Some things are just too hard to swallow

One of the days we've been waiting for has arrived. We finally have some definitive information about whether or not Mason is aspirating (slipping food into his lungs when he eats or when he refluxes). He had a swallowing study with a speech pathologist today where he tried thin liquids, thick liquids, and some baby food. While he did pretty well with the thicker stuff, he did end up slipping some food into his lungs with the thin stuff. At first, he was a champ with the bottle. He began eating like he used to in the NICU without any refusal. However, after aspirating a couple of times, he choked a little and decided that he didn't want to eat any more. The good news is that once he realizes that the food is going down the wrong pipe, he does what he can to stop it (refusing to eat), the bad news is that he doesn't catch it right away, so food gets into his lungs.

Despite the outcome not being what we had hoped, this is really good information to have as we move forward in trying to figure out what to do about Mason's lungs and reflux. Since the thinner liquids slip into his lungs, it's a pretty good bet that when he does reflux, some of the food that comes up goes into his lungs. This may also be contributing to the difficulty he's been having lately with his breathing. So, the GI doctor, the speech pathologist, and the lung doctor are going to chat on Tuesday when we have an appointment with the lung doctor and we will determine if we should go ahead with the reflux surgery.

Looking on the brighter side, Mason does not aspirate with thicker foods. So, when we do go back to feeding him by mouth (after they get the reflux stuff figured out), we can be fairly certain that he will be safe eating. It will have to be thicker (baby food or thickened milk), but he will probably be able to eat it and not have to have a tube for feedings. We will be so happy to get rid of the feeding tubes!!!

Comments and Update

After posting the 7 month update, I found out that some people who wanted to comment couldn't. So after checking the settings, I've changed some things. The ability to publish comments should be open to everyone now. Please feel free to make a comment whenever it suits your fancy. We love hearing from folks.

So far things have stabilized since starting our 3rd round of steroids last week. Mason is needing 3/4 to 1 liter of oxygen most of the time. He still isn't quite as happy go lucky as he was when we left the hospital a few weeks ago, but at least things are stable. We got our authorization from our insurance for the swallow study, so we are going to try to get that done this week. It will be nice to finally, once and for all, determine if Mason's reflux is contributing to this so that we can make some decisions.

Mason continues to get stronger with his motor skills. He's rolled over from his stomach (almost intentionally) a few times when he's not quite so mad about being on his stomach; he's got the hang of rolling from his back to either side; and he has sat without support from us a couple times if we've helped him prop himself on his hands just right. I am amazed at his resilience. Mason continues to do all the "normal" baby things while struggling so hard to breathe. I can learn a lot from his strength!

Happy 7 Month Birthday, Mason!

I can't believe the first half of Mason's first year is behind us. I'm reminded of the first year of marriage. There are ups, there are downs, and its worth all of the hard work in the end. As many of you have read in the recent blogs, this has been a tough month for us - perhaps more difficult than any since we were in the NICU. Mason has had a lot more difficulty with his lungs this month, but continues to be a happy boy most of the time, and continues to light up our lives with his infectious grins and giggles.

Lungs/Heart:

I'm going to start with the lungs and heart for this month's update. Since most of our adventures this month started because of Mason's breathing, it seems appropriate. On the 6 month update, I wrote that we had just found Mason's lungs weren't exchanging the oxygen and carbon dioxide as they should. We increased the dosage of his diuretics in hopes that would make it easier for him to breathe. Unfortunately, the effects were not dramatic and over the next week, his oxygen need continued to rise. So, on the 2nd of October, we took him in and he was admitted to the local children's hospital. He stayed there for a week while the med students, residents, and attending physicians all worked to relieve his symptoms, help him breathe easier, and find out why his oxygen needs were changing/worsening.

