Pacing Ourselves

Mason had another low key day today - his oxygen need was up, it was down, and is ending up the day at 2.5 liters (the limit that was set last time we left the hospital). His mood is steadily improving and he is smiling more and more -- Daddy even got a few giggles as he tickled Mason's neck with his goatee and kisses.

We did see some changes in the routine today to possibly address the increased carbon dioxide that the lab showed and get him more stable in preparation for the surgery next week. So that Mason doesn't catch a bug while here in the hospital, all the providers coming in have to put on a gown and mask. It is quite inconvenient for them, but makes sure that they don't carry in something from another patient. We've also increased both the inhaled steroid and the diuretics in an effort to decrease the dependence on the oral steroids. So far we haven't been able to do that, but maybe this time, it will be different. The other change to Mason's medications is the addition of another inhaler. This is supposed to be a long-acting asthma type medication. We tried it a couple of times before he came in, but it may have been too late at that point so we didn't see any positive effects. Now that his system has improved some, maybe it will help.

The new round of doctors is on tomorrow, but most of them already know Mason or know about him (being in the same hospital 3 times in 2 months will do that). Hopefully there won't be any big surprises. As I'm writing this tonight, I think the plan is still for Mason to have surgery on Dec. 9th, but I don't know if we will stay here until then or go home and come back. I guess it all depends on how stable he gets and can stay. I'm hoping that he improves enough that we can do well for a few days at home and get some good rest before what will likely be a long hospital stay after surgery.

Slow and Steady Wins the Race (hopefully!)

We may not be making big gains or rapid gains, but we are making progress.

Yesterday was a pretty low key day. Mason caught up on some sleep and weaned down on the oxygen a little bit. He is now getting the steroid every 12 hours and building up the level in his system. We were able to turn him down to 3.25 L around 4:30 or so and that's where he stayed until this morning. We could tell he was doing a little bit better because he would hold his oxygen saturations in the mid to high 90's (normal for people without lung disease is 99-100%) while he was awake. On Friday, he was in the high 80's to low 90's on 4 liters, so there is definitely some improvement!

Overnight he had a couple of rough patches with his saturations going down in the low 80's, but after rolling him onto his side and patting his butt (he loves this!), he was able to fall back asleep and saturate in the high 90's again. This morning, we turned him down once again, so he's needing 2.75 liters. He seems to be a little more comfortable with his breathing, too, and isn't working up a sweat while just resting.

The doctors are a little worried about the carbon dioxide level in his blood. One of his tests showed that he's retaining quite a bit of CO2. His PCO2 was at 80, but they don't know if that is where it has been or if it's recently elevated since he hasn't had the test since October (then his level was 60). It's entirely possible that the level has been creeping up since we left the hospital in early October and may even be down from Friday since his oxygen need is going down, but regardless it's too high so they'll be talking today with the lung doctor to figure out what to do about it. We'll just have to see.

Boomerangs or Rubber Balls?

I can't figure out which is a better way to describe us. Either a boomerang (they keep "throwing us out" of the hospital and we keep coming back) or a rubber ball (we just keep bouncing back).

Yes, it's true, we are back in the hospital. Mason's oxygen need started to go up as soon as he started weaning off of the steroids in preparation for his surgery, and he surpassed our "limit" yesterday. Unfortunately, he needs the steroids to keep his oxygen needs down, but steroids also make healing quite a bit harder after surgery. So, we're sort of stuck between a rock and a hard place and it's not a decision we can make alone. Thankfully, Mason's providers are all wonderfully informed about his situation and are working together and with us to make the best decisions. The attending pediatrician will be talking to the surgeon over the weekend and our surgeon and a new attending pediatrician (they switch every Monday) will be talking to the pulmonologist on Monday.

Last night they found that he again had a lot of fluid on his lungs and was needing about 4 liters of oxygen (earlier this month we thought our limit of 2.5 liters was high....). So, they gave him a dose of Lasix (a heavy diuretic that made him pee off 1/4 of a pound of fluid) and re-started him on the steroids. This morning, he's still needing 4 liters, but appears to be a little happier and more playful - when he's not sleeping that is. The doctor said his lungs sound a little clearer, too.

