Linc actually had two trips to SLCH this month, due to his docs not being able to coordinate appointments on the same day, which they always try to do. It really was no big deal since I'm home with Lincoln and he is doing so great in the car these days. (Yay.) It was fine to make two trips. Dan came with us for the first trip and the second was just Lincoln and me.
Feb 10th - Urology
This was our initial visit with the urologist about Linc's hypospadias. I met her briefly in the NICU when she was called in to take a look at Linc. We never really talked much about what Lincoln would require later on, though. I just knew it was something we didn't need to worry about at the time. This appointment was a consult where the urologist looked Lincoln over, now that he is bigger. Then she explained what she thinks he will need as far as surgeries.
I will spare all of you the details, since this bog is about CDH and not hypospadias. I will just say that the doctor said that, conservatively, Lincoln will need three surgeries to correct every thing, each 6 months apart. So that puts everything at over a year from now being complete, hopefully. (If anyone would like more details about the three surgeries, other parents of boys with hypospadias or family/friends, you can email me.) I knew that Linc's condition was pretty severe, but I was still hoping for only one more surgery. Oh, well. Lincoln needs what he needs and I know they will do a great job at Children's. I just want every thing done by the time we should start potty training!
When we returned on the 16th for Newborn Medicine Clinic, Lincoln had an xray done to make sure there will be no surprises internally when he first surgery happens. This was not your normal 30 second xray and Lincoln got tired of being held down after a few minutes. The whole test took about 15 minutes and Linc screamed the whole time, despite all of the cool stickers on the xray machine and the light show the technician put on for him! Poor baby. Happily, though, every thing looked normal on the xray.
I haven't scheduled Lincoln's first surgery yet, (I'm waiting on the doc's office to call me back) but it will be after March 21st. That is when Dan's vacation get replenished for the year and obviously it's important that he be there for his son. The plan for the surgeries will be similar to Lincoln's inguinal hernia repairs - hopefully outpatient, coming home the same day. Of course the doctors will monitor Lincoln's respiratory status post surgery and will keep him overnight if he is having trouble getting back to his baseline after being under anesthesia. Since these will be Lincoln's fifth, sixth, and seventh surgeries, no one suspects he will have any problems.
Feb 16th - Newborn Medicine
After Lincoln's xray for the urologist, we headed over to the Newborn Medicine clinic for a check up. The doctor and nurse were so happy to see Lincoln doing so well, and on 0.5 liters! This is a big accomplishment for Lincoln to be on half a liter. It has been so difficult for him to wean. Hooray, Lincoln! I am to continue turning Lincoln's oxygen down my one tenth every week as long as he does well. See this post. If Lincoln is not weaned off before his next surgery, I should wait two weeks or so afterward to start weaning again.
As you all have read, Lincoln has been having increased wheezing for about two months. Lincoln has been needing three abuterol nebulizer treatments per day lately. (It is very common for CDH patients to have asthma for the first year or two.) Since Linc has become more active, he has had more asthma flare ups. He has what is called exercise asthma which is induced by physical activity or stress. Lincoln is only going to get more active as he gets older. So, to help cut back on some albuterol treatments, the doctor prescribed an inhaled steroid for Lincoln to take twice per day. Hopefully this will stop his wheezing cycles throughout the day and make him feel more comfortable and he will not be held back when he is active. It will probably take a few weeks for the steroid to start working, and I should see that Lincoln needs less albuterol.
Sildenafil has not been proven to benefit CDH patients, but it is thought to help with pulmonary hypertension. Usually it is a replacement for nitric oxide, which is inhaled. Lincoln was on nitric in the NICU while he was on the vent and started sildenafil when his nitric was stopped. Since Lincoln's pulmonary hypertension seemed to be resolved on his last echocardiogram, I weaned him over the last month. Lincoln is now completely off of sildenafil! His last dose was a week ago and he is breathing just fine without it.
Lincoln has been doing great with feedings and hasn't shown any signs of reflux for a while now (arching his back, refusing food, and painful spitting). He also absolutely hates taking his Prevacid, even with flavoring added. Because of this, the doc said it was alright if I want to try stopping the Prevacid and see how Lincoln does! This means Lincoln is no longer on any oral meds relating to CDH! Of course he now has two inhaled meds, but that's ok. Lincoln now only takes a multivitamin drop, which he will continue through age two, when he can take chewables. He has come so far!
Lincoln measured 26.25" long, 15 lbs 14 oz, and HC of 45.5cm. I'm not sure if you noticed, but if you look at Linc's measurements for 7 and 8th month, he only gained 4 oz. Then from month 8 until now (almost 9 months) he gained 6 oz. That's less than one pound in two months. Not great. Granted, these measurements were on different scales, and I usually try to focus on just one scale for comparison. Never the less, Lincoln's dietitian through MO First Steps had noticed this small growth at the beginning of this month using her scale and suggested increasing Lincolns formula concentration to 27kcal to give him a boost. I did not want to make any changes without consulting SLCH so Lincoln is still on 24 kcal Enfacare. I have been pushing the olive oil, yogurt and avocado, though, for some extra fats.
Lincoln's neonatologist was happy with his growth this visit (his regular pediatrician was also happy at our last visit), stating a 12 gm/day gain this past month. I guess it just depends on the scale and when you weigh Lincoln. The doc also pointed out that Lincoln only has three more months on formula. She thinks changing things isn't necessary since Lincoln is still gaining weight and he is happy and active. He's getting what he needs.
Lincoln's growing up and doing well, so we are actually going to skip a month at clinic! We don't return for Newborn Medicine or Surgery clinics until April. At that time, Lincoln will also have a hearing test and a chest xray to check for reherniation of his diaphragm.
No comments:
Post a Comment