Update....

So I guess our dream of home didn't last very long. Right now Thurston is at Dell PICU and is stable but still on very high oxygen of 15 liters comfort flow which is pretty much equivalent to Sipap/CPap but he can still be on a nasal cannula. He is on 20 ppm of nitric oxide which worked immediately to help bring him from satting in the 80s to satting in the 90s. They are doing all sorts of breathing treatments and changing around his medications.


Now to how it all happened....Well on Wednesday night our Nurse(yes we had no idea we were going to get home health care which is beyond fantastic, they set us up for 2 weeks at 16 hours a day and then to get reevaluated to see if we needed it beyond the two weeks unfortunately we didn't even make it 3 days ugh). Anyway, the nurse and I were trying to feed him and I stupidly tripped over his cannula cable which in turn tipped over his water humidifier which is hooked up to the oxygen concentrator and suddenly my poor son basically got a huge gigantic noseful and lungful of water, much like a neti pot but it was alot alot of water. He gagged and choked and desatted quite a bit during this event and I frrrrrrreeeeeeeeaaaaaaaked way out. Thank goodness the nurse was there to attend to the situation and after about 5 minutes and lots of nose bulb suctioning we were able to get Thurston stable again. Well I thought about taking him to the hospital that night but he seemed to be satting great and not breathing bad and we happened to have an overnight nurse that night so I wasn't too worried. The next day was Thanksgiving and he was doing great, at 1 liter satting in the 90s and was calm and playful and smiley etc. Well the day nurse left and we did not have a night nurse(the first couple of nights we didn't have any nursing care and boy oh boy was that stressful...Thurston is on over 13 different medications delivered 4-6 times daily, 3 nebulizer treatments a day and 1 liter of oxygen on a cannula he continually tries and succeeds at taking off and so pretty much you HAVE to stay up all night no ifs ands or butts or Thurston would be in big trouble....basically what I am saying is we took the hospital home with us so the nursing care as we have found out is essential until Thurston can get down to a much lower flow of oxygen or even off of it all together...we also feed him by gtube but that is a piece of cake so if that is all he needed and maybe a few meds it would be no big deal but we just cant chance Thurston desatting, without oxygen he goes down hill extremely fast). Anyway, My mom was in town and she was rocking him and suddenly Thurston started choking gagging coughing and snorting and a ton of saliva and foam came out of his mouth. I grabbed Thurston and started to suction his mouth with the bulb syringe. He seemed fine but suddenly he started to desat. I had Chad put him on our tank oxygen that goes up to 5 liters(the oxygen compressor only goes up to 1 liter) and within 5 minutes we had him on 3 liters and he was still satting in the low 80s. I knew right then and there that he had aspirated so we called 911. This time though for some reason I didnt freak out too much and remained pretty level headed, I guess the adrenaline took over. We got to Dell and he was initially put in the intermediate care unit on 3 liters thinking that maybe he was only going to need a few days to recover. Then suddenly started desatting again and they changed him from low flow 3 liters to a comfort flow 6 liters...then 8 liters...then transferred him to the PICU and then up to 12 liters. Then Chad spent the night on Friday and he seemed to be stable, then I spent the night on Saturday and he just seemed to start going down hill. The doctor decided to put him nitric oxide as that is used for Pulmonary Hypertension. It worked pretty immediately and he was able to get back into the 90s in his saturation levels and they had the sipap machine on standby just in case. Today they put him up to 15 liters to see if that helped at all to bring his saturation level up to the high 90s but they have not seen any results yet. They really thought he would be getting better by now but his xrays look pretty bad so he could be in the hospital for quite some time, maybe even for a few more months. He could also suddenly start to improve and be home in a few weeks, no one really knows for sure.

Thank you for all of your love care and support. This process going on almost 9 months now(10 months if you count all the pre-pregnancy drama/bedrest stuff) is absolutely emotionally, physically, financially exhausting. The most exhausting part is how life threatening Thurstons Chronic lung disease is. This is about the 7th time he has had a close call. And every time your life comes to a halt. Literally you have to drop everything, bills, events, phone calls everything just grinds to a halt and then when things stabilize you are left with dust settling everywhere to try and sort through. I can deal with ongoing appointments, therapies, all of the things that I was working on in that short period of time he was home, but this constant constant crisis mode might just end up putting me into the crazy house. I just don't know how much more I can take really.

We have an appointment tomorrow with the palliative care team. Now before you freak out(believe me I freaked when I heard that) they actually deal with alot of things, not just when a person is dying. They help families who have chronic health issues and where they for see the patient and family being in the hospital for a long time(OK why then did we not see one a long time ago lol) Anyway, this will not be the last time Thurston will ride in an ambulance, nor the last time that he will be close to teetering on the cusp of life or death. My son is no longer a preemie. He has moved on and now is classified as chronically ill. I think I have been in denial for so long. I wanted him so much to just have those normal preemie issues but now I just have to face the facts that he has a very severe, life-threatening chronic illness and we need to adjust our attitudes and act accordingly. The good news though is that hopefully in a few years he will eventually grow if not out of his lung issues, but at least they will improve enough that he will have a better quality of life, because right now, he is absolutely miserable. Even on the 1 liter he is still not the happiest baby in town and being on 13 different medications also screws around with his body enough to where he absolutely feels the effects(nausea, dizziness, pain jitteryness etc). He also is still dealing with the most horrible incessant cough he has had since about july of this year which sometimes is so painful it makes him cry. There is a rare moment when he is not dealing with physical pain or discomfort. I wish there was something I could do to take it all away, but only time can do that.


I will update when I can but right now we are just taking it one day at a time. Also, I threw my phone on the ground in anger. I just got a bad phone call so I took it out on my phone. Needless to say I have lost every ones phone numbers so if you could text me(I have the same number) with your name and phone number so I can update it in my new phone that would be great. Thank you so much also to my mom who helped so much and who listened to my crazy rants, hugged me through my tears, and supported us through all of this and also to everyone who has donated so much time energy and money into the ongoing auction for Thurston especially to Melanie for all the work and dedication she has given to it. We couldn't be more appreciative to all of you for continually support us on this very long hard journey.