We think we'll be here at least until Monday when all the doctors can talk to each other and Mason can hopefully have a chance get stable. We are hoping that over the next several hours to day or so we can start to wean down on the oxygen. We are also praying that whether surgery happens on Dec. 9th or sooner or later, that the steroids will give his lungs the strength they need to get through it, but not have too big of an impact on his healing.

We'll keep you posted....

Happy 8 Month Birthday, Mason!

It hardly seems a month has passed since our last big update. Once again, this month was difficult. Mason's lungs and reflux have continued to be a challenge and we've had to make some difficult decisions about what to do about it. Despite our challenges, though, we take great joy in watching Mason giggle, smile, and do some "firsts."

Lungs/Heart: We tried a bunch of different things to help Mason's breathing at the beginning of this "month," but to no avail. Mason continued to have difficulty whenever off of the steroids, so he ended up going on a constant, low dose. This held him pretty steady until just after Halloween.

The best part of this month is that we got some real clarity around why Mason was having more difficulty with his breathing. We found out how interconnected all of his issues are when we did a swallowing study on Halloween. We found that Mason was in fact aspirating (slipping food into his lungs) if thin liquids went into his mouth or if he refluxed. We also saw quite clearly that this has a significant impact on his lungs. 3 days after the test, Mason's breathing became much worse and we made a trip back to the hospital. This time around, we stayed for 8 days, but accomplished a tremendous amount. We had a case conference to get all of his many providers on the same "page," we had some xrays done that show that Mason's lungs are overall improving with time, and we made some of those difficult decisions (I'll go into details a little later).

We also repeated the ultrasound of Mason's heart. Again, it showed that things are stable. Despite the worsening in breathing, his heart is holding steady.

Eating: We have become quite adept at the continuous tube feedings. We've learned how to manage all the extra tubes and lines and don't quite know what to do when holding a baby that doesn't have the extras. With the exception of the aspirations with reflux and the testing (minor details, I know), Mason's feedings have been a breeze. He is getting much bigger and even looks like a chunky little baby now.

So, now for the decision. After talking to the entire team and each other, we decided to go forward with surgery for Mason. It is a very scary prospect, but his lungs cannot get better if he doesn't have the surgery. The continued aspirations will end up harming his lungs more, and won't allow them to get better. Many have asked what the surgery entails, so here are the details:

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 will 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. So, we are set for surgery on December 9 (just 2 days short of 1 year since we found out that I didn't have enough amniotic fluid and was placed on bed rest). We are extremely nervous about the surgery and recovery. Please pray that all works out well.

Weight:
We don't have the percentile information, but we do know that Mason has gained weight at a very good rate. He is tolerating his feeding tube really well, and like I wrote above, becoming a chunk! He is racing through his 3-6 month clothing, and almost a perfect fit in his 6 month clothes.

As of today, Mason measures in at 14 lb. 5.3 oz, 25 inches long, and a head circumference of 17 inches.

Development:

Mason has his monthly visit with the physical therapist on Monday, so I'm not sure if he's still on track for his developmental milestones for his adjusted age (just 6 months from when he was supposed to be born). I do see Mason getting stronger, though. He is now able to roll from his stomach to his back (unless he gets too frustrated at being on his tummy even for a little bit), and is working on sitting without support. He smiles, giggles, and "talks" almost all of the time and loves reaching out for his toys. Our biggest challenge right now is avoiding watching TV. It seems no matter what position we have him in facing away from the TV, he can still contort his neck/body to find it and watch it. Cracks me up!

Thanks again for everyone's prayers and support! We couldn't get through this without all of you! Please say an extra prayer or 2 for us around December 9th.

Love,Christi, Bill, and Mason

We're HOME!!!!!

