Hope for Max and Alex

New day, new plan

Well, Max got his second full night of sleep last night and we were still treated to an oxygen desat this morning, but we have a new plan!

We have been fighting this the SMA pneumonia way and after several lengthy discussions with doctors yesterday regarding the effects of the adenovirus it got us to thinking. Both the pulmonary and the intensive care doc discussed the adenovirus creating an acute asthmatic response (inflammation and airway constriction). I proposed to Aaron this morning that the low numbers weren't due to one particular event, but the combination of two...junk in lungs (like pneumonia) and asthma (similar). We went and discussed with the respiratory therapist the differences in treatment protocol for an asthmatic with pneumonia and viola, new treatment plan is now in place. We are going to shorter treatments every two hours and introducing inhaled steroids to reduce inflammation. Apparently steroids are contra indicated for viruses, but given that the acute phase of the virus is over we are safe to use them. Our hope is that they will ease the inflammation in the lungs making it easier to breathe and thereby increasing his numbers on that side, so then we can battle the junk building up in the lungs. Typical SMA protocol would call for continual coughing with the cough assist to move junk up and out, but it's actually doing Max a disservice when done too much as it is robbing him of his reserves and possibly making his numbers worse. Important lesson for us...we have always had great success with SMA protocol and for most situations it is absolutely necessary to get Max better, but we need to remember that not all illnesses work the same in the lungs and be willing to change and adapt. Basically, we are now doing treatments every two hours of two bronchodilators, and his vest, coughing on alternate treatments and inhaled steroids and pulmozyme (to break up stuff) with deep suctioning as necessary. Clearly, what we were doing wasn't working, time to try something different. I am hopeful for progress. We don't expect him completely better prior to leaving, we just need his oxygen levels at a more manageable rate for home. Here's to another 24 hours in the PICU.

 

 

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Well, clearly my sheer will didn't work...

We are STILL in the hospital. Max did well all day yesterday and then yesterday evening he got a small fever and then had a major oxygen desaturation. The doc gave him something to sleep and we decided to forgo treatments during the night to get him some good rest. He slept like a rock for ten hours! Today we got very aggressive, as we knew he was rested and thankfully, that fever was just a fluke. We had one period where he hung out low, but we decided to go ahead with another treatment getting a little creative with moving him around for treatment time. Yesterday we were able to get him in his chair for his nebulizers and today we did the second treatment with Max sitting on Aaron's lap and leaned forward before putting him in postural drainage (upside down). I am slowly weaning back his oxygen. Right now there is no way to quantify how much the inflammation from the virus is playing into Max's numbers. We know we are dealing with some junk in the lungs and some fatigue. All those things combined are probably creating the low numbers. I believe we will go home tomorrow regardless of o2 needs unless something super crazy happens overnight. The doctors are comfortable with sending us home given that we have an oxygen concentrator and he is recovering within an hour and we have all the equipment we could possibly need and nurses at the house. We are really hoping to break out of this joint. I spoke to his pulmonary doc about the possibility of a secondary bacterial infection from the junk sitting in his lungs, a real possibility and we have a game plan in place in the event we get home and he develops fever and increased mucus (read: infection).

I could give you a laundry list of reasons we are ready to go home....but I won't. Suffice it to say we are all done, Max, Aaron, my mom, me and I bet Alex too, if he could talk. We are ready to get back to normal even though we don't really know what that will look like in the immediate future (although I do know it would mean cleaning my bathrooms and grocery shopping and cooking dinner, all things I desperately miss right now). This adenovirus is nothing short of a real butt kicker. Basically, he could need his bipap for quite awhile, so that his lungs can recover. I am holding out hope that once home Max will bounce back quickly, as he always seems to do in the past because we had such an awesome weekend planned for July 4th. Thankfully, Alex doesn't even realize we missed his birthday, lets face it first birthdays are really for the parents anyway. Right now I think Max and Alex totally deserve a fun weekend, in fact I think we all do....right after a couple of nights of uninterrupted sleep.

