Tuesday, January 24, 2012

Having Some Smooth Sailing (knock on wood)

After 2 ER visits, 2 cleanouts with clear liquids and an increased laxative dosage Fiona is finally doing better. We will be seeing our GI at Tulane on Feb 2nd (their soonest apt with double booking) and we will be keeping out Feb 23rd apt with her GI at Children's. I really want to try to come up with the best plan of action so I'd like to know what they both have to say, since this is out of the norm for her.

I really hope at the Children's apt we can talk some about getting her into GI behavior therapy since we really want her to be able to start pre-k (wow I can't believe I'm saying that about my baby) in the fall. So far we've been told to hold off on potty training until other issues are under control, but I so don't want her to miss out on the school experience because of something as silly as potty training.

Hoping that we can keep her feeling well, esp since she's had such a hard time growing and when she's impacted/ during cleanouts she can't eat or hold anything down, so I'm worried about it in that aspect as well. For now though, I'm going to enjoy having my boogie back (even if it means hearing all about beautiful flowers at 2 am).

On a side note, please keep Fiona's heart buddy Graycen in your thoughts and prayers. She is 16 months and has HLHS, she's currently in ICU battling a bacterial and fungal infection in her blood that has gone to her heart. She will be in the hospital for at least a few months undergoing IV treatments, if they don't work she will need a valve replacement, and she currently also needs the Nissen surgery to prevent aspiration. She's a tough little chicken, but she's very sick and needs all the prayers she can get.

Thursday, January 12, 2012

Oh Poop

So after basically being cleaned out last week, Fiona is now constipated again. I really don't know what to do at this point. What was the change in her that led to the miralax etc starting to fail. She's always had difficulty going, but since she went on Miralax we can generally manage it.

I feel so bad for her and she's in obvious pain. She's shrieking like she used to as a newborn. It's awful. We've cut out milk and put her back on coconut milk. Upped her dose to 2-3 times daily and we had a couple days of nothing but watery yuck and then boom she stopped pooping again. I swear if you would have told me 3 years ago when I was gearing up to have this little lady that I'd spend so much time worrying about and typing about her poop I wouldn't have thought it was possible.

The thing that worries me the most in this situation is where we were a week ago with 2 failed enemas, countless doses of laxative, 2 er visits, clear liquids and a child who was just lying around in pain, if these things are failing what are we left with? This can't become our new normal and it really sucks because it's pushing our hopes for potty training at any reasonable time out of reach. I really want her to start preschool in the fall, but I'm pretty sure at this rate we'll need to try to find one that will work with her. It's not, in the grand scheme the worst thing, it's just frustrating to not be able to even try to make progress when you know they're ready from a cognitive stand point.

Hopefully, I can get her into see Dr E tomorrow and discuss what's going on and although we can't get into GI right now she can talk to them. Icing on the cake is that Fi has another yeast infection, which I've lost count of how many that makes over the past few months. I really want a solution for that situation as well.

Thursday, January 5, 2012

Crappy New Year to Us (pun intended)

Fiona started grabbing her stomach a little on Sunday. By Monday night she was having some obvious pain and it was pretty apparent that she was really constipated. This is not our first rodeo, so I went ahead and gave her 2 full caps of miralax back to back before bed and nothing happened. She was up throughout the night complaining that her tummy hurt.

The next morning I had to go to work but let her dad know what I had noticed. He said that she'd gone twice on Saturday and was surprised she was struggling so much. He went ahead and gave her miralax with every drink that she had, but still nothing came out. I picked her up around 3 and tried to feed her lunch, she was in so much pain that she was arching her back and screaming...I'd already left a message at the ped office, but hadn't heard anything back.

I got a call back around 5 and Dr E said to keep up with the miralax and just do clear liquids. If her pain was out of control we could try and enema or bring her to the ER, but otherwise just watch her. She was miserable and wouldn't play or really move so I decided to bring her to the ER at Children's Hospital in New Orleans. It was such a disaster experience!

First off we had to wait over 2 hours to even get into an exam room and then another 40min to see the doctor. The doctor came in, did a very brief exam and ordered an enema. The nurse came and gave it to her and after an hour we still had no results other than Fiona falling asleep after screaming bloody murder. The doctor then decided that she would do an exam, and tried to break up the poop. Still nothing happened, but since Fi was sleeping she said she was fine to go home.

Well I don't think she was very comfortable at all, she was very shaky and on the car ride home she started projectile vomiting. I immediately called the on call ped who basically said, not my problem call the ER back they just saw her.

The ER was no help either and just said she was vomiting because of the pressure in her stomach and was fine to wait until morning and to follow up with her doctors in the morning. So I woke up 1st thing and called Dr E's and Dr C's offices. Dr E's office called and said it was a GI issue and left a message with Jeannine at Dr F's (our GI at Tulane). She called back and said to do another enema and a clean out. Fi ended up sleeping most of the day so we got a late start. After 5 doses of miralax, and a second failed enema Fiona began vomiting again. At that point I was really getting concerned so I brought her to the Tulane Pediatric ER.

We had to wait maybe a 1/2 hour, but they were busier than I've ever seen and were much nicer about the wait. They immediately said that they were going to make her feel better before sending us home which was really a relief. In typical Fiona fashion as we're waiting to see the doctor she pees (for the 1st time all day) soaking her outfit and the bed. When the doctor came in and saw, she'd also pooped a little he said that it was a good sign and that we were likely headed in the right direction he then gave me the option to have her admitted and do a clean out with Go-lytely using and NG tube or go home.

After thinking about it and discussing it with her dad I asked if we could stay a little while and see how she did before deciding. Well luckily Fi's body made the decision for us, she started screaming and freaking out and I was thinking, I guess we'll be staying, but amazingly she finally pooped, and was definitely feeling better after. So we decided to go home.

Today she woke up and has been a little cranky but she's finally back on track. For the first time in days she's been running around, dancing, jumping and best of all smiling. Her tummy is still bothering her a little, but overall she's a million times better. We've decided to take her back off of dairy for now since we really don't want to put her through this again.