My Challenging Little Mystery

Hailey had her g tube placed last week.  It was supposed to be a 3 to 5 day stay in the hospital and we were all prepared for it.  I wrote all of the emergency information out for my hubby who was holding down the fort at home.  I did all of the research.  Most of it said that it was a fairly simple surgery and had a quick recovery.  Even in preop, the nurses were asking us if we were going home right afterwards.  So I was pretty confident that this thing was going to go smoothly.  So much so that the surgeon was actually leaving for vacation that next day and I was fine with that.  Of course she had partners on call if there were any complications but she assured us that wouldn't be necessary.

Well if you haven't met my daughter, you wouldn't know that Hailey likes to do things big.  As one of the doctors in the hospital told us on day 5...This is the Hailey show, we are just living in it.  She likes to make the rules and she makes sure that we are all playing by them.

She slept from 7 am Friday morning until 6 am Saturday morning waking up only to violently vomit :-(

So of course, there were complications.  First of all, she was in a significant amount of pain.  When we went back into the recovery room, she was already shocking the nurses with her super human strength and one of the nurses was having to lay on her while the other nurse gave her the morphine.  The pain that was suppose to begin to subside over a period of 12 hours or so was still very present at hour 24.  She was still receiving morphine every 2 hours at hour 36 and they had to add an iv form of ibuprofen.  She would sleep for an hour while the morphine was on board and then wake up in a shocking amount of pain.  In the meantime, we had to begin to slowly feed her.  So ounce by ounce, hour by hour we began the feeds...which she promptly began to vomit up.  They finally stopped the morphine and changed the medication and added a tylenol with codeine to the ibuprofen.  But the feeds would not stay down.  By day 4 in the hospital, she spiked a major fever even with all of the fever reducers on board and would not stop vomiting, even with the anti nausea medication on board...they were talking about meningitis.  They got a chest xray and a belly xray.  We had spoken to the dietitian several times because they didn't have her PediaSure Peptide 1.5 in the hospital so he had put her on a different formula which he said was "the exact same formula just under a different name".  We asked him so many times because of course Hailey is super sensitive.  Her temp broke on Saturday early morning and she was on tons of antibiotics for an ear infection.  She still couldn't keep those feeds down though.  By Sunday morning we were beyond frustrated.  Slow feedings weren't even working so they brought in another doctor and another surgeon to try and figure things out.  

Her sister was so worried about her and she copied the pain chart for her so she would understand it better.

That is when I met my favorite doctor.  On Sunday morning...Day 6.  He sat down on the side of Hailey's bed with me and went over the whole thing.  He said that he didn't know Hailey so he was counting on me to insert my opinion and say whether or not I agreed with his plan.  So first things first, we brought in her formula from home (and low and behold it had 6 grams less of protein than the stuff they were trying to give her in the hospital).  We then added prevacid and reglan.  We then started with 100 ml feeds (1/2 of the normal amount) and started building things up slowly but surely.  He ordered an upper GI after the meds were on board for 24 hours to make sure the reflux was controlled and that her tummy was emptying...And low and behold...It worked!  (well not right away but in about 24 hours!)

Finally she was feeling a little better and got some color back into her cheeks

Finally by Monday she was holding down most of her feeds...even through the hospital switching her room (which was another issue...she has trouble with change anyways so this was a BIG deal!)  She threw up one but then we started again and by 10 am on Tuesday morning we did the last feeding and we were ready to blow that place!  By 11:40, her pump was delivered (we had been feeding her by syringe since September 16) and by noon we were in the car.

If we waited for someone to help us with all of our stuff, we would have been in the hospital room for at least another half hour...No way!  I packed it all up on her wheelchair and we escaped!  She thought it was hysterical!

She is so resilient.  The thing is that once we got in the car, she was dancing to the music and laughing and talking again.  She was so excited to go home.  It was such a long 7 nights and 8 days.  Exhausting for both of us.  Once we got home, we half expected her to be tired...but nope.  She was full of energy.  Running about, playing with her sister.  

She has lost 10 pounds and we are going to be slowly and steadily building that weight back up.  We can't go too fast because we don't want to upset the delicate feeding balance that we have going right now. 

All I can say is that I really appreciate all of the doctors and nurses that worked with us over the 8 day stay.  She can be challenging and she is definitely a mystery in a lot of ways.  I appreciate the fact that they trusted me to give them her history and to speak for her.  I appreciate the fact that when she wasn't doing well, they had different doctors come in to weigh in with their expert opinion.  I appreciate the fact that the nurses were so supportive and helpful and helped me to keep her comfortable.  I appreciate the fact that even when the doctors and the nutritionist were wrong, that they didn't give up, they just came up with a new plan.  

I also really appreciate the fact that I am not jaded.  People make mistakes, experts make mistakes, and doctors make mistakes. They are just working with the information that they have and it isn't their fault that Hailey's body doesn't follow the rules.  I trust the doctors and the nurses.  They have knowledge that I don't have.  I need them to help me to help her.  I trust the therapists, especially her behaviorist who came to the hospital on the first post of day (day 2) to help me to calm her.  Without the therapists, I wouldn't have the knowledge that I do have about sensory input and many other things that help her get through her day.  I trust the dietitian (even though on this one, he screwed up big).  I need him to help me with her calorie intake and with her prescriptions and with advice.  I have to trust the experts and I do.  I am so glad that over the ten years and ten months that I have been a "special needs mom" that I haven't lost my trust in those people that I need.  

For almost eleven years, Hailey and I have been in this together.  It is exhausting but it also refreshing to see how resilient and how strong she is.  I get my strength from her.