Day 3 in the Hospital

A picture from before the hospital...Ruby can be a real sweetheart to Lucy when she's sick, but she is ready to have her fun sissy back!!

I can't believe it is only Day 3 of this hospital stay...Hospitals really warp your sense of time, weather, emotions, etc.  Lucy had a pretty good day, considering.  Here is what we know:

1. Sepsis - under control.  Her fever is being controlled by Tylenol / Ibuprofen, her heart and respiratory rates are lower than when we arrived and she is being hydrated both orally and through IV fluids

2. Pneumonia - still requiring a fair amount of oxygen to keep blood oxygen up (90+ is acceptable, prefer 95+), getting double dose of antibiotics and keeping fever controlled.  She has had a few coughing episodes and coughed up some pretty thick mucus from her lungs, but none have been as bad as last night when we needed the rapid response team, thankfully!

3. Hemoglobin - this is the big mystery for this visit.  If you've followed Lucy's story, you know that there is always at least one puzzling piece to Lucy's hospital visit.  Doctors are not sure why her hemoglobin dropped so quickly to the point she did require a blood transfusion today.  They gave her 2 separate units of blood over 8 hours (the second is still finishing up as I type this).  The strongest theory is that there is a bleed somewhere in her GI tract - in her esophagus, stomach or intestines.  The cause, severity and solution is completely unknown at this point.  However, they cannot scope her to investigate under the pneumonia is more controlled and her hemoglobin is higher and within a more normal range.

So...we wait.

Lucy is in OK spirits - in classic Lucy style today, while the lab tech was drawing blood for MORE tests (one of her least favorite parts of hospital visits), she was in the midst of crying and yelling that she would like to go home and she stopped, looked at him and told him he was doing a good job.  He said that people rarely compliment him on his work as he pokes people all day with needles, so it was the sweetest thing he's heard in awhile.  Seriously, she is so HIGH on the empathy scale, even when she is so sick.  What a sweetheart.  Be aware that she also asked the nurse if she was being poisoned by getting liquid starch instead of medicine (we use liquid starch to make slime at home and apparently one of the medicines reminded Lucy of starch...was was quite concerned for a bit).  She also told everyone who entered the room that she wanted ONLY her mom in the room and no one else today.  It feels good to be a hero in someones eyes :)

It was nice to have a a low-key day today, but it made us realize this isn't a quick in and out visit.  Lucy has some serious issues going on that we need to get to the bottom of so she can get back to her fun-loving, happy self.  Ruby asks where sissy is and checks her room just in case...she missed her big sister but we don't plan to take her to the hospital due to all the germs!!!

I have claimed Romans 12:12 as my verse for Lucy...it gets me through the tough days.  Romans 12:12 says, "Be joyful in hope, patient in affliction, faithful in prayer." We have had many many months in a row of joyful hope for the person God is shaping Lucy to be.  Now it is a time to be patient and faithful as we figure out next steps to get her back to healthy.

It's been a rough 2 months!

At least she is still smiling for the camera...

I have not updated lately, not because it hasn't been eventful or I haven't had anything to write about, but because quite the opposite - since October 18, Lucy has been very, very sick.  I'll do a quick outline here and then dive into the current state:

October 18 - 30 - Severe episode of throwing up, started on the Thursday morning, while she was at the neighborhood Montessori school (her school was off for MEA) and then escalated to around the clock throwing up.  I took her to the ER the following Tuesday (I think), where they gave her the customary fluids, MRI (in case of shunt issues) and chest X-Ray, which showed lung cloudiness - likely pneumonia.  They sent us home with a double dose of antibiotics (like 2 different ones) and she slowly recovered at home.  She felt good enough to go to her school Halloween party and Trick or Treating, which was great - we were in the hospital 4 years ago on Halloween, I didn't want a repeat.

Halloween 2018

November 9 - 13 - Another severe episode of throwing up, started on the Friday morning at home, but she felt OK after that...however she threw up at school after lunch and continued throughout the weekend.  This was a quick episode and she was able to be back at school for a few days before Thanksgiving break. 

