This Sucks! *warning, uncensored thoughts and feelings from a worn out Mama

Sorry, no catchy title, no sugar coating, no positive spin. This just plain sucks! Mason is still going through pretty significant withdrawals causing him to be agitated most of the time he is awake. He did have a bit of time today when he was once again up in the chair and was somewhat interactive, but otherwise, we've kept him down with drugs. Unfortunately, it's a Catch 22 - the more boluses of Versed and Fentanyl we give to help keep him comfortable, the long lasting the withdrawal will be. This sucks! We did gain a little understanding from the attending physician today that helps us to know what to expect and what we're in for. We can expect this to last anywhere from a week to a few weeks depending on Mason (you know, the guy who makes his own rules...) and it's going to be very difficult for us to watch. It is very hard to not be able to take away his discomfort, to have to restrain his arms so that he doesn't pull on his trach stuff, to know that restraining him pisses him off even more, and to jump to our feet every time he wakes up to try to soothe him with empty words, his pacifier, or his wet washcloth. This sucks! Amazingly, it is not difficult to see the glassed over look in his eyes, after all, he is in a drug induced stupor. In fact, it's a little comforting knowing that he's too gorked out to remember this in the long run. Sometimes I wish I could have what he's having just so that I don't have to remember.

I have to remind myself that there is some good in all of this.

• Mason is much more stable now than he was a few weeks ago. He is actually now making progress instead of getting worse and worse. I now look forward to tomorrow almost knowing that we are getting closer to the day when he's better instead of dreading what will happen.
• We have been able to work through the first couple of days in this detox journey with the doctor who helped us make some decisions during Mason's first week in the PICU. We are so lucky to have her here when we most need her.
• Bill and I have an incredible support network of friends, family, and caregivers around here who are helping to take care of us when we have so little to do it ourselves. We have dinners coming nearly every night, I have a bunch of donated vacation hours so that I don't have to stress about going to work, but can if I need a "break." Things at work are once again being taken care of for me so that I don't have to think about it if I don't want to. Nurses, doctors, and respiratory therapists with whom we have worked regularly check in on us to see how Mason is doing and how we are holding up.
• Most of all, there is an incredible amount of praying going on for Mason. I truly believe that this is what is keeping him going - I know it's what keeps me going!

Yes, this totally sucks, but thankfully, there are tangible things I can think about to help lift my spirits and keep me from dwelling on the totally sucky part!

Wakey, Wakey, Just a Little Shakey

Last night was a rough night, and I'm not sure tonight will be any better. Withdrawals are tough and not having enough sedative on board makes it tougher. Mason was up most of the night last night a movin' and a shakin' nearly every hour. Clearly the paralytics were not working, and unfortunately, the sedative dose was not sufficient to help him stay relaxed. So, today, we talked to the doctors about cutting out the paralytic all together and figuring out a way that he can be a little more relaxed. So, without further ado, Mason's paralytic was turned off at about 2:30 pm today. Starting at about 3 pm, he woke up. Overall, he's been doing well, but has had a couple of times when he became really agitated and has desaturated into the 60's. He has needed 100% oxygen since waking up because of those times when he becomes agitated. Thankfully, when he is calm and sedated, he saturates in the mid to high 80's and appears very comfortable. We have needed to give him boluses of Versed nearly every hour to help him stay comfortable as his tolerance lasts about that long. After resting for a bit, though, he is ready to go again. So, after lying down and being paralyzed for 3 weeks, Mason was finally sitting up with support and able to read a book with Staramama, watch TV with Mama and Papa, and visit with the people around him. I even was able to hold him for about an hour during one of his sedative induced breaks (it was quite the sight to see, Mama propped up by pillows in the crib holding a very tuckered out and drugged Mason).

We talked with the doctors quite a bit today about his sedative levels and he is going to go up on his Neurontin in hopes that the sleepiness side effect will help Mason to get through some of his withdrawal and getting used to the trach. If it doesn't help immediately, it should be an interesting night with lots of wakeful spells and hopefully an hour or so break every now and then for a little sleep. I gotta say, though, ITS TOTALLY WORTH IT!!!!

Sucking on that wet towel during one of his awake times.

And We're Withdrawing...

Really, today was just about like any other day, but did show some evidence of drug withdrawal. He had some ups, some downs, more time off the paralytic, and a fever that continues to come and go.

It appears that one of the cultures from Mason's lungs has started growing a bug. It is a bug that he has grown before (pseudomonas) and is susceptible to the antibiotic that he's on. It's possible that more or different bacteria will grow in the cultures that are still out, but at least for now we have something to fight. Mason's going to be on the antibiotic for at least 7 days which will hopefully help his fight.

Mason continues to need more oxygen than they'd like him to be on, but that, too ebbs and flows. Generally, he's needing somewhere in the 70's for oxygen concentration and holds his saturations in the 80's. There was a time when he was on 49% oxygen shortly before the fevers started, so I'm hopeful that after we kick this infection, he'll be able to resume needing less oxygen.

Today's paralytic holiday went fairly well for about an hour. Unfortunately, Mason's withdrawal from his narcotics has made him a little more agitated, so he's grabbing at whatever he can find when he reaches his limit. We could tell today he really wanted to rest after being awake for a while, but unfortunately, his agitation would not let him. So, we ended up giving him a bolus of the sedative to calm him down. I'm not sure if it was the sound of the pump starting to push it in or if the drug really hit him that fast, but it seemed right after the nurse hit go, Mason settled down and was able to rest. It would be really nice if we could keep him really sedated while he's off of his paralytic because he really saturates much better. Guess it's just more trial and error. What was really nice to see during his time off of the paralytic today was that he was able to "cough" up some of the goo in his lungs. Yet another reinforcement that we really need to find a way to allow him to be able to move.

The attending intensivist came in toward the end of the day today to give a "week in review" type of assessment. Basically, the gist of the conversation was that although he hasn't progressed off of the paralytics like they would have liked, they are seeing baby steps of progress in terms of his stability, his sedation, and his tolerance for food in his gut. I reiterated with him that Mason has always taught and re-taught the lesson of patience. Unfortunately, my memory is short and I must keep learning. Good thing his a persistent teacher.

Ooey, Gooey, and Gone (for that moment, anyway)

Overall, I'd say that today was a relatively good day. Mason's right lung looked better on xray, the fever he'd spiked again last night seemed to have subsided again, and he decided at about 9:40 that it was time to wake up (the paralytics had not even been turned off yet). Once again, his paralytic holiday started off rough, but went well for quite a while. The pulmonologist came down and did another broncoscopy to get a better look at Mason's airways while he was breathing on his own. Not surprisingly, he did find that Mason does collapse his airway a little bit when he breathes, but thankfully, not too badly. Soon after entering Mason's airway, the scope came upon some ooey, gooey, slimy gunk. It was likely part of the reason that Mason's needed a bit more oxygen over the last couple of days and might be an indication of what's causing his fevers. The gunk was so bad that it actually clogged up the scope a couple of different times when the pulmonologist tried to suction it out. Really gross! Thankfully, between the scope suction and the regular suction, they got most of it out and Mason's saturations went up a bit.

The rest of the day, Mason has been bouncing back and forth between asleep and awake. Randomly, he will open his eyes and freak out just a little bit. Fortunately, he does calm to my voice reassuring him that everything's ok. He's still on the paralytic, but they've cut his Fentanyl in half to begin his wean off of the narcotic. Last night, they started him on a new medication that will help his wean off of the narcotic and sedatives as they move to waking him up - Neurontin. It is a non-narcotic pain medication that works in a different way, but still causes some sleepiness so that he will have some sedative effect. Hopefully, with the addition of this and the methadone and ativan, he can get off of the IV drips and continue his progress toward waking up and getting slowly better.

I think Mason will have his first trach tube change tomorrow. It will be a true test of how well his surgical site has healed and how secure his new airway really is. I am hoping for good healing over the last 10 days so that we can begin to challenge him more off of the paralytic. It would be great to allow him to stay awake as much as he wants instead of how much we are willing to have him awake. More awake means a whole bunch of things for him including processing food better, maybe less sedation medication, and another baby step toward that day way off in the future when we can think about returning home.

