Saturday, June 27, 2009

Check In for the Tests; Stay for the Formula

We are heading into Day 3 of Penny's hospital stay. Here's a brief recap so you are all up to speed.

Penny came in for an endoscopy and PH probe on Thursday. A few other tests were thrown in that I can't recall. The PH probe was to be in place for 24 hours which necessitates a hospital state in a baby this young. Friday morning was her delayed gastric emptying test. Thursday morning Penny was great. I was totally freaked out when they gave her general anesthesia because she basically collapsed in my arms and it was like she had no bones or muscles. Very creepy.

We got checked into a room with another little baby girl and her parents. We hardly got to know them though because the staff started worrying that Penny (who as you all know is a snuffleupagous) might have some upper respiratory issue. Since she's been trapped inside with just her brother for weeks thanks to the rain I highly doubted she had a virus. But nose swab it was, roommate and family were transferred out and gowns, mask and gloves mandatory for everyone but Mommy, Esq.

Meanwhile we started seeing a parade of doctors. I mean it felt like House on overdrive. Geneticists, tons of different GIs, neurologists, nutritionists, pediatricians. And they all wanted to know Penny's story. I wish I had done two things before we came in - written down her meds (I thought that would be in the system) and a full complete history. It was hard to remember all the details of what happened when with a fussy little girl who no one will let sleep. I also thought it was funny how everyone asked "And her twin brother, he's...?" "Normal", I always respond and wonder if Ned realizes that average is the new gold star standard.

Seems like she does not have acid reflux but we are still waiting on the results. She does have some esophagitis which could be evidence of allergies. So now she's on EleCare formula.

She ate well (on her old formula) and I put her down for bed at 6:30. I ran out to grab some Anna's Taqueria while a volunteer literally hovered over Penny. Then the trouble started. See, when Penny falls asleep her oxygen level drops - into the low 80s and even the high 70s. Her viral test results came back negative (no surprise there). But then there were docs in and out and nurses and every time the monitor went off I had to adjust the "blow-by" oxygen (since they can't do a mask on her) to direct back to her face.

I expressed to the pediatric attending that Penny does sound a bit worse (respiratory) than at home but that I was more concerned this is how her O2 levels are at home - probably because of her adenoids. She had her 4th X-Ray (first was to make sure PH Probe was in place, the others were to check her lungs. I've told them NO MORE X-Rays. Period.) which of course showed nothing. She did start having a mild fever. My working assumption (and my dad's and the polminologists's) is that she aspirated some fluid into her lungs when she was under general anesthesia and had the breathing tube in.

Anyway, Penny got very little sleep and Mommy, Esq. got basically none. Friday they decided to go through with the delayed gastric emptying. She actually liked it because they had to swaddle her tightly and she fell asleep while I was watching her. Husband subbed in at 9 am and I ran off to work, just to leave at 3:30 to race home to relieve our back-up daycare nanny. Oh, I didn't mention that our fabulous nanny has been on vacation for two weeks?

Back at the hospital Husband also met with an army of doctors, including a pulminologist who confirmed that Penny has to stay until she can be in the 90s without the blowby oxygen when she sleeps. I figured that would be the case after my exhausting night with the monitors. She got a clean bill of health from the neurologists and also the geneticists although they are going to rule out a few rare things (zebras) that I know aren't an issue but whatever. In fact Husband said that the neurologists were very impressed with Penny when she waived good-bye to them.

The feeding team (who I hadn't met with on Thursday) are concerned that she only eats 5 solid foods (pancake, cracker, puffs, cookies, breakfast bar). Sounds like in addition to Early Intervention for occupational therapy we'll need to do a feeding therapy. Penny hasn't really be taking to the Elecare yet - I hate that it isn't pre-made. Not because of the mixing (we mix Ned's) but because she likes the thicker consistency of pre-made.