Bill and I figured we'd better pack our things up last night and load the car this morning. If we did that, then they'd say "go home" for sure. We just knew that Mason would agree that his mom and dad really needed to sleep in their own bed again. So, we took the chance, and sure enough at about 5:00 tonight, they let us come home.

Mason had a pretty good day in the hospital. He had a really great visit with his Staramama and his Great Grandma. He got to say good bye to all the tons of people coming in and out of his room all day and to the hospital that has been our home for the last week. I realize a week really isn't a long time, but since it's becoming a monthly occurrence and I didn't get home in that time, it seems like its longer.

So, we are all well equipped with a plan, with new medications, new equipment, and more oxygen. I'm sure tomorrow we will get a host of calls to set up follow up appointments, so we will be busy for the next month. As of now, the plan is to have the surgery on December 9th. Until then, we need to keep Mason "healthy" and stable, and try not to worry too much about what's to come.

I am so excited to get into my own soft bed that I'm going to cut this one short. Thanks to all of you who have continued to keep us in your thoughts and prayers. We appreciate every one of them!

On Second Thought

We were all packed up and ready to go home this morning and Mason decided it wasn't time yet. He had what could be called an "episode." When he woke up this morning, he did his usual coughing/trying to get out the junk from the night. The only difference was that his oxygen level dropped quite a bit and would not come up easily. We ended up giving him "blow by" oxygen (another big tube that just blows oxygen at him) and turned up the oxygen through his nose from 1.25 liters to 2.5 liters. Finally, his oxygen saturation came up and has been getting better throughout the day.

Thankfully, the pulmonary resident came in right around the same time and was able to see him/give suggestions right away. The doctors all listened to his lungs and thought that maybe his left lung was a little "chunky" - meaning that there may have been some gunk in there. So, they ordered a chest x-ray, asked the respiratory therapist to do some "chest therapy" on him (using a small, soft cup type thing to tap his chest repeatedly to loosen up the gunk), and decided to keep him another day to make sure that was what was going on.

Good News: Soon after the chest x-ray, Mason did cough up a good bunch of gunk, and started to saturate much better. Over the next couple of hours, after the chest therapy and coughing up a little more gunk, we were able to turn his oxygen back down to 1.5 liters and he's been there ever since. He has been playing and sleeping off and on and doesn't seem to be any worse for the wear.

Even Better News: His chest x-ray looks even better than Tuesday's. He looks like he is exchanging air a little better and definitely has more dark spots (this is a really good thing!).

So, we are hopeful that we can return home tomorrow, but very thankful that we were here when he had this "episode."

No News is Good News

Mason is doing fairly well 1 day after having his "2 month" immunizations. He is a little more fussy when he gets tired, but generally still happy. He has needed a little bit more oxygen today (wasn't really able to get down to 1 liter), but doesn't appear to be having any kind of a bad reaction. Later in the evening, we did find a red spot where he had 1 of his immunizations, but the doctor looked at it and was pleased. Apparently, this means that his immune system is reacting to the shot which is what it is supposed to do. They will continue to monitor through the night to make sure he still does ok, and barring anything new, we will likely be headed home by late morning.

Mason is needing about the same amount of oxygen as he was at when we came into the hospital, but hopefully over time, the effects of the aspiration last week and the effects of the possible cold he had will wear off and his oxygen need will come down over time. If not, hopefully he will remain stable and be ready for surgery in December.

Shots All Around!

Here we are at Friday and we could probably use a shot or 2, but the title actually refers to Mason's immunizations. We put off the immunizations in the NICU because we had seen a couple of other babies having respiratory reactions to their shots. Since Mason already has a compromised respiratory system, we wanted him to be stronger before getting the shots. So, now that he is about 2.5 times bigger, and in the hospital where he can be observed for bad reactions, today was the day. He got his DTaP, his 2nd Hep. B, his Hib, pneumococcal, and 1st flu shot. For those of you who don't have kids or don't remember what everything means, the DTaP is diptheria, tetanus, and pertussis or whooping cough; the Hep B is for hepatitis B; and the Hib and pneumococcal are for bacteria that can cause meningitis. Bill said the nurses were great about doing the shots all at once (I guess they triple teamed him) to avoid prolonging the experience. So, we've got it behind us now, and so far, so good: no bad reactions. In fact, he and the attending doctor were giggling at each other quite a bit this evening. I'm glad to see he always returns to his happy, giggly, smiley self. We will be here in the hospital for a couple more days, just to make sure his lungs stay stable after the shots.

