Home, Sweet Home

Well, apparently I didn't jinx it with last night's post. Mason has continued to do well and is stable with both his oxygen and his labs, so we were sent packing today. We are so thankful that we ended this hospitalization so positively with a reduction in oxygen need and maintained stable labs. Mason is very happy to be home where he can roam around as much as he wants to. He is even showing us how much he can still learn, develop, and grow while in the hospital. Once he gets home, he just wants to strut his stuff...

Dare I Say, It Was a Good Day

I know, I might jinx it, but it's worth celebrating the good times, too. Mason started the day needing less oxygen than he needed the previous mornings. He was doing great! I didn't even need to turn up his oxygen during his blood draw this morning - a first! He was actually needing less than 3L and his heart rate was around 100 beats per minute (really good for him!), AND he was in a good mood!! It was great!

Right after starting the steroid and doing his nebulizer, Mason did end up needing a bit more oxygen, but only up to 4L. This lasted for about 3 hours, then once again, his need decreased and he relaxed. He did have a little bit of 'roid rage today, but was fairly easily distracted by talking to Staramama and Pomp-pomp on Skype.

I am so thankful for good days! Please pray that this continues and I didn't just jinx it by putting it in writing!

Mama Bear and Baby Cub

Well, both of us were roaring today. I started it and Mason continued. We started out a little rough with a confrontation between me and the respiratory therapist last night. Then, at 6am, another RT came in and the confrontation escalated. Finally, with the resident on call and all of the nursing staff supporting me, we had resolution an hour later. Mama bear was roaring this morning! Those who have encouraged me to have thicker skin and a stronger spine would be so proud!!


After waking during the morning events, Mason fell back asleep and ended up sleeping until about 10. We started the 2nd dose of the IV steroids at about 11 and his roaring started. No nap today, but lots of fussiness. The good news, though is that his oxygen need has come back down after an increase yesterday. He's breathing easier and saturating better. As time passes today, the roaring has decreased steadily and now he's just about back to normal -- well, as decreased as it's going to get in a 1.5 year old who hasn't had a nap.

2 of 3 days of steroids behind us; 1 more day, then a couple of days to monitor and we're home for another month. This one's been difficult, but we've learned a lot and they'll only get better!

Finally, We Got What We Came For!

First of all, Mason wants to make sure to say, HAPPY BIRTHDAY, PAPA!!!


"I don't care who does it - NICU, PICU, IV therapy, Panda, or anesthesia - I want the best person in the hospital to get up here and start an IV!" That's the fantastic quote from our fantastic attending pediatrician after still no IV at 9:45 this morning. I loved it! He made some phone calls, talked to the anesthesiologist, and we had a plan by about 10:15. The anesthesiologist was just getting started with a surgery, but once she made sure the airway was good, she could let her resident monitor things, step out, and get an IV started for Mason. So, that's just what we did, finally! So, about 23 hours after arriving, we finally got what we came for - Mason started his pulse dose of steroids.

Unfortunately, between the 'roid rage, the likely aching from being poked 8 times, the IV forcing his foot into an awkward position, and Mason's last tooth starting to cut through his gums, he didn't have a great afternoon. He needed quite a bit more oxygen most of the day, but is now starting to need a little less oxygen tonight. Now, if we could just get his night time medications and head to sleep, we could start the day fresh tomorrow.

Don't Worry, This One Was "Planned"

As "planned" we arrived back at the hospital today to start our 2nd round of Pulse Dose steroids. Unfortunately, plans never seem to go quite like they are supposed to whenever Mason is concerned. As I write this, an hour after Mason's regular bed time, we are still awaiting the team with advanced training to come and start an IV for Mason so that he can start his 2nd Pulse Dose of steroids. I should give some credit to the system, one of the members of the team that was on 6 hours ago did try, but after 3 attempts, she gave up and said she would send someone else from the team. So, 6 hours later, 9 hours after checking in, we are still waiting to start the steroids. Sure am glad we spent the day waiting.

On the positive side, we are back in the big room we left when we discharged 2 weeks ago. The nurses are wonderful and worked it out so that it was available for us a few hours after we arrived.

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I never posted the first part of the message and now I'm back writing at 10:45 pm. Another couple of people from the team showed up to try to start an IV and once again, unsuccessful after 3 tries. Very frustrating. Still no steroids. Now, they'll call anesthesia to see if they can start an IV. Hopefully, sometime before midnight, we can start the steroids. After all, it's what we came for nearly 10 hours ago.

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3rd update - 11:50 pm. No IV tonight. Won't start the steroids tonight. Anesthesia will come and try tomorrow. I'm awaiting a conversation with the doctor to make sure that we are 1st on anesthesia's list tomorrow so that we don't spend a 2nd day waiting. Very frustrating day.

By the way, today marks the 2nd anniversary of the day that Bill and I found out that I didn't have enough amniotic fluid and that our son may not survive to be born. It is amazing how much has happened in those 2 years. We have plenty of frustrating days like today, but are so blessed to be a part of his life. He is truly an amazing child with an infectious laugh, a fantastic smile, and the best disposition I've ever seen in a kid. I know, I'm biased, but I have proof. All of the nurses chomp at the bit to make sure everything is perfect for Mason when he comes to the hospital. They line up to work with him and all come by to say hi when we are here. We are so lucky!!

We love you, little dude!

In Search of the Perfect One

Thankfully, for the 2nd year in a row, Mason was home for a short time in early December, so we were able to go on our annual search for the perfect Christmas tree. We were blessed with beautiful, clear, really cold weather. We bundled ourselves up as much as possible including socks on Mason's hands -- guess we overlooked the need for mittens -- oops! Despite the cold, a good time was had by all and 2 perfect trees were found -- one for us and one for Staramama and Pomp-pomp. Mason's been doing pretty well since starting on the higher maintenance dose of steroids early last week. His breathing has eased quite a bit, he's not working nearly as hard to breathe, and he's generally much happier. We go in this Friday for our 2nd 3 day Pulse Dose of steroids (the 30 mg/kg/day). We are hopeful that after several of these, his maintenance dose of steroids will come down and his lungs will see some overall improvement. We are eagerly awaiting that day!

Missed It By This Much

We narrowly avoided going back to the hospital today. For the past couple of days, since being home, Mason's oxygen level has been on the rise and his desaturations are far too frequent. He's gone from needing 3.5 L while sleeping and 4-5L during the day to 7 while sleeping and awake. Saturday night, he was awake nearly every hour with his monitor screaming at us. Last night was a little better with the monitor only going off every couple of hours. However, this morning, we could barely get his oxygen saturation above 90% and couldn't keep it there for the life of us.

So, instead of going in for our routine "post-hospital follow up," we saw our wonderful pediatrician with the goal of going through the proper channels of re-admitting Mason. As always, our wonderful pediatrician was wonderful and suggested the possibility of trying a couple of things at home. He contacted the pulmonologist on call who supported the idea of trying things at home, but was certain that we'd still end up needing to be admitted by tomorrow -- what a vote of confidence!! Our wonderful pediatrician left the decision up to us, in part, I think, because of the look of sheer exhaustion on our faces. In the end, we decided to try increasing the lasix and the steroid on our own and seeing how things go. The good news is that Mason's labs looked pretty good...potassium down, chloride up, sodium a little high, but not too bad, and carbon dioxide elevated as always (so who's counting?).

The better news is that tonight, Mason is resting a little more comfortably. About mid day, he had a significant desaturation that took a bit to recover, but after a whole bunch of oxygen, some futile attempts at comforting him, and successfully suctioning 2 major nostril blocking boogers out of his nose, he's doing better.

What happens tomorrow remains to be seen, but for now we will start the night as we have the last couple of nights -- saying a prayer for a better night and a better day tomorrow and going to sleep in my own bed. I am hoping that the morning doesn't find me sleeping on the air mattress in Mason's room once again.

Chief is a Happy, Happy Dog

He has his boy back! Yes, it's true, I am writing this post from home tonight. Mason is sacked out in his own crib and I'm looking forward to sleeping in my own bed for the first time in 35 days.

While happy for us, you may be wondering how this happened. Simply put, we said enough. We've watched Mason's labs stay mostly stable over the last several days and we have seen his oxygen be high, but fairly stable over the last 3-4 days. The doctors weren't really going to do anything different, just continue to monitor and adjust his oxygen as needed. Well, we realized we can do that at home. We can take his blood pressure, we can listen to his lungs, we can take his temperature, we can take him in to have blood drawn for labs, we can weigh him and his diapers if needed. We know how and are ready to do all of that, so what's the point of staying in? We figured and the doctors agreed, there's no real point, so let's go home already! So, we did.

We do have plans to return to the hospital on Dec. 10th to do our 2nd pulse dose of steroids. We plan to stay for about 6 days, 3 days for the steroids and 3 days to get back in balance. Until then, we are hoping for stability and a little sanity in the chaos of lab draws, weight checks, and other events.

