Emma Kissock – Emma’s Syndrome

This has been a busy week for Emma, but she is our smiley, happy girl.  She is very active and seems to like to get into things.  We are rolling onto our stomach, but have not quite mastered rolling onto our back.  We still are needing some help with that.  So far all the therapists are saying that Emma is at a 6 month old level.  But we are getting longer and only outgrowing our infant seat because of our length.  Robin has gotten help from the church “Angels”.  Thanks to each of the Angels for helping out.  Emma still doesn’t sleep at night, but hopefully that will come too.  Nothing new, just more therapy appointments for Emma.  Thanks to everyone.  Love to all, Grandma Carol

When Robin got home with Emma and put her on the floor, she was all over the place and jabbering away.  She has been happy all weekend.  She hasn’t learned to sleep at night for mommy, but other than that she is happy.  She is cutting more teeth.  She has number 4 (another molar) and 5 and 6 are trying to come in.  Emma had occupational therapy this morning and finally decided to do what she was supposed to do at the end of the session.  I guess that’s Emma – doing what she wants – when she wants.  So after our therapy session, we got home and fell asleep.  Robin took a nap at the same time.  Emma has speech therapy tomorrow so we will see if she cooperates with that. 
Love to all, Grandma Carol

Emma is now at home.  They left the hospital at 12:30 p.m.  She seems to have tolerated her feedings through the “G” tube and is back to her happy, talkative self.  Emma has been talking to Robin all morning – including while Robin was driving.  They have changed some of Emma’s medications to help eliminate the gas problem.  Hopefully we can keep Emma healthy.  Emma hasn’t required a lot of extra naps this morning, so that will help too.  When I hear more, I will let you know.

Love to all, Grandma Carol

During the milk study they wanted Emma to lay still.  Well, they got their wish.  She fell asleep waiting for the test and slept through it.  Only if all the tests could be that easy.  Last night they got the results of the milk study.  Everything showed normal.  They started doing bolus feeds every 2 hours into her G tube.  They pulled the J tube for the test and for now are not putting it back in.  So far she has been tolerating the feeds.  Here is what Robin sent me: 

With Emma, she’s so far tolerating her feeds for the most part, she’s still a little fussy, but we don’t think that it’s due to feedings – we think it might be more of her teeth at the moment.  The resident thinks that she might be able to go home “soonish”, but is going to talk with the other docs to make sure.  They are also trying to set up a Care Conference to discuss long term goals for Emma, since it’s been a while since one has been done.  With Emma’s feeds, they are going to try to give her a little bit more volume since at the moment she’s not quite getting all of her calories.  They are also going to try to space them out a little bit more so it would be an easier schedule at home. That’s what they are going to try to do – since right now she’s eating every two hours – that’s not really a good schedule to go home on — I wouldn’t sleep.  Emma just fell alseep again so I’m going to try to get some more rest – I only got a few hours of sleep last night – she got into such a deep sleep, that around 4, her apnea monitor kept going off with low respiratory rate – she was breathing so shallow that it wasn’t picking up.

Robin said that Emma could go home as early as tomorrow, but we will have to see what all the other doctors say.  So that is all we know for now.