Professor Mason - School Is In Session

Hmmm...I'm trying to think of a catchy title for today's events, but it's hard to categorize. Maybe it will come to be as I write.

I awoke to Mason doing fairly well lying on his left side, 65% oxygen concentration, 85% saturation. Pretty good. His fever had broken in the night and his temperature was staying in the 98 degree range. Rounds were fairly uneventful other than his right lung was less inflated and generally didn't look happy on xray. Crap! We planned on doing the paralytic holiday after 10 and planned on today being a relatively ok day. Well, that's what we get for planning!

Mason had other ideas. His lungs decided to act up a bit again after being on his left side for a couple of hours (they change his position every 2 hours to avoid getting bed sores). His saturations went down and despite ventilator changes, a position change, and some suctioning, they stayed down in the high 70's/low 80's for a couple of hours. After about an hour and a half, Mason decided to move a bit (despite being on the paralytics) and evidently loosened up whatever mucus plug was limiting his oxygen flow. The suctioning after his little dance did produce some gunk that we were able to remove. Unfortunately, the more he stays down, the more mucus plugs will happen. I just hope we are able to get them each time so that he can continue to get better overall and we don't see his lungs deflate again. Tomorrow, they are going to repeat the brochoscopy, this time while he is off of the paralytic, to see how his lungs do when he's breathing on his own.

Oh, I forgot, there was a big change discussed during rounds. Once again, Mason's blood count was down so he got another transfusion. It was clear that the low blood count was affecting him because between that and the removal of the mucus plug, he returned to his current "normal" and was ready for a paralytic holiday again around 4 pm. Once again, he did well with the holiday and was able to breathe on his own with the CPAP support from the ventilator. He did not saturate quite as well as previous times, but did not work as hard either. He did end up pooping himself out after a couple of hours and fell asleep without the paralytics on board. While relaxed and asleep, he did even better and maintained his saturations in the mid 80's. Unfortunately, Mama had a bright idea that would surely help his saturations improve -- get him in a better position so that there wouldn't be such a big leak in his trach (in certain positions, air leaks around the tube itself, so it is less efficient). Real bright idea!! It ended up that I startled him, woke him up, and sent him into a small panic over what was happening. When that happens, he starts fighting the vent and doesn't breathe as well. Luckily, we were able to re-sedate him and re-paralyze him so that his breathing evened out and he could fall back asleep. Real bright idea, Mama!! Ok, Mason, lesson learned. I promise I won't disturb the sleeping baby again!!

All in all, he did well with the holiday, but must have moved around some of those mucus plugs again. We're ending the day similar to how it started, but I'm encouraged by the fact that he was able to pull himself out of it this morning with a little shimmy. I've got it...lessons learned: silly Mama, don't make plans without including Mason, don't poke the sleeping baby, and above all, keep moving!

Just Call Me Spike

Well, Crap! One of the common problems associated with spending lots of time in the hospital, spending lots of time in the ICU specifically, and having lots of invasive interventions (PICC lines, ventilator, IVs, surgery) is an infection. Looks like Mason's become common. Last night after his evening drug holiday, the nurse took his temperature and it was elevated. He responded well to Tylenol and/or ibuprofen for a bit, but now, no improvement that we can see. He is now at 101.7 degrees, up from the 100.4 it was last night. Crap! They've put him on IV antibiotics just in case, they're running every kind of infection culture they can think of, and once again have the nurses and doctors wearing gowns, gloves, and masks (we'd stopped using the masks about a week and a half ago since he's no longer breathing the same air). So far, we cannot tell what his little body is fighting, but it looks from the blood counts that it is bacterial (specific types of his blood cells are elevated). Crap!

Despite this, he has done fairly well on his drug holidays. Last night's lasted a couple of hours with him being awake for about an hour and today's lasted about 3 hours with about an hour and 15 minutes of awake time. Each time it takes a bit for him to regain his coordination, but each time he becomes a little more coordinated than the time before. Mama is getting a little more used to them as well; I now consider him to be taking long naps in between. Maybe reality, maybe fooling myself, but hey, it works!

Mason's oxygen need has been up, down, and all around. He has times when he's back down to 65%, then times when he needs 85% or so when not on his holidays. It does seem to be related to position as well as how he is feeling otherwise. Now that he's fighting this wretched infection, he needs a little more oxygen. Is this, once again, another lesson in patience? Seriously, child, I'm pretty sure there are easier ways to teach your parents lessons!!! I remain hopeful that the antibiotics will kick in soon and Mason will begin to feel better.

Before I sign off, I do want to make sure Mason has the opportunity to say HAPPY 60th BIRTHDAY, STARAMAMA!!!

Drug Holiday Take 2

Today we had another attempt at "drug holiday." It took Mason about an hour to wake up this time, but when he did, things got moving. He was able to focus on both Bill and I at different times and was able to put his washcloth in his mouth much better than yesterday. Now, I know, I said last night that we weren't going to offer a wet washcloth to Mason the next time, but we really didn't have a choice. Soon after he awoke, he reached over for his drool rag and wanted to suck on it like his regular wet washcloth. So, we gave in and got it wet for him. He did a great job avoiding the trach this time and didn't knock off the ventilator until the very end of the 2 hour holiday. He was able to soothe himself for most of the time, but when he'd had enough, he'd had enough and it was time to put him back on the paralytic.

They have ordered these "drug holiday's" twice a day. While it's really good for Mason physically, it's really hard on Mama emotionally. It is great to see my little man's eyes, see him recognize me, see him doing his usual tries at self soothing. It is heart wrenching to see him struggle to figure out what's going on and then to see him go back to sleep again. I pray for the day when he can fully wake up, not have to struggle to figure out what's going on, and continue down his path of recovery.

Well, I'd better sign off. Drug Holiday #3 has just begun. I expect I'll be saying "Hi" to my little guy soon.

Meal Baby Sign Ups

Good Morning Friends & Family,

This is Erin wanting to give you an update on the Meal Baby website. It came to my attention last night that there was an error made in the email invites which delayed the site going out to people. The error should be corrected now! If you still have not received the link or would like to, please email me. Christi attached my email on the right side of this blog.

So many have already signed up but there are still MANY open nights. So please take a peek and sign up today!

Thank you to you all for your incredible support and generosity!!

Erin

A Valiant Effort

I apologize in advance, but I am not going to do justice to what happened today. I'm still trying to figure it out in my mind and thinking maybe putting down on the blog will help sort it out. Please don't misunderstand, Mason's doing fine, we just had, well, an odd end to the attempt to take him off of the paralytics. A lot of things happened all at once that are challenging to sort out. I'll try to start at the beginning, after all, according to Julie Andrews, its a very good place to start.

So, this morning during rounds, the attending physician was really pleased with the fact that Mason did so well yesterday and through the night. She thought that with the addition of the Clonidine patch, Mason was ready to try to be off of the paralytics for a bit today. Even if he was off for an hour, it would be so good for his body to be able to move some - it would help move fluid, move things through his gut, and keep his joints mobile. We all agreed, it would be good to try, but if it didn't work at anytime, to make sure we protect his new trach site and get him back on the paralytics immediately.

So, after Mama delayed to go home for a bit, the lunch hour came and went, and we were finally all ready, we stopped Mason's paralytics at about 2:10 pm. He started waking up fairly quickly and twitching around as the paralytic wore off. The first thing I noticed was that he stopped drooling - I realize this is kinda weird as a first thing to notice, but you've got to realize, he's had a river of drool despite frequent mouth suctioning because of his paralysis. I was so excited that he could swallow on his own! Mason held Mama's hand while he tried to wake up and figure out what was going on. He never needed his oxygen turned up from 73% and saturated in the high 80's and low 90's. His endurance was quite limited and he fell back asleep after about 10 minutes with the help of a little more sedative. About 5 minutes later, he decided it was time to wake up again. He started twitching again, opening his eyes a little further than the last time and again wanted to hold my hand. His left arm was waving about trying to grab hold of something. After a bit, it was Papa's hand he settled on and did well for another little bit.