Thanks for all the love, support, food, and prayers throughout this ordeal. We appreciate every one!

One Day At a Time

Well, there's not much to report for today. Overall, today was pretty much the same as yesterday. Mason awoke needing more oxygen once again. He was up to 6L for a short time, but after a good nap in the late morning, he did a bit better, needing between 5-6L throughout the day. The attending pediatrician did mention that Mason's lungs sounded much better than he'd heard them this afternoon. Overall, he was playful and happy today, only a few temper tantrums...

We're hoping that this stability lasts for a few more days, then we might think about the journey home. I gotta say, though, it's much more comfortable here since switching to a larger room!

A Great Thanksgiving

Bill, Mason, and I hosted a Thanksgiving dinner for 10 people this year. We cleaned our place; we brought in additional furniture; we even moved to a bigger place; all in an effort to make sure we accommodated everyone. Well, ok, maybe "hosted" is a little misleading. Actually, we are still at the hospital, so everyone came to us. Staramama and Pomp Pomp got the food (thanks Aunt Denise and Uncle Curt for the turkey!!!), Aunt Juli cooked the dinner and brought it to us, and Uncle Ryan was granted time off from work to come and join us. We even had enough food so that our 3 favorite nurses were able to enjoy a home cooked Thanksgiving dinner. We couldn't have asked for a better way to spend a holiday in the hospital. It almost made us forget where we were and that we've been through such a difficult time over the last several weeks. It also put things into perspective about how our lives are so intertwined with others'.

God has a way of making sure that things work out the way they are supposed to. Today was evidence of that plan. When we started the day, there were 18 patients on the floor. Then, a mass exodus started, and by the end of the day there were only 7 patients left, so many of the nurses were sent home. We were so fortunate that the 3 we have developed a relationship with over the past 6 weeks were the ones that stayed. They have been so wonderful making sure that Mason is ok, that our needs are met, and that we keep our sense of humor during this endurance race. Working over any holiday is hard for anyone. I am so thankful that the plan for us including making sure that those 3 nurses were able to enjoy a Thanksgiving dinner when they couldn't be with their families. We poked our heads out a little bit after we brought them food and they were taking pictures of the 3 of them with their Thanksgiving dinners - perfect!

As far as Mason's health goes, today was another day on our roller coaster. Last night he went to bed at 2.5L, at 2:30 in the morning, he needed 3L, at 6:30 in the morning, he needed 4L. His labs in the morning weren't great, his lungs didn't sound great in the morning. I'm not sure what changed or why it happened, but it did. Thankfully, later in the day, he did a little bit better; his labs looked much better (chloride on its way up, potassium on its way down, kidney function improving), and his lungs sounded like he was moving air much better. I think it's just part of our roller coaster and we just need to keep riding it. Tomorrow will be another day and we'll just have to face what comes with it.

On a very positive note, the doctor who was here at the very beginning of Mason's hospitalization was covering tonight. She mentioned that she had a patient who did the monthly steroid bursts like Mason is going to do and does very well with them. Her diagnosis is different, but the intent is the same - decrease the inflammation. It was nice to hear about someone else's success with such a rare treatment.

Hope everyone had a wonderful Thanksgiving with family and friends. We are truly blessed to have such a fantastic support network. Thank you for all of your continued support, friendship, thoughts, and prayers. We could never have made it through this stuff without you!

Changing Expectations

Slowly, but surely, Bill and I have been changing our expectations for the goal of this hospitalization. When we first arrived (32 days ago), we set out to get Mason through the acute rise in oxygen need, balance his electrolytes, maximize the effects of his diuretics, and ultimately get back to baseline. We did reach 1 of those goals and are hopefully on the way to reaching at least 2 of the others. However, as far as getting back to baseline, we are starting to realize this was not a realistic goal for this hospitalization. Thanks to a few conversations with the lung doctors, we realized that Mason's lungs have been injured and will take some time to heal. So, we are modifying our ultimate goal to Mason being stable with his oxygen need. That seems more realistic and allows us to think about going home sometime before 2010.

Today was a pretty low key day. Mason ended up needing about 4.25L of oxygen all day and was fairly stable. His chloride level is coming down and his other electrolytes are remaining fairly stable. The doctors are still pretty concerned about him not gaining weight, but with only 1 day with the increased calories, I'm not as worried about not gaining weight in 1 day. We are going to increase Mason's steroid just a little bit tomorrow to see if that can help decrease his "work of breathing" to allow him to be a little more relaxed and burn a few less calories by just breathing.

In the spirit of the season, I thought I'd share a few things that we are thankful for: having such loving and supportive family and friends, having flexibility in our lives that allow us to be with Mason when he needs us, having enough of an understanding of Mason's condition to know what questions to ask to "lead" the doctors to some answers, and for our little boy who shows us how to be strong, how to laugh, and how to endure!

We hope you all have a wonderful Thanksgiving and are able to share good time with family and/or friends.

Don't We All Need a Little More Fat?

For the last 31 days, Mason has been weighed just about daily. Normally, a baby grows a little bit every day or at least gains weight over the course of a month. Unfortunately, despite the increase and concentration of calories, Mason has not gained weight over the last month. So, for the 2nd day in a row, we are increasing his calories by adding even more fat - well, microlipids really. Don't I wish not gaining weight was a problem I had. I can think of a lot of foods with a lot of fat that I'd feel much less guilty about...

Mason had somewhat of a rough night last night. He was clearly working harder to breathe and needed 3.5 to 4L of oxygen all night - quite the jump compared to the 1.5L he had needed the night before. This morning, he again needed more oxygen (around 5L when he awoke), but thankfully, the coughing was a little less and there was far less wheezing. The doctors once again ordered an extra dose of lasix to help him get rid of fluid. Throughout the day, he was calmer than yesterday and somewhat more comfortable. When I returned from going in to the office for a few hours, Mason was only needing about 3.5L of oxygen - much better than when I left.

It sure does seem that each day is its own and we never know what to expect with Mason. Every day I awake and wonder how much I'll need to turn up his oxygen, how much his teething will affect his breathing, and whether or not it will be a good day or bad day for him. I am so thankful for days like this when he seems fairly happy and we end better than we started. It's so great to continue to hear him laugh, to give him a high 5, to see him signing the word "more" when he wants more ice water on his teething towel, and to hear him babbling about whatever he is doing. It's amazing to me that despite the fact that he's basically been in a cage for the last month, he is continuing to develop his communication, his fine motor, and his gross motor skills. It makes his PT mama very proud!

Dancin' a Cha Cha

Since Bill's embracing his Chi, I thought I'd do a Cha Cha - isn't that the dance where you go forward and back, forward and back with a few steps in between? It feels like the entire hospital stay has been a Cha Cha - we move forward, we move backward, we do a side step, then start moving forward, then move backward, you get the idea.

Well, today was one of those backward days. Mason awoke a couple of times in the night and again appeared to be having teething pain. He ended up needing only 2L at most, but then when he awoke for the day, his oxygen need started going up and up. As with the other days, he started off with a somewhat productive cough and wheezing. Unfortunately, he was also clearly agitated which didn't help his oxygen need. Only after some ibuprofen did he actually calm down some. His oxygen need stabilized at about 4L until the ibuprofen wore off. Unfortunately, it then went up again to 6L until another dose of ibuprofen and an extra dose of lasix.

So, once again, we were left with wracking our brains to figure out what could be going on...Could it be teething again? - maybe. Could it be the chloride level was too low so the lasix wasn't working as well as it should? - maybe. Could it be that the steroids messed with is fluid level? - maybe. Could it be that the pulse dose didn't work? - maybe. Could it be his upper airway is more affected than we thought? - maybe. Could it be that the effects of the TOBI haven't worn off yet? - maybe. Sometimes it just feels like we should have all of these choices on a spin wheel and let fate choose which one we focus on today. More than likely, it's probably a combination of many of these, so we attack from many angles -

• we give ibuprofen for the teething,
• we boost the potassium chloride to make the lasix more effective,
• we give more lasix to get whatever excess fluid there is off,
• we talk to the pulmonologist about the upper airway (again - but, then it is a new pulmonologist this week), and
• we talk about what effects they were hoping for with the pulse dose.

Man, I'm tired just looking at all the events of the day. It really was a long day, but in the end, Mason settled back down to 4L and was much more comfortable. We did spur some curiosity in the research for our lung doctor, so he's going to look up a few other things for us. We also found that he did not think that Mason would somehow get a ton better after this first pulse dose. He actually thinks that it will take many of these pulse doses before we see a big change in Mason's lungs. This was just the first step in that dance. It was encouraging to hear that he wasn't worried about Mason not doing as well today as yesterday. It was also encouraging to hear that he thought it would take a few months before Mason was totally healed from his aspiration pneumonias that he had a couple of months ago. It means that this is not the best that he's going to get for a while. He will get better, we just have to have patience. Hmmm...I think that's a theme we keep coming back to. You'd think we'd have learned our lesson by now...

