Count Down to New Years Eve

Another CaringBridge Post...

It has been a very frustrating stay at the hospital.  How quickly I had forgotten that the plan changes with each doctor you talk to and the execution differs with each nurse assigned.  Add in the fact that it's the holidays and things are running on short staff...  

Where did I leave off in my last update?

Ah, they removed her central line last Thursday and although it was a surgical procedure it was very minor and simple.  She's been off TPN since last Friday.

Monday, on Christmas Eve, she had a PICC line placed.  They wheeled Ella and me down to Radiology on a gurney that morning (Ella really enjoyed the ride) for what I understood to be another quick, minor procedure of putting a PICC line in her arm.  This would allow for better infusion of the IV antibiotics and if needed, TPN.  It also allows for blood draws without sticking her.  

I waited in the surgical waiting room.  After about 90 minutes I was wondering what was taking so long?  The receptionist called down for me and informed me that they had trouble finding a vein so they put it in her leg.  That's all I was told.  I was very disappointed to hear this as it was not discussed as an option with me.  Meanwhile, the receptionist asks me to answer the phone as she had to run out "for a minute". Really???   I think she was gone an hour!  

Finally I go to recovery to find a cold, unhappy Ella.  The PICC line was not really "in her leg", it's in her groin.  I was seriously upset.  Think about it... a line that must stay sterile/clean in a baby's groin... a baby who has a condition that makes for frequent, loose poops.  What were they thinking?  We are in the hospital due to a line infection and a new line is placed in the dirtiest place on a baby?

Apparently they had no other option, she had bloody marks on both arms for where they tried to put the line in there.  Apparently she's too chubby... ironic since her GI doctor is obsessed with her ability to gain weight.  

So she is getting her antibiotics through the PICC in her groin to treat her central line infection and we are praying that the treatment doesn't lead to another infection.  

Seriously, if I didn't know better I'd think I was making this stuff up... 

Needless to say Christmas Eve and Christmas day were hard.  The PICC dressing had to be changed twice on Christmas day.  It's been changed daily since then. Dressing changes are not fun or easy on Ella (or mommy). And every nurse does it differently... I have to remind them that they have to account for her chubby folds in her diaper area (the dressing will pull up as she moves around).  We are changing diapers every hour or so, trying to keep the area clean; basically changing her every time we think she's peed/poo'd.  

We were going to have a small Christmas in the hospital room but I was still very upset about the PICC line.  When it came time I was just too weepy and my family promptly sent me home to sleep for a few hours.  I felt very much like the Grinch who stole Christmas...  We have decided to reschedule Christmas for once Ella is home.

Ella is scheduled to finish her antibiotics on the 31st.  The Infectious Disease doctor is checking to see what time her last dose is that day, it will be either 6am, noon or 6pm.  We will have the PICC line removed once the last of the antibiotics are done and go home!  ...if the PICC line had been in her arm as planned we would have been able to go home and complete the 10 days of antibiotics at home.

There's more...

She is getting her 8 bottles a day, rather than 7.  We are now using her g-tube.  She is taking about 75% of her feeds by mouth but is uninterested in some bottles/finishing some bottles.  In order to keep her off TPN we are tubing the volume she is not drinking.  I have a fear that using the tube will create an oral aversion, but the nutritionist said today she may be uninterested as an effect from the antibiotics or even just being at the hospital as opposed to home.  I sure hope so!  Too often I feel like we are trading one problem for another...

I get to sleep in 2 hour increments, in-between feeding, tubing, changing and getting Ella back to sleep (plus the antibiotics/pump alarm going off nightly over the 12am hour).  At home, mom & I would split up the night.  That's not so easy in the hospital.  I will say that I go to bed around 8 or 9pm and we sleep until 6-8am.  

Ella's weight gain has slowed while in the hospital, but she's not losing as a pattern.  The doctors are watching her weight daily very closely.  This is difficult since she has been NPO (not allowed to eat) twice in preparation for her surgeries.  It usually takes 2 days after being NPO for a loss to appear on the scale, then she will gain again.  As of today, the GI doctor wants to put her back on TPN at night for the remainder of her hospital stay to maximize her calories.  I don't agree but I don't have a strong enough argument to fight her.  We are increasing her calories in her formula today as well.  

My Dad was here over Christmas.  He came to see Ella several times and was very helpful around the house and taking Natalie to do some things she needed to get done.  Mom did not head home with him as originally planned after Christmas.  Hopefully we can send her home in a couple of weeks.  Natalie and Ella are becoming good buddies.  It's been an unusual situation since we were admitted just a few days after she arrived.  She's been rolling with it very well.  I still can't wait to get home and get us all settled in to our new normal together.