On the upside, Max is receiving his bone density infusion as I type this, which makes for one less trip to clinic and needle stick this summer. This was a huge collaborative effort on the part of his endocrinologist, PICU doc, and our case manager for Tricare. Also, for the past few years we have been operating on the assumption that Max has colonizations of pseudomonas in his lungs (similar to what a person with Cystic Fibrosis would have) given his multiple pneumonias over the years. Well, courtesy of his broncoscopy we know now that he has NO colonizations. The pulmonary was thinking it may be time to go to the rotating Tobrimiacin nebulizer, meaning do for one month, off for one month, but that is obviously unnecessary and we can continue to only use it when he is sick. This is great news because that nebulizer takes forever and is twice a day adding almost an additional 30 minutes to treatment times. Anyways, those are the positives I am taking away from this trip to the luxurious accommodations of the Sacred Heart PICU. Incidentally, is it weird that I feel badly for other families in the unit...I mean we know that ICU stays are part of our life, this is something we have accepted, don't get me wrong we try to avoid it at all costs, but we know it is inevitable for certain illnesses. We plan for stays like this, we have hospital clothes, bags, packing lists. Heck it took us an hour to pack and prep for the trip to the ER that day. Anyways, I always feel bad for the people who are here for freak accidents and are thrown into this life. They were just going about their business and craziness intervened and now they are here for a considerable length of time. At least we are prepared for the tough discussions, endless nights and emotional roller coasters. Just what I was thinking the last couple of days. Also, a great reason to support the Ronald McDonald house. We are fortunate to live near the hospitals that Max stays at and are able to return home to sleep and shower, and have a fabulous support network in the local area, many families are not that fortunate. Lengthy hospital stays can be costly on families once you factor in meals, parking (thankfully here it is free...not true at most larger hospitals, even for patients), and accommodations. To top it off many families weren't prepared for what life threw at them...seriously the kid next door to us was in a bizarre boating accident, courtesy of a sturgeon. Okay that concludes my public service announcement portion of my blog post.

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The light at the end of the tunnel appears to be getting farther away...

So Max continues to have these truly awesome oxygen desaturations (that was sarcasm....they are not awesome...they are down right scary) a couple of times a day, basically stationing the PICU doc in our room for about an hour each time. Max asked the doc yesterday when he could go home and the doc and I both agreed when he could go 24 hours without requiring the doc to hang out in his room. He is also complaining of belly pain and hasn't slept in almost 24 hours which isn't great for his strength to keep breathing on his own. In addition we thought he was getting IV fluids to compensate for some of his fluid intake over the last few days only to find out that he was getting 3ml an hour basically to push the IV meds in, so we are now doing water flushes to his G tube to compensate for that. This explains why the mucus was getting thicker and is one more hurdle to overcome today. The belly pain is causing him to breathe really fast which is also not good given that he hasn't slept. I now feel like we are just going in circles. I'm pretty sure we hit this moment in every hospital stay. Aaron is exhausted from spending about 20 hours a day here given that when I arrive in the morning Max likes to do his desat thing and Aaron doesn't feel like he can leave until Max is situated and better (really you can't blame him, I wouldn't leave either). We are both tired, but aaron is truly bearing the brunt of the exhaustion on this hospital stay. So today I have a lot of brainstorming to do with the doctor in regards to fixing these issues, how to handle anxiety is, I believe, at the root of most of our problems, because his mood is really good most of the time. I was hoping that anxiety wouldn't play that much into our stay given that he is a lot older now, but apparently I was wrong. I have to wonder if that could be at least some of the belly pain. As for the sleep I am wondering about the possibility of coming off the sedation meds making it difficult to sleep. I am pretty sure the doc said that was a possibility the other day and of course, even if it is an improbable, my kids love to do the opposite of everyone else. My hope for today is to see the fruits of increasing his fluids substantially yesterday and finally getting him in a position to rest, not sure yet what that is going to look like.

We were able to get him up in his chair for nebulizers and he tolerated that well. I am determined to get him released tomorrow...maybe with sheer will and determination we can make that happen. This kid needs to get home to truly recover and we all need rest. I am hopeful today that the doc will be open to some options.