About 45 minutes or so after turning off the paralytics, he continued to do the same thing, so Mama and Papa thought we'd try to help soothe him with a pacifier and a wet washcloth (his security blanket). Not a good idea! Mason, in his return to his own independence, got ticked that he couldn't hold the pacifier in or bring the washcloth to his mouth because the suction thing on his ventilator tube was in his way. Mason got ticked and started fighting against the vent helping him breathe and wanted to grab at the suction thing to move it out of the way. Unfortunately, fighting against the ventilator was not helping his cause so the respiratory therapist (RT) came in and turned his oxygen up to 100% (though, he never actually desaturated below the mid 80's) and began to change the settings on the ventilator to make him more comfortable. The RT was able to allow Mason to breathe on his own with a little CPAP support and he was able to maintain his saturations in the mid 80's. When the doctor came in, she was impressed at how strong Mason was (3 of us were fighting his arms to keep the ventilator on the trach) and how well he was doing with only CPAP support. He was working hard to breathe, but maintatining his saturations. The doctor commented on the fact that he was so strong despite being "paralyzed" and sedated for 2.5 weeks. What a fighter!

As we were holding Mason's arms down while the nurse was trying to restart the paralytics, Bill noticed what looked like a blister in Mason's left armpit. Once we turned on the lights (Mason does much better in a dark and quiet environment), we saw that he had 3 large popped blisters and some redness in his armpit, apparently from rubbing against something. We don't know how long this has been there, but are quite certain it was from the dressings around the PICC line in his arm. No wonder he didn't like to be on his sides - either way there would be rubbing of the blisters. So, we urgently called the PICC nurse to come and re-dress the area. It now has no adhesive on it, and is wrapped in gauze instead.

So, at the same time, I'm proud of my little guy and ticked off at the person who wrapped his PICC line and caused his blistering. A rush of emotion from concern for how he was going to do off of the paralytic, excitement that he managed his oxygen saturations without the ventilator settings, heart breaking sympathy for his struggle and pleading eyes while he's not being able to cry because of the trach, fierce anger for the person who hurt my little man when he's already got enough to deal with, and amazement at how well he tolerated his unscheduled "sprint" off of the ventilator. All of that took about an hour and a half. Man, I need a drink!!

Despite all of it, Mason is still doing well. He's saturating at 95% on 70% oxygen, and resting comfortably. I am so proud of my little man's valiant effort!

Post-Trach Day 3

I am happy and proud to say that Mason had a "good" day today. He has been at 62% oxygen concentration all day and has been saturating in the mid 80s to low 90s most of the day. He took another dip in saturations right around the nursing shift change, but has still been holding fairly steady.

Events of the day: Mason finally got his neck line out today without problem - other than he was quite ticked at the nurse, he got a second PICC line to help with all of his IV medications, and we started yet another medication by way of a patch - Clonidine, a sedative. The idea of the patch is to give Mason a much more steady dose of sedative throughout the day so that he didn't have all the ups and downs with the bursts of sedative that they had to give with all activities. He seems to be tolerating it well and hasn't had as many wakeful spells since starting it.

The best news of the day is that when he does have his times of trying to "wake up" despite the onslaught of medications, he is not desaturating as much. No more "death spells" - yes, that's what they called the major desaturations that Mason had when he would wake and desaturate to the 40% or 20%. We are very thankful for every ounce of progress!

Finally, thank you to Anne and Erin for putting together the MealBaby website (see the post below for details). We are so thankful for and humbled by all the help we have received.

Help Support Mason's Mama & Papa

Hello Friends and Family of the Robert's Family,

This is not Christi's normal post. We (Erin and Anne) are friends of Christi and Bill's and are helping to coordinate the BEST meal sign up EVER in the history of meal sign ups!!! Please help us in our endeavor.

If you have been following this blog then you know all too well the challenges our dear family faces and that they are looking down the road at a VERY long hospital stay. They have very limited capacity to prepare or store food (practically none). And I am sure we all know how tiresome take out and cafeteria food can get - not to mention expensive.

Therefore, Anne and I have created a website at www.mealbaby.com to ease in the signing up and coordination of bringing meals to Christi and Bill. It has all the information you will need. However, the website can only be accessed by invite only. We have already sent out the email to as many people as we could find addresses for. BUT, if you are someone who reads this blog, would like to help, and has not received a Meal Baby email already, please email Erin at: chadanderinvk@msn.com.

Please include your email in the note and any questions you might have. Anne Zymcowitz is also available for any questions/concerns at anneripley@hotmail.com

We thank you SO very much for your generosity and ongoing support of Christi, Bill, and Mason!!

Sincerely,

Erin & Anne

The Next Phase of Our Lives

We started the next phase of our lives today with the beginning of our training in how to take care of Mason's trach tube and site. In about an hour and a half, we learned how to take a tube out, put one in, put on the "ties" to keep it in place, suction him, and help him breathe with a bag if necessary. We were reminded that he won't be able to cry, so we have to listen for the ventilator alarm going off to tell us if something isn't going well. We were informed that some kids are sneaky and pop their trachs out to get attention - I told them "Mason won't do that!" At least I hope not!! Really, it's not that much more involved than what we were doing before, just different. Plus, we have a long while to learn how to do it all. We'll get the hang of it fairly quickly, I think.

Mason had a fairly good day with continued sedation and paralytics. He was able to wean down on the oxygen to about 67% at one point, then has needed to go up and down based on his position and how much we do with him (sponge bath, diaper changes, etc). They are wanting to keep him sedated and paralyzed a little longer so that the trach site has a chance to heal a little bit before messing with things. We think it's a pretty good plan. Really, the only real change today was the removal of the heart pressure probe. Since being in the catheterization lab nearly 1 1/2 weeks ago, Mason's had a pressure probe in his heart (via his neck). While it is a risk to keep it in this long, it has given us good information about Mason's desaturations and his response to the heart medications. They have left the sheath through which the probe was placed, but that will be removed tomorrow. Slow and steady with the changes.

Mason has also begun another phase of his life - detoxification. Because he's been on heavy sedatives and a good narcotic for the last 2 weeks, he is going to need a little help weaning off. He was started on Methadone and Ativan today in hopes that he will be able to wean safely off of his Fentanyl, Versed, and Dexmedetomadine. Hopefully we'll be able to do it without any withdrawal symptoms.

Overall, I don't expect major changes over the next few days. Some of the doctors are a little more ambitious about working on waking Mason up and some are more conservative. He's shown us that he does still desaturate when he is not paralyzed or heavily sedated, but not anywhere close to how bad it was before he was intubated or before the trach. With some time and some adjustment, I think he'll be able to get used to the tube and figure out how to swallow and move in this next phase of his life.

A Day of Rest

Mason did pretty well throughout the night, but did keep his nurse on her toes. He tried really hard to spike a fever and kept his heart rate high, but both are to be expected after a surgery. They continued to keep him sedated and paralyzed last night to allow his little body to rest. Mama and Papa tried to rest, too, but well, let's just say it's difficult when the little guy is being monitored so closely. I'm sure the nurse was entertained as we tossed and turned on the skinnier than a twin bed or on the lined up chairs with a pad over the top - surprisingly, it wasn't that uncomfortable. When the anesthesiologist came in to check Mason this morning, he was startled when I sat up on the lined up chairs - I think "Hey, there's a mom right there" were his exact words.

We are very thankful for the wisdom of Mason's team of doctors. All were in agreement that this should be a day of rest. They did try to wean down on his diuretics, but then after he started to get a little puffy, went back up. Otherwise, he got the foam around his new trach changed and got to sleep all day long. He continues to "wake up" every once in a while and doesn't really like where he is. He desaturated each time he did wake up, but no where near the level he did last week. For this, we are extremely thankful. We are likely going to give him a few more days' rest before challenging him by trying taking off the paralytics. The doctors don't want to take the risk of anything happening to the new trach before it has a chance to start healing. So, the prayer for the next several days: Please let Mason's days and nights be boring so that his body can heal as it needs to!!

Until the next post, I think I'm pretty much going to spend my time staring at my son's face and getting used to the unobstructed features. I know it's an odd statement, but I need to re-learn all the features of my 22 month old son's face. I almost don't recognize him. I am amazed at how much a nasal canula can change how he really looks.

He's Out

Mason made it out of surgery successfully.  It's wonderful to see his face again!  Things will still be precarious as he recovers.  Please continue to pray that he continues to improve.

