Shocked Doesn't Begin to Describe It

Around 6 or 6:30 tonight, the resident and the attending doctor came into Mason's room, talked to Bill, and basically told him that they were sending Mason home. They had done all the tests they could and there was really nothing more they could do for him. Besides, his oxygen need was coming down a bit. So, after getting clarification an hour or so later, Bill was able to bring Mason home!

We were stunned! We had expected to be in the hospital for at least another day to get some answers about the glucose test (sugar was high which isn't typical of dumping syndrome) and make sure that Mason would tolerate his new feeding schedule. Unfortunately, neither of those things happened. What did happen was an upper GI test in which they confirmed that Mason's GI tract was anatomically normal.

After the normal test, they ran out of options. Fortunately, Mason needed only about 2.5 liters of oxygen most of the day and was even able to come down to 1.5 as Bill was bringing him home. I'm not sure what happened between this morning and tonight, but something must have clicked for Mason - his saturations were better on less oxygen. We are shocked. I guess he just decided that it was time to come home.

We are so glad to be home, but getting used to the idea that we may never know what exactly caused the oxygen need to go up and what allowed it to come down again. For everything we've all been through since Mason was born, there has almost always been a reason. Guess we're getting into a little more unknown territory now. How will a control freak like me be able to deal???? Patience and just going with it. Haven't I learned that lesson in the past year? Maybe Mason was just reminding me......

A Very Busy Day

Today, like yesterday, were very busy with the number of people coming and going. Mason has been a champ at tolerating these multiple doctors, residents, interns, medical students and nurses as well as the dietitian, speech pathologist. Each and every one has something to add to the clinical picture and our "plan" (which I put in quotation marks because it is ever changing).

I'll give the update by medical discipline as that's really how it was presented to us today.

Pediatrics: These are the attending doctors, or case managing doctors, that oversee Mason's care while in the hospital. Apparently the running theory on his increased oxygen need is that he has grown too fast for his lung capacity and he is needing more oxygen because of it. Add to that he needs more oxygen when he has the dumping syndrome symptoms and we have the recipe for disaster that landed Mason back in the hospital.

GI: We are really unable to "fix" the dumping syndrome symptoms. By decreasing the amount of food Mason gets per feeding, we can manage the symptoms. The only treatment is to wait for his stomach to grow with the rest of his body and accommodate to the changes that happened with surgery. This should happen, but will take time. Mason had a glucose test (similar to what diabetics get) after one of his feedings today and found that his blood sugar was at a good level. We're not really sure what that means because with dumping syndrome patients usually have a drop in blood sugar right after eating. Guess we still have stuff to work out. Tomorrow the doctor is going to do a test where they put dye into the stomach and watch it via xray as it moves through his system to see if everything is normal structurally. The GI doctor wants to make sure that all feedings are tolerated well and that we rule out any structural issues before she is okay with Mason going home.

Nutrition: This really goes hand in hand with the GI doctor, but warrants it's own section. We are changing the calories that Mason is getting so that his length catches up with his weight, then hoping to sort of restrict his weight gain so that there's a good ratio of weight to length. Mason is in the 5th percentile or so for his weight and length, but with the weight/length ratio, he's in the 85th or 90th percentile - meaning he's too fat for his height. Quite a far cry from the failure to thrive that we dealt with last summer. Bill and I are going to keep a better eye on the recommendations from the nutritionist so that we don't have the same problem as this past month with too many calories for his weight.

Lung Doctors: Overall, Mason's lungs sound as good as they do normally for him. Add to that his chest xray was the same as just after surgery (when he only needed 1 liter of oxygen) and there really isn't much to do here. The doctor is going to look into an alternative to the prednisone that Mason is on because being on it too long can do some damage to his already fragile lungs and has the potential for growth and brain development problems. As always, we have had to weigh the benefits of breathing with the possible side effects and always side with the ability to breathe. Hopefully there will be some possibility of an alternative that doesn't have so many potential side effects.

