10/28/10 (Living w/ Spinal Muscular Atrophy)

So a lot has happened over the last couple of days.  Seeing Jenna failed at re-starting her feeds, a CT Scan w/ Contrast was ordered.  The docs thought they were dealing w/ the small intestine, but the CT Scan showed it was really the large intestine that is affected.  It also showed narrowing of the intestine which suggests possible disorders or disease.  A biopsy was then ordered to confirm or deny it.  Overall she did well w/ it, but today she was not herself.  She wasn't laughing and playing w/ all the nurses and therapist like she had been.  A little whiny and whimpering periodically throughout the day.  She said she wasn't in any pain, so maybe the yesterday just took too much out of her.

We have discussed w/ the docs on our concerns of feeling like we are never getting out of here.  We then discussed the possibility of of TPN (IV Nutrition) training and possibly being able to come home w/ it.  That would entail an RN coming to the house @ least once per week to change her PICC line dressing and draw labs.  But we'll do what we have to do to just get her home and keep her there.  It has just been way too long being here in the hospital.

On a good note, Jenna has been receiving PT and OT here.  The therapist have been great and Jenna loved finger painting the other day. She has also started Speech this week and she is having a great time w/ them as well.

Tomorrow Child Life is celebrating Halloween by having a Halloween parade  Everyone is welcome to dress up in their costumes and even pass out treats.  Of course if Jenna goes, she will only be participating on the "clean" floors!  : )

A Step Backward 10/24/10 (Living w/ Spinal Muscular Atrophy)

Ok.... so today we have taken a step backward.  Last night Jenna was doing well and they slowly were able to increase her feeds to 30 ml.  No issues or problems.  She even slept well (and that can be hard to do in the PICU).  Today her tummy decided it didn't want to work again. She backed up to a residual of 60 cc and she was only getting 30 cc in an hour.  So her feeds were stopped.  Even after she didn't receive any feeds for an hour, she still had 60 cc in her tummy.  : (       All but 2 meds are now given via IV as she didn't seem to absporb any of her 11 am meds.  She will also be starting IV Zantac for tummy discomfort and she is also on IV antibiotics for a UTI.  After the residual showed that the same 60 cc were in her tummy, then ended up dumping it.  So we start over.

Surgery came in and stated they will follow her again, but nothing surgical is needed at this time.  Abdominal xrays looked the same as they did on the 20th, multiple gas-fluid levels in the intestines.  Jenna is followed by GI in Rochester and I have talked to the ICU Fellow about contacting him and seeing if he has any suggestions.

Plans are to restart feeds at 20 ml this evening.  I guess we'll see how that goes. 



SMA - Spinal Muscular Atrophy

Sat 10/23 (Living w/ Spinal Muscular Atrophy)

So Jenna started feeds yesterday.  We started at 10 ml and worked up by 5 and only made it to 20.  When checking residuals (how much is in her tummy), I was pullig out 30-35 mls.  So what this means is we are putting only 20 mls in her tummy per hour and she has 1.5 x as much in her tummy.  So yes, her tummy is slow.  Then she seemed very uncomfortable for a little while last night w/ heart rate in the 160s.  We stopped her feeds and after 30 minutes, she feel asleep.  Feeds were left off for a total of 1 hour and restarted.  She slept well and wasn't uncomfortable.  This morning residuals were the same at 35 mls.  Her morning labs also showed a low potassium level again.  So.... once again her PPN will be adjusted to increase her potassium.  So we sit here today hoping that she at least stays the same or her tummy decides to pick up the pace.



SMA - Spinal Muscular Atrophy

A.M. Rounds - 10/20/10 (Living w/ Spinal Muscular Atrophy)

So today's rounds went like this....

Surgery came in this morning and said that even though Jenna's abdominal xrays look better, they still don't look good.  He isn't comfortable having Jenna start feeds today like originally planned.  They want to do a series of abdominal xrays w/ contrast to rule out a partial bowel obstruction.  So far they are treating her for an illius and wanting to make sure it isn't any more than that. 

Jenna's potassium is now high at 5.8.  They stopped her Polycitra K (potassium supplements she usually gets for acidosis) and now they have to reformulate her PPN as they originally were giving her higher amounts to bring it up from the 2.5.  I guess they did a good job bringing it up, now they just need to regulate it.

Also, seeing Jenna blew her 2nd IV line in less than 10 hours and it took quite a bit of time to get a 3rd in, she will be getting another PICC line placed this afternoon.  This will save her from all the pokes and prods from trying to get blood samples and blown IVs.  This will actually be so much better for her as well.  We are kicking ourselves in the butt for not asking to keep her PICC line in from last week until we knew she was totally back up to feeds, but... what can ya do?

So it will be a busy day, but hopefully an uneventful day.   

Until tomorrow....




