Friday, January 14, 2011

I can't think of an eye catching title today

I wish I had something more interesting to post. I love how some of the blogs I read have these clever little stories that are quite creative posted every few days..not me I live in a sea of sick children. You know on facebook how at the end of the year there are the apps that will tell you what your most used words were for the year. Last year it was Logan. This year I did not even try and look, but I certainly know if you tallied up the blog it would be JACOB"S SICK JACOB"S SICK JACOB"S SICK!!!!

So, Jacob is still sick....he has been sick since before Thanksgiving with no sign of getting better. I finally gave in and started him on steroids 3 days ago. Then on top of it all he caught my nasty cold I had last week and now he is not only sick, but miserably sick. Let's do a recap of his last GI appointment from Wednesday. I totally went in with the anticipation that they were going to admit him like they have the last 3-4 times. I've lost track at this point. I had the bags packed in the car because over the phone when I made the appointment I was told he would probably be admitted. Jacob was congested, coughing, wheezing, arching, and just plain being miserable when the nurse practitioner came in to see him. We go over the same crap we always go over medications, how much he vomits, and the "continuous feed" option. I explain that even on continuous feeds he still arches and cries in pain. He still gags and manages to vomit etc. Then they offer the j-tube which would leave him on continuous feeds with no other option. I don't want him attached to a tube all the time. Not only does it suck for him, but it sucks for me and husband. Every time you pick him up your having to worry about the tube, is the battery charged enough if you leave the house, all the odd looks in public, Andrew pulling on it, etc. Even though he can not eat by mouth right now I still want him to have the most "normal" life that he can...whatever that may be. Anyways getting to the point. She brings up the option that I am leaning toward which is a big surgery for him. I think I want him to have a nissen done. This is where they wrap the stomach around the esophagus making a band so not only can he not vomit, but it make it where he can not expel gas. This is the down side to it...causes people who have it done have a lot of bloating etc. I also read that it does not have a high success rate with children with neurological impairment. The nurse practitioner said even though he can not vomit, that kids will continue to dry heave and gag. Well, he is already miserable and does that anyway, I would rather him dry heave then have him covered in vomit all the time. It is better than me coming in his room in the morning to find him severely congested with dry vomit all over him face and up his nose and his chest rattling and wheezing from him choking on his vomit while I am not there to save him. So even though they frown upon having this procedure done, she finally gives in and tells me she will refer us to the surgeon. Then she asks me the same question I have been asking them for MONTHS! When is the last time he had a ph prob study done. So, I respond with NEVER! I continue on that I have asked this every time he has been admitted to the hospital etc. Oh BTW, the ph prob well tell them how bad and how often he refluxes.  She tell me that they must have this procedure done prior to the referral to the surgeon. 2 day later now  I continue to wait for their office staff to call me back to get it scheduled. It is an admission into the hospital for 24 hours. She also mentioned after the test is done that they might try to get the prilosec filled again. Last time we tried to have it filled insurance would not pay for it. Insurance was willing to pay for part of it, but they wanted $180 out of pocket for a 15 day supply. His teeth are turning yellow even though I brush them 3 times a day from his vomiting. I need to get him to a dentist, but if medicaid paying for dental work is anything like them paying for vision stuff then I am screwed. Jacob has private insurance though my job and medicaid as a secondary. My private insurance does not cover vision or dental on him. I lost his glasses a few weeks ago that I paid out of pocket for. I was told medicaid paid for frames, so I decided I would pay out of pocket for another pair and get a 2nd pair through medicaid so I always have a back up. I was told by the eye glass place that because he has private insurance medicaid will not pay....oh well looks like I will be waiting for an income tax return and taking him. Wow, that was much longer than I thought!

Andrew has now had several visits with the physical therapist. She told me when she assessed him that he is only doing 5% of what he should be doing for his adjusted age which is 14 months. She also agrees that he is only at a 9-10 month old level gross motor skill wise. Everyone assures me that he will catch up in time, but its hard to even have play dates with friends who have kids Andrew's age and younger watching them doing things that he can't do. He is getting pretty good cruising on furniture though. He makes it the entire length of the sectional now. He now says no, bye bye, ba ba, thank you, uh-oh, da da, ma ma, all gone, and night night. Oh and tickle tickle tickle.

I'm part of a TTTS support group on facebook. There are some great ladies on there. There is one lady who has recently lost both her babies to TTTS that is making a calender in support of the march of dimes. She is putting all the babies from the support group that were affected by TTTS on the calender for the month that they were born and in the cases where 1, 2 or 3 babies have passed she also puts the day they died. I think this s a great way to show awareness for TTTS. It shows good outcomes and the bad. It shows how the lasor surgery really does save lives. I think every OBGYN office should have one to remind them to look for this deadly disease before it is to late. Not saying my boys outcome would have been any better. I could have lost all 3,but I was never offered a chance to see a doctor that could have done the surgery that could have possibly gave my boys a chance of staying inside longer. My doctor kept telling me I did not have TTTS even though I seen the signs myself and asked him over and over again. Moms expecting identicals in any multiples pregnancy should be aware of the signs. I guess I trusted my doctor to much...I sure wish I would have gotten a second option. By the time my TTTS was diagnosed it was already stage 3 and it was to late to even consider laser surgery. Back to the calender. I am excited for her to get it finished. I really want to buy 1. She went though my pictures on facebook and edited some with words for the calender. Thanks Shannon. In 16 days it will be 1 year since Logan left us.

1 comment:

  1. You have no idea how much I look up to your strength. I have a Jacob and Andy and so do you. And I seriously plan to name my next baby either Logan or Ava... if i by any oddball chance have twins again Idk what I will name them... maybe Ava and Jennifer or Logan and (your husband's name? Im sorry I dont know this) It has been such a huge honor to put your story in my calendar. And it seems like ... its just a calendar to some... but to us TTTS moms its huge. Its a daily reminder of what we go through.... I hope you are doing well... and I plan to keep reading your story. God bless your heart.