Lincoln has been home with us for 6 days now. It has been a huge adjustment for every one that we are still working through. Linc is on one liter of oxygen support, two meds, vitamins and protein supplement. He also now recieves home nursing visits twice a week to monitor his growth and occupational therapy once a week to help with his development and feedings. It is a lot of work round the clock caring fr Lincoln, but it is wonderful having him home and all to ourselves! Dan is back at work, so I am home with the little guy during the day. I have 6 weeks off from work with no solid plan for day care there after. Lincoln will probably still be on oxygen at that point and is vonerable to infection. Even though he is home, he is not yet well, and won't be for quite some time. Minimizing Lincolns exposure to germs is very important since his lungs are not very strong and a small infection could turn into readmittence to the hospital.
Lincolns first pediatrician appointment was last Friday. I took Linc by myself, and let me tell you, it was intense. Lincoln was not happy and desat'ed on the way to the doctor. He was turning blue so I had to stop the car to turn up his oxygen and get him out of the carseat to calm him! We were a half hour late, but everyone understood. He was upset again at the docs office when they had to get him naked and weigh him. (9lbs 4oz - less than 5th pecentile for weight and length). He got one more vaccine (he had five others at the hospital on his 2 month birthday) and we were out of there. I learned a lot about preparation for taking linc out. It will get easier as we go to the doctor more. He has a follow up appt with his NICU attending this thursday. Linc was originally scheduled for next week, but I am concerned with Lincolns fussiness and inability to be calmed, so I called today to move the appt up. It could be nothing, but I want to be sure he is not refluxing or having withdrawal from out growing his morphine dose. I thought it was just his adjustment to being home at first, but he does not seem to be any more comfortable after 6 days. Linc is awake and happy once or twice a day, so we do get opportunities to have some quality time together to play.
The home nursing visits have been fine. The first was last thursday and we had one today. Lincoln gets his vitals taken and weight and any concerns I have are noted and advised. The visits are relayed to the hospital docs and Lincolns pediatrician. Linc is gaining weight nicely. Today he was up to 9-9! He has only had one OT appt so far, and he was fussy and went to sleep soon after his therapist arrived. She was able to evaluate him and we talked about working on his feedngs (shortening them and getting him to burp and be more comfortable), getting linc to tolerate diaper changes (he currently gets so mad he desats and turns a little blue, so you have to be quick!), and tummy time and reaching for objects. Lincoln is on track as far as development for his age. He is starting to hold hid head up nicely when being heald upright. He also is smiling and tracking objects with his eyes. Our next therapy session is TBD as insurance gets back to the therapist (go figure!).
As far as lincolns equiptment at home, it is similar to what he was on at the hospital. He has an oxygen concentrator that he breaths from most of the time. It takes room air and cncentrates the oxygen level to be at least 85% or greater. We also have portable tanks of compressed oxygen for trips outside. The portable tanks can last for about 10 hours on Lincs current liter flow. Both the portable and concentrator have regulators where we can turn up linolns flow for eating, or if he is in trouble (like on the way to the doc!). He also is hooked to a monitor that tells us his blood oxygen saturation in a percentage ans his pulse. Te monitor is not as good as the one he was on in the NICU and it give a lot of false alarms, but it is good to have while we are sleeping. Otherwise, we can just look at Linc to know if he needs more Os.
Hopefully Lincoln becomes more confortable at home and we will see what happens at his appt Thursday. It is just still amazing he far he has come and that he is home!
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