The doctors had 4 theories as to why Mason was having increasing difficulty with his breathing. They couldn't (and still can't) exclude any of them, so we're trying to continue to investigate so that we treat the correct one:

1. Reflux from the feeding tube was causing a little bit of food to slip into the lungs and causing problems there.
2. Dosage of diuretics still wasn't high enough for his weight so he wasn't getting rid of enough fluids.
3. The increase in quantity of food over the previous couple of weeks had been too much for his system and he wasn't able to process it as fast as it was coming in.
4. He had a cold, flu, or some other virus.

They pretty much ruled out #4 with some tests, but couldn't prove that the other 3 had a role or didn't have a role in the worsening. So, they took steps to address all 3. They gave him a couple of doses of lasix (diuretic) to get fluid off of his lungs, a 5 day round of prednisone (steroid) to help strengthen his lungs and advanced his feeding tube so that it went through his nose to his small intestine to help prevent his reflux. They also slowed the intake of food way down and changed his feedings to be continuous. In other words, he is hooked up to the pump for 20 hours every day and has 4 hours of rest. About a day after all of this was done, he started breathing much easier, had no more puking, and was so much more playful. He started smiling just to get a reaction out of us. It was fantastic!!

Unfortunately, shortly after leaving the hospital the effects of the steroids did wear off and Mason's breathing started to become more difficult again. So, back to the pediatrician we went and Mason was re-started on the steroids. At the same time, he also caught his first cold. Thankfully, with the extra steroidal help to his lungs, it wasn't as significant of an event as it could have been, and we didn't have to re-admit him to the hospital. We are still in a wait and see pattern right now. Now that Mason has finished his 2nd course of steroids, the cold symptoms are coming back, but we are watching closely. Our pediatrician is wonderful and following up with the heart doctor, the lung doctor, and keeping on top of things with us. We are so grateful for everything he does!

As far as the heart goes, while in the hospital, Mason had a repeat of the echocardiogram (ultrasound of his heart). Thankfully, it doesn't show any worsening of the stress on the right side of his heart, but it is not better either. It is possible that this is also playing a role in Mason's increased need for oxygen, but difficult to determine when the tests don't show any change. This remains to be determined.

Eating:

So, the tube feedings continue. For the first couple of weeks of the month, before the hospitalization, Mason continued to have difficulty with the tube and was puking it out 1-2 times per day. Yes, that means we were having to put it back in 1-2 times per day. Poor little guy! I can't imagine how traumatic that was for him, though I know how traumatic it was for Bill and me. So far, with a 3 day exception, now that the tube has been in the intestine, it has been much more successful for Mason. He has been able to tolerate all of his feedings very well and keeps the tube in almost all of the time. The 3 day exception happened last week. First, he hooked his little sneaky finger on the tube and pulled it out. Then, we couldn't get it all the way into the intestine, so we had to put it in again. Then, we think it moved back into the stomach because Mason ended up puking it out the 3rd morning. Since it was put back in a 3rd time, though, he's been able to keep it down.

While in the hospital, the general feeling was the the reflux was the most likely reason for the increased oxygen need. So we started talking more seriously about the surgery. We know the reflux is there, what we don't know is if the food is sneaking into his lungs. One of the residents was in our room at the hospital when Mason puked and commented on how well he protected his airway. This is a really good sign, but he may not be good enough to protect the lungs all the time (especially if he's lying on his back as he so often is). So, we talk more about the surgery. The surgery we are talking about has 2 parts.

1. Insertion of a feeding tube straight into his stomach (g-tube)
2. Wrapping the lining of the stomach around the esophogeal sphincter (where the stomach and throat meet) to create a "1 way valve." In other words, the food can go down, but it can't come back up.

This is a very common surgery (especially with preemies) with a very good success rate, and it can be done by the same surgeon who did Mason's hernia repair. The challenge for Mason is, as it always is, his lungs. Because it requires sedation and ventilation (too much risk for reflux as they inflate the belly with air during the surgery), we are taking a huge risk. The best case scenario is that Mason comes out of the sedation and off of the ventilator easily. The worst case is that it takes a very long time to come off of the ventilator. We just don't know which scenario will play out. It might be that we don't have a real choice. If the reflux is causing the worsening of his breathing/oxygen need, we risk lung damage if he doesn't have the surgery.