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We live to fight another day

Max was successfully extubated yesterday around 1pm. Of course, it was not without a bit of drama to keep the PICU staff on their toes.

So this is how extubation day went down....it should go without saying that we were operating on hospital time, so the 9am time frame turned into 1pm rather quickly. We talked to the doctor about all the details for extubation and they reduced his sedation meds (almost completely) at 10am. It took about half an hour and Max started coming around and was one unhappy kid. It was either Aaron or I at his side for the next 3 hours explaining what was going to happen and trying to engage him to think about other things. Thankfully, they let us stay in the room, as we had previously expressed to them our concerns regarding Max's anxiety and how that can play into his breathing. It was incredibly fast, they pulled the tube and placed the bipap without so much as a number change in his oxygen levels. He actually settled down pretty quickly. Then we waited. There were basically two options, either it would have been an immediate fail or, the much more likely option, he would do okay for a bit and just tire out and not want to breathe anymore.

As I've said before, this illness has been rather unique in that we weren't battling copious amounts of mucus, so all the treatments in the world weren't really helping. Now it wasn't hurting, as it was keeping him relatively clear, but it wasn't helping his "numbers." His treatments have been going every four hours. They did a treatment just prior to extubation and upon extubation his numbers were pretty decent. Well, over the course of the next two hours we watched a steady decline in his numbers despite increasing his bipap pressures and oxygen flowing into the bipap, yikes, not what we wanted to see. When he started hanging out in the the high 80s we were all getting a little antsy. It was about time for another treatment and Aaron and I were anxious to get it started. We start running his nebulizers and we continued to watch the numbers decrease. By then the PICU doc was in the room too and I can tell you from past experience PICU docs don't hang around to chat, it is not a good thing when they station themselves in your room, it means trouble. At this point Aaron is being a rock star and he and I are both still pretty calm. I am asking the doc to let us attempt to cough him and finish the treatment, all the while Max's numbers are falling into the low 80s. So I tell the respiratory therapist that we are gonna need some specific catheters for deep suctioning and she goes to get them, little did I know I sent her on a major hunting expedition from which it seemed like she was gone forever, which made for one unhappy PICU doc...note to self, doc does not like when RT disappears when patient is hanging out with an oxygen level of 80 with 10 liters of oxygen being supplemented. So Aaron and I (mostly Aaron, did I mention he is a rock star who was completely calm during this whole time) are doing Max's treatment while the PICU team is preparing for reintubation, like for real, bringing everything they need back in the room. Meanwhile I am telling the doc that I really think his breathing is okay and we are merely dealing with a mucus plug. Basically, before we assume he is failing lets give us a chance to clean him out a bit and see where his numbers go. Now, I probably sound like we were really calm and we were, I can tell you if this was going down at home (which it has when Max has been sick in the past), we aren't nearly as relaxed. At least here we know there is a whole team of people who can intervene, at home the stakes are much higher. So our rogue RT returned and we had her do a deep suction on Max and low and behold his numbers jumped back into the 90s and we lowered his O2 back to 5 liters. Slowly, the chaos in the room dissipated, the intubation tray disappeared and Max actually took a good nap with heart rates dipping into the 80s for the first time in 10 days (which is a good thing). The nurse came by later and told us she was really glad she wore her deodorant that day. The evening and night actually went pretty well, in fact Aaron went so far as to text me the word "fantastic." However, upon my arrival this morning his numbers just weren't great. Aaron has been here for well over 24 hours and was really looking forward to going home to shower, but with Max back to hanging in the 80s and with the events of last Monday when he left you couldn't have pried him out of that room with a crow bar. In reality what we were battling this morning was mucus and after two full treatments and lots of deep suctioning his numbers are much improved and he is much more comfortable. Of course in the midst of getting his numbers up his IV blows and so do his bowels creating chaos on all parts of the bed. Battle one, get him back in the 90s, battle two disconnect all lines (G, J, IV), battle three bath (serious explosion of bowels) and change bed linens, battle four new IV...so it is after 12:30 and Aaron is still here and we just got Max settled down for a nap. He is breathing, clean, and has IV access. Max's sweet PT is bringing some very hungry parents lunch (shout out to Ms. Alison)! I kid you not, every hospital stay ages us a bit and this is definitively no exception.