 - We happened to have a visit with pulmonology  already scheduled for that week (despite her recent pneumonia, decision was no change to current protocol, keep up with inhaler and add "cupping back pats" 1x / day or more as needed - the goal was for this to help clear her lungs.  Pulmonologist acknowledged she has persistent cloudiness on the right side of her lungs). 

 - We also had a pre-planned visit with GI. The GI doctor said she may have something called "Cyclical Vomiting Syndrome," which is really an absence of a diagnosis when no other reason for repeat throwing up can be found.  He ordered future labs for when her next episode started...we didn't have to wait long

November 25 - November 30 - Another episode of throwing up, started on the Sunday morning (I think - they all tend to blend together!) and lasted throughout the week.  She was able to go to ONE day of school on Monday, December 3rd when episode 4 started...We had the labs run and received many test results with no definitive answers.  Areas of concern were high white blood cells, low hemoglobin and low carnitine (related to metabolism).  GI suggested we try a supplement to help with the low carnitine.

December 4 - 7 - Another episode of throwing up, started on the Tuesday morning (middle of the night, really) and lasted throughout the week.  By Saturday, she was not throwing up, but had spiked a fever.  Meanwhile, Abby desperately emailed and called several of Lucy's care team to request addition tests (e.g. broncoscopy to check for anatomy abnormalities), information, etc.  Nothing new was recommended by doctors.

That brings us to our current situation.  After have a fever, shallow breathing and general not feeling well for several days, Jason and I took Lucy to her primary care doctor on Thursday, where we were quickly administered Tylenol and a nebulizer due to fever and low oxygen saturation.  Unfortunately, these treatments were unable to improve Lucy's saturation so we were advised to go to the ER...IMMEDIATELY.

We stopped at home for some clothes and to say bye to Grandma and Grandpa (who were already there helping...thank goodness!).  Upon arrival at the ER, we were told Lucy met the qualifications of sepsis and were quickly ushered to the most high-tech room of the ER for treatment.  She was given IV and oxygen to get her stabilized and then was admitted to the hospital, where we currently are.

At this moment, we are waiting for her oxygen needs to decrease and her hemoglobin numbers to increase (she is on the border of needing additional red blood cells, so a transfusion).  Doctors are focused on trying to determine why those numbers are so diminished and not being created in her body as quickly as expected.  (If you've read this far...you might see a potential reason...she's been sick for basically 2 months!!!  Her body is completely depleted of reserves and is TIRED!).

A silver lining to this hospitalization is that it forces specialists of different areas to work together to diagnose and plan for Lucy's long-term medical needs.  She is a highly complex kiddo that no doctor has really seen the likes of.  Many have experience with a patient with one of her diagnosis, but not the combination, so partnership is paramount, which Jason and I feel is lacking in her regular out-patient visits.

We continue to advocate for her and are seeking second and sometimes third opinions as we navigate her latest health challenges.  We will keep you posted on how she does at the hospital and I am confident that we will be HOME FOR CHRISTMAS.

Update on 2018...so far

I cannot believe that this is my first post in 2018!  That should tell you that Lucy is doing AWESOME from a health perspective.  So far this year, she has had some pretty high highs and some pretty low lows...I'm confident there were WAY more highs than lows though!!

HIGHS:
 - First Dance Recital
 - First Science Fair
 - Graduated from Kindergarten - how is my baby 6 already???
 - Family vacation to Pennsylvania - including Hershey's Chocolate World and the Turkey Hill Experience - so fun!!
 - Long weekend in Duluth - complete with Thomas the Train and a Water Park!
 - Swimming Lessons
 - Play dates with friends
 - Picnics in the park

LOWS:
 - Pneumonia (in June) :( (but a high point that we were able to treat at home and did not have GI issues with it!!)
 - 25+ missed days of school due to illness (2017 - 2018 school year)
 - Schoolwork challenges
 - Still a lot of doctor's appointments
 - A new doctor to follow-up with (pulmonology)
 - Ongoing maintenance medication

I'll post more about the new doctor we are seeing on a future blog.  Wish us luck starting 1st grade in a few weeks!!