He's In

We gave our kisses and made Mason promise to be good.  He's in surgery now.  Should take an hour or so.  I will keep you posted as we hear. 

Here We Go

Just got word that Mason will be heading to surgery within the hour.  Please keep him in your prayers over the next couple of hours as he undergoes this risky procedure.  Please pray that the surgeons and anesthesiologists work together well to keep him safe as they remove one airway and replace it with the other.

We're On. No, We're Off. No, We're On Again

Holy cow! It was hard to keep up with the changing of the wind today, but I am happy to say that we ended the day with the same plan as yesterday. You see, we're used to having new players in this game week after week. We're used to people having their own perspective and changing how the game is played. But, when it comes to a plan when the previous players are so adamant that it needs to happen, please do not change it!

Ok, I'll stop being vague. This morning, during rounds, the team once again discussed Mason's heart issue, his response to the medications, and his "readiness" for surgery. The attending pediatrician (intensivist) was still pretty reluctant to ok Mason for the surgery tomorrow. He said he needed to talk to the ENT (ear nose and throat doctor) who was going to do the surgery. Then, the ENT resident came in to get the surgery consent form signed and said that he usually defers to the intensivist if they don't think a patient is ready for surgery. CRAP!! Soon after, the intensivist came back into the room and said he did not think it would be wise to do the surgery and that waiting until Friday would give him (the doctor) a chance to help Mason get even better. Seriously? What was he going to be able to do that the others could not in the 10 days since Mason was intubated AND why hadn't they done those things before???? Just a couple of questions going through our minds. He did leave a little window for someone to change his mind and said he was going to have a meeting of the minds with the ENT surgeon who would be performing the surgery, the cardiologists, the cardiac anesthesiologist, and the other anesthesiologist to discuss Mason's readiness for surgery and the risks. I'm not exactly sure what happened in that meeting, but from what I gather, the WONDERFUL cardiologist who was on last week came back and weighed in on the discussion and someone asked the intensivist the same questions we had above. When he couldn't come up with a satisfactory answer, he changed his mind and decided that doing the surgery tomorrow is the right plan.

Now, please understand, there is a HUGE risk in doing the surgery tomorrow. Mason is "critically stable," he is not stable by any means. The airway created with the surgery is not as reliable or secure and has a huge risk of problem should it become blocked or dislodged in any way. The tracheostomy and tracheostomy tube are not going to fix Mason. They are not going to help him get off of the ventilator any time in the near future. The reason we are pushing so hard for doing this now is because maybe, just maybe he will tolerate the tube in his neck better than the tube in his mouth. Maybe, just maybe, he will be able to be more awake and not need the paralytics after he heals from the surgery. If is able to be weaned off of the paralytics, maybe, just maybe he will be able to move around some; he will be able to move his joints; he will be able to move fluid out so that he doesn't stay so swollen; he will be able to move his gut so that he doesn't need to continue to be on "Colon Blow"; he will be able to cough so that mucus doesn't get stuck in his airway and continue to deflate the upper lobe of his right lung. Maybe, just maybe he will have a chance to survive this hospitalization and be able to come home again someday.

As far as Mason today, he had a fairly good day again. I was so amazed and excited to wake up this morning and see his saturations in the 90's on an oxygen concentration of 70%. I haven't seen that in I can't remember how long! It was so wonderful!! His pulmonary pressures continued to be high and even raised after they weaned the Nitric Oxide down to 2. He doesn't seem to mind from a saturation perspective, but his heart is having to work harder. They have also realized that his heart is not being as efficient as it should and some of the distention of his belly is because his heart is not pumping enough to get the fluid up his large abdominal vein (inferior vena cava) and out of his system. So, they have given him a new medication to help - for you health care types, it's Milrinone. We are hopeful that this will help to let his belly come back to normal size and he can start to feel a little bit better. As far as the inner belly stuff goes, well, that's about it...he's still going. For a guy who hasn't eaten through his stomach in about 5 days, he sure has a lot of poop!

One last thing I want to mention tonight. I feel blessed! I have an amazing husband who is also a wonderful father, nurse, doctor, respiratory therapist, and champion booger getter. I have an incredible family who supports me in everything I do. And I have extraordinary friends who are doing so much to help me get through this every day. You all know me so well and are taking care of me despite my stubbornness and attempts at fierce independence. I am so grateful for all the love and support you all are showing. Thank you!

Calm In the Storm

As we make our way toward Wednesday to hopefully have a successful tracheostomy surgery, we are so thankful for days when really nothing happens. It doesn't make for interesting reading, but it makes for calm in our storm.

We were able to wean Mason's nitric oxide to 3 today with so so results. As he continues to get the GoLytely (aka Colon Blow), he is moving stuff through his stomach so fast that it is possible his medications are not getting fully absorbed. As such, he may not tolerate weaning the nitric as well as he would otherwise. The PICU doctors are really pushing for getting off of the nitric oxide before surgery, but the cardiologists agree that if he needs it, he needs it. Until he becomes truly "stable" and we see what his pulmonary hypertension does while stable, we cannot know whether or not he can be off of the nitric.

Once again, until about 5:00 this evening, he did well with a wean on his oxygen concentration to 65%. His need for more or less oxygen varies throughout the day, and it seems that right around 6am and 5 pm, he needs more consistently. Not sure what the differences are, but we'll continue to pay attention and see if we can help him be more steady.

I actually felt secure enough in Mason's stability to return to work for some of the day today - make-up on and everything. It's hard to believe that life continues to go on outside of our little PICU room, but somehow it does. I remember feeling this way when I was on bedrest and when Mason was in the hospital. How quickly we become consumed with our own lives! While it was nice to get away from here and return to that "real world" for a bit, it was really hard to concentrate on anything other than wondering how Mason was doing and wondering if today was going to be a "good" day for him. I was so thankful to find out that it was in fact a "good" day. Please pray with me that he has a good night, a good day tomorrow, and that surgery happens as scheduled and is successful!!

Did Someone Say Poop?

Today was another stable day, at least until about 5:00. Mason did fairly well and he was able to wean down on some of his settings of the ventilator and the nitric oxide as well as go up and down on his oxygen concentration. Overall, a "good" day.

Unfortunately, after about 5:00 pm, after one of his nebulizer treatments to loosen up mucus plugs in Mason's lungs, his saturations went down a bit. This is a common occurrence and after the mucus is suctioned out, normally the saturations come up. Well, need I say it? Mason is not normal. They try to suction, but nothing comes out. So, the saturations stayed lower than we'd like and so we turned up his oxygen concentration. Now, we wait until things get back to Mason's "normal" and he resumes being stable. The good news is that Mason's x-rays this morning and tonight looked better than yesterday. The upper lobe of the right lung is staying open again.

Oh yeah, poop. We've hit the motherload! He's had poop with nearly every diaper and even goes while we're changing him. Forget the wimpy hospital grade diaper wipes, this is a job for washcloths and lots and lots of Desitin. Glad the nurse is here to help take care of it!! This is not a job for 1 person!

Poop and More Poop!

It took a long time, but the GoLytely was effective. Mason's gut has finally started moving again this afternoon. He feels a lot better and even started saturating a little better after his first poo -- he's gonna kill me when he's a teenager and reads these!

Today was a fairly "good" day with no major changes. We talked the doctors into no changes with his nitric oxide or his ventilator settings today. We didn't want to mess with anything while waiting for poop. The one thing that did change today was medication. Mason was started on another medication that would help him get rid of mucus. His xray this morning showed the upper lobe of his right lung was trying to deflate again. Hopefully this new medication will help to release any mucus plugs that might be forming and allow it to re-inflate once again.

Just a few more days until the trachea surgery. I say a little prayer each night thanking God for allowing us to stay "critically stable. Again, each morning, I ask God to allow Mason to continue to hold "critically stable."

"Critically Stable"

This morning started off well enough. The doctors are all finally on the same page about needing to do the surgery sooner than later (still not going to happen until Wednesday, though - 3 day weekend an all), the nurses gave me a hard time about not even trying to go to work - what a pessimist I was being, and Mason seemed to be tolerating a wean in his settings. I was really hoping to write a blog tonight announcing that we had an entire day without incident, but no such luck.

