April Showers…

Jun, 06, 2017

…lead to May flowers… ummm maybe not for us… but hopefully it will lead to maybe some answers?

A lot of the people who know us know that we’ve had a rough 2 months.  Life for us has DRASTICALLY changed and we are dealing with things I would have never imagined 2.5 months ago.  In fact I thought we would still be riding a post-vacation high from a trip to Costa Rica right about now… nope.  Instead we’re trying to get back to normalcy after our (P’s) 3rd hospitalization in the last 2 months.

So unfair to this little nugget.
So unfair to this little nugget.

For those who don’t know, have questions but don’t want to ask, or for other families going through something similar, or for the spam bots who want to add useless comments on my pictures, here’s what we’ve gone through over the last 2 months.  At the very least I will have it for my records since everything has kind of been a blur.

This is a long  story so I will tell it in a few parts…


On April 2nd (a Sunday) J was getting ready to leave for a Lacrosse game…like literally putting stuff in his car, P had just woken up from a nap and we had been playing in our bonus room when she started getting fussy.  I picked her up and she sat on my lap for all of 5 minutes before she started projectile vomiting.  OK – gross – but babies vomit.  I caught J before he left and had him hold her while I changed my clothes and her clothes… but then she vomited again… and again, and again.  I had a call in to an advice nurse but those Mom spidey senses kicked in and I called 9-1-1.  I just knew something wasn’t right.

The firetruck arrived first and the nice firemen checked her out while she continued to vomit in J’s arms and on to the floor.  It was terrible mucousy/green/yellow, but she had a cold so I thought it was just snot somehow.  She also was SUPER lethargic…I’m talking rag doll status.  The ambulance arrived shortly after the firemen and we all agreed we needed to get to the hospital.  I rode in the ambulance carrying her so she could continue to spit/vomit, which she did all the way to the ER.

J followed in our car, and we kind of assumed maybe they would give her some medicine or fluids and we would be on our way… but each hour in the ER we started realizing the doctors were worried… so we got more worried.  They got an IV in her fat little arm and started getting her fluids and off we went for some x-rays, and then a barium enema series to see how things traveled through her GI tract.  Well… that’s where we ran in to some problems.

I was there watching on the screen as they did this video/image series and at the end of her stomach there was clearly something going on.  It took a VERY long time for the liquid to enter her small intestine & when it did it went through this really skinny section.  It looked like an apple core.  So, that meant a pediatric surgeon consult.  Meanwhile, apparently her blood work was CRAZY.  The dr. came in and kept asking us if anyone we knew had mono, did she have mono (can a baby get that?), and a bunch of other really strange questions that I can’t remember…  Well we got admitted.

J ran home to get us some clothes (mine had throw up all over them), and I was transported up to our room.  Meanwhile I called my parents – they were flying back from Maui on the red eye that night so I wanted to wait until I knew what was going on to call them since they wouldn’t be able to do anything from afar.  I let them know and they understandably panicked, but resigned themselves to coming straight to the hospital in the morning.  My mom called a really close family friend and had her come meet me on the pediatric floor.  She got there right as I was returning from the pediatric procedure room after staying with P while they put in an NG tube to make sure she wouldn’t aspirate if she vomited again.  As we left that room I finally broke down and cried my eyes out.  The nurses were so sweet and it was so comforting to have another mom figure in my life there to give me a hug when we got back to the room.

Jordan finally got back and around 10 or 11 pm the surgeon came in to consult with us.  They needed to do a surgery, they had a few ideas of what was causing the stricture, but her blood work was so strange they wanted to send her for a CT scan in the morning to see what was happening, but they had to wait for the barium to get out of her system.  When he left we tried to get some sleep which did not go well.  And so began night 1 of me sleeping in a hospital crib with little P.  (More crying than sleep happened that night though).

The next day about 5 doctors & nurses descended on our room (a surgeon, a PA, 2 nurses, and the hospitalist), with more confusing questions about her blood.  Finally someone asked if anyone had a history of rare blood disease and the light bulb went off for us (and J’s dad who was in the room)… Beta Thalessemia Minor.  J, his brother, aunt & dad all have it!  Once we mentioned that it was like the clouds parted!  This explained so much about what they were seeing in her panels and they determined they did not need to do the CT scan because they had a better idea of what was going on.  So the surgeons gave the hospitalist & nurses 24 hours to figure out what they wanted to do/how they wanted to manage this new information to prep for surgery.  They scheduled surgery for the next morning, took us on a tour of the surgical center, then we tried to get some rest.


June 13, 2017

Erin Phillips

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