The Tuesday after Brody's surgery (4/10), was pretty much a rest and recover day. His sodium was normalizing and they began feeding him again at 4ml/hr and increased after 6 hours. He's getting more protein and no dialysis was ordered for the day so his surgery site could heal. ...His weight was deferred.
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| puffy little face |
Brody has a rather large team taking care of him. Among the many, many nurses there are respiratory therapists, neonatologists, nephrologists, urologists, child life specialists, occupational therapists, physical therapists, and even speech therapists that are all members of his developmental team. I'd even say the social worker and lactation consultant are members too because whenever they come talk to me to see how I am, they usually end up talking about how "we" are doing. On Tuesday, the OT and PT were just finishing up a session when I walked in. Brody was tolerating it very well...I'm sure it felt good to be stretched and gently massaged after all he's been through. They helped me understand how Brody is adapting to his environment and how I can help him through positive touch. They explained that I am the one constant person in his care and he is learning that through my voice, scent, and touch. They showed me how containment (swaddling, and gentle pressure at his head and feet) helps him feel secure and safe and once I'm able to hold him we can practice kangaroo care (skin to skin contact). I also learned that a speech therapist will help Brody once he gets all these tubes out of his mouth...he will most likely have a bad gag reflex and won't have too much of a sucking instinct. I'm interested to see how they work with him on this.
Wednesday (4/11) marked 1 month since birth. He was pretty puffy and his weight had gotten up to 3.47kg (that's 7.65 lbs...nearly 2 pounds gained in 1 week) ...a LOT of water weight. His feeds were back up to the maximum 16ml/hr and the nephrologist ordered 8 passes of dialysis with hopes of taking off a lot of fluid but without overdoing it so soon after surgery.
Thursday (4/12), Uncle Jason came by for a visit and the nurse noticed Brody had a splotchy rash mainly on his left side. The nurse practitioner said it's most likely Erythema Toxicum Neonatorum...a common, unexplainable newborn rash that shouldn't cause much concern and will most likely go away in 5-7 days. She said they would watch it closely because if it got worse, if he developed sores, or got a fever then it could indicate an infection or virus. ...thanks to the dialysis his weight was down a little (3.26kg) and a fortifier (Similac PM 60/40) is now being added to his breastmilk for an additional 22 cal/ounce. The nurse also spoke to me about possibly taking Brody off the ventilator in the next few days. He would need to be at the lowest possible settings for several days before they could extubate him. Shortly before I left, I noticed that the adhesive tab that was holding the NeoBar in place had come unstuck (the NeoBar fixates the breathing tube). I tried pressing on it but it wouldn't re-stick so I told one of the nursing students and she casually walked over and told Brody's nurse. Brody's nurse casually walked over and told the respiratory therapist. The respiratory therapist then RUSHED over, asked me to hold the bar in place, thanked me for noticing and said "Thank God you were here!". Then asked me to assist him while he put a new NeoBar in place.
Later that night, Adam called to check up on Brody like he does every night. We were both shocked when his nurse told us he had extubated himself. WHAT?!? Apparently the new NeoBar came loose (he was probably pulling on it) and the tube slipped out just enough that they didn't feel comfortable blindly shoving it back down his throat so they just took it out. ...well, that's one way to show them who's boss! I think Brody was just fed up and didn't want to deal with another several days of that tube. The nurse did say that it looked like he was working a little hard to breathe. I just hope and pray that they do not have to reintubate him.
A chest x-ray was ordered for Friday morning (4/13) and showed that his left lung was a little hazy but his blood gas was excellent. They now have Brody on the high flow cannula (at 7 liters and weaned down to 5 liters by the time we talked to the night nurse). His respiratory rate was a little high but that is to be expected since he wasn't really weaned from the vent. He will be watched closely and the nurse said the next 48 hours will really indicate whether or not they can leave him off the ventilator. Hopefully he improves drastically within the next day or two. ...Another upside to being off the vent? I got to hold Brody and hear his sweet cry! He was awake and alert nearly the entire time I was there today. And for good reason...they cannot give him heavy sedation meds since he does not have the assistance of the ventilator. Because he was on highly addictive narcotics for the past 4 1/2 weeks he is now going to get methadone to prevent withdrawals. His rash is gone and since it only lasted a day it was most likely an irritation to something that he came in contact with. They're still giving him sodium citrate and sodium chloride along with the MCT oil and fortifier in his milk... his weight was down to 3.02kg (6.6 lbs). And hopefully they'll get off more fluid with the 12 passes of PD that they will do through the night.
I came across this Bible verse while reading about another NICU family: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." -Philippians 4:6. We are so thankful for both our boys and for all the progress Brody is making. It's hard not to be anxious about the days ahead for every day brings changes and new challenges and so I ask you to please continue to pray for Brody-that his lungs get stronger and stronger every day...that he remains free of infection...that he can come home soon so we can be the family of 4 that we're suppose to be.
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Love, love, love. 'nuff said!
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