We had most of a day without incident, but Mason decided that that would be too boring, so he's got GI issues to deal with. Unfortunately, Mason's belly is getting bigger and bigger despite not eating. He seems to have some sort of blockage that is perhaps causing him some pain. His heart rate has been up, his blood pressure has been up, and he seems to be more fidgety tonight. So, we've started another treatment - GoLytely (also known as "colon blow" in the movies). We are hoping to help his bowels get moving so that he does not continue to have pain from a bloated/distended stomach. Mason had a similar problem after his g-tube surgery in Dec. 2008, but was able to overcome it with reduction in his pain medication. Unfortunately, he cannot get rid of his pain medication and cannot get rid of the sedatives or paralytic so, his little body cannot move things through. We are very hopeful that this treatment will work so that his belly can go back to normal size and Mason can resume becoming stable.

In terms of his breathing and his heart, he has somewhat tolerated weaning down the nitric oxide (now at about 5) and his oxygen (has ranged from 60% to 100% oxygen mixed with air at different points during the day). It seems that he hasn't needed as much support as the vent was giving him, but still needs quite a bit of support. We are hopeful that when his belly gets a little less distended, his breathing, heart rate, and blood pressure will go back to baseline and he can continue to be "critically stable" until his surgery (thanks to our nurse tonight for that phrase!).

Little Bugs Are Gonna Get You - Well, Hopefully Not!!

Thankfully, things haven't been as crazy today, but they have continued to be hard. This morning, once again, I got up, got dressed in the work clothes, but thought better about putting on make-up. I had every intention of going to work, but needed to wait for rounds to make up my mind completely. It was a good thing I didn't put on make-up this time...Mason decided to spike a fever - 101.1. Not a good sign. Add to that, with huge support of the ventilator, oxygen, and nitric oxide, he just wasn't doing as well as we would expect - really only saturating in the low 90's. He just looked sick. And this was all before rounds started. So much for going to work today!

He got some tylenol and once they did rounds (again with the cardiologist saying let's get the trach ASAP), they decided that they'd better re-start the antibiotics and get all kinds of samples to see if Mason has an infection. I think his nurse was in here for a good hour getting all of the samples - urine, blood from 3 locations (his Swan - pulmonary artery pressure central line, his PICC line and a poke in the leg just in case it was something systemic), and mucus from his lungs. Haven't yet heard if there's anything growing in the cultures, but Mason's fever seems to have already broken. Hope it stays away!!!

Well, overall, they have tried to leave Mason alone today. Other than this morning's events, Mason's nurse has tried to stay out of the room as much as possible and they've done a good job of bundling his treatments and moving him when they need to. He has responded well with a burst of the sedative and hasn't needed really any bursts of the paralytic except when we have had to do big things. He's been a champ - I think he realized that his Mama and Papa needed a little reassuring that today was going to be ok.

With a small drop in his saturations and a small elevation in his pulmonary artery pressure, they have been able to turn down some of the help that they were giving him. He is down to 10 of the nitric oxide - down from 20, and down to 80% oxygen/20% air going into his lungs. This is a lot better for him in the long run as those 2 gases can be toxic in high doses. We are encouraged that there hasn't been a lot of change, but still very very worried that he seems to be staying the same or getting worse at times. We have tried feeding him off and on, but it seems that with the medications, nothing's moving. So, he is getting fed entirely via IV (called total parenteral nutrition - TPN). This is not idea, but until he gets moving and off of the pain medication, nothing's going to move in his gut. Yet another reason for the trach. We are always a step away from any of a number of complications that can happen to a patient as sick as he is and really cannot wait for the trach surgery so that he can start to come off of the paralytic, the sedatives, and the pain medication and start moving around some. It looks like the trach is still on for Wed, with the weekend coming up and a holiday on Monday, looks like there's no way to do it sooner. Please continue to pray that the fever was a fluke and that he continues to tolerate everything they are doing to stabilize him and prepare for the surgery.

I've included a picture of Mason's set up in the PICU. I thought some might want to know what he's going through.

Shortages, Mucus Plugs, and Paralytics

Oh my, what a day! We started off with me getting all ready for work - make up and everything! The team started rounds in time for me to listen to them and then leave for my meeting, but once they started, it was clear that I would not be able to go to work today. We started of by finding out that the hospital, in fact the nation, has a shortage of the paralytics that Mason needs for his intubation to be successful. So, guess we're going to "wean" the paralytics again today. I knew this was going to be a process and we were going to see more desaturation spells. Who knew how far he'll go or how many. We just knew Bill and I both had to be here for him. As rounds continued, we learned that the cardiologist wants Mason in surgery for his trach/vent ASAP. She feels that his pulmonary pressure is responding to the medications, and the longer we wait, the greater the chance for the complications of lying paralyzed in bed. He also will continue to have a pressure sensor in his neck that goes straight to his heart. The sooner he gets on the trach/vent, the sooner we can remove that and reduce the huge risk for an infection. Man, I would not want to take her on in a debate! Thank you, Dr. Armbsy for advocating so strongly for Mason!

The awakening and desaturation spells started shortly after 9 this morning. We were able to calm him down with reading to him with the first one - he even reached up and turned the pages of the book. Then, he realized he couldn't get up to look at the book and got mad, so we had to give him the quick acting, short lasting paralytic. Luckily, we had enough of that handy, but could we really give him a dose every 30 minutes as he needed it? The nurse quickly realized that she was not going to leave the room all day! We felt so bad for her. Unfortunately, around 9:30, during the 2nd awakening, he started down a desaturation path that led to 3 hours of scary for Mama and Papa. Despite adjusting the ventilator settings and trying to give him extra breaths with the "bag," we just could not keep his saturations higher than about 80%. They did another chest xray and it showed that Mason's right lung had deflated even further because it was just not getting any air. Not a good sign. A bunch of doctors, nurses, and respiratory therapists were moving around the room and the department like a bunch of chickens with their heads cut off trying to do what they could to get Mason to stop desaturating. Bill and I were just standing outside of the room, hoping for the right answer that would help Mason. Scared of what this all might mean. Wondering what was going to happen. After turning him to his right side from his left side, he came up a bit, but not good enough. They were able to scrounge up some longer acting paralytics from the operating room, which helped, too, but again, not good enough. So, they called the pulmonologist to do an emergency brochoscopy to look into Mason's lungs and see what the problem was and determine if there was anything that could be done to help him. After getting the consent form signed, he started the scope and low and behold, he found a bunch of mucus plugs! After several tries, the scope finally sucked out all of them and Mason started saturating better. They did an xray 15 minutes later and his lung was already re-inflating. Yeah!! Oh, I almost forgot the good news: on the advice of our wonderful nephrologist (kidney doctor) who stopped by, we asked the pulmonologist if he thought Mason's trachea (windpipe) would do well with a tracheostomy tube and he was almost giddy talking about how good it looked and how he thought it would do well. We haven't really heard anything positive out of him in the last few months. It was very reassuring!

Unfortunately, later this afternoon, because of the paralytic shortage, we still had to try to take Mason off of the paralytic. He did ok for a while with an increase in his sedatives and pain medication, but then, the sedatives caused his heart rate to go too low, so they needed to decrease that. Not surprisingly, Mason finally awoke, and man, was he unhappy!!! He looked at Mama and Papa and pleaded for help to get the stupid tube out of his mouth. He calmed down with a little butt patting (his favorite) and Mama singing "Twinkle, Twinkle, Little Star" (no one else's favorite), but then needed a blood draw and got really upset again. While it was really wonderful to see him interacting with us, recognizing us, and calming with us, it was heart wrenching to see him hating and fighting what was happening to him. Finally, after nearly pleading with the doctors, they realized what we and the nurses already knew: Mason cannot be off of the paralytics. Our challenge will be having enough supply to last until the pharmacy can get a new shipment (hopefully tomorrow!!). Unbelievable!!

So, we continue to talk about moving forward with the surgery for the trach and vent. We are advocating for sooner than later because we believe that Mason will do better with that than with the tube through his mouth. We know he needs to be stable to survive a surgery and would never want to move forward in any but the optimal conditions, but we are just not sure optimal is any better than now. For now, we are on the surgery schedule for next Wednesday, January 20th. Please pray that Mason stays stable (or has treatable reasons for any unstable episodes) until then.