I guess my point is, Aaron and I both feel that we can safely say, Max is in the clear and well on the road to recovery. Not sure how long he will require bipap 24/7, but we can expect at least four days of round the clock treatments. Thank you all so much for your continued prayers and support, clearly this kid isn't done yet. TAKE THAT SMA!

Our best hope is to be released tomorrow evening. On the upside, Max's endocrinologist is attempting to see if the PICU doc will let us run his infusion for bone density while we are here and have IV access as opposed to coming back in a couple of weeks to the infusion clinic. I love when we can utilize our time wisely!

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Fever free for 24 hours!

And today we got a smile! Just what mommy and daddy wanted to see in preparation for extubation tomorrow. His lungs continue to improve and his breathing trials are going well. Heart rates are also back in the normal range and his caloric intake is almost up to normal. We have officially checked every box for extubation. Of course, the doc reserves the right to change the plans if Max throws us any loops.

I'm gonna be very honest, this is our (and the doctors) main concern. Max is in the best place possible for breathing on his own. The only thing that no one can predict is how his muscles used for breathing will respond when put back to work, basically the "atrophy" in Spinal Muscular Atrophy. He will be moved to bipap immediately following extubation, which is a form of "non-invasive ventilation," so it won't be just moving him to completely breathing on his own. It is likely that he will need the bipap for at least a few days following extubation. If he does not breathe on his own he will be reintubated. Specific prayers for the muscles used for breathing are appreciated.

I will probably not update until much later tomorrow evening depending on how the day goes. He will also require a significant amount of integration, as the sedation meds will be completely off and we will resume a much more active role in his caregiving.

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24 hours in the PICU

Really not much is changing right now, so I thought I would give you a 24 hour look at PICU life. Max continues to do well on his trials and his fever returned early this morning, however he has been without fever all day since and his heart rates are improving, which is a good sign that we are nearing the end of this virus.

Obviously this is almost all from my perspective, not Aaron's. I wake up about 5:00am, get ready, get Alex up, feed him, prep Max's tube feeds and head into the hospital (attempting to always arrive shortly after 8am (shift change and report goes from 6:30-8, so there is really no entry or exit during that time). Upon arriving I get "report" from Aaron in regards to how the night went, almost always fine. Now I have to say upon my arrival my mood is pretty chipper. I am positive for the day ahead and ready for battle. The day wears on and numerous people, doctors, respiratory therapists, nurses, dietitians come in and do there thing my good mood starts to diminish. As each one chats with me and works on Max I am continually reminded of all the challenges faced with SMA. Like when the doc comes in and says, well, we are waiting for the sweet spot where he is well nourished, well rested and this virus has done its thing, because when we go to extubate we want to know that our only complicating factor is the SMA and not second guess our timing. I watch (and help) as the nurses bathe him and reposition him. You would think this is more normal to me, it's not like he moves on his own when he is awake, but there is something much more sad when they are doing all of this while he is sedated. During his respiratory treatments he wakes up a bit and it is beyond sad watching the tears in his eyes while they suction him. I will read to him or turn some cartoons on during this time, but they put a cream over his eyes to keep them from getting dry and they tell us his vision is probably blurry from it. I have to say all the people who have worked with Max here have been great extremely careful and caring. They are good at their job and been very sweet to all of us. Like many areas of nursing, the PICU has its own dynamic and it is interesting to watch. Luckily, they say that due to the meds he will probably not remember much of this experience. Even the treatments themselves are slightly discouraging as in the past we have always been battling the mucus production and attempting to clear the lungs, well, his lungs actually sound pretty good and there is no real way to fight the inflammation of the virus, just wait. I'm not good at waiting. I am good at fighting. To top it off, due to the virus, all the staff have to wear isolation stuff in the room, so it is a sea of people in paper gowns and masks.

