Sometimes I'm so thankful for my husband and his strength and character, because he is not afraid to push back when deemed necessary. It's something that I apparently do not do, surprisingly. Upon learning of the g-tube treatment, my husband said something like, 'oh hell no'. Once he stated it and I thought about it further, that process really is something that's beyond our simple parenthood background I mean, I may pretend to have a white coat and my free plastic stethoscope, but really, I think the closest I got to any sort of medical type classes in college was physics, and I think I got a C. So, once the man said it, I started feeling it too. He wrote our pediatrician an email asking him for his help and guidance, as neither of us felt comfortable with this medical task. I still get queasy when think about what I saw yesterday. So, we left it at that, knowing Andi Bean's pediatrician is on all the time, we knew he'd get back to us very quickly. Andi and I stayed up rather late for us, and we all slept in until 7. That was huge for us. However, at 4 a.m., I awoke not with the fear of the 4 a.m. rooty-tooties that seem to strike at that hour every day. Seriously, it's like the rooster in our house, or an alarm clock, and it makes her cry. So, instead of that, I awoke with the gut in the throat fear wondering what the hell am I supposed to do when I need to change that 'bandage'? It's a two person job, at least. As one person has to hold down arms and legs, while the other person removes, blots, cleans, replaces. Ewh. So, I ended up coming upstairs at 4 a.m. to write our pediatrician my own note asking for help, as I can't do it alone. When we awoke for the day and the laptop got fired up, I found two replies from the Dr. stating we should come in and let him see what's going on. By 8 a.m. I was on the phone and scheduling the appointment. Luckily, we got the very last available spot. What I haven't yet mentioned was how incredibly soaked Andi's outfit, blankets and bedding were this morning. Soaked. I drape and tuck a blanket over her g-tube/stomach to keep her from hitting or grabbing throughout the day and night. Oftentimes, I put another blanket on top of that - to cover her for warmth. Andi likes to kick off the covers, and reminds me of the stubborn portion of my personality, or her Dad's personality -- it's pretty sweet, although, I smell trouble down the road with that. Anyhow, her clothes were soaked.
Andi's OT and Audiologist were here today. No tummy time allowed, per the surgeon. That puts a major kink in the progress report, because that is the most important thing for Andi to work on - neck strength. So, Andi spent half an hour pitching a fit, and I'm sure her new friends were so glad to get the hell outta here after hearing her belt out her tunes of displeasure.
At the end of the day, we took the most familiar drive we know, and headed down the street to see her Doctor. We are there three times this week, so, you can imagine, the truck pretty much steers itself anymore. Andi got weighed again. 12 lbs., .5 oz's. She went to a one time a day dosage of lasix today, so, that would explain weight gain... every adult females biggest battle, water weight gain. Oy! But, for our Bean, we're slowly starting to stop stripping her little body of fluids. So, this is more in line with what is normal, I believe.
Long story short, because Sing Off is on, and I'm rather addicted. Andi Bean's glorious Dr. and the resident working with him today, whom we know from our months up at Doernbecher's... were able to remove the bandage, and he changed the actual g-tube/button, because it was so groddy, and we used the cream concoction I've been using. He said he understood the thought process of the bandage, but, it was actually trapping the moisture in, underneath it, and not allowing the skin to really heal. So, we no longer have to do that. Thank goodness! So, tomorrow we're seeing the wound care nurse, as they are apparently the ultimate in coming up with therapies or potions to help wounds heal. Andi again was not pleased, as the area is extremely tender, and I got to see things that some parents really just don't want to see. But, I'm extremely relieved that I no longer have to even consider taking out the g-tube and playing doctor, or nurse. I may joke about being Doctor Mom, but really, I'm a writer and help sell books. I don't have the stomach for a lot of medical stuff. I am just so thankful that our pediatrician is so amazing, and I was so afraid he was going to fire us as patients because we're so high maintenance, so - I brought him a super cute photo of Andi Bean for his patient photo collection. I really should've framed it, but who has time for that?! He got to see Andi with her hearing aid in and after she settled back down, before her booster shot, he got her to smile for him for what I think was really the first time he's seen that. So, that was extra special to watch!
I've run into several people we have met this past year these past two days. Yesterday, our perinatologist office receptionist was covering the floor for the surgeons office. Today, unloading the Bean into the stroller and heading to the doctor's office, we ran into our favoritest receptionist (not sure if that's really her title) from Doernbecher's, as she was taking her daughter in for a check-up. Got to catch-up with both of them, which was extremely nice. The first lady had no idea what we've been through these past six months, so it was a bit tiring to catch her up, as our sitch is a bit heavy on the ears. Today, we ran into a couple and their son from our birth prep class. Was nice to catch up with them, although, again - I feel the need to prepackage our news in sound bites, for the sake of everyone. I'll get that figured out at some point.
In any case, Andi's already sleeping and rather comfortable. I must also add that she sat upright in her car seat today and ate the most banana puree she's ever done. More than just a few tiny spoonfuls, she did great. We'll continue to push that, because I really am anxious to pull that g-tube for good. It was great and all for awhile, but it's really time for it to go buh-bye!
Again, super thankful for my husband for pushing back when I didn't even think to. Now we're no longer faced with the obscene task of pretending to be medically trained and able to stomach the innards of the stomach. Need I say more?!
You know, Anna, I read your blog and think back to the days when Collier had medical issues. Granted, his were resolved with one surgery, but I still feel your pain. There are things you can do that you cannot believe you can do. Sadly, I discovered even more things I could do when my parents needed care. Oh my.ReplyDelete
You are doing an awesome job of managing and chronicling this journey and I'll bet Andi will be thrilled to read it one day.
Happy holidays to you and your family. My wish for you all is that Andi becomes an eating machine and that g-tube is history in 2011.