Embracing the Chi

Ch'i or qi (pronounced "chee" and henceforth spelled "chi") is the Chinese word used to describe "the natural energy of the Universe."

I will be embracing the natural energy in the universe, Since there is no good take out and I'm tired of the food in the cafeteria, I will share the the words of wisdom from the wold of Joy Wok.

Fortune of the day. "Seek out the significance of you problem at this time. Try to understand."

I have a lot of problems, with varying degrees of significance and understanding it is impossible.

stay tuned for tomorrows fortune!!

Correction!!!

The numbers are better than expected!!! I didn't shoot a 75. I was only 3 over for a 74.

Mason as well is doing well. With the cancellation of the TOBI He did not have to go up on his O2. When I left he was down close to 1 liter. Good news...

Christi was able to go home and spend some time at home today, I'm sure that she will blog after me.

More good news, I'm off the Chinese take out wagon. I had pizza! Still a form of take-out, I'm working my way around the world on take-out. Anyone know a good falafel stand on the way to OHSU?

Maybe We're On To Something

The oxygen need is down. The IV still works for blood draws. The agitation is subsiding. The coughing seems to be better. Maybe we're on to something...

For the since November 7th, Mason is back to baseline! For the most part, he needed 1.5L of oxygen last night, though he did have a couple of times when he needed more momentarily. Today, we only had to go up as high as 3.25L when he first woke up and were able to turn him down under 3L before noon. Yesterday, I had to turn him up to 6L after doing the TOBI nebulizer (antibiotics), but since stopping that medication, he's doing better.

We have been protecting Mason's IV with everything in our power so that we could keep it long enough for the steroid burst, but even more so that we can save Mason from all the lab draws. Thanks to all of that care, the IV is still working well for drawing blood. Hopefully it lasts for a few more days or at least until we decide he doesn't need any more lab draws!

Slowly, but surely, the agitation Mason had on Friday after the 2nd day of his steroid burst, has subsided. He was a little upset a couple of different times, but generally happy and wanting to play. This morning, Clifford the Big Red Dog was on TV and the dogs on the show started barking. Mason thought this was the funniest thing and for the next hour or so was saying "dog" over and over and over again, just cracking himself up. It was good to see him laughing again.

Mason awoke with his productive cough once again, but after getting through the morning gunk, he was doing much better. The lung doctor though that this might be residual from the TOBI nebulizer and should continue to improve. He was encouraged that Mason was loosening up some of the gunk in his lungs.

Things finally seem to be moving in the right direction. Mason is making some really good progress with his breathing and his mood. Lest we get too excited, though, we must remember that we are looking for a lasting improvement. The next 2 days will be telling as to whether or not this treatment worked. Please continue to keep us in your thoughts and prayers and help us keep our hopes up that the next 2 days will see continued improvement or maintenance of the improvement we've seen.

ups and downs.

I knew today was going to be good. The numbers are down, 4 over. 2 over on the front and an unavoidable double bogey on the 17th to post a 4 over 75. One of the best rounds of the year. If you asked me what year it is, I probably couldn't tell you.

As for Mason, He is doing better. The Nebulizer (TOBI) that they stopped yesterday was attempted again and it did not work very well... This medication no longer has a place on the Med sheet since it irritates Mason into a horrible coughing fit thereby increasing his O2 need.

From what I have noticed and for the time-being the steroid pulse is working. Mason is having some productive coughing fits that have the sound of gunk coming undone - this is a good thing. The inflammation is decreased in his lungs and the gunk can now get pushed out.

3 days ago I got a fortune cookie that said "tomorrow will be a lucky and memorable day for you." The next day...nothing. Today I got another fortune cookie that said "Today will be a lucky and memorable day for you." Two things; first, yes, I have been eating a lot of Chinese takeout lately; second, will someone please tell me when I'm going to have a lucky and memorable day? Relying on fortune cookies is not panning out as well as I hoped.

Thanks to everyone who has helped us out! Debbie and Galen for the wonderful Halloween goodies and gift card, the Orchards folks for the gift card, all the dinners people have supplied us, and most recently to Heather, Shane and the kids for the box of goodies. Shane I don't know how to thank you -- you always come up with such great ideas and are so gracious!

A Raging River

Between the antibiotics and the steroids, that's exactly what we have - a raging river (and not in a good way!). The steroids have done a fantastic job of decreasing the inflammation in Mason's lungs. He is moving more air and breathing a little easier - well, at least he is when he's calm.

Imagine if you will, the worst case of PMS you've ever seen. Then, imagine thinking it will never go away - ever. Then, imagine on top of the raging PMS, you've eaten some bad food and your stomach and intestines are in knots. Well, I think that's got to be what Mason's going through. He is very irritable, short tempered, and restless. We know it's from the steroids and antibiotics and we know it's worth it, we just have to remind ourselves of that on a fairly frequent basis and do everything we can to help him through it. Thankfully, he does calm down for little bits of time if I hold him and rock him. or we distract him with books and toys, or just drug him with ibuprofen. Without question, we do know the steroids are working, though. Mason was able to come down to 2.5L of oxygen last night while sleeping and his heart rate was much lower than normal for him. He was finally able to relax, breathe, and sleep more easily! Today, during an ibuprofen induced nap, he got down to 1.5L of oxygen. It's really nice to see him breathing easier and makes the tantrums and tirades more manageable.

It's hard to hope that we are able to repeat this in a month or so, but that's what we are hoping for. Perhaps then, without the addition of the antibiotics, he will not be so uncomfortable, so maybe, just maybe the raging won't be as bad. I just have to remember, its worth it to help him breathe easier even for a short time.

Roid Power!

Amazingly, I don't have much to report tonight. After a regular boost dose of steroids last night, we slept well for the first time in weeks! Mason was back down to 4.5L overnight and saturated well. This morning, he started his mega dose of steroids, and so far so good. He is down to 4L while awake right now and seems to be breathing a little easier. He's showing a little "roid rage," but really we can't blame him! We are hopeful the improvement will continue with the next 2 days of mega doses.

Here, CT, CT

So, apparently, Bill and I know what we're talking about to a certain extent. But, I'll get to the gloating in a bit...

Mason started his antibiotics for the possible colonization or infection last night. So far, he's tolerating both types well without any side effects. Unfortunately, antibiotics take a few days to show any improvement, so Mason's oxygen need continued to go up today - needing 6L most of the day. Despite his lungs not sounding worse, his oxygen need continues to go up.

The attending pediatrician came and talked to me earlier than usual this morning. It appears that she was listening when Bill and I said that there was a definite difference in medication/food/sodium/etc, when Mason was doing well and now. She thought about what we had said and decided to start investigating further. So, she went back and looked at his medications for the entire length of stay. She noted a few things we mentioned including the steroid level back when he was doing well, the antibiotics he was on then, and the fact that we might be masking an infection now. Seems Bill and I were on to something with the first 2 points. Mason does better on the steroids..........

One thing we didn't think much about was helping Mason cope with his teething over the last couple of weeks. Because he has so much to deal with on a regular basis, we thought we would help him with Tylenol and ibuprofen pretty much around the clock. Unfortunately, both of these can mask a fever very well, so we haven't had a chance to see if he was fighting an infection. So, we've held the pain relievers and she ordered a bunch of tests to make sure that Mason was doing ok. The good news is that his white blood cell count is just fine, indicating that he isn't actively fighting anything in his system. We'll have to wait a few days before finding out the results of some of the other tests, but we are feeling pretty sure that he isn't sick with a systemic infection.

The big news of the day led to a major change in the steroid management. We've been talking about doing a CT scan for more than a year. The pulmonologists have always said, well, we would have to sedate Mason completely, and we wouldn't really change anything regardless of the results. So, it was never worth it. Then, something happened, we (Bill, I, and the pediatrician teams) started pushing and they started thinking outside the box. Yesterday, the attending pulmonologist suggested doing the CT without sedation - just try and see if Mason could lie still long enough to get an idea of what his lungs look like. Bill and I laughed when the idea was brought to us - right, keep a 20 month old lying still for 15 minutes or so. That's funny!! I never would have believed it could be done, but somehow, someway, Mason laid still enough that we were able to do it. He was amazing!

So, when the CT results came back, it was worse than the attending pediatrician thought, but exactly what we expected...Mason's lungs are really bad. He has significant lung disease - no shock to us. The good news was that he didn't show any evidence of a frank infection or pneumonia. There were some areas that might be some bacteria, but nothing that is collected in 1 spot. We will continue with the antibiotics to treat anything that might be there to prevent it from causing a pneumonia later on. Good news!

