13 Days w/o a BM.

Admission was seamless. Annabelle was very calm about this hospital visit and inpatient stay. She had very little anxiety about the doctors and hospital, this is so heartwarming and heartbreaking for us. She was chipper to the nursing staff and settled in her room comfortably. Climbed into her bed where she would spend the next days, adjusted the recline and grabbed for her Kindle to watch cartoons. It was like she knew the routine all too well... my heart sank but I was able to exhale a sigh of relief. This is far from our usual routine where I carry her thru the doors in silence, she clings to me like a monkey and pleads with tears in her eyes to go home. I guess she has finally realized that going home isn't an option when mommy brings her to the hospital, so we might as well get comfy while we're here.

Annabelle asked if the nurse was going to poke her. I said "Yes sweety. She IS going to 'poke' you (that's how we refer to needles), but I promise it will not take long. She will do her best to be very gentle. Can you do your best to be very brave so it will be all done super duper fast?" Bless her heart, she said "I don't know mommy, but i'll try."

The nurse was BEYOND wonderful. She spoke to Annabelle on the same level as I do. No sugar-coating or lies. She explained what was going to happen, step by step, she even went further than I would have but I think it was a good thing. It was an appropriate level for Annabelle to understand and I think it made the anxiety even less stressful that it was. I choose the best site for the nurse to place Annabelle's IV. There is a great vein in her left hand that I prefer they only use for IV's.. blood draws, we go for other areas, but for an IV - I prefer to keep her left hand unharmed and healthy for those. The nurse told Annabelle everything she was going, including wiping her hand with cold alcohol to make sure there are no germs - then next she pulled the needle and Annabelle whimpered. The nurse showed her what it looked like and then pointed to where she was going to put it. She counted to 3 and didn't lie about when the stick would come. Annabelle squeezed my hand and didn't look. She moaned one time "ohhh mommy!" with the saddest eyes, but a tear never fell. Annabelle looked around the room cringing thru the pain as the nurse struggled to secure the IV placement (the vein kept moving away from her).. Belle did such a wonderful job. Once it was in place, the nurse told her to look. Annabelle was very proud of herself once she saw what had just happened and she didn't cry or pull away. I was in absolute awe of her bravery.

After her IV was placed and they began fluids, we discussed the plan for administering the GoLytely. We would deliver the liquid via g-tube, starting at a rate of no higher than 150ml / hr. I typically run her continuous feeds at 40ml/hr because her stomach doesn't empty fast enough to run at a higher rate. The nurse wanted to begin at 300ml/hr and I said "Absolutely not". Annabelle would be wretching and trying to vomit in no time. If she begins that violent process, we will be in trouble. By this time, more doctors were doing their assessments on Belle. The god-awful smell from her breath and coughing / choking was confirmed as stool that was backed up into her stomach. The leaking discharge from her gtube was also backed up stool. I wanted relief for Annabelle as soon as possible, as quickly as we could - we began the feeds. Began the IV fluids and manned our positions to begin the evening of a poop-marathon. We were far from wrong.

I began vomiting shortly after midnight. The virus Madelynne was fighting at home was apparently shared with me. I spent the rest of the night calming Annabelle to get back to sleep between vital checks & blood draws as I vomited every 20 minutes around the clock. By 5am, Annabelle had been receiving the medications for 8 hours. She still had not even the first sound of a rumbly-tummy.

9am.
13 Days since her last BM
24 hrs since she last peed
12 hrs since beginning the bowel cleanse that should have taken affect within 3-4hrs.


We still had nothing.

Annabelle was swollen everywhere, her face was hard as a rock and her skin as tight as can be. Her face, hands, fingers and toes were painfully swollen. She was pleading for something to eat and broke down in tears each time we dismissed her request. She was so hungry.. I snuck her ice chips when the nurses weren't looking and let a tear fall each time I hid myself in the bathroom vomiting and broken hearted that I couldn't do more for my baby.

At hour 14, I spoke to her doctors about concerns whether or not a large stool would do damage and rupture her internally - they were all clueless. None of us had answers as to what was going to happen but we were all equally worried and fearful the result was going to be painful for her.. We decided to bolus Annabelle more fluids because she still was not urinating. Her diaper had been dry for two days. Something had to give.

Finally, after 15 hours - Annabelle had her first BM in almost two weeks. It was pure liquid, and we couldn't have been more grateful for it. Both her personal nurse that had been with us all day, and the hospital nurse quickly moved into action to help clean Annabelle up. Each time that I tried to step up and help, I would vomit again. I am certainly not scared of poop, but for someone that has spent the last 10hrs vomiting, anything and everything was able to instigate another bout. I felt so helpless to everyone, especially Annabelle. After her shower, we had to rearrange her IV. Annabelle cried with tears begging for me to home her and make it stop, I couldn't touch my daughter because I was too scared I would get her sick. It was in that moment that I knew I wasn't doing anyone good in the hospital. Annabelle needed me, but not as badly as I needed her. She needed me well and I couldn't do ANYthing for her. Fortunately, we have the best nurse in the world that loves her to pieces - I collected my things and left my baby in the hospital. For the first time, ever, I left her with someone else. Someone I trust more than anything - but it was still hard.

I called AK and told him that I needed to come home and he can head up there. I would be home with Mady and he could be with Annabelle, we could switch. Fortunately, he didn't listen at all and he called his own mother to come nurse BOTH Madelynne and I for the day.

 

Over the next 4 hours, Annabelle only had two more BMs. The doctors expectation for her was significantly higher. They decided to bump her feed rate of the bowel cleanse from 150ml/hr to 400ml/hr!!!! It was obvious Annabelle was not progressing as she should and her GI system is not functioning properly by any means. It took several more hours and things finally began to move again. Annabelle was allowed a popsicle and got a visit from the hospital doggie in her room. Two things that made her more happy than anything. (well, chicken probably would have made her really happy).


By Tuesday, Annabelle was finally home. Mady was feeling much better. I was slowly recovering and Annabelle, albeit weak and extremely tired - she was home and grateful to be there. Her bowels are still moving terribly slow, she has very very little appetite and is quite clumsy because she is so weak but I know she will turn around soon.

We just need to make it a few more months. Annabelle just needs to hold on a little longer so we can find her the answers she needs.

She made it thru this battle, she's made it thru so many - she will make it thru the rest.