First Day / Last Day of Kindergarten

A trip to the ER, but no hospitalization this time!!!

Lucy Sleeping on my lap while we were waiting in the ER

So we managed to avoid an in-patient hospital stay this time!  Here is a rundown of the latest issues Lucy had experienced:

 - Started throwing up Monday night - no indication she was unwell before that
 - We gave her a suppository and laxative at home (she threw up the laxative)
 - She was feeling much better by Tuesday afternoon
 - After an overnight at my parent's for Thanksgiving on Thursday, Lucy started throwing up again on Friday evening
 - We managed it at home with the same routine as Monday, but she wasn't able to keep any food down and very little water and Pedialyte; her throwing up decreased to a few times a day (instead of several)
 - I called her pediatrician, GI and Neuro docs on Monday and the general consensus was that it is a GI issue, but she should be taken in JUST IN CASE it isn't; GI wouldn't give any prescriptions for gut motility over the phone until she was seen in the ER
 - On Tuesday night, we put Ruby to bed and left her in my parent's care at our house and took Lucy to the ER where she had an abdominal X-Ray and an quick shunt series MRI...both looked fine and we were happy that she wasn't dehydrated enough to require an IV or admittance to the hospital.  We took her home with a prescription for Zofran (anti-nausea) and another call into the GI
 - On Wednesday, her GI docs prescribed a motility medicine for her to be taken daily
 - By Thursday, she was feeling better and eating some and on Friday she went to school for a few hours!
 - Now, she has insatiable hunger and is constantly wanting snacks, haha!

So, the 6 day cycle seems to reign true...it takes a while for her body to start "moving" again, but once it does, she is good to go.  We will continue her on daily laxative and motility medications for the foreseeable future.

We are THRILLED that we could treat her at home, but it was a tough week for all of us!!  It's hard to deal with the fact that we couldn't go on a field trip to the Crayola experience because Lucy was sick or that we couldn't decorate for Christmas like we planned because we wanted Lucy to participate when she could help decorate the tree, or that Lucy had to miss almost a full week of school and is sad when she has to go back because she wants to stay close to home, or that Ruby doesn't get to play with her big sister because she is too weak to get off the coach.  In spite of how proud we are of Lucy and her strides, these times of sickness are very difficult for our family, so we appreciate the prayers and kind words of encouragement from those of you who know about these episodes.

Prayers for continued PERMANENT healing for Lucy's GI issues are appreciated.

Another round of GI issues

Thowback to a happier day - outside with sissy!!

UGH!

Lucy is suffering from another round of GI issues.  She threw up on Monday night after seeming to be fine all day.  I gave her a suppository and she did have a bowel movement, but was pretty sleepy on Tuesday and still throwing up some.  By Tuesday evening, she was feeling better and we felt comfortable enough to go to my parent's on Thursday for Thanksgiving.

However, since we got home on Friday, she's been throwing up and has only had 2 small BM's, despite 3 suppository tries.  We have opted to keep her home for now but know she will need fluids soon as she hasn't kept more than a few sips of water and 2 popsicles down since Friday.  I am very hesitant to go to the ER and subject her to X-rays, ultrasounds, MRI's, medicine, etc. etc. etc. and am hoping to avoid it altogether this time.

I have no idea what is causing this, but have a theory that it might be related to chronic got motility issues.  Since school has started Lucy's normal food and digestive schedule has been thrown off, so I am planning to keep her on a maintenance laxative once she recovers in the hopes of avoiding this in the future.  The current bout does not seem to be related to sickness or infection.

It's so hard to figure out and super frustrating - I want to take it away and never have her be in pain again.  And of course, true to form when I was giving her a bath on Saturday night and crying because I felt so bad for her, she reached out of the bath to give me a hug and tell me not to be sad.  Seriously...rockstar 5 year old right there.

Home!

We were released from the hospital on Monday morning and Lucy is feeling pretty good.  She bounces back so well from these episodes it's hard to imagine that it happens at all!  After a day at home to recover, she wen to school for 1/2 day on Wednesday and Thursday and then was off today (the whole school had a day off).  She is ready for a 3-day week at school next week and we are hoping to visit Grandma and Grandpa at the lake next weekend!

