Friday, July 3, 2009
We saw the pulmonary doctor at Children's a few days ago. She was very sweet. It's always nice to have a good person working with you and your child. However I am beginning to feel that we have too many people working with us. Pulmonary, GI, endocrinology, neuro surgery, neurodevelopment at Children's and at home, OT/PT, lactation, dietitians, neurology and a pediatrician. I guess at least he does not need urology and cardiology. As he gets better and older I am hoping that the number of specialist decreases. Oh well at least we have health insurance so that he is provided the necessary care. I have had some problems getting his medication for GERD, reflux. It has been a huge hassle however I have one contact person at the Naval Hospital Pharmacy to contact about this issue now. It has to be compounded because his NG tube is a 6 french. In order to use the tablets he needs an 8 French NG tube. The pulmonary doctor thinks that he will outgrow the need for an NG tube and will never need the bigger size. He is taking a lot more by breast or bottle however his carbon dioxide level was high. The body exchanges oxygen and carbon dioxide. This is due to his chronic lung disease. Premature babies develop scar tissue in their lungs which makes breathing more difficult. We are cutting his caffeine dose 1/2 for one week then discontinuing it. Yeah one less medication to worry about. Also if he is awake and with us he can be disconnected from the monitor. In fact most parents don't keep their kids connected all the time. I did because I thought the the information could be downloaded and I wanted to show compliance. I think the equipment limits him developmentally any ways. Yesterday we met with lactation consultant and for some reason I became very emotional. I think it's because her office a few doors down from where I was triage the night I delivered. Maybe some post traumatic stress situation. Apparently she is usually called in for difficult or premature deliveries. She was not called in for my delivery and as a result all the staff now know to call her in. Oh well that can not be changed now however another premature baby could be spared the severe brain bleeding that resulted from the difficult intubation. His oxygen tank ran out and his monitor was alarming, indication that he definitely still requires oxygen. I could not find my car , went to both parking garages and was very stressed. I finally got to the car and when I switched out the oxygen tanks something was wrong with the regulator. I finally went to the ER for assistance. His color was good majority of the time however at one point he was a little gray. It felt like an idiot because I put the regulator on backwards, however I saw a baby who needed oxygen so I quickly was trying to get the equipment ready for him. Several people offered to help me however I was too over whelmed to even know how they could help me. The ER staff determined that the regulator had a leak however it was safe for me to drive home. They replaced the rubber stopper. I am a nurse so I should know how to handle this however in the hospital it's automatic. You just turn the oxygen on. During this time I was already upset with the mention of a G-tube, surgically implanted tube that delivers milk to his stomach. I don't want this. I know the NG tube contributes to his reflux and the G-tube would minimize this risk however there are other risks involved: infection, breathing difficulties from the general anesthesia and scaring if it ever removed. The mention of this made me feel like my child would be tube feeding dependent. I am determined to get him off the tube feeding. We went the whole weekend with only breast or bottle feeding. However when he was sleeping at 3AM Monday morning I decided that he works very hard to take almost 3 oz so I will give him a break. Sometimes it takes him over 1 hour to drink 3 oz. His breathing becomes labored and he gets tired. However we are working on this. Over the last couple of days he seems to struggle less with oral feeds and to be interested. The doctors expect a weight gain of 1/2 pound to 1 pound per week. Wow I might not be able to use the size 1 diapers. It has been revealed to me that God does work. One day after our first outpatient appointments the receptionist at Children's said "lady with the pony tail", (that's me, have not had my hair cut in a year now) I can help you. We got to talking and I shed a few tears. She was a premature baby herself, born 8 weeks about 50 years ago. Her mother slipped on the ice in January then went into labor. She has cerebral palsy however it's barely noticeable. She does walk a little different and has some weakness however she has worked at Children's for 24 years, her speech and vision are fine and she is a smart lady. She is also very kind and thoughtful. She found me when we came back another day and gave me a card. One word of advice she gave me is "my mother always treated me like a regular child". I find this difficult to do when he is hooked up to different pieces of equipment however every day I see more and more normal baby behavior. I am not sure if he can see but he definitely can hear. He needs to eat now. Seems like that is how we spend our time. I envy the mothers and babies who don't have this struggle.
Posted by Karen Goddard