Speech: We met with the speech pathologist today, too and have decided to stop the feeding by mouth until the cold/flu season is over. While we don't know for sure that the eating contributed to this increased oxygen, we can't say for sure that it didn't either. Just too many variables. So, we are going to take the cold/flu variable out of the mix and will move more slowly when it comes time to start again. While I am sad that he won't be able to eat some birthday cake on his 1st birthday, I know it is for the best and will help the feeding be more successful at another time.

Like I said, it was a busy day today. In terms of how he's doing, Mason continues to need more oxygen than normal. He was able to get down to 2.5 liters last night, but has been at 4 liters most of the day. Granted, this is much better than the 6 liters he was on on Tuesday, but not yet what he is at baseline. We'll probably be here for a few more days as he gets on a good feeding regimen and gets his oxygen need back to baseline.

Thanks for everyone's thoughts and prayers. We are so grateful for your support!

We Know What It's Not

Last night was a little challenging between IV pokes, blood draws, chest xrays, suctioning, being a little oxygen starved, and a bunch of people coming and going taking blood pressures and temperatures. After some Tylenol at about 2 am, Mason's saturations went up, his oxygen need went down, and he was finally able to sleep.

Today Mason has had a few swabs in the nose and mouth and multiple people looking at him and listening to his lungs, and coming and going in gowns and masks.

So, after all that, we still don't know why Mason has needed more oxygen, but we know what has not contributed it. Mason's chest xray looked about the same. His lungs sound the same. His heart is the same. He doesn't have an ear infection. He doesn't have RSV (a nasty winter time virus that puts many preemies in the hospital and on ventilators). He does not have the flu. We are grateful for all of these "negatives."

We are still awaiting a virus culture (seeing if he has some cold or other virus) and the report out from the GI doctors. Otherwise, we don't know why his need went up. We'll just have to see.

Thanks for all of your prayers!

It was good while it lasted

All good things must come to an end, and Mason's hospital free time is no exception. Over the last few days his oxygen need has gone up and up and up. After visiting the Cardiologist today, we decided that it was time to spend some time in the hospital again. So, we're back. He's on 4 liters of oxygen, has and IV to give a heavy duty diuretic (Lasix), and has had a chest xray. We don't know the results of the xray, but are assuming there's some fluid on his lungs again. He's still smiling when we play with him, but working very hard to breathe.

Please keep us in your thoughts and prayers so we can get back home quickly. I'll keep you posted.

Happy 11 Month Birthday, Mason

Happy Belated Birthday, Aunt Valerie!

Wow! To think where we've been in 11 months is almost overwhelming, but I'll do more reflecting in next month's update.

For as uneventful as the last month has actually been, it sure seems like we've fought a lot of demons - dumping, colds, feeding, breathing, steroids, etc. We have also seen a great number of successes, too - 2 MONTHS WITHOUT A HOSPITAL VISIT!!, moving into Mason's own room, tolerating tummy time a little more, having 1 less doctor, and smiles, smiles, smiles.

Lungs/Heart:

Mason has continued to see ups and downs this month , but overall is largely unchanged from last month. We were successful at weaning the steroids a little bit (started at 1.7 mL 2x/day just before surgery and now we're at 0.9 mL 2x/day). We tried going down to 0.5, but he just couldn't maintain the same oxygen need, so we bumped him back up. It was nice to see his cheeks on 'roids deflate a little bit, but we still have a ways to go to see what Mason's cheeks are really like. We went and saw the lung doctor in early Feb. and found he was tickled pink at how well Mason is doing. He is encouraging us to decrease Mason's dependence on his medications, but knows we need to do it slowly to ensure good progress. We'll be back to see him in another month or so.

We haven't seen the heart doctor for quite some time, but have an appointment scheduled for this coming week. We don't expect any changes, just another recommendation to keep watching.

Eating:

Eating has really been the bane of our existence over the last month. When we made the full switch from milk with formula to just formula, Mason's eating became a disaster and he was diagnosed with "dumping syndrome" in which his stomach thinks that food is sugar and empties into the intestine before processing it - results in really high heart rates, intense sweating, and extreme fussiness. Thankfully, after some quick work with his GI doctor, we were able to add some oil and/or fat to the formula and the eating has improved (though still not easy).

