Jayden's Health Update

We never imagined we would have such a fabulous winter - especially after such a rough two years. We did have to keep Jayden pretty much out of the public with the exception of our Christmas trip and he is a bit sick right now, but nothing we can't deal with.

We visited GI and they said he was almost 25 pounds now and maybe in about 6 months we can start weaning him off of some of his nutritional supplements. We visit Pulmonology next week, but it looks like we should be able to start bringing him out as we would with a normal kid and probably cut out the nursing, which would be great for us.

His breathing issues are still the same but hopefully they may begin to improve at some point. He is very able to sit through his neb treatments on his own after we set it up and he doesn't fight the IPV treatments near as much usually, so that is definitely helpful.

Hope your winter has been full of as much health! I can't say we missed our overnights in the hospital in the least:)

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Shots and weight gain

Jayden hit the growth charts for the first time since he was a few months old today. He is 23 lbs. 4 oz and will be 2 on Sunday. Dr. R had given him some antihistamine to stimulate his appetite and try to get him to eat the 2000 calories a day he seems to need and it is working. That along with little respiratory illnesses mean he is getting closer to getting rid of some specialists and treatments in the next year hopefully.

All of us were able to get the H1N1 shots two weeks ago and so we are resting a bit easier knowing if they get it, it should be significantly less severe. Jayden got his first dose of Synagis (to protect against the RSV) today as well and will continue to receive the shots through the spring.

We had a visit to a pediatric opthamologist this week and apparently he has severe vision problems at the moment. The doctor said he is 20/500 and 20/750 and she is trying to keep him out of glasses for a bit longer to see if his vision starts to correct itself. As far as we can tell, that would put him at nearly blind, but kids' eyes continue to develop for several more years. It was a bit of a shock since neither Jim nor I have ever worn glasses and I know virtually nothing about eye issues (I've been 20/15 my whole life until the last year when I was 20/20). He also may be developing a lazy eye, hence the difference in prescriptions, but we are going to just follow the problem and likely he will be getting some glasses in the spring.

It explains a bit of why he seems to hear things we don't ever notice and why he never really watches TV - only listens when songs come on. We will see what they recommend next time we head in to the doctors. For right now we have to watch out for changes in how his eyes look and react.

Anyway, overall news is very good and the eye stuff we can just deal with. What a great feat it would be if we could make it through the winter with no hospitalizations!!! We would love it! In the meantime, we are happily preparing for Jayden's second birthday and counting our blessings we have two beautiful little boys who make life so much more colorful:) God bless!

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Great News!

We are in our preparation mode for winter, which encompasses many frustrating phone calls with insurance companies and lot of back and forth between doctors offices, insurances and our nursing agency trying to coordinate care and maintain what needs to be maintained so I was thrilled today when I got a call I wasn't expecting.

One of our favorite nurses at the pediatrician's office called to let us know Jayden was approved for the Synagis shot again for all winter! If you recall, this is the same shot we got last year, but it takes months to get approved. On top of that, I was told it was highly unlikely we would be able to get it because usually insurance companies cap it when a child turns one and definitely by the time a child turns two (which is in November). Each shot runs in the several thousand dollar range and he has to get one every 28 to 30 days to keep the antibodies strong. We truly think the antibody shots last year kept him from getting so extremely ill though and so needless to say we are so very excited he is getting the shots again this year. (he may nto be, but he'll get over it:).

Anyway, we just wanted to share our bit of good news:). At least we know we're heading in the winter as prepared as we could possibly be at this point.

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August Update - Jayden

Not much news, which is great:). We just started the next round of doctors visits last week.

Jayden gained about 10 ounces since June (about 10 weeks) and although that's not a lot with all the calorie supplementation, it's something. He just hit 21 pounds and is staying in the 2 percentile, which is better than the 0:). The goal is to get him to the 10th percentile before trying to ween him from the 1200 calories he intakes in fluids daily. The doctors have expressed concern over the upcoming winter and flu season, especially with the H1N1 strain, but we are praying our usually precautions along with the additional nursing coverage will help us get through.

His lungs have gotten the longest rest they have ever had without constant sickness, which we pray makes them stronger to fight off the infections and viruses. With the nurses, we should be able to keep him inside all winter except for doc appts. while still getting a little bit of a break to rejoin the human race once in awhile:).