The results also led the pulmonologists to suggest another course of action - different from the trach and vent. We are on board with the suggestion and will start the new treatment tomorrow. Mason will be getting extremely high doses of steroid via IV for 3 days (30 mg/kg/day for those of you keeping track). Presumably, after 3 days, his lungs will have significantly reduced inflammation which will allow them to function better for a period of time - hopefully a month. He will go back on his "maintenance dose" of steroids after the 3 day pulse dose to make sure that we don't shock his system (you might remember that he is "addicted" to the steroids because his body doesn't make any of it's own). He can repeat this cycle monthly for quite some time and hopefully will see some improvement. They have done this treatment with other kids and apparently it can be effective to allow the lungs to grow better than if he was on a chronically high dose of steroids (he hasn't been off of steroids since last fall). We will hopefully be working closely with the endocrinologist (hormone doctor) to make sure that we are doing everything safely.

Bill and I are happy with Plan S (I'm pretty sure we've already tried plans A-R during this hospitalization). It makes sense to us, seems to be a true hybrid of all the things we've talked about (somewhat restricted fluid, more diuretics, antibiotics, and steroids), but more aggressive than any of the other plans separately. We know Mason's lungs are really bad, we know that it will take a lot of time for him to grow out of this, we know that he will probably always have breathing trouble of some sort (probably asthma at the very least), but we need to do everything in our power to help him get through this difficult time so that he knows there's a light at the end of this lung disease tunnel!

Please say an extra prayer tonight that the attempt to start an IV goes well tomorrow! If all goes well, it might save a few more pokes in the future, too!!

Mason's Fight Continues

November is Preemie Awareness Month with the March of Dimes. Mason started fighting for his life, much earlier than he should have - 5 weeks into our pregnancy when we found a blood clot where Mason -the embryo had attached. Things went from bad to worse 17 weeks into our pregnancy when we found out that Mason didn't have enough amniotic fluid and might not make it. He continued to fight harder than any baby should and didn't make his outside world debut until 32 weeks, 1 day. Mason's fight continued and he lived thanks, in part, to discoveries made possible by the March of Dimes - surfactant and nitric oxide. As we move closer to Thanksgiving, we are thankful every day for everyone and everything that has allowed our son to continue to be with us today. We owe his miraculous life to God, Mason's own fighting spirit, the wonderful doctors and nurses in the NICU who fought to keep him alive, and to the March of Dimes for the medical discoveries.

Mason's fight continues today. He continues to need a little more oxygen each day, but keeps his spirits up for the most part. We met with the lung doctor today and asked a bunch of questions about the possibility of a trach and vent as well as what else might be going on. He did say that he noticed a possible something going on in Mason's right lung that wasn't present when he came in. It might be that he caught some kind of bacteria or infection since arriving and that may be causing the worsening of symptoms. Mason also had a bacteria culture come back indicating that he has "colonization" of 3 different bacteria. He doesn't have enough of any of them that they should have caused Mason's symptoms to worsen, but Mason never follows the "shoulds." His body does exactly what it wants when it wants, regardless of how it "should" respond. The lung doctor doesn't really agree that the sodium levels are contributing much to Mason's increased oxygen needs, rather its probably what's going on in the lungs physically. So, after many conversations today between the attending pediatrician and the kidney doctor, the infectious disease doctor, and the lung doctor, we have a plan at least for the next 7 days. Mason is going to receive a couple of high powered antibiotics to fight whatever is in his right lung and hopefully help him to turn the corner. If after 7 days he is somewhat better, they will continue the course for another 7 days. It is not uncommon for kids with similar lung issues to come into the hospital for a 14 day course of these antibiotics every once in a while. Guess we'll just have to pray that it works and we can finally think about better days ahead.

As far as our plan I mentioned last night, there isn't much support from the physicians. I'm not sure they realize how much we know about what affects Mason and how credible we are most of the time. We got a couple of pats on the head for thinking about it, but really, no backing. We're not giving up, just allowing room for other options. We will continue to fight!

As far as the trach goes, we don't see it in the near future. It is always going to be a possibility, but if we can get Mason back to baseline with the other, less invasive things, we are going to try every other option. We will continue to fight!

There's Hope. Then, There's Reality

Sometimes I get my ideas for where to start the evening's post from the events of the day, sometimes something strikes me as a good topic, and sometimes its from the last post. Tonight, my inspiration is from last night's post:

"Tomorrow brings another pediatrician to work with. We are hopeful that the plan will remain the same and Mason will start responding better to the medications than he has over the past few days."

Well, there's hope, then, there's reality. We met the new team of doctors just after Mason fell asleep, so we moved Rounds into the hallway. The first thing out of the attending pediatrician's mouth was "We're going to increase Mason's fluid volume and are considering going down on his lasix." Ok, maybe it wasn't the very first thing, and maybe that's not exactly what came out of her mouth, but that's basically what she said.

As Bill says, I must have looked like someone just took a crap in my mouth! We were floored! "Excuse me? Did we hear you right? Do you know anything?" That's what I wanted to say, but what we actually asked was whether or not she had discussed this with the kidney doctor. We thought, it might be important, since she's the one running this show, in reality. She assured us she would talk to the kidney doctor and she would talk to the lung doctor to make sure that he became more involved.

Turns out, she wasn't entirely off base in her theory, and by the end of the evening, Bill and I did some talking and have come up with a plan of our own that involves both decreasing the calories/increasing the fluid volume and decreasing the lasix. Unfortunately, over the last week, Mason's sodium level has been climbing. Now, Bill pointed it out to the team last week, but it was still in the "safe" zone, so they told us not to worry. Today, it continued to climb and was getting into the "dangerous" zone. The pediatrician today was worried that it would continue to climb with his very concentrated formula, so to avoid creating new problems with Mason's heart, brain, etc, she wanted to go back to the formula that had a safer level of sodium.

Well, then, we got to thinking (I know, sometimes that can be dangerous)...When we came in 4 weeks ago, one of the first things they did was stop the sodium chloride that Mason was taking because the extra sodium was likely causing him to retain fluid, which contributed to his increased oxygen need. See where I'm headed? So, if the extra sodium was bad then, and his levels are even higher now, then maybe, just maybe, the sodium in his system is contributing to the problem we are having now - we can't get the fluid out of his lungs because the high sodium is causing him to hang on to it. So maybe the doctor does know something after all. She assured us this morning that she doesn't think the sodium is the magic bullet, but maybe it's a contributor.

So, we got to thinking even more (I'm pretty sure we're at risk for head explosion soon!)...We started looking back at his lab graphs (yes, I graphed them) and compared to the blog posts in which I mentioned his current oxygen needs. It appears, to our eyes at least, there's a pattern. There's a calorie count, sodium level, steroid level, and lasix level that all jive with when Mason was doing well and back to baseline a couple of weeks ago. So, we're going to put it all together for the team and the lung doctor tomorrow and present our case. Maybe we're on to something, and maybe not. Regardless, this has given us a new hope that we haven't had in several days. Talking about the the reality of the trach is pretty defeating. It's nice to hope that there may be another way out!

Tonight, Mason's asleep, saturating well, but with an elevated heart rate (140's) and needing more oxygen than baseline (~3.5L). Somehow, this evening, he was happy, flirting with the nurse, playing with his toys, and splashing in a bath. He is amazing!

A Month of Sundays

Today marks the beginning of our 4th week in the hospital. We've seen ups, downs, and in betweens. Mason's definitely better today than when we walked into the hospital 4 weeks ago, but not ready, yet, to go home.

We did another a burst of Lasix today as the right lung is starting to sound a little wet again (the left has had fluid all over the last week, but the right was sounding clear until today). It's hard to tell this quickly, but it looks like this might have helped a little bit. So, we are staying the course with trying to dry Mason out as much as is safely possible while beefing up his calories so he continues to grow, but doesn't have as much fluid in his system.

Tomorrow brings another attending pediatrician to work with. We are hopeful that the plan will remain the same and Mason will start responding better to the medications than he has over the past few days. Please say an extra prayer for Mason to respond well to the lasix and decreased fluid so that we can start to plan for our return home.

Wait and See

There was more talk today about the trach idea, but mostly clarification that it is an idea if things don't get better. There's nothing in the works, just more discussion.

Today saw an increase in the lasix (4 mg x 2 and 5 mg x 1, with tomorrow 5 mg 3x/day) and restart of another medication (clarithromycin) to help with the inflammation. I imagine we'll see some change tomorrow, but not much today. Mason was needing between 3-4L of oxygen today, but appears to be happy still. We continue to increase the calories in his food and so far he's tolerating it well.

I guess that's about it for today. Not much change, just need to wait and see if we see some change tomorrow.

Communication is Key

We got hit with a major surprise today - and not a good one.

