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recovery

April 11, 2018

It's been 4 weeks since my last post which means its been 4 weeks since Asher was readmitted to CHW because his condition was deteriorating and unstable. It also means its been 4 weeks since the first, and only, day (so far) that I have wanted to give up. After our appointment with his pediatrician that Monday morning when we decided he needed to be admitted, I went into autopilot - call work, pack his bags, call my mom, pray, take the trash out because I don't know how long we will be gone, grab something to eat because it will likely be my last actual meal for awhile, pray, remember your phone charger this time, answer the phone because its probably the hospital, drive the well-known route to CHW where you will make your home for the foreseeable future, pray, answer all the nurse's questions, politely shake hands with the doctor that doesn't look a day older than you, try to remember his name, don't cry, seriously don't cry. It wasn't until we settled in for the night and the door to our room stopped opening and closing every 5 minutes that I even really recognized how bad of shape we were in. Asher's normal big, bright eyes were ringed in dark circles, you could see his tiny ribs every time he took a breath and his episodes (periods of irritability and unresponsiveness) were lasting upwards of 6-8 hours instead of his normal 1-2 and he wasn't able to keep anything down. I could see my sweet boy slipping further and further away from me and I was terrified. I was so tired and so scared and I let myself go to a really dark place and if I'm being honest, I'm still recovering from it.

 

This hospital stay had a lot of ups and downs, more than we are used to. We got good news one day and then bad news the next. Asher got worse, then better, then worse again. It would take days to get into everything we found out and everything that happened and really its just too much, so long story short - things aren't great, but they are as good as we can hope (does that even make sense?).

 

We found a medicine that helped with Asher's vomiting (hallelujah) and finally got his GI team off my back about the necessity of a different feeding tube. Asher now takes 100% of his feedings by bottle and has been cleared to try "real" food, which he isn't so sure about (yet). He will likely remain a tubie for meds and because we know his condition will get worse over the years, but this was a huge win for us and my heart smiles every time he spits his banana oatmeal at me (okay, not really). Once we got his feeding intolerance issues figured out, we were moved to the Neurosciences wing to try to get to the bottom of his episodes. After several days on EEG monitoring and an updated MRI, we now know that Asher is having infantile spasms and epileptic seizures in clusters throughout the day and these episodes are likely just his little body's way of coping with the chaos happening in his brain. They immediately started him on some pretty heavy duty medicines, but we know they will only help and not stop his seizures. We also know this is only a short term fix. In the words of the medical director of the wing, "in his 30+ years of experience, the regression in Asher's EEG from December till now is unlike anything he has ever seen." Asher has another EEG in a couple weeks and our team is hopeful that we will see an improvement after a month or so of this medication and also hopeful that as his brain quiets down, his episodes will shorten and he will have longer stretches of alertness. I am hopeful that this will help increase the number of good days we have. Its incredibly painful to watch Asher slip into these episodes and know there isn't anything I can do to help. I am so fearful of the day where he slips into one and doesn't come back to me, so I am relieved that we have found the root cause of them and that we have something that will hopefully help for a short while at least. Last, but not least, Asher has started having respiratory issues during sleep so he was sent home on oxygen. Our little apartment is looking more and more like a hospital room and we added a new specialist to our team, a pulmonologist. We will follow up with them at the end of this month to see if we can find out why he has started having these issues. 

 

All that aside, we are HOME and we made it home in time to spend a week in Arizona soaking up the sun and family time. Asher loved, loved, loved the water and I was so grateful for a week of some much needed R&R. Now, I am back to work and we are trying to get back into the swing of things and our routine. My heart is heavy with the weight of everything we have learned over the past month, but I am working everyday to embrace our good moments and pray through the tougher ones. 

 

 

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