Not Sure What to Say About Today

I apologize for not getting this one done earlier, but Mason has kept Mama and Papa on our toes most of the day.

Generally, he had an ok day with some ups and downs. The cardiology team this morning was more encouraging and had some ideas for what might help Mason including going back on the Viagra and starting a new medication that is so specialized we have to have it shipped to our home when we discharge from the hospital. Pharmacies do not carry it. For you pharmacists out there, it's called: bosentan. So far, he tolerated the Viagra well with a little bit of desaturation, but not too bad.

Unfortunately, after the procedure yesterday, the pain and sedative medication all along, and the fact that Mason hasn't moved on his own since Friday, his gut is not moving well. Once again, we've had to stop his feeding so that his gut can catch up. Hopefully, by tomorrow morning, he'll be able to start eating again with the help of our old friend Lactulose.

Mason has been a little more touchy today and even had some tears while the nurse was doing things with his IV and his mouth care. We were able to manage his pain well with the medication, but it was still hard to see our little guy hurting. Given what happened just about an hour ago, I think he was trying to tell us that he just hasn't been feeling good today. Unfortunately, Mason had another spell of sorts today. He desaturated into the 80's and did not respond to the usual intervention of giving him extra breaths with the "bag." They did an emergent xray and found that his right upper lung lobe had deflated and was not moving air like it had with his 5:45 am xray today. Apparently, this is fairly common with intubation and can happen when the tube position is too low. Combine this with his lower lobes not being able to work as well as the stomach was pressing up on it, and it led to lower saturations. Thankfully, the pressure in Mason's heart did not increase with the episode and he's slowly coming back with some changes in the pressure of the ventilator and repositioning.

Just when we think we learn about how to intervene when Mason's in trouble, he throws us a curve ball. This behavior really needs to stop -- I'll be gray by the end of the week if he doesn't knock it off!

A Lot to Process

Mason had a fairly ok night last night. His nurse was great about giving him a burst dose of his drugs before doing anything with him, so he was able to rest comfortably. Mama rested well, too, not getting out of bed from 10:30 when I hit the hay until about 6 this morning when things got moving. A good night of rest. During the day, while we were waiting for the cath lab, he had some trouble with being uncomfortable, but we were able to give him some pain medication, sedatives, and paralytics to try to keep him comfortable.

We talked to the infectious disease doctor this morning about the bacteria that grew in Mason's lung culture. Unfortunately, she burst our bubble. According to her, if you did a culture 24 hours after anyone was intubated, you would get the same results. The bacteria that came up was not the culprit we were looking for. It was just an easy target. So, the antibiotics were stopped today. It does not make sense to treat Mason with antibiotics when he does not have an active infection. Especially since he is exposed to new bugs everyday he's here.

Mason did get to the catheterization lab at about 4:30 this afternoon. Bill and I took advantage of the time when we couldn't be with Mason and got away for a while. Thank you to those who have given us gift cards! We did a little shopping and had a nice dinner out. We returned just a few minutes before Mason was brought back to his room. It was quite the sight as 2 respiratory therapists, 2 nurses, and a transport person tried to navigate all the equipment back into his room.

After about another hour of waiting for the cardiologist, we were debriefed on what they found. There's really no way to explain what they found without getting technical, so I apologize in advance. Basically, what they found was worse than they thought they would. Normally, the blood pressure in the pulmonary arteries is about 20% of our overall blood pressure. In Mason, they found up to 85% of his overall blood pressure -- not good. Fortunately, his pressure does respond somewhat to therapies that can be applied like concentrated oxygen and nitric oxide. Unfortunately, both of those therapies can be toxic to the lungs if applied for too long or at too high of levels. Once again, we are faced with "the lesser of the evils" type of situation. For now, Mason's heart is working hard trying to compensate for the pulmonary hypertension by pumping a lot of blood through the heart, but in Mason's case, though, "a lot" is relative. Mason has become anemic since having all of the lab tests which doesn't really work well with his heart issue, and can become serious quickly so we are doing a blood transfusion tonight. We are hopeful that having more blood in his system will allow his heart to take a little bit of a break and not have to work so hard. I realize this all can be confusing - we talked to the doctors for quite a while trying to completely understand. The best way I understood it was by way of a math type of equation. First, though, I'll define the terms:

Oxygen delivery = how much the body decides it needs and how much has to be pumped out to the body. This is a set number.
Cardiac output = heart rate and volume of blood being pumped with each contraction of the heart
Oxygen Content = oxygen saturation and hemoglobin (red blood cells)

So, the equation:
oxygen delivery = cardiac output x oxygen content

Since Mason's hemoglobin is low, the oxygen content is low, so the cardiac output has to be higher to get the oxygen delivery that the body needs. We are hoping that if we give the transfusion, then the oxygen content can be higher and the cardiac output can be lower. Thus, a rest for his heart.

This is almost more than we can process in a short amount of time. From what we gathered from the doctors, the best chance Mason has is to let his lungs grow over time. We were again reminded that lung tissue does continue to grow after birth. We have heard that it continues to anywhere from age 4 to age 8. We are hopeful that with time, he can get better. The one thing we do know with almost certainty, though, is that Mason cannot grow under the circumstances that brought him into the hospital - working hard to breathe, losing weight, and being on a high level of constant steroids. So, our answer: we will be moving toward a tracheostomy and ventilator for Mason. When? We have no idea. For how long? We have no idea. Right now, we are still in an acute illness. Mason has to be far more stable and allow the ventilator to work while he is awake and aware of what's going on before we can even think about a trach. We have a very long road ahead of us.

Thank you to everyone who posted a comment on the last blog. Your kind words and support really helped keep our spirits positive today. Thank you!

Sunday, A Day of Rest

For the most part, that's what Mason got to do today. In fact, the nurse's goal for him today was "rest/recover" -- I think we're finally all getting on the same page!


At about 2 am or so, after yet another major desaturation, the doctors finally agreed to put Mason back on the paralytics and he's been on them ever since. They've been able to turn them down a bit with the addition of another sedative, but realized that paralysis was important for him. It's nice to see him comfortable most of the day. He has done well with the ventilator settings and was able to be weaned down a little bit. At best today, he was needing only 60% oxygen/40% air. I imagine some may be wondering why the % of oxygen is so important, after all, we all breathe oxygen every day. In reality, we only breathe in about 21% oxygen in the air. There's actually a lot of other gas that we breathe in. The more concentrated the oxygen, the harder it is on the lungs (gets a little too technical here), but basically, high concentrations of oxygen can harm Mason's lungs even further - something we REALLY want to avoid. He did great on the lower setting for most of the day, but after several hours, needed to come up a little bit. He continues to rest very comfortably on 70% oxygen/30% air and saturating at 94-95% - perfect saturation for him.

In the next couple of days, we will be investigating a little more of the Why? question. One of the bacterial cultures that has been sent out finally came back indicating that Mason likely has some bacteria growing in his lungs. This may be as a result of the aspiration pneumonias that he had some time ago or it might be just a new thing. We really don't know, but we do know that it should respond to the 2 antibiotics he was started on Monday and Friday. We are hopeful that the bacteria does respond and hopeful that there will be some improvement once it's gone. We are also planning to have Mason's heart looked at in the cardiac catheterization lab early this coming week. They will insert a catheter into his femoral vein and/or artery (in his groin area) and thread it up into the heart. This catheter will be able to measure the pressure in his lungs and his pulmonary arteries to see if he does in fact have heart issues. They will also be able to look at the hole in his heart to see if it is contributing in anyway. The information they get from this study will help to guide our treatment plan moving forward. The procedure does not come without risk, but we have the utmost faith in the skill of the cardiologist doing it.

There are still so many variables and Mason is still so very sick. Please continue to pray that he responds to the treatments that are done and is safe through his procedures.

I have heard that there are many, many people following the blog. I am grateful for every one of your prayers and offerings of support. Its amazing that our little dude has touched so many. Please don't hesitate to leave a comment and let us know you are following along. To do so, click on the word "Comments," leave a message in the box, copy the word that's written, and select "anonymous" if you don't have a Google account. If you do select anonymous, don't forget to write your name in your message. Otherwise, we don't know it's from you!

