may be able to bring him home later this week.

Saturday Update

Jayden is stable right now and possibly improving a bit. He is still on oxygen, but they are letting him eat a little through a feeding tube today and seeing how he takes to it. He still has a nasty cough and we are not sure the results of the pertussis tests yet, but is actually a bit alert and is not constantly panicking every time he has a coughing attack.

We have amazing doctors and nurses and the support staff has been great too.

You can put in for sleep rooms and I have been blessed to get one every night, which is wonderful because I can stay right down the hall from him, but still get some sleep.

Thanks for all the prayers and keep them coming. We are feeling the effects.

Love,
Ria

PS: Here is some info about RSV on the CDC web site. Jayden has a severe case, but is doing ok:).