Day +42
WBC 5.4
The stress continues. Mike and I both feel like we could explode into a million pieces at any moment. Max ran into some breathing trouble last night and has dipped quite a few times today. Just what we were worried about and why we were fighting to keep the one to one nursing care. Yesterday evening Mike was told that Max would be on two to one today, but his desaturations have kept him one to one at this point.
Max is now getting breathing treatments every 2 hours. So you know what Max is going through, here is his current respiratory plan:
Albuterol or Xopenex nebs every 2 hours Atrovent every 6 hours. Deep suction every 2 hours (a suction catheter is stuck down his nose or throat to try and get him to cough) BD's every 2 hours (the RT uses a plastic mask and hits Max repeatedly on the lungs to loosen the secretions) Pulmicort (inhaled steroid) 2 times a day
As you can imagine, Max does not get much sleep, but the doctor said it is a necessary evil right now if we want to keep him off the vent. He is coughing spontaneously sometimes and hopefully he will start to do this more.
His diapers have remained the same, and tonight his feet seemed red, so we will have to discuss this with the docs tomorrow. We are very anxious to see a change and get some reassurance that the steroids are working.
I got to hold Max 2 times today! I got to hold him very briefly when he was extubated last time, but Mike hasn't held him in about 4 weeks. I am sure Mike will get a turn tomorrow. He did well both times I held him. He is so weak that it is like holding a giant infant. He has no head control yet. He is moving more in general, and is more awake too. He tries to get away from the nebs by shaking his head and he closes his mouth tight when they try and get in his mouth to suction. The doc gave the okay for Max to suck on a toothete (tiny sponge on a stick used to clean his mouth) soaked in 5cc of water every 8 hours. Seeing as he hasn't had anything to eat or drink in 4 weeks or so, he absolutely loves it. He also sucks down his oral meds. He is so thirsty! I cannot wait until he can drink a bottle again. He is so skinny that his nickname Bubba hardly fits anymore. No more Bubba cheeks, legs or arms. Max started cutting a new tooth while on the vent. At least he can get some narcotics while teething!
In other news, Grace's friend Kendall was discharged from the hospital today. She is back at the RMH and she and Grace have already played together. They also posed for a RMH Christmas card. I am really hoping the pictures come out. If they do, I think the RMH will raise a lot of money from them from me alone!
Max is getting fussy so I better get going. Pray for clear lungs, healthy gut and strength.
-Margaret
The stress continues. Mike and I both feel like we could explode into a million pieces at any moment. Max ran into some breathing trouble last night and has dipped quite a few times today. Just what we were worried about and why we were fighting to keep the one to one nursing care. Yesterday evening Mike was told that Max would be on two to one today, but his desaturations have kept him one to one at this point.
Max is now getting breathing treatments every 2 hours. So you know what Max is going through, here is his current respiratory plan:
Albuterol or Xopenex nebs every 2 hours Atrovent every 6 hours. Deep suction every 2 hours (a suction catheter is stuck down his nose or throat to try and get him to cough) BD's every 2 hours (the RT uses a plastic mask and hits Max repeatedly on the lungs to loosen the secretions) Pulmicort (inhaled steroid) 2 times a day
As you can imagine, Max does not get much sleep, but the doctor said it is a necessary evil right now if we want to keep him off the vent. He is coughing spontaneously sometimes and hopefully he will start to do this more.
His diapers have remained the same, and tonight his feet seemed red, so we will have to discuss this with the docs tomorrow. We are very anxious to see a change and get some reassurance that the steroids are working.
I got to hold Max 2 times today! I got to hold him very briefly when he was extubated last time, but Mike hasn't held him in about 4 weeks. I am sure Mike will get a turn tomorrow. He did well both times I held him. He is so weak that it is like holding a giant infant. He has no head control yet. He is moving more in general, and is more awake too. He tries to get away from the nebs by shaking his head and he closes his mouth tight when they try and get in his mouth to suction. The doc gave the okay for Max to suck on a toothete (tiny sponge on a stick used to clean his mouth) soaked in 5cc of water every 8 hours. Seeing as he hasn't had anything to eat or drink in 4 weeks or so, he absolutely loves it. He also sucks down his oral meds. He is so thirsty! I cannot wait until he can drink a bottle again. He is so skinny that his nickname Bubba hardly fits anymore. No more Bubba cheeks, legs or arms. Max started cutting a new tooth while on the vent. At least he can get some narcotics while teething!
In other news, Grace's friend Kendall was discharged from the hospital today. She is back at the RMH and she and Grace have already played together. They also posed for a RMH Christmas card. I am really hoping the pictures come out. If they do, I think the RMH will raise a lot of money from them from me alone!
Max is getting fussy so I better get going. Pray for clear lungs, healthy gut and strength.
-Margaret
posted by Mike Ciacciarelli
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