Life in the NICU - Week Three
April 16 - April 22, 2000

4/16/00 5:45 PM

Arran is doing well today. He is still eating through a tube but is digesting well. They took the IV out of his head and moved it to his leg so we should have some pictures again soon. The Orthopedic (the doctor for his legs) called and said that he is just waiting for the ok from his doctor to put the first set of casts on. He is still under his little mist tent. Sometime tonight or tomorrow, he will be going in for an MRI of his head to get a better idea of what is going on inside his nose and mouth.

Arran had a pretty quiet night last night. They increased his food intake from 15 ml to 20 ml and are planning to increase it again at 9:00 am to 25 ml. He's still being tube fed but they hope to try him on the bottle again soon. He has an IV burn  in his right arm that looks pretty nasty. Its red and puffy and swollen and the nurse said that it started to leak fluid last night. They are putting some medicine on that too. He should be on antibiotics for 6 or 7 more days yet. He is supposed to go for a MRI or CAT scan today. I'm going to visit him this afternoon and I'll give an update.

Arran is doing great. I just spoke with the nurse and he is eating well. He's currently up to 25 ml per feeding and they are going to try to increase that to 30 mls in the morning. His nurse told me today that if they don't take him for his CT scan tonight then she will personally take him down tomorrow. Apparently she is getting frustrated that they haven't taken him for that too. They have turned off his heated bed and are monitoring him to see if he can maintain his proper body temperature. They will move him to a regular crib once he has had his scan. Things are going great for him today.

Arran had a busy day today, he took his first field trip. He went for his CT scan. We don't have the results for that yet, several doctors will look at it and then tell us what they see and what they think should be done. He also had to have his IV moved again, unfortunately its back in his head. They have stopped giving him lipids through his IV and hopefully tomorrow they will stop his fluids as well. They will be keeping the IV lock in so that they can give him his medicine only. All of this is dependent upon how he does tomorrow when they up his feeding. He is doing well so far. We tried to feed him again with the bottle again. He got the hiccups half way through the feeding and then fell asleep, we had to put his feeding tube back in and feed him the rest. Mommy also got to give him a bath tonight and help get him weighed. He weighs 5 pounds 5 ounces. Patrick and Gram and Mommy all got to visit him today and hold him. Sorry that we haven't had any recent pictures, we're working on that.

4/19/00 10:00 AM

Arran had a good night last night. They increased his food intake to 40 ml. He is now off of the IV and has a hep lock in for his medicine only. He is currently sleeping his morning away and is being good. I'll update again later tonight.

Arran was feeling much better today. We know this because of his misbehavior. Today he pulled his feeding tube out 3 times. The one time he did it in the middle of feeding and he tried to drown himself. He also took his IV out twice. He was not a good boy today. He did get his splints put on his legs. They stay on for three hours and then they take them off for three hours. He really doesn't like them. I also spoke with the ENT today and we discussed possible surgery options for Arran's nose. (the right side is closed up) Right now we are going to wait for another specialist to run some tests on his ability to swallow. That will determine what type of surgery (if any) that he will need. The ENT doctor also said that he was going to look at Arran's ear canals to see if they are the proper size. We'll know more about all of this later. We do know that the infection that he has been battling is staph. His IV burn on his right arm is also infected with staph and they are topically treating it. The postulate on his left hand is actually a yeast infection that they are also treating with a cream. His last culture for his systemic staph infection was on Sunday and so far it is negative. The nurse said that if in 5 days it doesn't grow anything then they consider it a negative culture. His antibiotics will run 10 days from the 1st negative culture. In other words, if this culture turns out to be negative on this friday then he will be finished his antibiotics on next wednesday. If this culture does grow something then he will be on the medicine longer. I think that is everything that I need to tell you all. Thanks for checking in.

Arran had another busy day. Today he was visited by a therapist who worked with him on sucking a bottle and swallowing. He is still having some problems swallowing and breathing. Tomorrow he will go for an exam/scan where they will watch him swallow and determine a course of action. His physical therapist also visited this evening. She told us that he will not be getting casts on his legs right away. They want to instead do a series of splints and some physical therapy so that he can experience a full range of motion. She also taught us how to exercise some of his major muscle groups. He is currently off of the one antibiotic and will hopefully be off of the vancomicin (sp?) soon. All in all he is doing very well. His IV is in his arm again however it may have to be moved again. The medicine is kind of rough on his poor little veins so they have to keep changing the location so it doesn't burn him, again he will hopefully be off of that soon.

Arran had his swallowing test today. They believe that his swallowing problem has to do with his breathing problem. We are currently trying to teach him how to suck, swallow, and breath and in that order. If we can't get him to do that then they may need to perform surgery to open his other air way. Other than that everything went well. No other reports except that we can now check off another specialist. The kidney doctor has cleared him. He will still get periodic blood work done to test how his kidneys are functioning but if they stay within their current range then he is all clear. He also got his social security card in the mail today, he is now official (according to the US gov't.). That's it for tonight.

4/22/00 10:15 PM

We went to see Arran today and he was doing great. He is getting spoiled. He doesn't like to be in his crib, he prefers to be held and he will tell you about it. We worked on his feeding issues today. He took only 20 ml with the bottle at 3 pm but at 9 pm he took 35 ml. He is getting a total of 50 ml of milk per feeding now. We are trying to feed him with a bottle 2-3 times a day for as much as he'll take before he gets tired. He is improving. Arran had spinal fluid removed today for a follow up test because of his infection. He didn't do too well with the procedure. The nurse said that his heart rate dropped and they had to give him some oxygen. She said that he got angry and held his breath and once they finished the procedure he calmed himself back down and is now fine. Apparently he has a bit of a temper. All in all a good day.