Otherwise, Mason's doing about the same today, maybe even slightly better. He hasn't had to go up to 2 liters of oxygen today, so although its a small step, it is a step in the right direction. We will take all the small steps we can get!

Finally, A Plan

We had our care conference today and had a very good discussion with the surgeon, lung doctor, Mason's pediatrician, the hospital team, and the speech pathologist.

The lung doctor talked a lot about the unknowns. We don't know how much Mason's lungs have improved, we don't know how much they will improve, we don't know if they will improve, and we don't know exactly what the course of treatment should be. Mason continues to be "different" from other kids because of how his lungs came to have problems, not the type of problems his lungs have. He continues to march to his own drum because there aren't a lot of kids out there who survived the minimal amniotic fluid that he had while in the womb. So, we have to make our best guesses about treatment based on what they have learned from kids with other types of lung problems. What he does know is that Mason has "very significant" lung disease and will take a very long time to get better (if he does get better). When I asked what a "very long time" was to him, he mentioned years. He expects Mason will need oxygen for at least another year or so. While this is not fantastic news, it is really good to know so that we can set our expectations around it. We can expect ups and downs, but real change will take a lot longer.

The surgeon talked about the reasons for surgery, what happens in the surgery, and what to expect for complications (should they happen). Both he and the lung doctor were very clear about the outcome of the surgery: it will not make Mason's lungs better. It will however, help to keep him safe while we wait for his body to grow and his lungs hopefully get better with that growth. So, the burning question from folks is why do the surgery. What we have come to understand is that the potential for his lungs to get worse is very high; when he refluxes and aspirates, his lungs will get much worse. He needs the surgery to help prevent the potential for getting worse.

We also talked about what will happen after surgery. Each of the providers was pretty sure that it will take several months for Mason to return to baseline after surgery because of his lung condition. We are hopeful that he won't need to be in the hospital for too long, but regardless of where he is, he will have a higher oxygen need and not be able to eat by mouth for quite some time.

So, the bottom line is that everyone agrees that the surgery for reflux and a g-tube (feeding tube directly into the stomach) is the way to go. The surgeon proposed that we go 4-6 weeks of being "stable" off of steroids before doing the surgery. This will give his lungs the best chance for being as strong as they can be before the trauma of the surgery. If something worsens before then, we will move up our timeline. Which leads me to what are we doing now.....

We are changing Mason's anti-reflux medication which may help temporarily buy us some time until we get to the surgery. We are going to repeat the heart ultrasound to make sure that Mason's heart is still stable. And, we are going to move forward with his immunizations to keep him safe from all of the nasty stuff that could come his way. All of these things will be done before we go home to make sure that he responds well to them and doesn't have any bad reactions.

At the care conference, we also talked about some parameters/guidelines for Mason's oxygen needs to "qualify" for discharge and to try to prevent coming back in to the hospital. The pulmonologist assured us that it is no longer dangerous to give Mason more oxygen up to 2.5 liters/minute. When we left he NICU, our limit was 1 liter and he has been exceeding that regularly in the last month. We have been fearful that increasing beyond 1 liter was putting him at risk, but are encouraged to know that more oxygen is not going to be dangerous for his lungs anymore. So, we have a little more flexibility with what is safe at home. Our pediatrician was also given some more tools to help us should Mason's need for oxygen go up a little more.

All in all, it was a very productive care conference. We, and all of Mason's providers are more aware of the entire picture and how all the moving parts fit together. We are confident that he has a good team of doctors who care for him and are happy to work with us for the best possible outcome.