Love to all, Grandma Carol

Emma was admitted yesterday for intolerance to her feeds.  When they took an x-ray, her intestines were about 4 times as big as they should be.  Which means that they were full of gas.  Now the big question is how to get rid of the gas.  We had been venting her every hour (and sometimes oftener) and she still had a lot of gas.  From Friday night on she just wanted to be held and cuddled and vented.  So in order for Emma to sleep, she had to sleep in our arms or on top of us.  They have her on pedialyte right now.  Robin and I took Emma to the ER and got to a room about 3:30 p.m.  They did an x-ray and blood work and then decided that she would be admitted as we had done all that we could at home and that it would be up to the GI doctors to see what they could do with Emma.  We finally were taken to her room about 9:30 p.m.  Then Robin and I ordered in food to keep going.  Then Robin and I went to the car and brought in the items they were going to need at the hospital.  (Robin had packed that before we left anticipating Emma would be admitted.)  I left and headed home and left Robin and Emma there.  About 1:45 a.m., they decided to move Emma to a private room, so Robin had to switch rooms and get resettled all over again.  I finally got to bed about 2 a.m.  I don’t know what time Robin actually got to sleep.  I talked to Robin at 8 a.m. and woke her and told her to go back to sleep and that I would drop off a vehicle if she needed one and then took a bus from the hospital to work.  The GI doctor was in a short while ago.  They have done some lab tests and will be doing a few more.  They will be doing a milk study to see how Emma’s stomach is emptying.  If that isn’t the problem, then they will have to see what else they can find out.  The doctor’s are as confused as we are as to why this is happening.  All we can say it that it is just Emma and what will be will be.  So we keep trying and doing other tests.  Robin finally got a nap in this morning so that helped a little.  The milk study will be done tomorrow when they are able to get it scheduled.  So we wait again.  At least Robin has help with Emma and can get some rest.  I will let you know when I know more. 
Love to all, Grandma Carol.

Emma was back to the doctor today and she has another infection.  So we are back on antibiotics.  Last week Emma was not tolerating her feeds so they had to go back and restart some of them.  We are still not back to where she should be, but we are gradually working on it.  Emma just doesn’t want to sleep for any length of time which makes it hard f0r Robin to get much sleep.  Robin has help coming in a few hours on some days, but Robin can’t get a good nights sleep.  I have been over there helping with Emma most evenings so that Robin can either get a nap, get a shower or get some of Emma’s paperwork done.  Hopefully with the antibiotic again, Emma will be able to sleep longer.  Emma is getting weekly therapy now.  They have evaluated Emma and told Robin that Emma’s development is at a 6 month old level.  Emma is 21 months old (age wise).   Not much else to say at the moment, but wanted to update everyone.  Thanks.
Love to all, Grandma Carol.

Emma had an appointment today with the pediatrician.  He was very impressed with how Emma was doing with all she had been through.  She was even smiling and babbling for him.  He said to try to increase her feeds 1 ml every other day and see how she tolerates that.  If she doesn’t, then back off again.  So Robin will be adjusting feeds according to Emma’s liking.  Last night Emma fell asleep in her infant rocker and slept for 6 hours.  When she woke up she was a babbling and giggling so Robin just let her be and rested.  So for now, all is well at the Kissock residence. 
Love to all, Grandma Carol

Robin called me a short time ago and said that they are home and have everything inside.  Emma is back to her smiling, happy self and enjoying laying on the floor and playing.  While I was talking with Robin, I could hear Emma just babbling and giggling in the background.  All are happy at the Kissock residence.
Love to all, Grandma Carol

We have been up and down all weekend with our feeding.  We have had to vent Emma often and Emma has been her playful self and smiling at everyone.  Her feeding is at 90% of where it should be and as long as Robin is used to dealing with the venting and adjusting feeds accordingly, they are going to let Emma go home today.  I think this will help everyone.  They are excited to be going home! Today is day 178 in the hospital since 9/11/07.  At the moment Robin is packing and waiting for the paperwork.  I will add a post later as to when they actually have left the hospital. 
Love to all, Grandma Carol

Emma is still in the hospital.  She is doing well with the “J” tube they put in.  She is working her way up gradually to where they want her feeding to be.  They increase her dose every 6 hours until they reach the goal of 36 ml per hour.  She will be fed continously 24 hours a day with the “J” tube.  We are starting to see some of the smiles back and the desire to play with some of the toys.  She loves to sit in her bouncy seat and play.  She has finally found her feet and likes to play with them too.  We are still teething and occasionally running a slight temp.  She is working on her 4th molar.  They had to take out the central line on Wednesday as it showed signs of a possible infection starting.  They put in an IV in her foot.  They have at least today yet for IV antibiotics.  I will send more news when I hear it.  Happy New Year!
Love to all, Grandma Carol