Mason's blood gas values haven't been good since we've been in the hospital this time around. Particularly, the doctors are worried about the amount of carbon dioxide he is retaining. Normally, we have a certain amount of carbon dioxide and a certain amount of oxygen in our bloodstream. That balance is essential for normal function. Because of Mason's lung disease, he has always retained more carbon dioxide than he should. The amount goes up when he's not doing well and goes down when he's doing better. When the number gets above 77, the references say, worry. Mason has had numbers above 77 before and the team working with him has been worried, but never mentioned doing much about it because he didn't look like the number was really reflecting his condition (clinically he didn't appear to be that sick). This summer, the number got as low as 56 - really good for a kid like him. Unfortunately, during this hospitalization, they have looked at the number twice and both times it was really high (92 a couple of weeks ago and 91 yesterday). Apparently, this has caught the eye of the pulmonologist covering the hospital this week. According to the resident we talked to tonight, the only way to "force" the number to get lower is "hyperventilation," and the only way to do this is through a ventilator. So, while rounding today - sometime before noon, the pediatrics team mentioned the idea of a tracheostomy (hole in the throat to which a ventilator could be attached at home). They mentioned the idea in passing and didn't realize that they were dropping a bomb on us.

The idea of a trach doesn't scare Bill and I; both of us have worked with kids who have them. This isn't even the first time this has been talked about for Mason. When he was in the NICU and unable to get off of the CPAP, we discussed this as an option should the steroid burst not work to lower his oxygen needs. Fortunately, it did at that time, so we moved on and didn't give the trach another thought. The idea has been brought up during this hospitalization as well, but it was by the kidney doctor as a question of whether or not it was ever considered. We didn't put much stock in the idea. So, when the team brought it up today as something they were considering, we felt like we'd been hit by a mack truck. How could they be considering this when we just put a plan in place yesterday and he was doing better? How could they be considering this when no one had even talked about it with us? How could they be considering this when the lung doctors hadn't even seen him since early last week? How could they be considering this when the blood gas values were taken when Mason wasn't doing well? Is he really getting that bad and we're so oblivious to the need? The idea of a trach had become unfathomable, but yet we were facing it. How did this happen?

Bill and I set to find out everything we could about a trach as a treatment, looking at the research, looking at cases where kiddos who were active used trachs, looking at our options. Finally, after we thought they had all left for the day and were completely ticked off that no one had come back to talk to us, the resident came in. She proceeded to summarize the work the team had done today -- consult with nutrition to increase the calories and reduce the fluid a little more (a 3 day process) and modify the potassium and chloride supplements (to be monitored daily). She was just about to leave the room when I asked "so what's going on about the trach idea?" Fortunately, according to the resident, this was just an idea that was floated, nothing that is being planned for the near future. Before any further planning takes place, we would need to talk to the lung doctor and our pediatrician to see if this is even the right course of action. She wasn't able to answer many of our questions, but it sure felt better after hearing that nothing is moving forward in the direction of a trach right now. Again, it's something to think about another day. I do have to say, though, it would have eased our minds tremendously earlier it they had let us know during rounds that they were not going to explore the trach option today, it was just something to keep in the back of our minds as something if he doesn't improve. Minor details, I suppose.

We will repeat the blood gas test when Mason is doing better and see if it is trending down. If it is not...well, we'll cross that bridge when we get there.

Mason is still smiling, still laughing, and still cute as ever. He's getting used to his hospital crib and doesn't have nearly as many bruises on his forehead. He is learning to give "5" and giggles when we ask for "high 5." He's doing ok, just needs to be doing a little better before going home.

Mason's Got a Hybrid

No, not the car. He's too young to drive, silly!

Actually, Mason started today with more difficulty breathing/increased oxygen needs. We did end up talking to the nephrologist late this morning and decided to bring Mason back up to the 4mg 3x/day (yesterday I said 0.4, but I had it wrong -- good thing I'm not the pharmacist!!). We know that will dry him out, but that's were we've got to start again. She also talked about increasing the calories in his food a little more again. More than likely, he will end up with some sort of hybrid plan between the 3 mg 3x/day and the 4 mg 3x/day. Once we land on the right dose, we will also start talking about weaning the steroid again -- for now, he's staying at a higher dose

By the end of the day, he was needing a little less oxygen again and will hopefully keep up that trend. We've adjusted when the lasix is given so hopefully he won't need to play catch up on getting rid of fluid first thing in the morning.

We know for sure Mason's bought us at least a few more days in the hospital. Bill's thinking we might be able to go home by the end of the weekend. I'm thinking at least into the middle of next week. Maybe we should have a pool going...

Marching in Place

The good news is that Mason's oxygen need did not go up today. We can pretty safely say that the extra dose of lasix yesterday curbed the increasing fluid. However, he didn't get much better today after yet another extra dose of lasix. By evening, he did need a little less oxygen and now that he's sleeping is back down to 2L -- not back to baseline, but not much better, either. We are hoping that tomorrow the nephrologist (kidney doctor) will ok going up on Mason's daily dose of lasix and give us some guidance on how we can manage this better at home. It amazes me how much difference we see between the last 2 doses of lasix. When Mason was on 0.4mL 3x/day it really dried him out; now that he's on 0.3mL 3x/day, his lungs get wet again. Guess it's a good thing we're doing this in the hospital! I wonder if there is a happy medium???

Mason seems to be tolerating his food better and better, too. At first it was causing quite a stir in his digestive system, but that seems to be settling down a bit. Over time, he'll get used to the very concentrated formula.

All in all, today was another wait and see kind of day. Hopefully tomorrow will bring some improvement so that we can look toward a plan to go home.

Two Steps Forward, One Step Back

I know, I know...get used to it already. We've been here for 17 days and each one of them has been part of the both the peaks and the valleys toward improvement. Yesterday and today were no exception.

Thankfully, the fever Mason had on Sunday broke by morning and we've had no sign of it since. Given that he has continued to chew on his towel like it's going out of style, the fever must have been from teething.

As we expected, yesterday did not see many changes. The new attending pediatrician talked about changing Mason's fluid intake if his labs continued to look good today, but didn't want to change anything yesterday. The dietitian did make a change at our request to the timing of Mason's feedings so that he had a bit more time in the morning to digest the night's worth of food. Otherwise, no changes.

Last night and today we noticed a change in Mason's oxygen need, though. He started to need about 0.5L more than usual during the day and during the night. When the doctor listened to him, his lungs sounded wet again. In other words, he's retaining some fluid again. Most likely, since Friday when they decreased his lasix, he's been building his fluid level up again - depsite the reduction in fluid intake. So, it looks like Mason will need a little more lasix than we originally thought. We just have to find the right combination and dosage of medications. So, we gave a burst of lasix today, repeated the chest xray and here we go again! Hopefully, the set back is just temporary and Mason will return back to baseline by tomorrow.

The best news of the day, though, was the sedated Echocardiogram (ultrasound of the heart). Mason did great and was able to get through it with just some medication in his g-tube. We were able to avoid an IV start and full sedation. After about 30 mins with the medication in him, he was clearly becoming "intoxicated." It was so funny to see him loopy, and giggly. He kept Bill, myself, and the nurses overseeing the procedure laughing through the whole thing. The Echo showed the same as the previous ultrasounds - very mild persistent pulmonary hypertension. His heart is staying stable and not having to work harder than before or contributing to the fluid overload. Great news!

stay tuned .

Christi is too tired to blog. Come back tomorrow. Mason does not have a fever.

A Blip, Bump, Hill, or Mountain??

As followers of this blog can attest, teething has been a challenge for Mason and now is no exception. We're not sure, but it appears that Mason has spiked a low grade fever -- 99.3 degrees at one point today. For most, that's really not that high, but for Mason who typically runs cold (97's), this is a little worrisome. Now, it could be as simple as he was wearing clothes that were too warm (a fleece sleeper) or he's teething (not that uncommon to have a low grade fever), but given the fact that he wasn't his usual playful self today, it appears that he might be fighting off something. The good news is that we're in the right place for it to happen. The bad news is that it might be happening. We will continue to monitor and respond accordingly. Hopefully this is no more than a little blip and we can get beyond it with a little tylenol/ibuprofen.

Tomorrow we start with a new doctor who has been brought up to speed by this week's doctor. We expect to have a slow day tomorrow, then resume our progress toward the right level of lasix and tolerance of the increased calories.

Please say an extra prayer tonight that Mason's fever is temporary and not indicative of fighting an infection!

So Far, So Good

Today was a low key day for Mason. I can actually summarize the day in 1 sentence: There were no changes to his medications, his electrolytes looked better, and he's tolerating another increase in his caloric intake. Of course, why be so brief when I love to ramble on...

Mason was on 2.5L all day with the exception of nap time (yes, he did take a very short nap) when he was able to come down to 0.75L. The doctor is impressed with is ratio of input to output and happy to see that he's doing better with his oxygen need and lab values. She's aiming for less than 1.0L during the day when we take him home (not sure its possible, but its always good to set your goals high). Most likely tomorrow, they will do another cut in his lasix dose to see if he can tolerate it. Then, early next week, he will be sedated a bit to do an Echocardiogram (ultrasound of the heart). He has had several echo's, but they have never really been able to get a good study because he's so active. We don't feel comfortable sedating him as an outpatient, so this is the best shot we've got to getting a really good look at his heart. Better to do it while he's here than have to scramble at some point.

