Last November I wrote 25 blog posts!! I was attempting to write one a day as part of some blogger appreciation month and I came pretty close. There was a lot happening leading up to Max's evaluation and so the timing worked well to write a lot. When this November rolled around I contemplated whether I would try to write almost every day again but ultimately I decided nothing was really happening to write about. We were living with our long term issues but nothing dramatic or noteworthy was really occurring.
Hahahahaha. Really, have I not learned to think or say things like that?! There are several surefire ways to bring on a crisis in our world:
-Comment about how good and uneventful things have been
-Write positive cheerful posts about how good and uneventful things have been
-Buy tickets to an event or vacation
-Book a photo session for the kids
So as November began and I declared I wasn't going to blog because nothing was happening, I should have seen it coming. Then on my dad's birthday we went on and on about how good the past few weeks had been with Max not being sick. Oh and my mom got him tickets to see Harry Connick Jr. And she booked a holiday photo session for the twins. And then last Friday I posted a very happy post on Addie's 18 month kidneyversary about how far we had come and how the worst was past us.
I mean, really, we were begging for drama!!
Anyway back to where i left off... Last weekend Max had begun to stabilize and by Sunday, he was going stretches without requiring help from the ventilator. For a day we thought this huge scare might actually blow over pretty quickly. They extubated Max late that night and within hours had him just on a canula and then packed him up and moved him out of the ICU and into a normal hospital room. I went to work Monday thinking wow what a crazy weekend but thinking things were heading in the right direction.
Then Monday night, he took a turn for the worse. He started having more issues keeping his oxygen levels up and the cannula was not providing enough help. So no sooner than 3 hours after leaving the ICU, he wound up right back there and on Bipap which is like a non invasive ventilator. It does not involve a tube down the throat but instead a mask. But unlike CPAP it provides actual breaths for them, using pressure. So it's somewhere between a ventilator and CPAP. It is the most support you can get without being put back on the vent. And throughout the day Tuesday he continued to seem very on edge. His organs actually started to act up and his kidney was not working well and his liver numbers were off. Then some results came back showing that the tube that had been down his throat over the weekend was growing bacteria, suggesting he may be at risk for getting sick from that.
So by Tuesday night, I was back to feeling scared and overwhelmed and unsure of whether he was stable or heading back into serious trouble. I took Wednesday off so I could spend the day at the hospital with him and prevent myself from completely wearing out emotionally and physically. And while I was definitely where i needed to be, I will admit I did not leave feeling any better Wednesday night. He had a bad episode dropping his oxygen saturations while on Bipap and I was concerned he was heading towards needing the ventilator again. Having now spent so many days in a row really worried about if he was going to pull through this was really weighting me down.
I went to work Thursday and it ended up being a really rough day at work on top of all the stuff with Max I was thinking about. It was probably one of the worst work days I have had this year and I was definitely close to breaking point by Thursday afternoon as I drove back to the hospital exhausted. Thankfully though I was met with good news, Max had a better day and had come off the bipap machine and was on a high flow canula and seeming to do okay.
I think Thursday evening was really the turning point for Max. 6 days after our initial scare, he seemed to finally really stabilize. Of course we were only very cautiously optimistic and still very worried he would head back the other direction. But he has steadily improved since Thursday night. It's been a reasonably slow recovery but he has made small steps in the right direction each day and none in the wrong direction.
Now he is in the hospital on the main floor, not the ICU, and should be coming home in the next couple of days. Once he stabilized our attention turned from just making sure he was okay to trying to understand what happened and how we could prevent it happening again! And that is the million dollar question right now. I really wish I could tell you that we totally understood what happened and that it was a rare bad bug that we feel confident would never happen again. But unfortunately that is far from the case.
We honestly do not have a really simple or clear answer as to what caused him to get that sick last Friday. They have done tons of tests but not got a positive result for anything. In absence of anything else, we are thinking he must have had a minor cold that did not even have any real symptoms yet. Al had a cold the weekend before and Addie has been battling a runny nose so he definitely could have had a cold. But we never so much as wiped his nose or noticed him coughing more. Hardly an obvious culprit...
What we do understand is that Max has a few issues that make him susceptible to running into serious breathing trouble. For starters, Max doesn't breathe a lot. He never has. We used to watch their screens in the NICU and Addie would breathe a normal 30-40 times a minute (babies should breathe more) while Max would breathe only 10 times a minute. Before we saw any other signs of CP, this low respiratory rate stood out. He seems to manage to keep him oxygen up and cope with his low breathing rate but he pretty much breathes the minimum he can get away with. And we suspect therefore that his carbon dioxide levels may always be a little elevated, or at least rise quite periodically with any stress. He is okay with them a bit higher but it means he doesn't have a lot of room to get worse. He basically sits on the fence of being okay all the time. It would not take much to tip him over.