We are up to just over 3 ounces every 3-4 hours during the day (seems to be Mason's limit for now) and are trying to see what happens if we don't feed him as much or any overnight. Babies don't normally eat all night long, right? Getting enough calories in Mason without overloading his fluids has always been the challenge, but with some trial and error, we're figuring out the right balance. With the extra fat/oil and extra formula added to his feedings, he is getting more calories per feeding than is "normal." Because of this, he doesn't need to eat as much as another baby would, and thankfully, it gives us a little wiggle room on how and when to feed him.

The big news for the month: we have been feeding Mason a little by mouth most nights. He has tried rice cereal and peas, and really trades of which is the lesser of the evils. Eating by mouth is a foreign concept to Mason. He hadn't done it in 5 months, and the last time it was by sucking on a bottle - no texture, no need to "chew." He is doing all the regular first time eating things like blowing raspberries and getting food all over the place, sticking his tongue out with food on it, putting his hands in his mouth then all over his clothes or whatever is nearby, or just plain making his mouth impossible to "catch." Sometimes I think he's too smart for his own good.... Soon after we find a strategy that works to get the food in his mouth, he figures out a way to beat the strategy. He is really keeping us on our toes trying to find another way to get the food in.

The whole reason for stopping the feeding by mouth all those months ago was that the doctors thought that food was going down the wrong tube when he tried to swallow and possibly getting into his lungs (aspiration). This is still a risk, though he had a swallow study (series of xrays watching food go down) that showed with baby food he could do well. As we've been feeding him by mouth recently, we're just not sure if he is aspirating. One of the key signs before was his oxygen need going up. Recently there have been a lot of reasons for the oxygen need going up, so it's hard to tell what's happening. We'll continue to work with the Speech Pathologist (feeding expert) to figure out if this feeding by mouth thing is ok for Mason right now.

Weight:

Mason is growing like a weed! Normally, growth slows down around this age, but not with Mason. He's continued to pack on the weight and really is getting "chubby!" We found out from our NICU friends that Joey (who also has feeding issues) had been called "overweight" at his 1 year visit because his weight was getting to be too much for his height. Soon after that, we talked to the GI doctor and nutritionist to find out the optimal growth for Mason. Sure enough, his weight was getting to be too much for his height. So, we've slowed down the calorie intake and are hoping that the height catches up (afterall that's the indicator that his lungs are getting better, too).

We have an official appointment where he'll get his weight/height checked on Tuesday, but with our scale and tape measure today, our little chunky monkey is weighing in at 18 lbs. 11.2 oz. and 26.5 inches long. His growth has really taken off!

Development:

Unfortunately, with the dumping syndrome, a lot of Mason's energy and strength was zapped. He was so uncomfortable between feedings that all he wanted/could do was lay down or be held. As a result, he had lost quite a bit of strength. Add to that his very rapid weight gain, and what strength he had is not quite enough to hold him up sometimes. So, he now finds it difficult to stand and hasn't really made progress on his getting up on all fours. Having said that, though, he is pretty much rock solid on his sitting and is making progress toward doing some scooting around on the ground (commando crawling). It takes a lot of help from mom and dad, and some frustration on Mason's part, but he is able to move forward a little bit on his belly - a great accomplishment in our eyes!! We have another PT appointment next week to help give us tips on how to help get his strength back in his legs, so hopefully, we'll be able to have some more good things to report next month.

We finally also had a check back with the orthopedic surgeon who has been working with Mason for his left elbow tightness and his hips. When Mason was born, because he didn't have enough amniotic fluid to move around in, his arms and legs were pretty much stuck in 1 position - legs overhead and left hand pinned near his ear. We were really concerned about the long term effects of both of these, but fortunately with some stretching and encouragement for use, Mason's left elbow is nearly stretched out - still a few degrees to go to be fully straight, but he can use it for almost all of his activities - and his hips are doing fine. The doctor didn't feel we needed to follow up with him any more! Hooray! One doctor down.

Just for kicks and giggles, here's a list of all the doctors/providers that Mason has on his team:

pediatrician

full time nurse/dad

lung doctor

heart doctor

GI doctor

general surgeon

physical therapist

2 nutritionists

speech pathologist

kidney doctor - who consults as needed

orthopedic surgeon - not any more!