Well, I guess that's about all I have to ramble about. It's kinda nice to have "nothing" to write about...

Cleared the First Hurdle---Bring on the Second!

Today we started the process toward Mason's new plan of increasing calories in his food and decreasing the diuretics. I believe it was a successful start. Mason needed about 2 to 2.5L of oxygen for most of the day today; back to how he was before he started throwing up late this summer! Bill was even able to turn him down to 0.75L while he was napping today!!! I believe that is the definition of success! Last week when we attempted to decrease the lasix by even a little bit, within about 12 hours, Mason went up from needing 4L to needing 8L -- so much different than today. He is an amazing kid who has me in awe every day!

Tomorrow will see more changes toward our goal depending on what the labs show tomorrow morning. Hopefully, all will hold steady and we can continue to move forward. We still have one big hurdle to jump once we get the lasix down and the calorie count right -- Mason will still need to eventually get back down to his normal dose of steroids. This should happen in about 4 days, I believe, and then, a couple of days later we should have an answer as to whether or not that is successful. With how well he's been doing and how well he tapered down on the steroids this summer, we are hoping for an easy wean.

Once again, though, we'll think about that another day. For today, we celebrate a successful wean of the diuretics.

And, as long as we're celebrating, congratulations to our friend, Joey, for accepting the "resignation" papers from his pulmonologist! It is truly amazing that only a year ago you were fighting for your life and today you are doing so well! Congratulations!!

Those Lungs Are Hopefully A-Growin', But They Sure Aren't A-Glowin'

That's right, no radioactive tracer in Mason's lungs this morning, despite the tracer being in his stomach last night. In other words, he didn't aspirate overnight. So, between the upper GI study they did several weeks ago and the nuclear medicine study today, we can say (with as much certainty as is possible right now) that Mason is not refluxing to the point that formula is going into his lungs from his stomach -- REALLY GOOD NEWS. As a result, we've stopped our conversations about feeding him into his intestine. I'm sure it will come up again, but we have these 2 really good tests to fall back on.

We also had our care conference today with a lot of medical minds working together (8 in all - hospital pediatrician, Mason's pediatrician, social worker, lung doctor, lung doctor resident, discharge planner, dietitian, and kidney doctor). Some really good points were brought up about our plan moving forward including the risks and benefits of changing diuretics, the need to balance Mason's electrolytes, the need for fluid restriction to help the lungs, the need for enough fluid to avoid damaging the kidneys, and the idea of trying different formulas with higher calories so that we don't need as much volume. The doctors also talked about Mason's emotional well being while in the hospital for so long. It was really nice to get everyone at the same table to talk about their concerns and their ideas.

So, the moment you've all been waiting for...The Plan:

1. We will probably be in the hospital for another week or so.
2. We are increasing the calorie count on Mason's formula from 30 cal/oz to 45 cal/oz (if he tolerates it).
3. We are going to do a urinalysis to see how Mason's kidneys are doing on the lasix.
4. We are getting rid of one of the diuretics (spironolactone, for those keeping track).
5. We are increasing his supplement of potassium chloride.
6. We are going to try to decrease the dose of lasix that he has to be on.
7. Some folks from Child Life will come and offer support both to us and to Mason and offer some suggestions for ways to help him emotionally.
8. We will probably sedate him at some point and do another echocardiogram (ultrasound of his heart).

When we get home:

1. We will need to do weekly weight checks (hopefully Mason will sit still on our bathroom scale). :-)
2. We will need to check Mason's blood pressure at least 2x/week (anyone got a automatic infant blood pressure machine/cuff or know where we could get one?).
3. We will continue to do routine blood draws (probably once a month).
4. We will do fairly regular urinalysis tests to check for calcium in the urine to make sure his kidneys are tolerating the lasix safely.
5. We will have yearly kidney ultrasounds to make sure he doesn't have calcium deposits in his kidneys.
6. We will no longer have to mix Mason's formula from a powder as it will come in liquid form!!!!!!
7. Mason will be on fewer medications!

I'm sure I forgot something, but will think about it later tonight as I'm trying to fall back asleep at some point.

Oh, and for his stats: On 1.5L oxygen while sleeping last night and up to 3.25L max today. Getting better and better all the time!

We've Gone Nuclear

Things started moving today and compared to the last week or so, it was incredibly busy.

First things first, though -- No 4am vitals!!! Mason was able to sleep through the night for the first time in a week and a half. I was able to get more sleep, though not straight through, but more sleep - guess I'm used to waking at odd hours now. When the doctor came in this morning, he told us that he had heard they had tried to do vitals on Mason at 2am. According to him, when he heard about it, he sent a "nasty-gram" to the nursing team. It's really nice to know the doctors are trying to help us out! He told me that if he heard about it again, the "nasty-grams" would get nastier AND, he's on call tonight, so he'll hear about it sooner. Love that the doctor is rooting for us!!

So, things got moving for us around 11 this morning. We were transported down to the depths of the hospital for Mason's Nuclear Medicine study. We gave him his regular formula with a radioactive tracer in it. Fifteen minutes later, he was placed on his back under a gamma camera, for about 10 minutes while watching Monsters, Inc to help keep him distracted. We repeated the procedure with the gamma camera at 1 and 5 hours after eating. We will go back to the gamma camera tomorrow morning for one last set of pictures. The idea is that if the radioacive tracer is found in his lungs by tomorrow morning, it confirms that he has aspirated. If not, it leads to a possibility that he is not aspirating. We may repeat the study tomorrow evening and see what happens overnight. It is possible that he doesn't aspirate during the day, but may do so overnight. There's very little risk to him in repeating the study, so if need be, we can do that. I don't think he'll turn into the Incredible Hulk with a little more exposure to the gamma camera. That's just in TV and the movies, right??

Otherwise, no changes today. We have the care conference tomorrow and should be able to get everyone on the same page about Mason's care and a plan moving forward.

As we were transporting back and forth today, we passed a couple of families clearly going through some very difficult times. I don't know what their situations were or who they were, but am requesting prayers to be said for them in hopes of easing their pain. Thank you!!

The Early Bird Catches the...Well, Nothing Really

Once again, Mason and I were up pretty darn early this morning. For some reason, if he wakes up when the nurses or CNAs take his blood pressure and temperature at 4am, he thinks its time to play. Unfortunately, at that point, there's only Mama to play with. Try as I might, he refuses to go to sleep, and instead, will stand at the siderail of his crib, wave his hand, and laugh all in an effort to get Mama out of bed. Very cute, but really not fun. This morning, he stayed awake long enough that it was time for another blood draw, and by the time that was over, there was no sleeping for Mama. For Mason, it was another story. At about 7am, he went back to sleep and kept sleeping until about 10:30 or 11. It was actually nice to have some down time for Mama. Our nurse was wonderful and stayed away until Mason woke up. Our doctor was even better and agreed that we no longer need the 4am vitals. So, hopefully, we can get a more complete night of sleep (I know I need it!!)

Other than the events of this morning, today was another low key day. We discouraged the doctors from changing Mason's medications once again in hopes that we can focus solely on his food at this point. Only changing 1 thing at a time seems very instrumental in figuring out what is going right and what is going wrong. Mason tolerated the restarting of his food into his stomach without a problem today. We're hoping this trend continues, but have our back up plans in case it doesn't.

Tomorrow, Mason will begin the prep work for a nuclear medicine study in which they will put some dye into his stomach and then wait and take a chest xray or some other type of scan on Thursday see if they dye has crept into his lungs. This should give us a good idea if aspiration is something we should be worried about and whether or not we need to pursue intestinal feedings.

Also on Thursday, we'll have another care conference to help get all of Mason's doctors on the same page. There are apparently some different opinions about the medications Mason is on, what caused this hospitalization, and where we go from here. As it was last time, it will be good to have all in the same room so that everyone hears the same answers. Bill and I are looking forward to the meeting.

Until tomorrow, hope y'all have a good night. Thank you for the continued thoughts and prayers. We appreciate every one of them!

Same Game, New Players

Today was the day of change for Mason's providers. For some this may seem odd, but for us, its a "normal" part of Mason's hospitalizations. The physicians Mason has worked with change every Monday because they do 7 day coverage - Monday to Sunday. So, we have a new attending pediatrician (someone we've worked with before at another hospitalization) and a new pulmonologist (thankfully, it's Mason's usual lung doctor). Although both have been in the picture before, it still takes them a day, maybe longer, to get caught up on what's been happening. In other words, not much happened today.

Thankfully, Mason did come down on his oxygen need again today. This morning, he only went up to 5L, but was back to 4L by midday. Tonight he's once again down at 2.5L, so we know we're on a good path.