Natalie has a dinner with her Au Pair group on Saturday night and I have made plans to have dinner in that part of town with a couple of good friends.  It's been a long time since I've been so excited about a dinner out!  Grandma is going to do a night shift at the hospital with Ella that night... she's been offering but I've not taken her up on it until I came up with this plan (since dinner is about 25 minutes outside of town, it saves on multiple trips to that part of town, or sending Grandma off to an area of Charlotte she doesn't know).  

For now, we are planning to Celebrate Christmas on New Years Day!  At home.  With NO lines. No dressing. No TPN.  And Ella should be able to have her first REAL bath (not a sponge bath) that week!

Central Line is Gone

From CaringBridge...

I have to say that I was thankful to be in the hospital around midnight Wednesday morning.  I had noticed a wet spot on Ella's clothes on her chest and a short while later the wet spot was bigger.  It was just under where her dressing for her central line was.  I called the nurse and it turns out that there was leakage from that area, although we couldn't see the source of the leak.  Her TPN was halted and they did a quick dressing change.

They took her to the procedure room to place an IV in her hand and restarted her TPN and antibiotic.  

The bad news is that the TPN is really hard on veins - so through an IV, the IV doesn't last long.  

The other bad news is that the antibiotic is really hard on veins - so through an IV, the IV doesn't last long.  

Now put the TPN & antibiotic through the same IV... see where I'm going with this?  Her first IV lasted 25 hours.  The second lasted 29 hours.  They have not placed the third just yet.

Back to the central line.  It was easily decided on Wednesday that the line needed to come out.  The doctor suggested that if there was a crack/leak in the line below the skin that would explain her infection.  Because of Ella's age she had to be taken in to the operating room to remove the line (the surgeon says he can talk older kids through being still enough for the procedure), so she had minor surgery on Thursday.  It went very well.

After surgery the surgeon told me that it appeared she had outgrown her line.  I said that made sense given it was placed when she was still less than 2lbs, she's now about 15lbs.

The doctors have worked hard on putting a plan in place so we don't have to replace the line.  The original plan was to place a PICC line in her arm (which should last 2 months or so) after her infection clears up and send her home using that for antibiotics & TPN.  

A more creative plan was proposed which will require we stay at the hospital longer, for the full 10 day course of antibiotics.  She will need multiple IV's placed to support the antibiotics and TPN while she is here (not to mention daily blood draws too).  But we will also increase the calories in her formula so we can get her off the TPN next week, for good.    She's currently at 89ml/3hr.  The nutritionist at the hospital says that when we go to 92ml on Monday with the extra calories we should be able to stop the TPN.

We have opted for the longer hospital stay with the goal of getting her off TPN, even though it will be hard on Ella (and me, and my support).  

That's where things stand.  

The Peds unit is VERY different than NICU.  There is NO baby care by the nurses in Peds, they do only medical care.  This is why I am thankful that we have Grandma and Natalie to help during the day, giving mama a little break.  

We fix our own bottles here whereas in NICU they made up bottles for the baby.  But it also takes FOREVER to get her "as needed" medicine, like her drops for gas pain.  I will ask for it because she is having pain and it could take 90 minutes to 2 hours before they actually bring it.  At home, when she needs her medicine I give it to her.  Right or wrong, I just had mom bring her gas medicine from home so I can control when she gets it.  

They don't seem to do baby-care on a schedule like they do in NICU (every 3 hours)... so I don't know when they are coming to do vitals or other care and it doesn't seem to matter if I finally got her to sleep a few minutes before.

BUT... we do have walls, a door, a bed for me, drawers for clothes and a TV.  These are all things I would have given anything for during NICU days.  

I've actually run into a couple of staff from NICU since being here, they are so sweet!

Plan C: The doctor just came in and said they will stop the TPN today.  She doesn't need it enough for how tough it is on her veins.  She also said that our GI doctor said not to increase calories in her formula (after Grandma and I just trudged through the calculations on how to mix the revised formula, but that's okay).  But this doesn't change our plan to get off the TPN permanently.

I'm struggling with the doctors/nutritionists about their "calories per kilo daily calculation requirement" (it's a complicated formula based on Ella's weight, how much she has to take in each day).  My biggest struggle is that Ella doesn't want 8 bottles a day and the doctors order that she takes 8 bottles a day (she is 8 months old; 5 months adjusted today).  

Since she has been sick she has been eating less and we have NOT supplemented through her g-tube and she is still gaining significant weight (she put on 10oz in 9 days last week taking 7 bottles daily). 

I'm in "trouble" for allowing her only 7 bottles daily but what I am doing is listening to what Ella wants.  She doesn't have an oral aversion (which is the first thing these people think when I say she doesn't want her bottle)... at midnight she is telling me "mommy, I'm not hungry, why are you trying to force me to eat?"   I'm challenging the docs/nutritionist to look at her WEEKLY WEIGHT GAIN in addition to their daily kilo calorie requirement.  If she were losing weight or gaining really slowly that would be one thing.  But she is bigger than many term babies.  