We returned to see the GI doctor today to discuss our options at this point. She is not convinced that the reflux is the true contributor to the increasing oxygen need since his lungs have continued to have problems since the tube was put into the intestine. So, we are going to do more tests. Mason is scheduled to have another swallowing study in a couple of weeks to see if he does get food into his lungs when he eats or when he refluxes. This will help us to determine whether or not the reflux is really the culprit. If he doesn't get the food into his lungs, chances are there isn't a need for the "1 way valve" part of the surgery. We will just have to see.

Weight:

Finally, some good news! Mason has continued to gain weight through all of this and is averaging 1/2 to 1 oz per day. His length and his head circumference have improved as well. He is still well below where he should be for his adjusted age (5 months) in weight and length, but he is gaining by leaps and bounds!

We hit another major milestone with Mason's weight. At the GI doctor's appointment today, he measured in at 12 lb 1.3 oz, 23.5 inches long, and a head circumference of 16.5 inches. I am amazed at how big he is getting, but thankful (in 1 respect) that he stayed small for so long -- he got to wear some really cute newborn and 0-3 month clothes for a really long time!! He is finally starting to fit into some of his 3-6 month clothes and we have some really cute Halloween outfits. He will be the best dressed kid in the neighborhood!

Development:

Mason had his monthly visit with the physical therapist last week and he is still on track with most of his developmental milestones for his adjusted age (just 5 months from when he was supposed to be born). He has caught up a little bit on the milestones that require a lot of muscle endurance (head control and posture support), and we attribute that to his feeling better and being able to concentrate on things other than breathing for a while. The PT continues to be very encouraging and says she does not see any neurological involvement (i.e. no evidence of cerebral palsy at this point). Mason is getting stronger and is able to sit up with less support, prop himself on his hands when doing a modified version of "tummy time." His endurance is improved quite a bit, too. He smiles and "talks" almost all of the time and loves reaching out for his toys. He loves sitting and watching just about anything and is very attentive to what's going on in the room. He also loves to "dance" and giggles quite a bit when we help him to shake his thang!Return to Work:

The transition to work has been difficult over the last month. It is hard to be away when so much is going on with my little guy. It is reassuring to know that Bill is there and takes care of Mason's every need (and a lot of wants, too, I'm happy to say!). The folks at work have been wonderful and so supportive. I can be with Mason when he needs me and at work when he doesn't. I am so thankful to have such a flexible and supportive work group.

Thanks again for everyone's prayers and support! We couldn't get through this without all of you!

Love,
Christi, Bill, and Mason

3rd Time's a Charm and Playing Catch Up

Unfortunately, the feeding tube must not have stayed in Mason's small intestine after the 2nd ER visit, because right after getting his mid day meds yesterday, Mason threw up and his tube came out once again. So Bill took him in to the doctor's office (thank Heaven for this time being during business hours!), re-placed the tube, and confirmed that it was in the intestine with yet another xray. Poor little guy is going to glow pretty soon! So far, today, the tube has stayed in, no puking, and we've had a very talkative, happy baby. Let's hope this one is going to hold!

Because of yesterday's adventure with the feeding tube, we had to reschedule our PT visit for today. We had a very good visit with our wonderful PT. Mason has made up some time with his milestones that require strength and endurance and continues to be on track with his other milestones. We also got some good information on ways to help him catch up and keep him moving forward. We are so excited that he's keeping up as well as he is given all he's been through. It is nice to have some real positives!

