So off course what should have been a short stay will turn into another 2 week stay. Ugh, Ugh.
We still have no idea why Avery was so lethargic on Monday and his heartrate was so low. Some drs. think it was from the increase in clonodine (med) and the other half think it was a seizure. Who knows but certainly it is very frustrating. So by Tues. he is alert and looking really good but then he starts getting junky sounding and everytime he cried which was everytime I left the room, he would drop his oxygen levels and turning blue. So pretty much I was bound to his bed for the next day and a half. Still no explanation from the drs. Just more of me suggestions things. Wed. he starts with 102 fever which would not go down at all. The ended up using cooling blankets to get it down. Today some of his blood test come back and apparently he is brewing a blood infection requiring IV antibiotics which will require about another 7 days. UGH, UGH, UGH.
Man, this is just REALLY getting hard and frustrating. Since December we have not been out of the hospital for more than 3 weeks straight. That is really sad. Problem is, is we really have no control over it so we have to just go with it. I just want this boy to start getting well but it does not look like he is on that path at all. Next week we are meeting with Pallative Care to take about his "Do not rescuitate" or "Full Code" status. I will tell you, I would have never thought that when we decided to have kids that we would being talking about this a month before Avery's 2nd birthday. Just really heartbreaking. Some days I think, what if he dies today, will I be able to get out of bed. The reality is that I will b/c I have 2 other kids and a husband. Honestly, the more he is hospitalized, the more it is a reality for us. It is just a matter of time that my little guy will not make it home.
Next weekend is Rick and I's 1o yr. anniversary. Did you know that 85% of marriage with special needs kids end in divorce. Rick and I have 2. Guess we have beat those odds. We are scheduled to go away for the weekend, thanks to another angel. Please pray that we are able to go away and Avery is home and well. I hope I did not make you cry, it's just what is inside of me.
1 comment:
dear nikki,
you did make me shed some tears. as a mom who lost a son, i can feel your pain. although it was not the same way as you, it is a very difficult, life changing experience. and you will get out out of bed b/c the other 2 need you, and you husband will need you. But always remember to allow yourselft to stop and appreciate all the little things, miracles in your case. love ya and always thinking of you. please call if you need anything. please remember to reach out to people who really love you and rick.
love, maria
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