This is the view from our room. I may briefly leave the room to grab something to eat or drink, but that is it. The hospital grounds are actually pretty, the view from our room, not so much. By the end of the hospital day, my mood is not great. I am tired and discouraged. Aaron has been sleeping during the day and returns at about 6, so I can head home to shower and eat, feed and hopefully play with Alex before he goes to bed. As I drive home I remind myself the same thing I've been telling myself every time Max has gotten sick. This awesome kid is merely on loan to Aaron and I right now. He actually belongs to God. We have been given the tools we need to care for him and surrounded by great people to assist us. We have done everything we can possibly do for him. The outcome of each of his illnesses is out of our hands, we treat, we pray. I go home, eat, sleep, and hang out with our other most precious "loaner," head to bed, and wake up ready to fight another day, because in our house giving up is not an option, in our house we live on hope.

Now all of this would not be possible without the assistance of numerous people. My parents have been taking care of the house and Alex for us, which is no small task. Friends have been providing dinners. My Aunt Tammy and Granny came over earlier this week to run errands and bring us lunch, my Aunt Kathy is over this weekend giving my mom a hand and my cousin Lisa is also at the house helping out and making dinner for tonight. A couple of Max's buddies had get well cards dropped off too. We are always overwhelmed by the support we receive in these times and are so appreciative. We know that many more would like to help, it whether by distance or schedules it isn't possible...that is okay! We definitely feel your love and prayers! As things continue we will reach out if and when we need help, don't worry our pride went out the window a long time ago.

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Another day in the PICU

 

No update yesterday because the doc didn't make rounds until after I had gone home for the day. Max continues to battle high fevers (just now we were at 103). His breathing has been pretty good. He is breathing over the machine, which means that he is taking breaths on his own. Last night they began doing 30 minute trials every three hours on bipap settings, meaning turning the machine down to see how Max would do on settings similar to his bipap. He did really well with those trials. They will continue to increase the trials until it is time to make the leap to the bipap (as in extubate). They also cleaned up and changed out his face apparatus, this new one looks quite a bit better.

As for the GJ tube, food is processing well. We had experienced a pretty drastic slow down with the gtube (mostly due to the sedation meds). The J (straight to the intestines) is working well. We are now working on getting his calories back up and transitioning to his more normal diet (as much as possible via the J). One newly concerning factor is that his most recent chest X-ray shows some small black spots on his lungs indicating scar tissue. The docs are concerned that this may be due to reflux aspiration and we may need to continue with the J tube long term. This would be quite a change in lifestyle as it would require continuous feeds, so this is an ongoing discussion. It would also require some dietary changes.

Aaron and I are very comfortable with the medical team here. No we are not on the cutting edge of medical technology, but the staff has been very supportive of SMA protocol and also looking at Max as an individual not a chart. All and all if I am rating facilities Sacred Heart is quite pleasant. I guess through the years I've learned bigger is not necessarily better. The attending yesterday spent well over an hour with Aaron discussing Max and how to proceed. The physicians are always very honest in regards to the challenges kiddos with SMA face when sick and recovering from illness. Sometimes parents can be upset by a seemingly negative view from the doctors, but I personally feel like it is the medically responsible thing to do. The doctors really can't consider (mostly because they can't quantify) sheer determination and the resilience of Mr. Max. With that being said we have no reason so believe, at this time, that he won't make a complete recovery.

Now we are getting into the busier time of the process. In preparation for extubation they are having to decrease his sedation, so he is much more agitated and we feel awful. He is much older this go around and it breaks my heart to see him trying to communicate and unable to do so. We keep explaining to him that it is only a little bit longer and he can get that pesky tube out of his mouth.

We are so grateful for all the prayers, encouragement, and offers of help. Please continue to pray for Max, most especially for his anxiety as meds are weaned.

 

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Finally an answer

So we now have a culprit...the adenovirus (highly contagious respiratory virus, that has a broad range of symptoms). Basically all that can be done is to continue supportive care while the virus runs its course. Max is still having higher fevers, so the plan is to wait until he has been fever free for 24 hours and then they will extubate. The last thing they want to do it extubate while his body is still battling the virus. Right now Max is having the GJ tube placed, so his foods will be running straight to his intestines. This is an extra relief as his motility has really slowed down in the last 24 hours, probably due to a combination of his body trying to preserve energy and the sedation meds from being on the vent. Given that we are the very least 24 hours out from extubation they have upped his sedation meds a bit to keep him more comfortable and make it easier for him to rest. His heart rate is the best we've seen in at least five days.