Although he still needs multiple daily treatments, we have been able to cut many of them in half and been able to be off antibiotics for almost 4 months as well as no oral steroids for 4 months. Hopefully when we do need them again, his body will respond to them quickly.

We are sad to be seeing the end of summer and not sure we are ready for the crazy wintertime again, but given the choice we would love to not have to worry about it and doubt we are ever ready to jump back in. Praise God we get a break in between. So many families i have met do not get the luxury of a "sickness break" and we are so grateful we do.

Other than that he is growing and just enjoying life. He has even learned how to throw little temper tantrums, which don't last for long because he doesn't like time out. He and his brother are inseparable and a ton of fun, but also a ton of trouble. Please continue to keep him in your prayers. God bless!

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More Weight Gain

Jayden's on a roll! It's amazing what a few months without major illnesses will do. We took him to the doctor last week and he has gained almost a pound in a month, putting him at nearly the 2 percentile for weight. Not only are we thrilled, his doctors are finally seeing some of the results we were hoping for. He has been busy as can be and we have high hopes this winter will be less severe than the past two.

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Cardiologist visit

We went to the cardiologist this week and it was a pretty good visit. They confirmed Jayden's heart murmur, but it seems to be minor and said he has a flap in one of his valves causing it. They are going to follow up in 2 years and make sure it doesn't get worse, so it looks like we're in the clear there! We literally have no appointments scheduled for the entire month of July - now it truly is summer vacation:). We pray you all have a healthy, fun and safe fourth of July!

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Update on Jayden

We've been quite quiet lately, which is a good thing! It means we haven't had any major news going on, which we always welcome. We are enjoying our summer and relative health. The boys have been busy running and playing constantly and they keep us on our toes. Ethan is doing VBS next week and looking forward to meeting new friends.

Jayden just went through the next round of specialist appointments and it was all relatively good. He went to GI last week and Endocrinology and his general pediatrician this week.

GI said he gained an "acceptable" amount of weight. Translation: No G-tube for right now! They won't guarantee it past the summer, but it looks like right now we are in the clear.

Endocrinology said his bone age is 15 months (he is 19 months), but not to be alarmed. They said plus or minus 5 months is considered in the normal range and especially for kids who have been as chronically sick as he has. They said he may just be a bit behind but he will eventually catch up when he is an adult. The doc did hear a heart murmur but said it was light and probably nothing to worry about. We are seeing a cardiologist because they want to make sure with his other issues it really is nothing.

His pediatrician was just happy he is gaining. He put on 10 ounces since he saw her 5weeks ago and is nearly 21 pounds. We hope to go into this winter more prepared than ever.

Hope everyone is enjoying their summer as much as we are here! I will be posting some more videos and pics soon:)

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Quick Update

Just a quick one, but thanks for all the prayers. Jayden went in to his ped today and he gained weight! He finally made it pass the 20 pound mark - barely, but he is. The bigger thing is that it looks like these added drinks, calories and protein are working so if that keeps up, we may avoid the G-tube! Anyway, just wanted to give everyone an update.

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Still Trucking Along

Ahhh - another Jayden update. We visited GI and pulmonolgy in the past week. The overall verdict of those docs, as well as his general pediatrician is that he is still struggling with weight. Since we removed the NG tube less than 10 days ago(because of the strangulation hazard) he has dropped 1/2 pound. Obviously this is not great and his weight had been leveling off as well. The GI docs gave us fruit juice with 250 calories per 237 mL and 9 grams of protein as well as peptamen with 375 calories instead of 250 per 250 mL. The biggest challenge is to get him to take that and continue to eat throughout the day normally.

If he drops any more weight or doesn't gain, he will probably get a G tube inserted. It is relatively routine, but the docs would have to make an incision in his belly and then into his stomach for placement. It is semi-permanent, meaning they could/would remove it when they establish he is doing well gaining weight and not having major issues. Obviously there are always risks associated with this and if we can avoid cutting into his stomach, we would gladly do it. We are praying things turn around before this, but if he needs it, we are preparing for him to go down that road. If he gets one, he will have a relatively short hospital stay as long as he does well.

He is doing well now and we hope he stays well enough this summer to gain weight and strength. Keep up those prayers - you know we depend on them:)

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Some More Docs

We are well into Spring and things are rolling around nicely here!

