We have been busy. Really busy. So this might be a long post:)
This past week Josh had his every 3 month appointment with the Dysphasia Clinic (Feeding Clinic). I wasn't expecting any surprises there, and was really looking forward to having a last minute conversation with his GI doctor before our big appointment with the Colorectal Clinic (that we've been waiting for 2 months almost to get into) two days later. I knew her opinion carries alot of weight for us so I wanted to get her thoughts. But first things first. Stats. Josh is 36.7 pounds (13%) and 42 inches tall (26%). His head size is still 47 cm (-3 SD). They were pretty happy about that.. but said he is still a little on the low end of how many grams a day he is gaining. But I am happy with it, so it doesn't stress me when they say that. (mainly the dietician) While there, we went back over Josh's blood work that was done in April and May while he was in the ER and then his hospital stay. His BUN and Creatinine were off while he was in-patient. Those are liver functions. I remember them telling me that and he was supposed to have repeat labs done... and I forgot. What they didn't tell me was that FIVE other levels of his were off. Some of them are basically things that let you know how well nutritionally he was doing, such as his vitamin D is STILL low after a year and a half. So we are adding 1,000IU of that a day. His protein was off a bit so we are decided to repeat all his labs now and then again in 3 weeks. I hate that there are things to stress about. But what else is new with Josh? LOL.
So Dr. O'Gorman told me that after talking to the Colorectal Clinic and giving her opinion, she thought it would be perfectly reasonable to go to our appointment and walk out with surgery scheduled. The Clinic normally has a standard procedure they follow with all new patients and/or patients being referred for appendicostomy's. Dr. O'Gorman knew that Josh wouldn't tolerate large bolus rectal enema's for 2 months. He has had every test under the sun and then some more on top of that. So she told me to go in with a backbone and tell them the same thing she did... Josh cannot wait for 2 months. He needs this done asap for his health and well being.
So you can imagine how stressed I had become about this appointment. I was sooo worried that they were going to tell me they won't talk about surgery until we had done more things, or repeated tests, or something to that effect. I seriously didn't sleep all week. It was soooo stressful.
So appointment day arrives and we had to start with an x-ray. I didn't know about the x-ray, they forgot to tell me. Josh HATES x-rays. I think he associates them with his ER visits. So we had to do that before we even got started (and he had to have blood work done from the orders written on wednesday too) We checked in and got taken back to the exam room. Josh was being a little difficult this time around. He was really anxious and kept asking to go. Dr. Rollins came in pretty quickly and I remembered him from when Josh had his G-tube placed. He was the surgeon who did the colon biopsy's on Josh. I really liked him. So I calmed down and let him begin before I started in with my side of everything. I was shocked when he got right to the point, told me he had talked to Dr. O'Gorman and that Josh wasn't going to need to do anything additional. We were just going to schedule surgery. I was sooo surprised. I was ready to fight! Then he went a step further and let me make alot of the decisions.... such as exactly how they would do the procedure, where I wanted his tube to be placed in his stomach, ect. I had in mind exactly what I wanted, but didn't think in one appointment I could get surgery scheduled, pick the procedure I wanted (there are two ways to do it) and also decide where on his stomach I wanted the tube. Talk about an answer to my prayers! It couldn't have gone better if I had wanted it to! I really liked Dr. Rollins and was so impressed that he was so down to earth and wanted to make sure we got what was best for us. Not all surgeons will do that.
So surgery is scheduled for Augast 15th. He will be admitted on tuesday the 14th for prep. The surgery is about 3 hours long and will be considered laproscopic assisted appendicostomy. The way it is being done makes it so that he can't do the whole thing lapriscopically, but part of it. He will have an incision from his belly button down for a bit and then his tube will come out at belly button height to his right about 3 inches. So he will have two sites that will need to heal and will be sore. But it's all going to be worth it. Dr. Rollins basically told me that after reading his history, talking to his GI doc and all the tests and x-rays we have had done in the last 3 months lets him know that Josh's large intestine/colon is no longer working. We know it has never worked right since he was born, but for some reason when everything went down hill for him neurologically, the bowel issues were hit the hardest. They may bounce back a bit, but he is pretty sure the damage is permanent. So... now we will have a way to keep his system moving along. It will be nice to just hook him up to a bag of fluid that will run through him and clean him out. He can sit and watch TV or play his iPad while doing it. Much better than three people (Me, Scott and Trevor) holding him down to do rectal enema's every night.
So we are excited! Even knowing I have a 5-6 day hospital stay coming up 3 weeks from tomorrow, I am just happy to get the ball rolling and it will all be over with in a couple months.
Now onto some fun pictures!
First of all is Josh at the Feeding Clinic. This kid is obsessed with tongue depressors. While I was chatting with the dietitian and doctor, he kept sneaking another one. Yes... we took that many home with us:)
This is backwards but before we made it to our exam room, Josh wanted to ride in this car in the waiting room so he crawled in there with his feeding pump backpack shoving him forward, and yes... he already had his first tongue depressor from radiology:)
As I have been organizing and re-organizing Josh's Medical Supplies, I broke down and added the two white shelves on each side to make sure I can keep all his stuff together. But sadly enough... we will still have all the new medical supplies that will come with his appendicostomy. I am not sure how I am going to fit it all there..... nice, huh?
Since April we have had to add doses of meds, change the way we dose his meds, and even add a new med. Before I was able to do all his meds 4 times a day. 8am, 12 noon, 4pm and 8ish pm. I had 4 bins labeled for each time and that is how we did it. Well now I am doing meds more often than that and so it wasn't working to do the 4 bins. So I got this idea from a special needs mom in one of my facebook groups. I give meds at 7:30am, 8:00 am, 12 noon, 2pm, 4pm, 7pm, 10pm and 2 am. So this works like a charm! Bet you never knew a muffin pan would be used for this purpose!
These are his meds that require refrigeration.
And finally some fun pictures! One of the other microcephaly mom's I have met through facebook runs a little foundation called Microcephaly Monkey House. She sends these cute Sock Monkeys' to other micro kids going through a hard time, or having surgery ect. She was so awesome and sent Josh one last week. I took a couple pictures of him. I wish I could get him doing his monkey noise on video. It's darn cute!
And last but not least. After finding out about Josh's seizures while sleeping, we decided to invest in this.... a video monitor. It sure relieves so much stress that anytime I wake up at night I can glance up and see how he is doing. Makes a stressful thing a tiny bit better:)
Thanks for reading all this (if you still are!) and we appreciate all the love and support!