Of course, the temporary change to the GJ is not without its own complication. They actually placed a larger tube size in and we cannot return to the smaller size which means that we now have to order new size button kits. So my first stop upon returning to the room was to make sure that the doctor ordered the new size. Previously, Max was a 12 (diameter/gauge) French, 1.5 cm (length) now he will be an 18 French, 2.5 cm. so now we have to get orders for our DME from the pediatrician because if we try to use his smaller buttons then he will leak all over the place. Incidentally, for those who aren't familiar with gtubers we change those out at home. It seemed a little intimidating at first, but it really isn't anything more than like changing an earring.

So that is the update for the day. Thank you so much for the all the prayers and keep them coming.

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Meh...

Okay, so first I want to apologize for the mistakes in yesterday's post. I was in a hurry trying to get the status info out and also doing the post via the iPad, where auto correct can be your enemy. Max was not incubated yesterday...he was intubated...we did not confuse him with a chicken egg or a preemie. Also, attempting this whole IPad blogging thing takes a bit more time and needless to say I have been working on this post all day.

Last night was not bad. Max was able to rest for most of the night. Now that he is intubated his numbers are much more stable. His fever did return and has been back for about the last 12 hours. They have him on two pretty broad spectrum antibiotics. They said sometimes fever can be associated with lung inflammation, but they are also running a viral panel to see if it is a virus causing the fever, which would unresponsive to antibiotics. They have also opted to do a bronchoscopy today. There is a lot of junk in the left lower lobe that the RT is unable to reach and the bonus is they will be able to take what they retrieve in for further cultures, so far nothing has grown bacteria out of the initial cultures. UPDATE: Bronchoscopy went well, they got a lot of stuff out and there is definitely inflammation in both lobes, but mostly in the left. He is sedated, but with the fever and the tube he has been uncomfortable. He is also very frustrated at only being able to respond with yes or no questions, so he is having to be extra patient with us as we try to discern what he wants. Here he is resting.

Thankfully, we have received no flak about Max's diet (which can be a sticking point with dietitians due to a lack of understanding) and the hospital is on board with keeping his feeds going, also a sticking point at times during the extubation process. Tomorrow he will get a temporary GJ (basically will run through his gtube site, but will be put directly to his intestines, bypassing the belly) tube run so that he does not have to go without nutrition during the extubation.

 

Our hope is to extubate on Thursday, but we want to make sure he is at the best point possible for nutrition and rest, so that he will have enough energy to breathe on his own, our SMA kiddos just do not have the reserves that a typical kid would have energy wise. With all that being said Max drives this profile and so often during his illness it is a one step forward two steps back situation. As much as I would like to give everyone, myself most of all a timeline (cause you know me I like a schedule), this is truly out of mine or Aaron's hands. Even upon extubation we can plan to be here a few more days, to make sure that he is able to sustain breathing on his own.

Father James was able to come by and do an anointing of the sick, which was a wonderful blessing. Max loves Fr. James and will probably be a bit bummed that he was zonked while he was here. Thanks to Kathy, our parish secretary, and Fr. James for getting this arranged so quickly after our phone call.

Also, thank you so much for all your offers of help. I promise we will let people know when we need something. My granny and Aunt Tammy came to Pensacola today and brought us all lunch and ran some errands for my mom. It was much appreciated! I hear they also got Max a toy pirate ship, which is the one thing he asked me for yesterday before things got wonky.

Couple of PICU stories...

During intubation Max lost his top front tooth, so on the upside that makes 2 out of 5 baby teeth that can go to the tooth fairy. They felt kind of bad about it, but honestly it is one less thing for us to worry about.