A Reasonable First Full Day

Today was Mason's first full day on the ventilator. He had some ups and some downs, but generally tolerated the ventilator well with some heavy sedation. The doctors changed things up a little bit including how the vent. delivered the air, how much/little Mason was able to move his body, and his nutrition.

One of the doctors today talked about how the vent. was delivering air to Mason. The way they set it up gave a constant pressure for lung inflation. They did not think that Mason's lungs would be able to receive a constant volume of air, so they decided not to set it up like that. However, once he was intubated, he surprised them. They found that Mason's lungs were not nearly as stiff as they thought by xray, so they could be pushed with a constant volume inflation. They also theorized that Mason's major desaturations were possibly due to a decrease in volume when he woke up because he would bear down and get really stiff. So, if the vent. delivered a constant volume, it might be able to help him avoid those major desaturations. The good news is that during the day, when he had some paralyzing medication in him, but wasn't fully paralyzed, he would wake and not desaturate! A really good sign! Unfortunately, when they stopped the paralyzing medication all together, he was not as successful. He had 1 more major desaturation. They were able to bring him back up fairly easily and he's now resting comfortably on 85% oxygen/15% air with his heart rate around 100 beats/minute and oxygen saturation of 94%. Pretty good for him! Our goal is ~60% oxygen/40% air and saturation above 95%.

As far as how awake he is, the doctors are trying really hard to allow him to be awake and able to move, but really, really sedated. The more he is able to move on his own, the more he is able to keep his joints moving and avoid fluid buildup in his body. It is also good to allow him to be awake enough to cough. When you're flat on your back with a breathing tube in, congestion tends to set in. If he is awake enough to cough, he can sort of avoid that. Unfortunately, we haven't been successful at allowing him to be that awake, but he did have quite a bit of time today when he could move some, but kept his saturations up. It gave me good hope that this might work after all. Once the paralytic was completely taken away, though, his awoke a little too much and his saturations dropped. Apparently, we all needed to be reminded once again that we need to have patience and take baby steps.

They were also able to start feeding him again. We've fed him overnight just about every night this week, but because of his major desaturations before getting the breathing tube, they would stop his feedings just in case. Because his lung healing all hinges on his growth, it's really great to see him tolerating his food well. Hopefully this trend continues and we can do some other things that will allow him to resume growing.

Well, I continue to be pretty pooped with all that we've been through. I'm going to sign off for now. I'll keep you all posted on our progress. Please continue to pray for healing for Mason's lungs. It is going to take pretty much nothing short of God's Hand to help him get through this.

Night, Night, Baby Boy!

I'm pretty exhausted from little to no sleep last night and the emotions of today, so I'll be brief. Mason's ventilator tube went in without any problem at around 2:30. He, unfortunately, doesn't like it when he's aware of what's going on and tends to desat because of it. So, they are going to keep him heavily sedated tonight to allow his body to rest and his lungs to get used to the tube. He appears to be resting comfortably with the ventilator doing the breathing for him. Its the least amount of work he's had to do to breathe since leaving the NICU 1.5 years ago.

Had some difficult conversations about the extent of Mason's current acute illness in our meeting today. Looks like we've got a long and difficult road ahead of us. I compare it to how sick he was when he was first born. He is pretty critically ill and the next few weeks to months are going to be important for knowing what his future holds.

Please Pray For Mason

Mason desaturated every hour last night and has been working much harder to breathe this morning. It is time to give him a break. We have decided to place him on a ventilator as soon as they can get things organized. Please pray for strength for us and rest for Mason.

Treading Water...Now its Time for Tough Decisions

Well, our magic little pill wasn't so magic. Mason had another episode of desaturation today - getting to be a daily occurrence. Overnight, he had his IV replaced, but didn't really have any desaturations. Then, over the course of a couple of hours, he continued to need more and more help, then hung out with low saturations for a little too long. They turned him back up to 20L of 100% oxygen and he improved. They also gave him some IV lasix and he peed and peed and peed - a total of about 11 ounces in a matter of a couple of hours and another 4 ounces within a few more hours. From then, he improved a bit more. Despite that improvement, we're really not making progress and at this point, we're having some difficult conversations.

Hang on, I'm going technical to explain what happened today...

Viagra:
One of the potential effects of Viagra in this case is that all blood vessels in the body get dilated. In Mason's case, this has the potential to not be a good thing. If blood moves through the lung through the newly dilated vessels and moves through the areas that don't get enough oxygen, the blood doesn't get oxygen. Unfortunately, the heart doesn't know that the blood doesn't have oxygen so it still sends the blood out to the body. That ends up leading to poor oxygen saturations. Well, that's exactly what happened late this morning.

Pulmonary Hypertension:
They were able to repeat the Echo (ultrasound of the heart) and see that he also had blood flowing back and forth between the top 2 chambers of his heart (atria) instead of flowing from the top right to the bottom right and out to his lungs to get oxygen then from the top left to the bottom left and out to the body. So, once again, blood that doesn't have oxygen in it was going out to his body. Double whammy!

We have some clarity:

1. We know Mason's heart is worse than 2 months ago, so his breathing is worse.
2. We know that nitric oxide works to help Mason's oxygenation.
3. We know he can't go home on the nitric oxide gas, so that's not an option.
4. We know Mason cannot tolerate the Viagra (medication replacement for the Nitric Oxide), so that's not an option.
5. There's not much else that can be done without looking at assisted breathing (CPAP, ventilator, or tracheostomy with one of these devices).
6. A time may come soon when Mason will not be able to recover from these episodes, so its time to make some decisions.

Tomorrow, we will be meeting with the cardiology team, the pediatric team, and the pulmonary team to look at our options: CPAP to help with the acute problem, ventilator to help with the acute problem, tracheostomy and ventilator or CPAP to help with the long term problem (the next few years). Once again we are asking for the strength to make the right decisions to allow Mason to have the best quality of life, the best chance for his lungs and his heart to improve, and the best care he can get. Please keep Mason in your prayers tonight.

Long Day Ends With a Smile!

I'm amazed at how long this day has been, but yet I'm just now feeling like I really need to hit the hay. So, I'll probably be more brief than I should, forgive me.

This morning started at 3:45 am with a "normal" desaturation for Mason. The problem was, he didn't go back to sleep. So, at 4:30, the nurses and I thought we may as well do his daily blood draw so we wouldn't have to awaken him (and me) again at 6 am. Moments after making that decision and just after changing his diaper, Mason decided to give us all another scare. He desaturated significantly to the point that, as we found out tonight, the attending doctor was thinking they would have to place Mason on a ventilator - they had the intubation tray ready outside of our room. They turned his oxygen back up to 20L and 100% oxygen (remember from last night's post, he was down to 14L and 90%). I called Bill at 4:55 am (not a good time for anyone to get a call in the morning) and told him he should come over because Mason's saturations were just not coming up. After hanging up the phone, I realized that Mason had been rubbing his nose quite a bit. So, I looked for boogers. Sure enough, a major blocker in each of his nostrils. 3 of us tried to suction him to get those things out, but to no avail. So, I tried to move them with a cotton swab. I ended up dislodging them, but didn't get them out. Apparently it was enough. Between the increased oxygen, the dislodged boogers, and replacing the water in the oxygen humidifier/heater (not having enough ends up with ice cold air being blown up his nose at a rate of 20 liters per minute -- not comfortable by any means!), something worked and Mason started saturating better. So, by the time that Bill got here, the crisis was averted and we could all get some sleep. Mason slept well after all of this for several hours afterward and started saturating at 100% within a half hour or so and remained that way until they started weaning him down again. Throughout the day, they have continued to wean him and he's now at 8L on 100% oxygen and saturating at 95% while trying to go to sleep.