On top of that kids with severe CP have issues with 'secretions' meaning that they can drool some and not always have strong swallows making even keeping up with their own saliva tricky. If you add in a cold with some junk in his throat and just keeping up with his breathing with all that extra spit happening can be really tricky. It's actually one of the biggest issues that kids with CP can face as they get older and it can lead to these kind of dramatic respiratory problems.
Then finally Max doesn't have the ability to compensate or react naturally when he does start running into trouble. When Addie was really sick with heart failure, she was breathing 100 times a minute. It was really sad but it was actually an adaptation. She was breathing more to make up for her breaths being less effective and her heart needing more help. She did not decide to do this because she is a genius with excellent problem solving skills (although of course she is that!) but her brain just received messages that she was in trouble and needed help and triggered that reaction. It is just our bodies normal survival mechanism. Unfortunately with Max's brain being compromised, this mechanism just does not work. And we have seen evidence of that several times. When he starts running low on oxygen or high on carbon dioxide, his brain does not send a signal to correct and he behaves completely differently that a healthy child would in such a situation.
And this last piece of the puzzle is probably the most frightening because it is why things can escalate so much faster. His body doesn't give him any extra time by working against the situation. The paramedics were blown away by this. They could not get over how sick he was and that he still wasn't breathing more. It's very unusual and makes predicting things with Max very hard.
So it seems like a cold may have caused some extra snot and junk that played up with his natural tendencies to not breathe a lot and not compensate and created a perfect storm for a respiratory disaster.
Now his cold has cleared up and his body has recovered from the events and he seems to be close to back to his normal, although still somewhat more agitated. He can come home and he would presumably go back to how he was before which would be seemingly fine but clearly way too close to disaster for our comfort or his safety. So, we are in the process of figuring out what we need to do to get Max a little further away from the fence of being okay and give him more support to prevent him getting that sick in the future. So far, we are starting him on medication to actually reduce his 'secretions' meaning he would actually make less saliva so that he would not have to work so hard to swallow it. We have applied for home nursing and he will have his own nurse in our house for however much he ends up getting approved for, but we are looking at probably 12 hours a day to keep an eye on his while he sleeps and also to suction him and keep working on preventing the whole secretions building up dilemma. The nurse would also help up with his not having a lot of compensatory skills because it would be someone else to watch him, take his vitals and check his oxygen and help us catch things as early as possible.
The remaining piece of the puzzle so to speak would be to see whether we need to solve his high CO2 not breathing a lot issue. One option would be that he actually sleeps on BiPap every night. While he asleep, the machine would make him take more breaths and bigger breaths and help him clear out a lot of carbon dioxide and prevent his levels from creeping up or elevating at night. It would in some ways be a big deal but it is not invasive and definitely a better step for him that a tracheotomy and home vent would be so we are interested in the idea. His doctor told us he may also have more energy during the day and feel better for having better nightime breathing.
So that all sounds good but turns out insurance companies are not crazy about buying people expensive breathing machines without being sure they are necessary (personally I haven't heard of a lot of people trying to sleep on breathing machines for fun, but okay)- so in order to get one, he needs to go to a sleep lab and have his sleep patterns on and off the machine assessed. Which is good because we want to be sure this machine would be the best step for him before committing to it ourselves. So sometime in the next couple of weeks, once home from the hospital, he will visit the sleep lab and we will determine the best thing for him there.
And that is where we are at now. So incredibly relieved and grateful that he has made such a good recovery and so happy to see his smiles and know he will be home with us soon!! And then just trying to make good decisions for his future safety. We are shaken up by this event and I know it will take me a while to sleep well again once he is home. And we also know that although we will make these changes and pray they really help Max, he is a fragile little boy and he will have medical issues in his life. So we are just committed to enjoying his good stretches, praying for him every single day and night and being alert to changes in him and determined to do the best we can when he does get sick and these issues occur. If you have made it through all this, you are truly impressive because I know it has been long and medical! I just wanted to explain where we are at and what all has happened and will be changing going forward! I will write again soon and talk more about my feelings and how I have coped with all of this and how we are dealing with all of the changes coming. I know some people are more interested in the medicine and some are more interested in our emotions and experiences so I try to include both on my blog!
Thanks again for the prayers and support!!