I raced back to see Penny by 7:30 (and bring stuff for Husband). My dad generously came over and stayed with Ned. She was sleeping so Husband and I went to grab food. Then we got a call that her fever had spiked (104.5) so we went back. They stuck her a bazillion times to get blood (finally from her hand) and had to do a quick catheter to get some urine. The test results? They were....negative, of course. But they started her on IV antibiotics and she basically slept all night. Husband got some rest and he didn't wake as often as I did when the O2 monitors went off.

Saturday morning I got some stuff together and brought Ned to see his sister. A whole other post is how ridiculously easy it is with one kid. He had been subdued the last couple of days but the two of them hardly interacted when I brought him. He's still been pretty quiet.

So I'm on shift Saturday and Saturday night. We're hoping that she can go home later today or tomorrow but I have a suspicion the staff will quickly learn that this is her normal O2 level and for all I know we might have to stay for her adenoids to come out. She has been pretty fussy but since she doesn't have any viruses we took her into the playroom and she enjoyed watching a bigger kid play. The funny thing is Penny seems to be dying to pull up and crawl but she can't because the IV is in her foot. Mommy, Esq. has also discovered that 10 month olds will watch TV.

Update: I heard the ENT people can't see her until Monday so we will be here until at least then. Seriously - no one can come in this weekend?


ABS said...

Holy cow! I can't believe you're there until Monday! Poor Esq family!!! I'm glad to hear that Penny and Husband got a decent night's sleep last night. Good luck! (and "what up?" to Ned Head)

tara99rn said...

YIKES!!! Poor baby. I can't believe all she has been through. I really hope you get the answers you need BEFORE she goes home.

I know it is frustrating and overwhelming there with all of the people coming and going. Honestly, though, I wouldn't take my kids anywhere else (and not just because I work there!!) All of the repeated questions from everyone that walks through the door isn't because the information isn't in the system, it is for her safety. They want to be sure that there have been no changes and have to check, double check, and triple check to make sure of this! I know it makes it seem like nobody has a clue what is going on when they constantly ask you the same things over and over again, just keep in mind it is a safety check system!

I continue to keep her (and your family) in my thoughts!


Stacey said...

Thank you for the detailed synopsis! I was wondering what was going on...perhaps it is for the best if her adnoids just come out on Monday or Tuesday? I will help you guilt mom into coming down early to help :-)

Liz Jimenez said...

Oh wow, what an ordeal. Poor sweet Penny, she has that look like "hey, man, I just want to get out and play!"

Hang in there. Here's to hoping they can just get those darn adenoids out and everything else will improve from there.

Nancy said...

wow. That is CRAZY!! Poor Penny (and Poor Mommy, Esq. and Husband!)

Been thinking of you - thanks for keeping us updated. Let me know if there's anything we can do!

LauraC said...

Will be thinking about you guys! So sorry to hear about this huge ordeal and hope the next few days bring resolution and sleep.

Anonymous said...

Oh my gosh, you must be beyond exhausted- physically and mentally. Your recap gave me NICU flashbacks. Hospitals can be so frustrating, especially when no one will come in on the weekend! Hang in there. This must be difficult as hell, but you're doing awesome, and you'll walk out of that hospital with a diagnosis and a plan for keeping Penny healthy.

K @ ourboxofrain said...

That sounds completely and totally exhausting, for you, for Husband and for Penny (and it must be weird for Ned too, with Penny and one or both parents missing for days). I really hope they are able to come up with some real answers and a solid plan Monday. Best wishes to all of you.

Krissy said...

I can't imagine the level of fumes you must be running on...praying for your family!

Penny-even not feeling well, with hospital hair, you are adorable!

Anonymous said...

Thank you for your descriptive hospital experiences--we are thinking of you every minute, and wish we could somehow help. Penny is so adorable and we wish so much that they can correct whatever is wrong with her breathing.. . lots of love to you all. .Mimi and Papa

Susan said...

Wow, your little pumpkin is really going through the wringer. I hope this ends soon so you can all go home. Her last pic is sad!!! Hang in there.

ElizabethE (also of BigLaw) said...

Oh my. I am so sorry. I will be praying for you all.