ER - Take 2

After a few short hours of sleep for all of us, we were up and getting ready for our day. Bill checked to see if there was food in Mason's stomach, and sure enough there was - the feeding tube must not have made its way down to the intestine. So, off to the children's hospital we went. Thankfully, after just a couple of short hours, we placed a new tube and had xray confirmation that it is in the intestine. We got home and Mason pretty much passed out. He played with my mom for about 10 minutes and fell asleep. I think he slept for about 4 hours (about twice as long as his normal naps). Poor guy was so exhausted. He seems to be no worse for the wear and is back to his smiley self (not as much as in the hospital, but getting there). We're going to have a talk to see about avoiding the hospital/ER for a while. They're getting to the point that they recognize us.........

3 Hospitals in 6 1/2 months, Is that a Record?

Well, I had to open my big fat mouth. We ended up taking Mason to the hospital tonight - yes, a 3rd hospital (this one is closer than the other 2, but not a pediatric specialty hospital). Not because he was having trouble with his breathing, but because that feeding tube that was so "securely in place" (to quote myself just a few hours ago) came out. Mason, in his little stinker way, pulled the tube out while riding home with Bill from my parents' house. So, off we went to the ER - with a tube into the small intestine, we can't replace it ourselves. We need to have an x-ray to confirm that it made it through the stomach and is set in the small intestine. 4 hours later, the tube was back in, well, in the stomach anyway. The nurse and doctor think it's making its way to the intestine, but we'll have to be careful with the feeds just in case. So far, the feeding tonight is going ok. Let's hope it stays that way, but we might take him back to the clinic tomorrow anyway (well, I guess it's actually today now) to have another xray to make sure. If the tube stays in his stomach, we risk having lots of reflux, more puking, and possible aspiration (food into the lungs which causes pneumonia). Better to be safe than sorry in this case. Ahh, the joys of feeding tubes! I can't wait for this part of our lives to be behind us!!!!

When a Cold is Not Just a Cold

Well, we made it through the weekend without making the trek back to the hospital. Sometime on Saturday, we started to think that Mason sounded like he had a cold - coughing that sounded more like congestion than reflux, raspy breathing when he awoke from sleeping, and a little more sneezing. By Sunday, it was clear - Mason has his 1st cold. There were a few times we thought we might be close to taking him to the hospital, but then reminded ourselves that they wouldn't be able to do much more than we could do at home - he's already on another round of steroids. So, we turned up the oxygen a little more, gave another puff or 2 of the Albuterol inhaler, suctioned a little more, and kept the little guy home.

It amazes me that no matter how hard we tried, we couldn't prevent a cold. I don't think my hands will ever be soft again because they get washed so much, we don't take him anywhere but medical appointments, and we don't see any of our family or friends anymore for risk of exposure. But, somehow, some way, the little bug got through. Perhaps he caught it in the hospital, perhaps one of his medical appointments, or perhaps I brought something home from work. We'll never know, and it really doesn't matter. The good thing, though is of all times to get a cold, this was probably the best. He's on the steroids to beef up his lungs, the feeding tube is securely in place and he doesn't have as much puking from reflux, and we now know we can turn up the oxygen for a short time without worrying too much. If he'd had the cold before going into the hospital, we would have been in big trouble, but with the changes, his system can fight it much more effectively.

Hopefully this cold will pass quickly (he's on the steroids for another week, thankfully!) and his system will be that much stronger to fight the next one. I'm sure there will be a next one this winter. Before that, though, he'll get a flu shot and a Synergis shot (to help make sure another cold doesn't turn into a hospitalization), and we'll keep destroying our hands with frequent scrubbings.

I have also put a couple of Blog links over to the side:
The first one is for our cousins Linda, Rob and Ava. Ava was born on September 9th at 27 weeks gestation and is slowly, but surely making progress in the NICU. Linda, her mom, was diagnosed with breast cancer during the pregnancy and is undergoing chemo treatments for the cancer. Rob is the RockStar dad and husband who is holding everyone together.
The second one is for Mason's buddy from the NICU at St. V's. Joey was Mason's neighbor for a few weeks and we became friends with his parents. Joey recently had surgery to insert a feeding tube into his stomach. He did well with his surgery recovery for a little while, but then ended up with a bacterial pneumonia and had to be placed back on a ventilator. He continues to have a very rough recovery and needs all the prayers he can get to help him get better. We are also praying daily for his mom, dad, and sister as they go through this difficult experience.

