Of course with good news, there is some bad news. He seems to have episodes of arrhythmia. They may put him on medication for it.
This poor child cannot win though. Thank goodness they are taking the tube out today because his lips are blistering from it. :(
They will also be weaning him off the hydrocortisone and epinephrine and spacing his methadone and ativan further apart. I get to hold him today hopefully! Fingers crossed!
I will update later.
ETA: The antibiotics have brought his white blood cell count down so they are positive it was either a throat or lung infection. His lungs are pretty clear today and no sign of a fever.
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| Look at that friggin' face! I love it!!! <3 <3 <3 |
Charles is officially off the ventilator!!! He sounds a little junky, but that is normal because of the secretions his lungs produced when he was on the breathing tube. They are going to let him rest for a while, and in a few hours, they will test his gases and see if his O2 and CO2 levels are okay, and then I can hold him for the first time in almost two weeks!!! Later on tonight, I can try to feed him with the bottle. (The feeding tube will stay in for a bit longer until he is tolerating the bottle.) They said he might suck back the first bottle very well, and then the bottles after that may be a bit more difficult to get him to eat. I have faith in him though. :) I am so friggin' happy! He doesn't want anything to do with his binky though. lol They thought he might want it, but it's like he forgot how to use it. lol I just want to hold him!!! Hopefully, we can go home sooner than we thought. Maybe we WILL be home for Easter!
I went to Brigham and Women's today to talk to a counselor. I found it helped. Also I had a few moms on various websites I have been browsing are reaching out via email to me. It's really nice to have some other moms to talk to, ones who have been in this situation before, even some with ALCAPA babies! I visited with Timithy for a while. We had dinner together in the cafeteria. How romantic. lol We spoke a little about the future and what will be happening as far as what needs to be accomplished for Charlie's discharge and what will happen after discharge. (He will be set up with Early Intervention because being here, for even just a month, will delay some things. Just a small hiccup in plans. My little hiccup man <3 They will also have him see a cardiologist in New Bedford quite often, and Charlie will be seeing a specialist here in the hospital every so many months.) We came back to the room, and Tim visited with Charles even though he slept the whole day. I was told by the nurse that removing the tube is a very exhausting event in recovering cardiac patients, especially infants. He slept ALL day. I saw less of his eyes today compared to yesterday. They are weaning the methadone, ativan, heparin, hydrocortisone, and epinephrine off. They should all be stopped by tomorrow. This will help introduce him to the meds he will be on at home on a daily basis from now until maybe a year from now. He will be on Captopril, aspirin, and lasix and also a med to help with the arrhythmia. The Captopril will take the place of the milrinone he is on now, and the aspirin will replace the heparin. He is only lasix right now so that won't change. He needs to start eating again too. The nurse tried the bottle with him for the first time, and apparently, he did awful with it. He was all over the place and couldn't really suck on the bottle. The poor thing hasn't eaten in almost 10 days! Why do you think it's so friggin' hard for him?! It seems we are almost done with out stay here in Children's Hospital. Thank goodness. I'm sure there are little things I will miss, like the burgers, the helicoptors, the clowns who sing in the elevator, the huge ball contraption in the middle of the lobby, but I will be SO relieved to be out of this place and home with my family. I texted Tim that I was sorry we had been fighting, and we were just really stressed, and I miss him and Addison.
I am going to bed tonight after a lovely conversation with Tim's grandmother.
Good night! I will write again tomorrow!
I went to Brigham and Women's today to talk to a counselor. I found it helped. Also I had a few moms on various websites I have been browsing are reaching out via email to me. It's really nice to have some other moms to talk to, ones who have been in this situation before, even some with ALCAPA babies! I visited with Timithy for a while. We had dinner together in the cafeteria. How romantic. lol We spoke a little about the future and what will be happening as far as what needs to be accomplished for Charlie's discharge and what will happen after discharge. (He will be set up with Early Intervention because being here, for even just a month, will delay some things. Just a small hiccup in plans. My little hiccup man <3 They will also have him see a cardiologist in New Bedford quite often, and Charlie will be seeing a specialist here in the hospital every so many months.) We came back to the room, and Tim visited with Charles even though he slept the whole day. I was told by the nurse that removing the tube is a very exhausting event in recovering cardiac patients, especially infants. He slept ALL day. I saw less of his eyes today compared to yesterday. They are weaning the methadone, ativan, heparin, hydrocortisone, and epinephrine off. They should all be stopped by tomorrow. This will help introduce him to the meds he will be on at home on a daily basis from now until maybe a year from now. He will be on Captopril, aspirin, and lasix and also a med to help with the arrhythmia. The Captopril will take the place of the milrinone he is on now, and the aspirin will replace the heparin. He is only lasix right now so that won't change. He needs to start eating again too. The nurse tried the bottle with him for the first time, and apparently, he did awful with it. He was all over the place and couldn't really suck on the bottle. The poor thing hasn't eaten in almost 10 days! Why do you think it's so friggin' hard for him?! It seems we are almost done with out stay here in Children's Hospital. Thank goodness. I'm sure there are little things I will miss, like the burgers, the helicoptors, the clowns who sing in the elevator, the huge ball contraption in the middle of the lobby, but I will be SO relieved to be out of this place and home with my family. I texted Tim that I was sorry we had been fighting, and we were just really stressed, and I miss him and Addison.
I am going to bed tonight after a lovely conversation with Tim's grandmother.
Good night! I will write again tomorrow!
Were you able to hold him? I sure hope so!
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