We talked for quite a while to the pediatrician tonight about the tube feeding. Apparently, the surgeon isn't real keen on a feeding tube that goes from the stomach to the intestine, but we haven't been able to really clearly ask why he prefers the tubes that go through the nose into the intestine (which is what Mason had last fall). We have more questions that need to be answered before starting the feeding straight into the intestine. Thus, no tube was placed today. Unfortunately, the IV finally failed early this afternoon. We tried to have another one placed, but after 3 tries and 3 more blown veins, there were no more veins to try -- Mason can't have another IV. So, we're left with 2 options (one of which wasn't really an option) -

1. A PICC line which is a long tube inserted into one of Mason's remaining veins and threads through closer to the heart. This would allow us to continue to give him IV fluids and a spot for the multiple blood draws. The down side is that Mason would have to be sedated for the insertion. This may still be an option tomorrow, but unfortunately, by the time we talked about all of this, the PICC nurses had left for the day.
2. Re-starting the tube feeding into Mason's stomach. If Mason is really aspirating, this is not a good option. He's been making good progress, and this could possibly set him back. There's no good way to tell tonight, so without another viable option, this is what we elected to do.

So, we will continue to watch Mason carefully over the next day or 2. If he worsens, we know the food is the culprit. We are also going to get a "nuclear medicine" study in which we put some radioactive dye in his stomach and take xrays several hours later to see if any of it ended up in his lungs. This can help to confirm or rule out aspiration. As long as all parties agree to the validity of the results of this test, it can help us formulate a long term plan.

Then, once we get the food thing worked out, we'll be able to see how Mason's electrolytes look again. They'll want them stable for at least a couple of days before thinking about sending us home. It looks like we will continue to be here for at least the next several days, if not week. The good news is that hopefully we will get some definitive answers and come up with a long term strategy that will help us get through this winter relatively unscathed. Wishful thinking, maybe, but a girl can dream, can't she?

On the 8th Day, We Rested

Last night, before she left, we asked the attending physician if we could take a break from changing the medications. She agreed that it was a good idea, so for the most part, today was a day of rest.

Mason started off with a higher oxygen need again for some reason, but after a couple of really big diapers, his need started to come down again. We are impressed, though with the amount of fluid he was able to pee off today - a true testament to how much 1 Pampers diaper can hold without leaking for sure. One diaper accumulated about 7 ounces of fluid over a 4 hour period. Quite impressive, I think. I digress, back to the oxygen need...Overnight he was needing 3.5L, then up to 6 when he woke up and now back down to 4. I'm pretty sure we'll be able to turn him down even more shortly.

Mason had 2 lab draws, the first of which didn't wake either of us when it was done via IV at 6am - I was really impressed!! Once again, the chloride level came back low, but not as bad as other days, so we held off on the extra chloride supplement. Unfortunately, when the 2nd lab draw was done (again via IV!!), the chloride level was lower, so likely tomorrow we'll have to restart the arginine chloride to help bring that back up. Generally, though everything else looked better including a decrease in the amount of carbon dioxide Mason is holding in.

Bill and I even had a chance to "rest" and go home for a few hours so that I could re-pack for the next week (we're not sure how much longer we're going to be here) and we could both take a little break. Thankfully, my mom was willing to spend a little extra time with her grandson -- surprising, I know ;-)

Tomorrow we'll be talking about the food issue. Very likely we'll try feeding him into his intestine for a while just to make sure he continues to get better. We'll see how it all works out. Please wish us luck!

The "Devil" Is in the Details

Today started out pretty rough, increased oxygen need, more puffiness, and the IV didn't allow for the blood draw. Turns out Mason's fluid level got too high again, but after a scheduled dose of lasix, Mason peed off between 10 and 11 ounces (yes, ounces) of fluid and started to do much better. Then, for the afternoon blood draw, the IV was willing to give up the blood so we avoided another poke. Hallelujah!! The doctors tweaked his medications (potassium and chloride most notably) a little bit based on his lab results, but no major changes for the day. Mason is doing well right now on 4.5L of oxygen and may be able to get turned down a little more before the night is through. It's looking like we're getting closer to the right recipe for his diuretics and supplements.

We did have to spend Mason's 2nd Halloween in the hospital, but on the bright side, he got a lot more "He's so cute" comments than he would have sitting at home. Mason dressed up this year in a costume that was befitting of his mood today - a little devil. Cutting teeth while being cooped up in a hospital bed for 5 days is probably not the best for a toddler's mood (despite what the pictures may indicate...)

Finally, we've got the devil behind bars!

Mason's mastered the art of waving "Bye Bye" while in the hospital (lots of practice with the number of people coming in/out). Of note, the "cast" on his arm is just keeping the IV safe from little hands getting ahold of the tubing.

Did you know devil's have bat wings? I sure didn't, but man they were cute!

And now back to reality: Tomorrow will probably be a day without major changes. We've asked the doctors to give Mason a break from chasing his labs for a day to see how he does. We know that he typically needs a couple of days to accommodate to a change. Since no major changes today, tomorrow will be his 2nd day. Then, on Monday, we'll start to explore what to do with the food issue.

The only piggies around Mason are his toes...

We made it out of the PICU today! Mason continued to do better throughout the day and was stable on 5-6L of oxygen. He had no coughing all day long. And best of all, his H1N1 (Swine Flu) test came back negative - NO FLU!!! Though we were pretty sure the test would come back negative, we were very relieved to hear the results . With the help of a little tylenol, he was even able to take a little nappy poo (wish I could say the same for me...).

So, the current theory of why things went so badly yesterday is that we did not keep up with his fluid levels. In other words, we did a great job of making sure his labs improved, but in doing so, he did not get enough diuretics. So, the inflammation in his lungs increased and he couldn't move air as much. The coughing, as anyone with asthma could tell us, was related to trying to move air through his lungs. The tighter they are, the less he can breathe, the more he coughs. Thankfully, after a huge dose of steroids, a huge dose of lasix, and a few nebulizer treatments, he was doing much better.

They have not ruled out aspiration (in fact, the lung doctor is still sounding like a broken record), so we are going to continue to keep Mason on IV fluids instead of food for a few more days. One less variable while we are trying to get his diuretics under control. Once the diuretics are under control, we'll talk to the GI folks about whether or not we should try feeding him straight into his intestine like we did last fall so that we can avoid any possible reflux. We need to find out a bunch of information about the ways to do it, but this type of feeding does sound like a definite possibility - either through a nose tube, putting a longer tube through his stomach (where he already has a feeding tube), or placing a new tube straight through is right side into his intestine. The feeding schedule would still be challenging, but if it's what we have to do, it's what we have to do. But like Scarlett O'Hara said, "I can't think about that now. I'll go crazy if I do. I'll think about it tomorrow."

Thanks to everyone for their continued thoughts and prayers. We appreciate them!

Improvement noted...

Just a quick update to let folks know that Mason is doing better. He's back down to 5L and saturating better. He has stopped coughing and is no longer wheezy. He didn't sleep much last night, so is still a little crabby.

We are still awaiting the H1N1 test results, but by the fact that he is better, they don't think he has it, thankfully!!!! We are still in the PICU, but will hopefully be transferred back to the medical floor later today or tomorrow.

Thank you for all of your prayers!

A Really Bad Day

Today didn't go as expected. In fact, it was much worse than expected. I did make it into work for several hours, but then returned to find Mason needing much more oxygen (up to 7L) and coughing a lot. After another chest xray, another set of blood tests, and one giant booger, things didn't get better. There isn't a good explanation from the doctors as to why Mason got worse -- his chest xray didn't show any changes, his chloride level was better, his potassium level was better, but his retained carbon dioxide was much worse. The only change from yesterday to today was the continuous drip feed. Our theory is that since he constantly had food in his stomach, he never got a break to allow the food to move through his system fully. So, either he had continuous aspiration (to build on the pulmonologist's theory) or he never got a chance to rest his system. We can control the aspiration when he gets periodic feeding, but when it's continuous, the medications aren't allowed to work as well and his stomach is never allowed to empty. Doesn't work well for Mason. Unfortunately, it meant things went from bad to worse for him.

The doctors really are very worried about his coughing, the onset of wheezing in his lungs, and his really bad carbon dioxide reading. So, they've done a flu culture (which is where the giant booger comes in) to rule out H1N1 (swine flu). It is possible that all of this could be caused by the flu. We don't believe he has it, but the doctors are being extemely cautious. They have also sent us down to the PICU where we will likely stay until the flu culture comes back negative (we're assuming it will) or until he does much better. It will be at least until Saturday before the flu culture comes back, so we'll just be camping out.

This most recent worsening has been hard to take. If this does turn out to be H1N1, Mason is at a very high risk for the complications related to it. Please send all of your positive energy and say a ton of prayers to help us get through this and help Mason get better.

We hear hooves...couldn't it be zebras?

Well, today started kinda rough and ended just the same. In between was some frustration, some of the usual suspects, and more change.

