Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, September 1, 2014

Hospital Update #3 - Home

As you probably guessed Meagan did not come home Saturday night.  She ended up having two huge vomiting episodes and was quite out of sorts most of the afternoon.  She was tired and restless and of course, not holding her feeds.  In between being sick, she was happy though which was an improvement from the day before.  She would snuggle or smile at me and be silly.  There was a definite pattern of sickness and pressure and not feeling well, vs. having an empty tummy and being happy.  We hoped it was just still adjustment time so we decided to consult the docs as to what to try next.  They suggested resting her stomach, and then trying again at an even slower rate with some anti-nausea meds already in her system.  Meagan's feeds started slow and steady last night.  She was still having incidents of holding her eyes and forehead as if having a headache.  We had decided before starting the feed to go ahead and give her Tylenol for pain and also ordred the Zofran to help her hold the feeds down.  It worked for her first feed - we did it at an extremely slow rate and then let her stomach rest for a few hours.  When we started her second feed early the next morning, we weren't so lucky.  Meagan ended up getting very sick and was then lethargic and sleepy.  She dozed off again around 5am.

Dr. R came in fairly early.  Meagan was still sleeping. He was very disappointed to hear about her getting sick. Again.  We had another consult with GI.  They were very clear that this was definitely a secondary problem - and while they could offer solutions for her vomiting, it would definitely be a "band aid."  I was open to listening to what they had to offer because I was starting to get concerned about her weight gain and nutrition, and also the damage to her system from throwing up.  The GI doctor talked to me about replacing her Gtube with a GJtube.  You can read more about it here, but the short form is, the food goes through the J tube and empties into the intestines directly, bypassing the stomach.  It helps with vomiting, and also helps kids to absorb more of the nutrients since they aren't getting sick.  While the effects of the J tube seemed attractive, we also knew that by doing that we would have to change her to slow feeds - putting her on the tube about 19 hours a day for the calories she needed to intake. Also, if it became dislodged, it would mean a trip into the hospital to have radiology re-place the catheter into the intestines... comparatively, if her Gtube comes out by accident, I can simply (most of the time) put it back in at home.  After discussing it with Brian, I was not very sold on the idea.  We have no problem with her being tube fed...of course that's her main source of nutrition.  The issue for us was more about her lifestyle change it would mean.  As it used to be, Meagan would get tube fed by bolus feeds through her tube, and sometimes pump feeds, and sometimes she would take a bottle.  This had worked fine for her for over  1 1/2 years, so I was hesitant to add on something else to her plate (J tube) unless it was absolutely necessary.  But I knew if it came down to it, we would do what was best for Megs to keep getting her proper calories and the help she needed to grow and thrive. So by the time GI doctor left, we had a plan to go home, but call back Tuesday to get Meagan in for the Jtube outpatient procedure either that same day or Wednesday. Through the afternoon I grew in my discomfort of calling for the outpatient procedure.  I knew the root problem was we were in a tug of war between brain pressure and GI pressure - and in the grand scheme of things, brain will win every time just since it is more important in Meagan's case.... so GI will have to have "temporary fixes" at times, but I wasn't sure we were at the point where it was warranted.   We decided to not rush into any decision and consult with Dr. R since he also knows Meagan well, and go from there.

Tired and "grey" from a sick few days

We consulted with Dr. R yesterday afternoon after Meagan had again thrown up part of her feed during the day.  He said he was completely fine to let us go home and manage her feeds at home since we were competent parents who were on top of Meagan's issues.... as long as we were ok with it as well.  He also offered another opinion on the GJ tube option.  Dr. R suggested we go home, try light feeds (pedialyte and diluted formula working back up to full formula) as we saw fit on slow rates through her G tube.  Let Meagan try to adjust to her new shunt pressure and try to work her feeds back up to what had been her norm.  If for some reason this wasn't going to work, we would know in a week or two, and then it would be obvious (and an easy choice) to go ahead and switch Megs to the GJtube.  Dr. R also said he feels Meagan may need to go even one setting higher in her pressure setting, so he is having us come in on Thursday to get that done.  That way it will give Meagan some adjustment time now, and then when he pumps it up again Thursday, she will hopefully be settled out from this past week.  The conversation with him reminded both of us that it did take a little over a week for Megs to get used to her new pressure with the EVD... and that was when it was pumped up a little bit each day.  This new change had been overnight (literally), so the conclusion was, Megs may need more time to adjust.

Once we got home, Meagan was very excited to see her sisters and her pets.  She scooted around a little and played with some toys.  She snuggled with everyone and seemed content.  And her sense of humor has started to return.  I think we are definitely seeing her on the upswing.  She had a small feed last night on a very slow rate of mostly pedialyte and some diluted formula, and so far she is holding it ok.  She did hold it all night, however I did let her stomach rest the remainder of the night instead of doing a continuous feed.  We did another feed this morning, and so far, she is also holding that down.  If she continues to hold these smaller slower diluted feeds, we will try more and more formula until we work back up to her usual rate, and hopefully back up to the amount of formula she is prescribed to keep growing. If at some point it is apparent that won't happen, I have a final date in mind when we will simply say "ok, time for the GJ."

Overall it's been a pretty tiring last 5 days! I'm so thankful we have a great medical team to work with.. and I say that in the truest sense.  They really do work with us.  Meagan's doctors ask us her tendencies, evaluate her based on her clinical condition and the information we have told them, and are always considerate of our questions and opinions. We have never been pushed aside even when things are intermittent, and that is so important as often hydro kids do have intermittent issues that point to a bigger problem. So now we wait.

We are in the strange balancing act of brain pressure vs. GI pressure and something has to even out - or something has to give.  Considering it's taken us almost 3 years for us to even get close to a workable pressure for Meagan's brain, we want to mess with that as little as possible.  As a matter of fact, Dr. R said that because of her issues, he may even wait to close up her skull until she's 6ish instead of next year. It's her only "window" to let us know how the shunt valves are working, and the only way she gets a little pressure relief if things act up.  I was fine with that - I just jokingly told Dr. R he better not retire before that because I don't trust her in the OR with anyone else!

I will be sure to update from Neurosurgery once we go on Thursday.  I'm hopeful we will keep seeing Meagan improve with the diluted feeds, and she starts tolerating more and more in her gtube.  We hope that the "fine tuning" Dr. R and the GI team did this weekend was enough to get her another great few months.....or longer... with no major issues.  We are so grateful for her progress but it is also such a delicate balance between her shunt system and her GI system that little obstacles along the way are not a shock.  We just need to be sure we tackle them with the focus on what is best for Meagan long term.

Ironically, today also starts the first day of Hydrocephalus Awareness Month.  Be on the look out for a few posts that focus on this issue in the near future. Thanks again to everyone for the prayers.  And to Meagan's doctors and nurses who took such good care of her these last 5 days.

Meagan screamed all the way out the door - typically when Brian comes it means we are walking her to surgery.  Once the doors opened, she started laughing so hard.  She knew she was going home!