This is one of the frustrating parts of having a "medically fragile" child... the balance between listening to the experts who are following the standard, and listening to my daughter (and my own instincts as her mother).  They absolutely know what they are talking about, but I'm with Ella day & night and I know her.  I think I'm making a little headway trying to get them to compromise... but I have a feeling it just depends on which of the many experts I talk to at any given time.

Anyway, that's our story.  So now I'm hoping we will be released before New Years.  And I can toss out all of the TPN supplies that are taking up a corner of my kitchen.  We may just have to burn her backpack & IV pole!

Admitted

Written on Tuesday, December 18 on CaringBridge... unable to cross-post via phone.  Finally have my computer for a few minutes.  Unfortunately I can't add the photo right now.

Tomorrow marks 3 months since Ella came home. It's been a good run without being readmitted... 

Ella still has not kicked her crud she's been fighting since December 1. We had a few days last week she seemed to be without a fever... But when she didn't feel like she had a fever, I didn't take her temp...

Fever increased again on Friday and through the weekend. I took her back to the pediatrician yesterday and then for her usual bloodwork (plus an added blood culture). 

The culture came back positive today and we were told to pack a bag and head to the hospital. 

So here we are. I've been teary eyed the last couple of days, feeling so helpless to get Ella feeling better. At least we have a diagnosis and are starting treatment. Docs are still waiting to see exactly what type of infection she is fighting and will fine tune her treatment based on that information. 

Doc set the expectation that we would need 3 negative cultures before we are discharged... So IF that starts tomorrow the earliest we will be home is Sunday. There is a fairly good chance we could still be here for Christmas.... I guess it's a good thing that my sister decided this morning that she and her family won't come for Christmas... It's a 12 hr trip and they are starting to see a cold crop up in their house... Sadly, we just can't have Ella exposed. This will be the first Christmas my family isn't all together... Thank goodness for Skype!

Our Au Pair, Natalie, arrived Thursday evening! She is really sweet and is really good with Ella... Even though she has only met Ella's fussy side so far. I can tell already that Natalie & Ella are going to be best buddies. 

We did get an unexpected bonus today... Santa was at the hospital when we got here! Ella wasn't going to get to meet Santa this year due to contact restriction... But she met him today! Disregard her mess of a mom in the picture... I had been crying earlier when I learned we had to be admitted.

Another CaringBridge post... I swear I have one I want to write specifically for this blog, when I can find the time and energy.

Ella and Grandma this afternoon after a bath.  Ella is wearing a dress that my mom made for my sister (and I later wore) 44 years ago.

It was bound to happen, I just didn't think it would happen this soon... especially under the umbrella of isolation we live in.  Ella spiked a fever.  It was Saturday, December 1.  She was fine that morning.  We all went for a drive so I could run some errands, Grandma & Ella stay in the car.  On our way home Ella started screaming bloody murder.  When we got home I took her out of her car seat and she was burning up.  Long story short, our pediatrician (love her) sent us to the Pediatric ER.  We spent 5 1/2 hours there and had a horrible blood draw experience, but we confirmed that Ella did not have a line infection.

We spent the week giving Ella Tylenol & Advil to combat her fever that went up and down.  By Friday her temp was in the 99 range (highest during her illness was 103.7).  But it is still up and down, not nearly as bad as the beginning.  She's also not been as interested in her bottles while being sick.  When we weighed her on Friday she had lost 4 oz!  I'm happy to report that since then she has put 2.5oz back on, so going back in the right direction.  Because of this we have kept Ella at her 77ml/3hrs and not advanced her in a week, we will advance her again when she is consistently taking her full bottles.

Saturday night, I noticed my throat had that dry feeling... I woke up Sunday with a sore throat and through the day ended up with a fever.  Grandma Carol worked the entire night shift with Ella so I could sleep (I went to bed at 6pm), thankfully Ella had a pretty good night.  LOVE my mom! I was planning on taking over at midnight but she texted me that Ella was sleeping well and I should just stay in bed.  I'm feeling 'better' today, it's turned into a head cold but the fever is basically gone.  I just hope Grandma doesn't come down with it next...

Last week, Grandma & Grandpa were able to fly home to Florida for 2 nights to go to my sister's nursing school graduation ceremony (Way to go Ginger!).  Grandma had a really hard time leaving, especially since Ella was sick and not eating well.  I assured her that I had help lined up, we would be fine and she needed to go.  We survived, but the second night was rough... not much sleep.  I was glad she was able to go and glad to see her back.

Our Au Pair arrived in the US today!  She traveled 30+ hours since Sunday and landed in NJ this afternoon for orientation.  She comes to Charlotte Thursday evening, we are looking forward to bringing her home, having her get settled and watching her and Ella get to know each other.  If I were her I would be exhausted... but then I remember how things were in my early 20's and know she will be just fine.

First time in her exersaucer without a meltdown