After talking to the pediatric team and the cardiologists, it was decided that Mason should take a medication that acts like the nitric oxide that has helped him so much. It is a drug that dilates all the vessels in the body to increase blood flow everywhere. The nitric oxide goes directly to his lungs, but isn't really feasible to do at home. So, the next best thing is this drug. It does run the risk of lowering his blood pressure, so they're starting on a small dose and will titrate him up based on his response. If he tolerates it well, and it helps, he will then wean off of the nitric oxide and see how he does. If it ends up working, I'm a little afraid of the sick humor that will ensue as I tell people that my 21 month old son is on Viagra...Go ahead, giggle, you know you want to! It's always better to end the day with a smile on your face!! :-)

Same Stuff, Different Day, Better Outcome (So Far!)

Today could be described in a nutshell as a repeat of yesterday, just one step closer to artificial breathing help.

Last night went fairly well from Mason's perspective. He slept through the night without too much trouble. From the doctor's perspective, it didn't go as well as she had hoped. We were not able to wean Mason's oxygen concentration down much at all. He was turned down to 85% oxygen/15% air and within 15 minutes started to desaturate. So, his concentration was increased and he did fine for the rest of the night. This morning's labs looked good and things seemed to be stable - not improving, but more importantly, not getting worse. So, I went to work.

Then, about 1:30 (same time as yesterday), I got a call from Bill saying the same thing as yesterday - "he's not holding his saturation, you need to come back." Mason had had an Echo (ultrasound of his heart) at about 12:30 and just seemed to not do well after that. By the time I got back to the hospital at 2:00 (I may have broken a few speeding laws), the team was once again in the room and once again deciding what to do. They had already decided to bring in a CPAP machine, "just in case," and were talking about putting Mason back on Nitric Oxide. For those of you who have been keeping track, this is one of the machines he was on for the 1st 9 days of his life. The gas is not the same as laughing gas, but rather is a gas that helps to dilate the vessels to make moving air around a little easier. As the respiratory therapist was setting up the machine, the cardiology resident came by and said that she would recommend that Mason be put on nitric oxide to help him breathe -- seemed like everyone was on the same page!!

Amazingly, and wonderfully, within 3 minutes of hooking up the machine, Mason's oxygen saturation when from the 70's to 100%. Clearly this treatment was making a difference. You could feel the tension leave the area - ours included. Mason relaxed and clearly found it easier to breathe. You might ask why, if this made such a huge difference, why haven't we done this sooner? In a nutshell, because we didn't know it would help. Mason's heart issue (persistent pulmonary hypertension) has been stable since he was born. They haven't been able to measure the extent of the hypertension in his Echo because it is so mild. So, because it has been so stable and so mild, cardiology believed that he did not need medication to treat it. However, apparently, according to the Echo today, the hypertension has increased some over the last couple of months. So, with that and the fact that Mason was so acutely worse, it was time to try it. And, thank God we did! I believe we were just a short time away from having to make a CPAP vs. ventilator decision when the Nitric was started. I am so thankful for the wisdom of my fantastic husband for asking the question about whether Nitric would help and for that of the providers to support such a great idea!

So, here we are, night 2 in the PICU in a much better place than the night before. Mason is weaning down on his supplemental oxygen; currently on 14L of 90% oxygen/10% air and saturating at 96% -- light years better than the night before. Thank you for all of your support and prayers. We appreciate every one!

When Things Go Wrong...

...they go really, really wrong. I'm not sure what happened, I'm not sure how things changed so quickly, but they did.

Last night, we finally got the pulse dose steroids started at midnight without too much trouble -- we did have to adjust the IV, but it worked and the steroids went in easily. Mason needed about 9L of oxygen overnight and was barely holding his saturation in the high 80's. Then, this morning, he slept in and around 9 am or so, he started to do well and I was able to turn him down to 6L. After he woke up, he needed more, but just about the same as last night (remember he usually needs much more oxygen during the day than at night). Things stabilized again and around 1 or so, I turned him down to 7L.

While grocery shopping (we need to eat, after all), I called Bill to see what he wanted for lunch and found out that Mason was having a little more trouble keeping his oxygen level up. By the time I got back to the hospital around 2:30, Bill, the entire pediatrics team, the nurse, and the respiratory therapist were in the room. You could just feel the worry emanating from the room - not a good feeling at all! I steeled myself, went in the room and faced the conversation. To say they were worried was an understatement. They had already called the PICU doctor to come up and triage, the respiratory therapist took it upon herself to change how Mason was hooked up to the oxygen and start him on true high flow/CPAP oxygen, and the attending was talking to Bill about what next steps were including PICU, CPAP, and possible ventilator. How could this happen in the hour I was gone??

Thankfully, things stabilized when we got Mason a wet towel to chew on, changed his oxygen flow, and had a few people leave the room. With a few other hiccups, we finally got transferred down to the PICU and now Mason's hooked up to IV fluids, on 20L high flow oxygen, and finally, FINALLY, sleeping soundly. We are hopeful this will be a repeat of the "just in case" trip to the PICU we took in October, but preparing ourselves for more. Not sure how this one will turn out, please, please pray that Mason's oxygen needs stabilize and we don't have to be reminded of a ventilator or CPAP hooked up to our child. Please also pray that we have the strength needed to make the right decision for him whether that is tracheostomy or continue with the pulse dose steroids.

"Do Not Pass Go"

Okay, okay, I hear you! I apologize for not posting in the last several weeks. Since we returned home on the 15th, we've been struggling to stay away from the hospital. Even as I write this, I'm interrupted to attend to the screaming oxygen alarm. Don't get me wrong, there have been good days, and for those we are so thankful. There have been days when we watch our little boy wandering around the house, happy as can be. There have been days when Mason holds up the dog's bone so desperately wanting to give it to Chief, but can't yet call him, so we help him out. There have been days when Mason's oxygen need comes down, he relaxes, and we all breathe a little bit easier. I can't say this was the best Christmas ever with our 21 month old child. I can't say this was a great New Year's, but boy are we looking forward to a better 2010!


I think our biggest struggle over the last 3 weeks has been getting enough sleep. Mason used to be an excellent sleeper. He would go to bed around 9 pm, fall asleep between 9 and 10 pm, then sleep until 9 am (maybe waking to say hi to me when I gave him his 6 am meds). We were so spoiled and we knew it. Unfortunately, at this point, we aren't so spoiled. Mason has not slept through the night in a very, very long time. We've had nights when we've had a good 3 hour stretch at a time, but those are few and far between, and mostly happen because Bill and I sleep in shifts (he stays up to give the midnight meds and I wake up to give the 6 am meds). Most nights, we awaken many, many times to either a little boy who is crying because he wants his towel re-wet (a wet hand towel or washcloth is like a security blanket laced with crack for Mason - he can't get enough of it!) and/or an alarm going off because Mason's oxygen level has dropped. Either way, we are usually awake for quite some time -- anywhere from 20 mins to 2 hours -- only to go back to bed for a short time to get whatever sleep we can before the next round.


For those of you who know me, you know that I'm a control freak, extraordinaire! The down side of this is that I can't relinquish control enough to have someone else taking care of Mason during these struggles. Even in the hospital, we ask the nurses to not come in in the middle of the night unless they have to. I do have some logic, though -- Bill and I have been doing this long enough now that we know our son. We know what oxygen saturation is "normal" when he wakes and cries and we know what to do to calm and soothe him. We don't have to worry about "trial and error" most of the time - don't get me wrong, we screw up a lot, just don't have to waste as much time trying to figure out what is wrong. So, I know I made my bed, I know I have to lay in it -- I just don't get to sleep in it for long periods of time... :-)

As far as Christmas, it was a struggle for Mason. We really saw a jump in his oxygen need and intolerance for activity that really didn't get much better over the week afterward. Then, as we were driving down to the coast for New Year's Eve and a little getaway, Mason again got worse. Unfortunately, for whatever reason, his oxygen need kept climbing higher and higher. So, we decided it would be best to do the next dose of "high dose" steroids a little earlier than scheduled (just by 5 days, not too bad). As I sit here in Mason's room at the hospital, waiting for the high dose steroids to start, I finally have a chance to finish the blog -- 14 hours after starting it this morning. Amazing how the day gets away from me...

We did get some great pictures of Mason over the last couple of weeks. Here are a few for you to enjoy:

I'm pretty sure I've got this computer thing figured out!

They're mine, all mine!

What's this gritty stuff on my fingers?

Night, night, everyone!