Also, at the risk of sounding superstitious late Sunday night the RT brought a bouquet of get well balloons to the room saying they were donated. Aaron really didn't think to much about it. The next morning we talked to the nurse and the balloons were from a child's room that had passed away the previous evening. So upon Max's intubation we had to change rooms to be closer to the nurses station given his now more critical status, well without even discussing it neither Aaron or I picked up the balloons. So while we we getting settled in the RT comes in holding said balloons and said, oh you forgot these. At the same time both Aaron and I turned around and said NO, DO NOT BRING THOSE IN THIS ROOM. I guess we were both thinking that they were bad omen balloons. Incidentally, after the child passed the night before all the beds in the PICU started alarming, even the empty ones in empty rooms....creepy.

Also, yesterday I spent the afternoon in the emergicare here at the hospital because I have strep throat. Awesome. Needless to say I wasn't feeling so hot. This is not what we wanted added to our plate. Thankful for antibiotics, I am feeling much better today.

So this is us, not really any better today, but definitely not worse. I will leave you with this today...this is the song that played the last two mornings on my way to the hospital, which wouldn't seem to weird but the times were differ, but not different enough for a complete playlist on the radio station. Anyway, this song really spoke to me for fairly obvious reasons.

www.youtube.com/watch?v=zulKcYItKIA

 

 

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It's been a long time...

I'm not gonna lie, it hasn't been a good day. Long story short Max was incubated this morning and is on the ventilator now. It has been almost 4 years since he has required this level of support, so after feeling like we had jumped this particular illnesses worst hurdles we are trying to wrap our heads back around this and how quickly things change for Max due to his SMA. So let me start from the beginning...

Tuesday evening Max had some increased secretions, on Wednesday there were still some extra secretions but his mood was good, so off to science camp he went. Well, by 1pm he was complaining of his belly hurting, but no other symptoms. We started doing sick protocol, running treatments every four hours. He had also developed a fever. By Thursday morning it was in his lungs, but he didn't sound too bad. We called pulmonary and they started him on antibiotics and Tobi nebs to fight pneumonia. We worked on Max for the next two days with little to no improvement. His fever wasn't going away, but we realized that if it was a viral thing that started the fever then obviously the antibiotics wouldn't help. On Saturday evening Aaron and I knew that we had done everything in our power and our respiratory care arsenal to get him better. Our concerns were that his extra dependance on his bipap (more so then typical sick dependance), combined with very high, but brief heart rates (like over 200) and high fevers were a recipe for disaster. On top of everything else he wasn't really getting any quality sleep. We called pulmonary on Sunday morning (because as a hospital frequent flyer will tell you there is no point in attempting a PICU admit in the middle of the night). She called to let the ER and PICU know we were enroute. We gathered all our stuff and headed in. Honestly it was the most seamless transition we ever experienced. The last night went pretty well and Max was resting. He got some good IV fluids in addition to his gtube feeds. Aaron stayed with Max during the nights, so I could go home during the night to take care of Alex. My mom is watching him during the day while Aaron sleeps. So this morning I roll in thinking the worst is behind us, having already mentally jumping through the "what if this is the one he doesn't recover from" fear. I arrived to good numbers and a somewhat chatty kid. So Aaron headed home and we started to read a book, well I could tell he was uncomfortable and his numbers slowly started dropping. I felt his chest and he felt pretty coarse, so I called the respiratory therapist for a deep suction. She got a lot of thick yucks out, but still no comfort...numbers continued to fall. This is only the second time I've experienced what happens next. He would not breathe on his own. The RT had to "bag" him to keep his numbers up. It was intense and there were lots of people moving around, including all three PICU docs. By this point I had .called Aaron to come back. The cal was made to intubate to the ventilator. He could tell us when his mask was on that he still wasn't getting enough air. It is heartbreaking to see your child unable to breathe on their own and it is SMA. Aaron and I sat in the next room cursing the disease that did this to Max. We have fought this demon for over five years and it never gets easier. Max is resting comfortably now giving him the break he needs to recover. During the intubation that got a large mucus plug that was probably the culprit in this instance. That combined with his exhaustion was to much for his little body to fight on his own. We have gone four years since our last intubation, so we are kind of feeling a bit at square one. Max's healing runs the timeline and time will tell how long he needs. We are hoping for a brief stay, but it is really to early to predict. I will try to update daily. Prayers, as always, are appreciated.

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