We have had a very stressful, frustrating and worrisome last few days. As you all know Jaxson was in the hospital last week with an electrolyte imbalance. He was taken off all of his medications for 24 hours and then resumed with a low dose diuretic after that. That change worked like a charm for his imbalance and we were sent home Saturday morning.
Well as the day progressed on Saturday we could tell he just wasn’t doing well. The retching with feeds returned, and by bedtime he was breathing fast (60/min). He was still settling and seemed comfortable so we made the decision to wait until morning to reassess. By morning there was no improvement, still breathing quick and not tolerating feeds, so back to the hospital we went 😦
Of course he instantly got admitted, chest x-ray and blood work. Chest x-ray was normal (phew), bloodwork showed no electrolyte imbalance however it did show signs of heart failure and fluid overload, which go hand in hand.
By Sunday night Jaxson was breathing faster than ever (80/min) and very uncomfortable. We have MAJOR issues on how this incident was dealt with (or lack there of) not by his doctor but with the lack of communication TO his doctor. Thats all I will say about that.
Monday morning didn’t come with much improvement but he seemed to be doing better then he had the previous evening. As the day progressed he started to struggle more and more. Yesterday afternoon he ended up falling into a deep sleep and his oxygen saturations dropped to the low 80’s for about 5 min. Alex woke him up right away to stimulate him and he woke up gasping for air with a lot of nasal flaring. His sats eventually started to come up and he caught his breath.
I arrived at the hospital last night around 2000 after a long day at work. I walked in to see that Jaxson was quite swollen in his face and hands and he was very fidgety. Unable to settle and just all around uncomfortable. We asked that the on call doctor be called in to hear our concerns. After all was said and done Jaxson was given an extra dose of his Lasix and he was put back on the oxygen.
Alex said that he slept really good last night, as he got very little rest yesterday with being so uncomfortable. This morning he seems to be doing a tad bit better and the swelling is starting to go down.
Tomorrow he has an appointment with his cardiologist in Calgary and we are very anxious to hear what he has to say. The original plan was that we would be let out on a night/day pass and we would take him to his appointment ourselves. However, given his decline over the last couple of days he will probably be sent on a medivac. Chances are good that they will keep him at ACH until he is 100% better. Yes, that is a pain in the ass for us, but we would rather him be there under the direct care of his cardiologist.
Needless to say we are worried for him. The doctors are very sure it is just fluid overload from the abrupt stop in diuretics (which is blatantly obvious, but I still worry about other issues). They are sure that once they can ‘dry him out’ he will be back to normal. Our biggest worry right now is if this is going to cause permanent damage to his already fragile heart and mitral valve. We were told by the on call doctor last night that that isn’t a concern at all. However I do not have total confidence in that. We will know more once we see his cardiologist tomorrow and hopefully come up with a game plan that works.
Stress levels are at an all time high. Between working 14 hour days, a sick baby, unknown outcomes, and very little time with my family, I don’t know how much more I can take. I arrived at the hospital last night angry, upset, and very anxious. I went to the bathroom and had a total breakdown right in the middle of the doctor’s assessment. It is SO hard being away from the hospital, not being able to personally talk to the doctor, and not being able to see with my own eyes how Jaxson is doing. Alex is doing a great job at relaying info, but it doesn’t do much to ease my anxiety. I just need to see some form of improvement to set my mind at ease.
Please keep Jaxson in your thoughts and prayers. He is honestly hanging in there like a champ, and is doing relatively well considering. His body is doing well at compensating for the extra fluid he has retained, and he just needs to start getting rid of it.