(SMA - Spinal Muscular Atrophy)

Re-admit (Living w/ Spinal Muscular Atrophy)

Bummer!  Poor Babydoll has been re-admitted to the hospital.  She woke up Monday morning w/ a distended belly.  As the day went on she grew very uncomfortable and we could not help in anyway.  So another trip to the ER and a few hours later sent upstairs to the PICU.  Xrays showed her tummy wasn't moving again (a possible illius) and feeds needed to be stopped.  Her potassium was also low and needed supplementation. So she is now on PPN (nutrition thru the IV) and feeling more comfortable.  Surgery was called in to rule out an obstruction and xrays were ordered.  Thankfully the xrays showed improvements and the Surgery team believes it is an illius and not an obstruction.  Improvements weren't great enough to start feeds again today, but at least there is an improvement.  Another xray has been ordered for the morning and we are hoping for another improvement.  If so, we will most likely start her feeds at a low rate.  She is already on the PPN so we can do this as slowly as Jenna's tummy needs it to be.  Hopefully it will cooperate this time and she will be back up to her normal rate in no time.   



(SMA - Spinal Muscular Atrophy)

Home, Sleep, Shower (Living w/ Spinal Muscular Atrophy)

See what being home, some sleep, and a shower can do?

WE ARE HOME!! (Living w/ Spinal Muscular Atrophy)

YAY!  After 12 days, we are finally home!  And boy everyone is so excited!  I think Jenna smiled most of the way home too.  She is spending more time off bipap and doing well.  She still has a sore throat, I am assuming from being intubated.  She doesn't want to talk much which is so unlike her.  Those who know Jenna well, know she LOVES to talk!  I'm sure in time, she will be back at it, bossing everyone around again. 

So those who missed what happened, Jenna was sick and spending her time on bipap.  We were doing respiratory treatments every 2-4 hours, but as long as she was on bipap, she was maintaining her o2.  The Sunday evening she started going down hill.  She wasn't holding her own anymore and needed o2 bled into her bipap to keep her sats at 96%.  So we knew it was time to get her stuff ready and and take her in.  We called EMS and headed for the hospital.  By the time we arrived in the ER, she was on 6 liters of o2 bled into her bipap and her o2 saturations were only at 90%.  Then it all happened so fast, she as being taken down to the Code Room to be intubated.  Because of her difficult airway, it took 4 attempts before the breathing tube was in.  I do have to admit that was extremely hard to watch, but I am thankful I was able to be with her the entire time.  During intubation, Jenna lost her two front teeth.  They were loose to begin with.  We found one of them, but not the other.

Jenna remained intubated for 7 days as her little body fought hard to get better.  It turned out she was dealing with MSSA (staph infection), Heamopholis Influenza and Heamopholis Parainfluenza (these are different than "the flu").  The first two are bacterial infections and the third is viral.  All growing in her lungs.  Another culture showed Cocci but only had a few WBC so they weren't too concerned over it. 

During all of this, Jenna's poor GI system decided to shut down.  This is pretty common for her when this sick.  Plus, we are sure the drug they used to intubate her (Fentenyl) had a lot to do with it as well.  Her bladder also shut down and she was retaining urine.  Once we removed feeds, started TPN (total nutrition giving in her PICC line), and emptied her her bladder, she seemed more comfortable.

She was extubated w/o problems and did very well on bipap.  Until that night, her sats were dropping and we had a hard time getting them back up.  Until the Respiratory Therapist kept working on her.  Then all of a sudden her missing tooth came flying out into the cough assist mask!  She then had an instant look of relief on her face.  I don't blame her considering he had a tooth stuck in her airway somewhere!

So she continued to get better (with only a few bumps along the way).  By yesterday she looked so much better.  We started sprinting her off her bipap for small periods of time.  She started doing 1 hour sessions and we knew she was ready to get out of there.

We were discharged from the PICU today after having her PICC line removed and given the flu vaccine.  Even though Jenna still needs quite a bit of care, she is home and we are all together again.

Thank you to all who prayed for Jenna and kept her in your thoughts.  We appreciated all the support we received both in and out of the hospital.  We love you all!

Thurs 10/9/10 ( Living w/ Spinal muscular Atrophy)

Jenna had some issues w/ o2 dropping to high 80s. It was believed her lungs were collapsing after her respiratory treatments, which was causing the desats. Once they changed her vent settings and increased her PEEP, she did much better.

Jenna's culture grew MSSA (staph infection). She already had colonized staph, it just grew out of comoization during the sickness. It is now thought Jenna did not have pneumonia b/c her chest X-rays turned around so quickly.

Wed 10/6/10 (Living w/ Spinal Muscular Atrophy)

Jenna's stomach stopped working yesterday and feeds were stopped.  Took them 6 hours to get PPN (for nutrition) and she started having suagar issues.  Overnight her levels were regulated (was up to 230 at on point).  Then they were able reduce her resp rate to almost goal but now she has spiked 103.3 fever and increased secretions.  Extubation not going to happen.  She just blew her 2nd iv line and having a hard time getting another. Hoping to get one mire so they can get a PICC line in w/o stopping Versed. We also just found out that her colonized staph is flaring and growing more in her lungs which is probably the reason for the new spiked temp.  Hoping  for a better day.