Advocate Like a Mother

   It is Wednesday, August 29th as I write this. I say that because I will not "publish" this post until right before we leave. We are currently at Arnold Palmer Hospital because on Monday Emma had a scheduled surgery to get her G-tube revised. It got so stretched out over the months, especially because a different doctor put a bigger size G-tube in when we came to the ER in May. That Sunday morning the size 12 G-tube had popped out three times within 8 hours, so the doctor put in a size 16 instead.

 Here is a picture from a couple weeks ago of Emma's gastrostomy site without the mepilex foam over it. The size of the hole should not be stretched out and bigger than the tubing Michael is holding on to.

   We are also at the hospital for Emma to get a bronchoscopy done, since she has not had one (per our request) since before we left Michigan in February. We have not gotten the results back from that yet, but Emma's ENT doctor here will consult with Dr. Green in Michigan to discuss her airway and decide if she needs to remain on the Augmentin antibiotic if she still has the fistulas in her trachea. According to the images they printed for us, it looks (to me and Michael) like there is at least one fistula remaining because it shows part of the 3D splint holding her airway open, rather than only showing all pink trachea "skin". One very good thing we learned after Emma's ABR (Auditory Brainstem Response/ hearing test, which was also done while she was under anesthesia) is that her hearing is perfect! I was actually surprised by that due to how often the ENT talked about Emma needing ear tubes to drain the fluid, which she found none of on Monday. Most babies and kids with trachs are commonly found with fluid in their ear canals. Also before Emma was discharged from the NICU in April, they did a hearing screening and the outcome showed that one ear had moderate hearing loss and the other had severe hearing loss. But hooray for that test being wrong in April ~ one less procedure this week!!

 Before the surgery and procedures (above) & After (below). They had to completely sew up the original prolapsed G-tube hole except for a spot for the drain and cut an incision above her bellybutton to create a new lower stomach hole for the new (yellow) G-tube.  This was difficult as she is very small for her age and "does not have a lot of real estate to work with", as the surgical doctor phrased it.

    Yesterday morning (Tuesday) Emma was taken down to radiology to do a contrast. This is a test where they put a clear liquid through her G-tube but in the Xray video it looks black so they can see if it is moving in the right direction, out of the G-tube, into the intestines and out as it should. I liked that they let me wear the metal apron so I could stay in the room with her. Usually we have to wait outside. The contrast was moving slower than expected, so they took a few more Xrays in her hospital room every four hours to check if the contrast was still moving. Her stomach was still very hard and big, looking stretched out so they had reason to believe there was a blockage causing all the air to not be released. The doctors referred to this blockage as an ileus, explaining that during surgery the colon often falls asleep and you have to wait for it to wake back up before that part of your body starts working properly again. Instead of doing anything about it, they wanted to simply wait it out.

   I am definitely not trying to say anything bad about any of the hospitals we stay at and doctors that she has, but since Emma has such a rare condition (Meier-Gorlin Syndrome), things often affect her differently than a "normal" baby. This makes it very hard and frustrating for us as parents because we know Emma very well and know what her reactions to IV fluids and other procedures are, but if what we suggest doing is not how the doctors normally do things, they deny our request to try it. (We had this problem in the NICU after coming back from Michigan- the doctors did not want to switch her from their amazing hospital ventilator to the LTV home vent even though we knew that was best for her. Once they switched her after we begged them, Emma's breathing instantly became so much more relaxed.) The current situation is that today is now Day 3 without Emma being on formula. We turned her EleCare formula off at home at 4am on Monday since she was not able to have anything in her stomach eight hours before her surgery, which started shortly after Noon that day. Emma never does well on IV fluids, so after every surgery she has, her skin usually gets very puffy. Luckily she is not puffy (in the face and hands) this time, however, there is a lot of air in her stomach that is not coming out for some reason. She normally poops four or five times a day at home, but now she has not pooped since Monday. We really believe that IV fluids dry her up, so we just suggested that they give her even an ounce of milk over a 4 hour period (at home she gets 1 ounce per hour). But since that doesn't work in other patients, the doctor refused to let the nurse try it with Emma. Emma is a very happy girl who laughs a lot (my dad even asked if she ever makes sad faces), but with all these tummy troubles, we have not seen her smile since before her surgery on Monday. She had made several sad faces, especially this morning.

   ... Well, I guess a different doctor did not want Emma on milk because maybe an hour later her surgical doctor came in saying we could try her on 10ml of formula over an hour. An hour and a half after him saying that the formula was measured actually administered into a pump for her. They only did this every three hours because they didn't want it to cause any more backup in her intestine where all the air was. Shortly after the 10ml of formula was finished, Emma began pooping!! Yes, we prayed for poop. And we were very excited about it. During the day we positioned her from her right side to her left side after each nap in order to move her intestines around a bit to keep things progressing. Therapy brought in the Tumble Forms chair so she could sit up for about an hour today. I was even able to get some small smiles out of her in the evening. They kept this formula schedule over night of 10ml over an hour, every three hours.

   Thursday now: This morning I was very happy to change another big diaper and find Emma's tummy to be about 80% squishy, close to how squishy it normally is. I tried tickling her when I saw her awake and she looked very happy. Another GI doctor said the nurse could up her formula amount to 10ml every hour and ran it continuously throughout the day and even raised it again around 2pm to her "baseline" of 30ml per hour. Now we just have to wait for her to pass the 24 hour test. Then, around 2pm tomorrow, they will know that Emma is tolerating the full feeds well and we can go home. Her nose swab culture came back positive for MRSA this afternoon, so everyone who came in to do stuff with Emma had to wear those yellow protective gowns. She is getting Bactroban to help treat that as well as Pepcid to make sure she didn't get stomach ulcers while she was not getting any formula. Before she was able to use her G-tube for medicine, they replaced her Augmentin with Ancef which is another broad antibiotic used to treat and prevent bacterial infections, and added a low dose of Reglan to help her poop. (Side note ~ this hospital has amazing water pressure! Her Pediatric Special Care room has a bathroom with shower in it, just like the rooms at Winnie Palmer do across the street.)

  One very nice thing about today was the visitors. This morning we got to see two of Emma's primary NICU nurses, Billie and Kim, as well as Dr. Lipman and Alison the pharmacist for a few minutes. And although we are eager to leave the hospital and sleep in our own bed (Michael and I have been trading nights of who sleeps at home and who stays at the hospital overnight), to me it seems like our marriage gets stronger each time we are here. This could be due to agreeing on everything that needs to be done for Emma and making important medical decisions for her together. Our marriage was the most amazing while in Michigan at the beginning of this year, spending almost 24 hours of 72 days together.

   Friday: This morning the surgical doctor came in to see us and said he felt like Emma's yellow G-tube "mushroom" inside her stomach was in a good spot and with her being able to go potty without any problems, her tummy being back to it's soft and squishy state, and her feeding schedule back to normal, he verbally approved our request to take Emma home today since we feel comfortable doing so. We got the discharge order around 12:45pm! Next week we will go to his office for a wound care follow up appointment and then can resume her physical therapy at the house a few days later. In a couple months we will get her yellow G-tube replaced with a regular clear one like she had before. Michael wants the Mic-key button, but two of our doctors have said not-so-good things about that one. I pick whichever one will keep Emma out of the hospital! We'll pray that she does not get another prolapse over time and that the tube and balloon stays in nicely as it should until she learns to eat on her own in the future. Yesterday was Emma's fourth month "at home"! :)