Mason and I awoke to the folks coming in to draw more blood. Thankfully, this time, they were able to get a bunch on the first poke so they were able to do all of the labs they couldn't get done last night and the ones that were ordered this morning. The electrolyte levels weren't improved as we had hoped, instead, some of the key indicators were still not good (chloride was still low, retained carbon dioxide was higher, and kidney function was worse). Basically, it means that the diuretics are still drying Mason out, but they aren't helping like they should. On a positive note, Mason has a ton of blood (not anemic) and his sodium and potassium levels looked good.

We did not see improvement with Mason's breathing today, unfortunately. It seems that the improvement from the changes over the last couple of days leveled out and without more change, we probably wouldn't see more improvement. So, we added a medication called arginine chloride which should help to "reset" Mason's electrolytes and hopefully enable us to begin making progress again. Apparently, with a low chloride level, the diuretics aren't as effective, so one has to take higher doses, resulting in even lower chloride, and the downward spiral begins. The low chloride and high carbon dioxide retention also mean that Mason's kidneys have to work extra hard and are at risk for damage if the situation doesn't get better. So, hopefully the arginine chloride will help things get better so that we can avoid damage to the kidneys. Mason just finished his day with yet another blood draw to see whether or not the arginine chloride worked. We will know more in the morning.

We continued our conversation with the doctors today about how/why all of this happened after a really good few months. We had several theories, but the pulmonologist has settled on the same as before - aspiration. He thinks that in all likelihood, despite the surgery last December, Mason's lungs are still getting damaged by food slipping into his lungs by reflux. He's still of the mindset "if you hear hooves, think horses, not zebras." We're not convinced it's the same "horses" and want to keep looking for the "zebras," but need to go through the steps to rule out that Mason has "silent aspirations" in which a little bit of food might be slipping into his lungs without any of us really knowing for sure. The running idea is that some of the food goes back up his esophagus when his stomach gets too full. To test this theory, we have been advised to change to continuous drip feedings. This means that Mason will be hooked up to a feeding tube and feeding pump 22 hours per day. With smaller amounts in his stomach at all times, hopefully there won't be that overflow reflux into his esophagus. The pulmonologist has asked us to do this for at least a week to see if it makes a difference. So, we started tonight.

To say continuous drip feedings will be a challenge is an understatement. As a developing toddler, Mason is just learning that he is able to explore his environment. He has learned to cruise and crawl around his oxygen tube for the most part, but we need to keep fairly constant watch to make sure that it doesn't get caught up on something and he gets hung up by his nose (I gotta say it's kinda funny at times...I know, bad Mama!!). He is a little more challenged by the oxygen sensor since it's a shorter wire, but most of the time we disconnect it while he's up and walking since it doesn't read right while he's standing anyway. Now, with the addition of the feeding tube, we'll have a bigger challenge making sure nothing gets pulled. We have learned the hard way that if the feeding tube gets pulled hard enough, the "button" (the tube that actually goes into his stomach) can get pulled out - and that's no fun for anyone. As with everything we have gone through, this will be a challenge we will meet. We will figure out how to make it work. As always, we will do whatever it takes to keep Mason safe while his little lungs have a chance to grow.

For those of you who are the praying sort, please say an extra prayer for Bill and I to have patience when we feel like we're hearing a broken record and to have the creativity to figure out how to make the continuous drip feeding work. Please also say a prayer for Mason to have the flexibility to learn how to play and explore his environment with 1 more tube.

"Double, Double Toil and Trouble"

Either Mason has turned into a chemistry set, the doctors are making a really good stew, or its Halloween and the witches are mixing their brew.

Mason has been doing well today, with a decrease in oxygen to 4L (down from 5) yesterday. His energy continues improve as well. We spent much of the day trying to understand all of the moving pieces of Mason's electrolytes and his diuretics. His labs came back this morning with a decrease in potassium and chloride, but an increase in the amount of carbon dioxide he is holding in. Basically, this means that the diuretics are working extremely well, and now we need to bring his body back into balance.

So, the doctors are adding more potassium chloride and more lasix, but stopping the other diuretic. The hope is that between all of the changes, we'll find the right balance and get Mason's lab values back to normal.

We will continue our discussion with the doctor about what caused all of this, but once again may not get a clear answer. There are still more blood draws to be done, more tests that can help paint the picture of how we got here, and more decisions to be made.

Thanks for all of your thoughts and prayers. Mason's improvement is evidence of all of those efforts!

Seeing the Lytes

Day 2 brought Mason some improvement and a bunch of "hurry up and wait" -- well at least for us; the doctors have been very busy. The doctors have been busy talking to each other and trying to figure out what to do next. The theory is that his diuretics are not keeping up with his need and we can't increase the diuretics because they are causing his electrolytes to be out of whack. So, the attending pediatrician has talked with the lung doctor and the kidney doctor who has talked with another kidney doctor and a heart doctor. Did you follow that? Basically, everyone is talking which is always a good thing for Mason.

So, here's the plan (brace yourselves, we're going technical):

Switch from sodium chloride to potassium chloride (done last night)
Decrease the diuril and start a regular dose of lasix with the intent of replacing diuril with lasix (switching 1 diuretic for another).
Monitor electrolytes daily to make sure that all of these changes are safe - to do this we either have to have daily blood draws or hopefully they can start and IV from which they can draw blood.

While this may not seem like it's that big of a change (basically switching medications that do the same thing), it is actually kinda scary for us. Mason has always been very reactive to minor changes in his medications and changing from 1 diuretic to another is actually a very big change. We are nervous that it might be too big of a change, but hopeful that it will help him get better. The doctors and nurses are monitoring him constantly and we are always with him. We know he will be safe during these changes, just need to have faith that it is the right answer.

Please pray that this transition will be "easy" for Mason and that it is the right answer.

Groundhog's Day

It feels like we're in the movie. You know, the one with Bill Murray - the one in which he relives the same day over and over and over again. Well, that's where it seems we are.

Sorry I haven't posted in such a long time. We've been struggling with Mason's breathing since the last post on his 18 month birthday.

Lungs:
When last I wrote, we had just started a course of antibiotics for Mason's 2nd aspiration pneumonia. Unfortunately, that only worked while he was on the antiobiotic; a couple of days after the last dose, he was on his way to needing more oxygen again. So, we started a steroid burst (a huge increase in his normal dose with a drastic, quick decrease back to his normal dose). Again, it was effective while he was on the burst, but unfortunately, a couple of days after his last dose, his oxygen need went up again. We repeated the burst, with the same effect. Then, last week we tried a lasix injection (high powered diuretic to help decrease the amount of fluid on his lungs). Unfortunately, once again, this only helped temporarily. So, after a very rough night last night on a whole lot more oxygen (4.5L vs. his normal 1.5L while sleeping), we are back in the hospital hoping that the medical minds that have helped in the past can do it once again and help Mason get back to being "healthy."

Eating:
The good news of the last month is that we have a handle on Mason's spitting up (for now, anyway). We had a visit with the GI doctor at the end of September and ended up changing Mason's medications. With a significant increase in one and the addition of another, Mason has all but stopped spitting up. We are very thankful for this improvement as the aspiration from spitting up was what got us into this mess to begin with! Mason is tolerating his food much better and we're cleaning up fewer messes (can't beat that!).

Kidneys:
We had our first visit with Mason's nephrologist (kidney doctor) last week. We have known all along that Mason has needed to be on diuretics so that his lungs don't fill with fluid, and have known that long term use of diuretics is not without risk. Apparently, the doctors just wanted to do a little more looking at whether or not now was the right time to make changes because his chloride levels (one of the electrolytes in the body) have consistently been low over the last year and his carbon dioxide level has consistently been high -- 2 bad things for the kidneys. We want to make sure he gets what he needs, but not permanently damage the kidneys in the process. Always weighing the pros and the cons of everything we do for Mason.

Anyway, I'm pretty sure our appointment was only supposed to last 30 minutes at most, but we ended up spending 2 hours with the doctor. She gave us a ton of information that took quite a while to think through and we still have a lot of questions about what is the right thing to do and when.

We are hoping that during this hospital stay we can get a care conference together so that all of Mason's specialists can work together to come up with a plan that is safe and effective for him. It seems that they don't want to increase steroids, they don't want to increase diuretics, but he needs both of them (and in larger quantities as he gets bigger), so they just need to figure out what is the right thing to do (i.e. the one that will have the fewest consequences and the biggest benefit!!)

Hospitalization:
So, bringing us back to today -- it sure does feel like we were in the same place last year -- troubles with spitting up, reflux causing increased breathing problems, weighing the pros and cons of medications, wondering if Mason's going to need surgery again (at this point, hopefully not). We're either living out Groundhog's day or living like broken records...

Mason's set to have blood drawn and a chest xray today. Hopefully we will be closer to answers about how to help him by later this evening or tomorrow. I'll keep you posted.