She was sent home with the typical instructions - laxatives until she is back to her normal patterns and a suppository the keep on hand "just in case."  Here's to hoping we don't need it!!

Back to the hospital

Even when sick, up for a quick chat with Grandpa on the phone

Well...we made it through a month of school with no major sicknesses, but our luck has run out.  Last weekend Lucy started not feeling well, she had a fever and didn't eat real great on Sunday and Monday and Monday night had some tummy issues.  By Tuesday morning, we were at the dreaded throwing up every 15 minutes.  We stuck it out at home until Wednesday and I think we were CLOSE to being able to get her through with our arsenal of home remedies, like OTC anti-nausea medicine, essential oils and warm packs for her tummy and encouraging frequent sips of water.  However, we did not succeed and took her to the ER on Wednesday for fluids and she was quickly admitted to the hospital.

The story is very similar to past stories...unable to stop throwing up, no gut motility and high blood pressure.  Here is what we've tried so far, along with my somewhat informed medical perspective:

Wednesday:
 - Zofran (anti nausea medicine).  Zofran works by blocking Serotonin signals to the brain.  However, Serotonin is thought by many to be the key to the functioning of gut muscles.  It can stimulate receptors in the brain, which causes vomiting.  Since Lucy has hydrocephalus, could that be causing slow or broken signals?!?!!?!?  Or is it possible the blocking Serotonin early in Lucy's treatment is exasperating the problem since it is a key to a healthy gut????

 - IV drip to hydrate and maintain electrolyte levels...continued until she gets to go home!!

Thursday:
 - NG tube into her stomach (through her nose - she HATES it!).  Goal to suction out any stomach contents and extra air to allow her stomach to rest and stop throwing up everything it comes into contact with.  Drawback, it's uncomfortable and sometimes having a tube at the back of her throat can trigger a gag reflex.  Plus when coughing or throwing up, it can come back up through the mouth and the tape used to affix to the face causes major rashes and dryness on her skin.  Bonus is that some yucky tasting medications can be delivered directly to her stomach and has a better chance of staying down.  Lucy got hers early on Thursday morning and it was removed on Friday afternoon.  It was super successful in helping her to stop throw up

- Hydralazine (Blood Pressure meds) because her blood pressure is always high in these situations (like 130s over 90s...)

 - Suppository to help her poop.  First one didn't work but second one did so that was encouraging to see something moving in the right direction

 - Senna (oral laxative that irritates the lining of the bowel, inducing a bowel movement, ideally).  It was administered through her NG tube.  I feel that this has not impact, personally

Friday:
 - Continuing on the course of action above, limited puking but very sleepy Lucy all day.  Might have introduced an acid blocker to calm stomach, not exactly sure which day that happened on!  Whatever day, it tastes super minty and Lucy does not tolerate it orally.  It is given through her IV

Saturday:
 - Miralax (oral laxative that works by keeping water in the intestines and colon, thus softening stools so they move through the body).  She actually drank this dose in 4 oz of Apple Juice with no issues this morning
 - Kidney ultrasound - because of all the high blood pressure...haven't heard anything yet.  I have absolutely no worries because her BP always returns to normal after illness and I think the nurses and machines are terrible at this particular task so it's about 60% accurate anyways (rant over)
 - Continued with the same other drugs...since she doesn't have an NG tube anymore, the Senna by mouth induced vomiting (big surprise!)
 - Some pep from our sweet little girl...she drank about 12 oz orally ate a few Cheerios and tried a popsicle, only throwing up once (aside from the medicine-induced vomiting)

I really keep those notes as much to inform you as to help me look back in case this happens again!

I am hoping to be released tomorrow, but she truly does still have a ways to go to keeping food down and improving her gut motility.  What a bummer to miss a week (so far) of Kindergarten and life in general!  Lucy is a TROOPER and I'm not sure if this gets easier as she gets older because she can tell us more what hurts or more difficult because she is more fearful, stubborn and remembers what happens in these situation.

Hoping to blog with better news soon!!!