Jayden got sick this week but got some meds and is responding pretty well to them, which is such a blessings and definitely a sign we are heading into our favorite part of the year - the non-sick part:).

We started our next rounds of appointments with docs this week. We met with pulmonology and they got the final genetic testing back confirming he has no traces of cystic fibrosis. He is still not growing well though, even with the added nutrition and calories, so we are heading to see an endochronologist because Dr. K said he can't just chalk it up to respiratory problems and definitely not to caloric intake.

We actually removed his feeding tube after waking up a few times to his tube wrapped around his neck - SCARY. He was always ok and it was never tight, but we don't want to even chance the possibility something may happen with it so he went back to drinking his formula from a cup.

We did get nurses to help us out, but it wasn't exactly what we were hoping for and have been a little overwhelmed with the additional people in our house/lives all the time. We just needed a little help (at least at this time) with the IPV and instead we have someone around nearly all our day, which is challenging. We are hoping to reduce the visits to daily 1 or 2 hours a day instead of the 6 hours they currently are.

Besides that we are all good. Ethan and Jayden play a lot of going to the doctor and Ethan has been a little upset Jayden hasn't been in the hospital because he can't play with the toys in the 5 South playroom - oh darn.

Hope all of you are very blessed during this Easter season. I will update soon with some fun pictures and videos!

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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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Update on Jayden 1-25

Well, we haven't had much news except the doctors are concerned about what is going on with Jayden's right lung. I spoke with the pulmonologist and he said he expected the lung biopsy result to still take another 4 weeks or so, so we are just waiting....

Jayden is scheduled to see nutrition, genetics, pulmonology and GI in the next month along with his weight check ups and hopefully over that time, some of the doctors will discover something new or have new ideas where to go.

Dr. K, his pulmonologist said the initial tests on his lungs did not show food particles, meaning it is unlikely he is aspirating food into his lungs. He said if the primary ciliary dyskenesis comes back normal, then we will just have to go back to the drawing board and brainstorm where to go from there.

As far as the feeding tube, he has gained a pound in two months and they were really hoping to see even more gain. We will see. Regardless, it sounds like he will be on it for at least another three months and then we will wean him over a three month period so he will probably have it until at least mid-summer.

Pray he is still gaining weight. His last weight check he hadn't gone up at all, but hadn't gone down, so we will see. At some point if he continues to need it, we may have to consider more permanent options, but we are hoping to forgo that. We really feel if we can pinpoint the cause of the breathing problems and truly treat that, he will gain weight normally (well as normally as a kid with two parents who were sticks growing up would;).

He is sick, as he usually is, but hasn't been on antibiotics or oral steroids for two weeks, which is a miracle. If we can make it to summer and he can have longer periods of health, it should help too.

Beyond that he is doing well. He has taken a few steps and is always getting into something with his brother. They are quite a pair. Ethan does a good job of taking care of Jayden too. He sings him songs (like the Cars theme song) when we have to insert Jayden's tube to calm him down. It is very sweet.

Ethan has taken to calling himself Dr. Ethan and walks around with the stethoscope we have acquired and and syringes giving Jayden medicine and checking out how he sounds. Ethan also takes his baby around for walks after "coming home from the hospital" and imitates a lot of what is going on with Jayden. As far as child development goes, we encourage it because we know it is a good outlet for Ethan to express what is happening every day in his life and with his brother.

I am going to post some fun stuff in the next couple of days and when we actually hear news, we will post that as well.

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Finally Gaining Weight

We took Jayden in for his weekly appointment with the ped. and he finally gained weight - 6 ounces! That is 2x more than he gained in all previous five weeks combined. He is going to continue on the formula and we are working on increasing his nightly feeds. We are so relieved we finally have something that seems to be helping.

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A Little Progress?

We had a GI appointment yesterday and the doctors switched Jayden's formula from the Pediasure to Peptamen, which is an already digested formula, since he has gained no weight in the past three weeks on the tube. It pretty much takes any work (and hopefully eliminates) any potential digestion problems.

He had it all night and woke up and wanted to eat! We were so happy he ate normally throughout the day so we may be on to something. Guess we'll see at his next weight check on Tuesday. We'll have to see.

They are working on scheduling his four procedures together just after the new year so we will let you know when they are set.

He is cruising all around and crawling like crazy so physically, he's doing well.

That's enough fun for Friday night:)

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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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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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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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