Just Another Day at the Hospital

We made a little bit of progress today. Well, I should say Mason did. His oxygen need is fluctuating a little bit more today - at times he is down to 1 liter (still high for him) and at times it is back up to 1.75 liters. I call this progress because before last night, he was needing 1.75 liters all of the time. They never did do the viral test, but felt that it was not really needed as a virus was not a likely answer. We did get more information about the plan. Seems that all are in agreement that the surgery needs to happen, we just need to figure out what the best timing is. We will be having our care conference with Mason's GI doctor, lung doctor, pediatrician, and hospital team tomorrow and will likely have some decisions made. We have a mile long list of questions and concerns to share with them and hopefully will get everything addressed before long.

For now, we'll just continue to wait and see. Feels a little like all those weeks Mason and I spent in the hospital before he was born.......

Hurry Up and Wait

Today was a day that can best be described as "hurry up and wait." We started the day with Mason grunting his way from asleep to awake. When he does this, his oxygen need typically goes up, and today was no exception. Before long, he was up to 2 liters of oxygen into his nose and low oxygen saturations. Both Bill and I were quite frustrated since nothing had changed in the plan and we could have continued to do this at home. Shortly after I dragged myself off to work, though, Bill and the doctors made some decisions. The plan for the day was to give Mason another dose of Lasix (diuretic), change from using an inhaler for one of his steroids to a nebulizer (basically a mist blown into his face), test for viruses, re-place the feeding tube, and have a care conference. Then came the waiting. By 12:30 when I came back, none of those things had been done. So, again we waited. We found out much later (about 4:00) that they wanted to again talk to us about each of those things, but wanted to have enough time to devote to the whole conversation. So, we waited. Finally, about 5:00 or so, some of the things happened (Lasix and nebulizer) and now Mason is feeling much better. Tomorrow they'll do the test for viruses, they found out they don't have to re-place the feeding tube, and the care conference is still in the works.

The good news: The lung doctor came by today and had good news to report. The x-ray showed that Mason's lungs look like they are moving air better than before. So, they are growing/developing as well as they can.

The bad news: The running theory of why we are having these setbacks continues to be the aspirations (food/stomach juices slipping into the lungs because of reflux). So, despite the lungs getting better, the aspirations are potentially hindering the improvement.

The bottom line: So, it's getting to be decision time. Hopefully Thursday afternoon we will be having the care conference after all. After talking to all of Mason's providers at once, getting all risks and benefits on the table, and voicing our concerns, very likely we will agree to the surgery (both the feeding tube into the stomach and the reflux sugery - see the 7 month update for details). This is a very scary prospect for us, but potentially our only option for lung improvement.

For now, though, Mason is feeling much better and we will likely be able to decrease the oxygen over the next day or so. We'll keep you posted.

P.S. Joey, you are in our prayers!

We're Baaack!

Over the past several days, Mason's oxygen need has steadily crept up. On Friday, he was needing 3/4 to 1 liter, Saturday it was pretty much 1 liter, and yesterday it was mostly 1 liter, but a few creeps up to 1.5 liters. Then last night (another rough night for sleep) we had to turn him up to 1.5 liters for much of the night. Following the instructions from our pediatrician, we called and talked to the on-call lung doctor. After a brief run down of the last few days, he agreed that we should come to the hospital. This time, though, we bypassed the ER and were admitted straight to a room, almost as if it was a planned admission. So, we find ourselves back in the children's hospital where our nurse who worked with Mason for 1 day last time remembered us and has been wonderfully helpful.

When we got here, Mason started smiling and giggling as if he was in a familiar, friendly place. For this we were thankful as having him happy makes the hard stuff bearable. Throughout the day, though, he hasn't had much sleep and hasn't been able to have food pending confirmation of the feeding tube placement, so he's become a little more crabby. Hopefully tomorrow will see another change for the better as we continue to fit all of the pieces of the puzzle together to figure out why Mason is having more trouble with his breathing.