On a much lighter note, Bill called me at work today to tell me of a monstrous poo. I'm sure you have seen this before - up the back, all over the clothes, and right before you need to leave to go somewhere. I guess there is a benefit to being back at work - I was already gone!! Mason really loves me; he saves that kind of stuff for Daddy!

Prayer Request for Joey

Please pray for a successful wean off the ventilator for Mason's NICU buddy, Joey. He has had an extremely rough course after getting a feeding tube placed into his stomach. We are praying daily for Joey and his family!

Another Day at Home

Thankfully, the steroids seem to be working. Mason is still at home and is breathing a little bit better - I might even think about unpacking tomorrow. He's still needing 3/4 liters of oxygen most of the time, but is able to come down to 1/2 every once in a while. We were blessed with a full night's sleep last night and some good naps today. Do we dare hope to have 2 nights in a row??

We can sure tell when Mason's feeling better. He seems to be almost back to his smiley little self, and even has started to sound like he's trying to giggle at times. He has a little more energy to work on some of his endurance exercises - propping himself up against my leg when he's on his stomach, sitting with is hands out in front of him to almost support himself, and looking all around. He has recently found himself in the mirror and likes to look at himself smiling.

Well, I'd better make this short, my little one is 'roid raging right now. Better go calm him down and help him fall asleep.

The Power of Roids

Today we awoke to our discharge fears realized. Mason had a hard time through the night with the oxygen monitor going off every once in a while and this morning, he was desaturating (not holding enough oxygen in his blood) even on 1 liter of oxygen. His last dose of steroids in the hospital was Wednesday morning. Today, they were finally out of his system. We got all packed up and ready to go to the hospital with a stop first at the pediatrician's office for a scheduled follow up. Mason had some blood drawn to see how the sodium, potassium, and carbon dioxide in his blood were. He also had to have another xray to make sure the feeding tube was still in his small intestine (it was moved from an NG - nose to stomach - to an NJ - nose to small intestine - in the hospital). Thankfully, the carbon dioxide is down a bit and the NJ tube is still in place. We still don't have a good idea of why Mason's lungs keep getting fluid around them, so until we do, we'll have to keep treating the symptoms. So Mason's back on the 'roids. Amazingly, within about an hour of the first dose, his breathing eased quite a bit and he was able to nap comfortably. He still needs a little bit more oxygen than a couple of days ago when he left the hospital, but thankfully he is not getting worse anymore. We are hoping that he continues to be stable so that he doesn't have to return to the hospital. I think we're going to stay packed, just in case though.

Back Home

Last night we brought Mason home from OHSU. The reason that he was there was he was not breathing very well, a process that took a month to need more care. There was fluid on his lungs and was given a diuretic to clear that up. He was also given a 5 day dose of steroids to help with inflammation in his lungs. The good news was that he went in the hospital on 1.5 liters of oxygen and blow-by he left on 1/2 a liter.

I was amazed to see how much happier Mason was now that he could breathe. Before it took a lot of work to get him to smile but now it seems that he smiles jut to get a reaction out of me.

Back Home

Last night we brought Mason home from OHSU. The reason that he was there was he was not breathing very well, a process that took a month to need more care. There was fluid on his lungs and was given a diuretic to clear that up. He was also given a 5 day dose of steroids to help with inflammation in his lungs. The good news was that he went in the hospital on 1.5 liters of oxygen and blow-by he left on 1/2 a liter.

I was amazed to see how much happier Mason was now that he could breathe. Before it took a lot of work to get him to smile but now it seems that he smiles jut to get a reaction out of me.