Late October Update

We went to our 6 week follow with GI this past Monday and he FINALLY gained enough weight for them to let us have 3 months between appointments again instead of 6 weeks, which has been going on since April. Of course he pooped twice about 10 minutes after he was weighed, but whatever. They think he weighs 22 pounds so we're going with that:). They also didn't even mention the GI tube which means we're back on the rightish track. His BMI dropped to 13% but that's mostly because he gained height. His weight is still right about 1 % but his height is 25 and his head is, of course 50%, because he is a Lozano and we would expect nothing less:). Dr R. said his body wouldn't invest in his height if his nutritional needs weren't being met, so that's definitely positive.

We still haven't gotten the H1N1 shots because they haven't been available to us. I spoke with the Department of Health and they said when they get them in, we can find out from our pediatrician, but our ped. office said that they have heard nothing and don't think they will get them in their office as of now.

IF we can get the boys the shots in the next months and IF everyone's health holds up ok and IF the flu is not too horrible, we may still be able to head to St. Louis for Christmas - we just have to wait and see. Part of the reason we are driving is because we know all of that can change in a second for us so it gives us the flexibility to make the decision the day of if we need to.

The H1N1 virus is quickly spreading through families around here and so we are doing our best to keep Jayden isolated. He is so anxious to leave our house, but the park and the doctors offices are as far as he's getting right now.

Dr. C - our pediatrician, said if he needs to be seen, we will bring him in before the office opens so it is still disinfected and she will come in early to check him out - works for me. He, Ethan and Jim are getting over something that wasn't horrible, but was working it's way to the respiratory tract. It seems we have stopped it and that would be a small victory:).

Jayden starts his Synagis shots in a few weeks and so that, coupled with the flu and hopefully H1N1 will give him the extra boost he needs. The flu vaccines do not mean he won't be able to get the virus, but it does mean if he does, he should not get it nearly as severe as he would without them.

For now we are trying to appreciate the isolation. We did get some additional nursing, so two mornings a week I am able to take Ethan to school and do an hour or two of errands, which is a blessing (and just get out of here:). I am still not sure how we will do trick or treating, but if anything, it will involve a lot of hand sanitizer!

Enough for now - I hope this is the types of updates I get to do all winter. That would be the best:)

BTW, I am starting to write up about our high fat recipes. Want some PediaSure waffles? They are DELICIOUS (at least of course to Ethan:).

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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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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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Update On Jayden 12-07

I'm sorry I can't be more creative with the titles, but whatever:).

So Jayden finally turned the corner with what he had been battling the last 4 weeks or so. It took a new dose of a new antibiotic, but it seems to be doing the trick and he is now almost back to where he was at the beginning of November before he started getting this (at least breathing wise).

We were at the doctors every day last week, but on Friday we had to take him in to the pulmonologist. His pulmonologist, Dr. K, told us he is getting more concerned because despite our tube feeding, Jayden has not gained anything. He actually lost a tiny bit of weight (he was 7.93 kg a few weeks back and is now 7.86 kg). He said that despite this, he is glad we added the tube because at this point he could very easily be losing weight if he wasn't getting this added to his diet.

It may not be very apparent right away the issues his breathing has on his weight, but one concern is the more he has to work to breathe, the more calories he has to burn to breathe and the less is being packed into his body. So theoretically, if we can help his breathing and keep him relatively stable, we can more easily help him gain weight.

The good news is that his test show he is absorbing the fat and nutrients in his diet, so it is likely not a malabsorption issue.

We will see a GI specialist this week and after that it looks like we will have him admitted into the hospital for another round of procedures, but if all goes well, it will only be an overnight stay.

They want to do the chest CT scan, a milk scan, a lung biopsy and an endoscopy (assuming GI wants one, which Dr. K thinks they probably will). All of these except maybe the milk scan require anesthesia for him, so we are hoping to line it all up together and only put him under once instead of multiple times. There are always risks, and especially the lung biopsy carries a bit of a greater one, but they really need to get to the bottom of what is going on to really help him.

Dr. K said we are really getting into the realm of very unusual things (which we kind of figured at this point;) and they are trying to explore the more likely and less invasive possibilities first.

Jayden is still as happy as ever as long as we aren't doing medicines and sticking tubes down his nose:). Somebody forgot to tell him he's sick because he sure doesn't act like a sick baby most of the time. The docs and nurses always look over his chart before meeting him and expect him to look much sicker than he appears, which we take is a good sign.

We have such a wonderful, caring community and although this is so overwhelming at times, it is also our normal and we get adjusted each time things change. God always blesses us with what we need as we need it and we are so grateful for that.

We are praying now God will lead the doctors down the path they need to explore to find something to work for Jayden. In the meantime, we pray Jayden does not contract the flu or anything else and we can keep him healthy enough to do these procedures.

They want this all done by Christmas, but we will have to see how it works out. Likely it will all take place quite soon so we'll keep you posted.

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Jayden's WBC

So Jayden was finally well enough to get his blood taken to test for all the things they are testing him for. He actually has an ear infection, but that's all right now. There were three batches of blood, one set of standard tests and two of other. The first came back today and his white blood count (actually his Absolute Neutrophil Count) is pretty low. The white blood cells are what help your body fight off viruses and infections and his doctor said they would be pretty concerned if he had a 2000. His count is 700.

That makes him a lot more susceptible to any infection or virus he comes in contact with. It may be that he has some viral suppression and that it is a temporary thing, but they are going to retest him in two weeks to see if it changes for the better. Just wanted to give you updates on what is happening. Please keep him in your prayers that he can be strong enough to continue to fight anything he comes in contact with. Looks like our seclusion inside (at least for the time being) is beginning a bit earlier than we planned:).

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