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Day 19- Darn roller coaster again.

So after surgery he was doing okay for a while, but last night he had many issues. He had fever spike last night and apparently was in a lot of pain. They had to give him extra doses of pain medication to keep him calm. When he came back from his first surgery he was sedated big time and did not wake up till almost 36 hours. However after this one, he was awake even before he came back to the NICU.  So I think the pain finally caught up with him.

This morning when we walked in for rounds he was asleep. The morning nurse mentioned to us that he had not required any additional pain medication since 7 am. Then at about 10.00am he woke up and seemed very contend, except for his intubated tube. He was determined to pull it out. The nurse immediately freaked out and wanted to dose him up again. The mama and papa bear in us woke up. I did not think he was in pain, he just hated that darn tube down his mouth and wanted out. The doctors were at the bedside of the baby right before him on their regular rounds, so I asked her to wait before she dosed him up again. He NEEDED to be awake to be extubated and he was. So I wanted the docs to see him, and did not want him drowsy again, especially considering he was not in pain. She did not listen to him and was getting the help of another nurse to give him that shot. I interrupted again, must to their displeasure, and asked them to wait. By this time the doctor came over and I told her my concern.

She agreed with me. She explained to the nurse that, him trying to pull his tube out cannot be interpreted as pain it just means he is well enough to be extubated. She asked them to hold off on the drugs and made immediate arrangements for him to be extuabted, and he was 30 minutes later. I then told the nurse that I was not questioning her duty, but just that I have seen him in total pain the past three days and this was not it. She was nice at that time and said she understood and that as parents we should state what we think, and told us it was a good call.  I am so glad we spoke up and our boy got extubated instead of being sedated again. I have realized how important it is to be your child’s advocate and sometimes we parents just know more about our child.

Dr. Sinkin who came on rounds this evening mentioned he maybe ready for the nasal cannula, so let us see how soon that happens and we can start to see my boy’s cute face again.

So coming back to the roller coaster, now they are concerned that he may be developing an infection. He has various sites which can be the issues- his central line, his chest tube and the surgery site itself. He is on antibiotics already and they have ordered blood culture, results will be in tomorrow, to see if anything comes up.

His hemoglobin was low today and they had to give him extra blood to help with that. I do hope his blood levels come up and he feels better tomorrow.

All these issues mean longer hospital stay, which is long to begin with. I do hope these issues resolve soon and we can start feeding (which will not be for a week atleast) which is an uphill battle in itself.

Ajit , Avy and in laws left tonight. Avy is going to turn fours this Saturday. I hope to be back home for his birthday. All this roller coaster is making everything very hard. As Avy left today, he was saying “On saturday, Amma, Thatha, Paati and Amik will come home for my birthday”.

I told him , “Amik will not come home baby, he needs to get better”. Avy exclaims ” Oh noo, he will be all alone in charlottesville with the nurses?”….Ajit and I nothing to reply, but tears. I have promised Avy that he can have another birthday party when his little brother comes home.

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One comment on “Day 19- Darn roller coaster again.

  1. May God give Atiksh the strength to deal with
    This uphill battle of learning to eat. It’s so hear wrenching to hear his suffering. Don’t worry he is a champ and punch this infection away.
    Lots of love
    Aparna

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