Gastro Appt and Endoscopy/Biopsy

With one of the many referrals came a visit to the Gastroenterology Dr. We had a 9am appt and already the Dr was way behind and we didn't get seen until nearly 10am. The Dr was fantastic though and covered so many things with us. We talked about the high number of poos Miss L does a day and he said this was a results of the milk only diet and the high sugar levels in it. Another reason to move forward onto food :) He asked about her choking and difficulty in swallowing. He recommended an upper endoscopy to make sure everything was working internally. He also put another urgent referral in to the Feeding Team in the hopes of getting her eating more food as soon as possible. As he said it is hard to test the bowel and the gut if milk is 90% of her diet. He needs to see how she handles a variety of foods and if they are digested normally.

As a result it was barely 2 weeks later when we were booked in for the endoscopy. On Wednesday we had to be at PMH by 7am with fasting the night before. We sent the big kids to Nannas for a sleep over so they didn't get woken too early. The drive in wasn't too busy but Miss L was starting to get hungry. We got checked in at 7am by the nurse and headed up to the ward. There they did the height and weight and asked that she go to the toilet. Um no couldn't force her to use the hospital toilet :)They put emla cream on the back of both hands and told us to go into the waiting room. It was only 7:30am and I snuck a look at the board to see what time we were going in. 9am! Oh my lordy we had to keep her busy and happy for an hour and a half with no food or water?! The waiting rooms quickly filled up and there was barely room for the kids to move. We were seen by more nurses then the anaesthetist. We had filled in that she has had anaesthetic before but with Ehler-Danlos it can be unpredictable how the body deals with it.  The Dr then explained that while using the camera for the endoscopy they will also takes biopsies along the way, in the throat, stomach and bowel. All up it should take less than 20 minutes.

       Waiting to go to the ward...she knew something was up and kept hiding in the corner....

    Trying to keep happy and busy and keeping the bandages on for an hour and a half was hard work!

After seeing the nurses and Drs we had another 30min wait before we could go in. Finally we get called in and only 1 parent gets to go in. I don't know if it's harder waiting or seeing her go under? I went in with L and we had to lay her down on the bed. Well there was no way that was happening as she wouldn't leave me arms. Both nurses said she understood what was happening and was fighting it. In the end she sat on the bed and I held 1 side, a nurse held her other and 1 stood at her back. The anaesthetist had the gas mask and had to hold it on her face while thrashing. L kept trying to jump off the bed into my arms and I was fighting the tears. The nurses were reassuring me and telling me to keep singing and talking. After a few minutes she finally let go. All 3 of us gave a sigh of relief. She is 1 determined girl. The worst part is walking out upset and crying as the volunteer takes you back to the friendship room and a room full of parents get to see you. All being in the same situation they know what it's like but it's awkward and upsetting. Andrew was with me this time thankfully and we settled in for a short wait.

After 20mins or so the Dr came in and said she was out of surgery. She was settling in recovery and a nurse would get me when she was awake. All went well and everything looked fine through the scope. Now it was a weeks wait for the results of the biopsies.

In recovery Miss L was awake and happy but like the horrible feeling of walking into that room full of parents while upset being in recovery was hard. The ward is 1 big open area and you get to see other kids and babies being wheeled in. Some wake up hysterical and others have to shaken and spoken to before responding. It is heart wrenching. As soon as L saw me she jumped out of the nurses arms and gave me a big cuddle. She was under twilight sedation this time so not as deep as a general. She came out of it a lot better than when she had her MRI. She was happy just sitting in my lap.

We went up to the ward after 20mins and Andrew could then join us. She was pale and quiet but very happy when they let her have juice. Due to the biopsies they have to check if there is internal bleeding. They remove little patches of skin cells and cauterize them while she is under. The juice went down well and then we had some milk.

                                  Waiting for Daddy after just arriving on the ward.

Juice downed now she sits down to relax. She refused to sit on the hospital bed like she knew it would mean bad things happening....

After an hour or so on the ward and lots of drinking we were set to go home. By this time L was tired and crabby and over the whole thing. On the way home she didn't talk which is unlike her but she didn't seem to be in pain. Overall it was only a half day procedure and I was very glad it was done.

Now to wait for the results...