We've definitely seen those peaks and valleys I talked about, but we know things will continue to get better. Mason is still so much fun to be around and his laugh is infectious. We are so lucky to have him in our lives!

We hope this finds everyone doing well. Thank you for all of your support and prayers!

Love, Christi, Bill, and Mason

One Doctor Down

Yes, it's true. Mason has 1 less doctor after today. We returned to the Orthopedist today to do a check up on Mason's hips and his left elbow (you may or may not remember these were an issue many many months ago). After yet another xray (I swear this child is going to glow in the dark sometime soon), the doctor came into the exam room and said something that we loved hearing - Mason's hips look great! Everything is where it should be, no risk of dislocating, no risk of long term problems! He was also pleased with the progress that Mason's elbow has made. While he still cannot straighten it completely, he has achieved "functional" range of motion and should continue to improve over time. He doesn't feel we need to come back to see him unless we have some problems in the future. Yipee! One doctor down!

In other areas, we've actually had another tough couple of weeks. Mason's oxygen need went up quite a bit after our last lung doctor visit and his feeding got worse after it got better. The 2 seem to be linked at least a little, but more than that, we think Mason had a cold. You may ask, how do you not know if he has a cold? Well, in Mason's case it's hard to tell. We once again changed a lot of things all at once, any one of which could have increased his oxygen need. He also has that cold, dry air blowing in his nose constantly so the snot factor is less. He has the symptoms of a cold (some congestion and needing his nose suctioned a little more), but those things have happened in the absence of a cold, too. The good news is that the symptoms seem to have subsided for now, and we are hopeful that it was a cold and he has just about kicked it. If it was a cold, we can expect his oxygen need to go down again and we can start weaning the steroids again. If it wasn't a cold, we'll have to work with our doctor to establish a new baseline and he might need to stay on the steroids for longer. Only time will tell.

A Better Day

We are still awaiting the microlipids (fat) to put in Mason's formula, but in the meantime are using canola oil as was suggested by a nutritionist. Thankfully, adding this to Mason's formula has helped to slow things down and he is much more able to take his formula through his feeding tube!! He no longer drips sweat, no longer has a heart rate over 220 beats per minute, and no longer cries/fusses for 3 hours after eating. Today was a much better day!

Yesterday, we were able to try to feed him by mouth for the first time since August. As you would expect, Mason didn't really know what to do with it. He remembers how to suck, but doesn't quite get the taste and texture thing. He gagged a couple of times, then really didn't want the rice cereal in his mouth, but with time, we're hoping he gets used to the idea. When we feed him, we're putting a little bit of the formula on a spoon for him to play with so that he can get used to the idea of tasting things. We'll see if that works.

So far, so good. Today was a much better day!

Another Diagnosis? Confirmed

It's true...the "Dumping Syndrome" was confirmed by the GI doctor today (see the last post for what this is). Things didn't improve with the change in medication, and in fact worsened, so we called the GI doctor to figure out next steps. After hearing about the worsening of symptoms, she was convinced and asked the nutritionist to work with us on modifying Mason's diet so that there is less "dumping."

So, you may be asking why did this get to be such an issue when things were going so well (relatively speaking, of course). It seems it is related to the change from milk to water based formula. The effects of dumping syndrome can be lessened with more fat in the stomach. Unfortunately, when we switched, we lost some of the fat content that breast milk has. So, the modification of diet will include adding some fat to the formula. Hopefully adding the fat will help to make the food less likely to empty out of the stomach too quickly and eating will be much less painful for our little chunky monkey (weighed in at 17 lb. 5.3 oz today).

Now, for the really good news....we get to start trying feeding Mason some rice cereal by mouth! It's only a tablespoon per day at first, but if all goes well we will gradually be able to increase the amount. We are so excited as it is the first step toward getting rid of yet another tube/button. Wish us luck!!

Also, we saw the lung doctor today and he was quite impressed with how Mason has been doing and how well we have kept him free of colds, etc. We had a really good visit and have some plans for trying to decrease some of the medications. He agreed that the surgery was the right thing to do and has helped turned a corner for Mason.

Now, if we could just get this feeding thing under control........