A Long Overdue Update

Where to start…so much has happened since our last post. Some very good and exciting things have happened. Nora got to meet her great-grandparents (on her mommy’s side) for the very first time, Nora finally made it up to 20 pounds and her TPN was reduced with a plan put in place to keep reducing it. (yay!) Then the not so exciting events that occurred was a night in the hospital with a mystery fever and Nora will no longer have her wonderful nurse Virginia 🙁 . It’s been a mixed bag of nuts the past few weeks but overall things are going very good.

Virginia has been Nora’s nurse since the day we brought Nora home from the hospital. Sadly Virginia is no longer working for our home health care company. Monday was her last day and the last time we had her help to change Nora’s port needle and draw labs. Until a nurse comes along that brings us as much comfort as Virginia then we will be doing these weekly duties ourselves. Virginia has grown to be much more than a nurse to our family. She’s a wonderful person and friend and has always gone above and beyond for Nora. Loosing her as Nora’s nurse has been very hard for both us and Virginia. It was not Virginia’s choice to leave but a result of downsizing because of this wonderful state our country’s economy is in. Of course we’ll still stay in touch with Virginia, but now instead of Nurse Virginia she’ll be Aunt Virgina.

Nora spiked a fever of 102 last weekend so off to the hospital we went where it rose to 103. This was Nora’s first hospital admittance in over 15 months. I guess we had rode out our luck long enough and it was time to pay our hospital dues. Obviously with Nora having a port our first fear was a line infection even though her temperature pattern and temperament didn’t allude to that. But she wasn’t showing any signs of a cold or a tummy bug either, the only symptom was a temp. and she was very tired. Her initial labs came back off just enough to make us scratch our heads, not showing a raging infection or strong viral signs but definitely a little off pointing in both directions.

The usual protocol at the hospital for kids with central lines who come in with high fever is to pump them with heavy duty antibiotics right away just to be safe. We were torn on whether to wait on the antibiotics because if it was a line infection we certainly didn’t want to give it time to get worse but we knew that antibiotics, especially the kind they give for a line infection, would tear up Nora’s system and she’d probably end up with bloody stool and a whole new set of problems like every other time she’s ever had antibiotics. Thankfully the nurses and doctors were well aware of Nora’s situation and didn’t push us. It was nice that they trusted us as parents so we didn’t have to fight them on the antibiotics or when we told them that no one touches Nora’s port line but us. We were nervous about chancing it but luckily her blood culture never grew anything.

So hospital stays are never fun but at least this visit went better than expected. Nora has been extra shy and leery of new people lately so we were expecting an unhappy girl at the hospital but thankfully Nora saw it as a holiday and enjoyed playing in her “monkey cage” as we call the toddler hospital beds. Nora’s fever lasted almost exactly 24 hours so it must have been some sort of bug. Little ones get mystery fevers all the time but when a central line is involved we just can’t take any chances. This is why we are so paranoid and protective of Nora. When she has a fever we have to take her in to be safe but then just taking her to the hospital is putting her at even more risk to other sicknesses. Like the merca virus which we were told was the reason why the pediatric floor was almost at full capacity. great…..

Now on to the good news! Nora had her Shands clinic appointment the other week. The doctor she saw had not seen Nora since she was 6 months old so to him she was pretty much a new face. Before even examining her he commented on how good she looks just as a general healthy looking child. As he’s reviewing Nora’s chart and we are telling him how much she eats by mouth, he had to stop the conversation to confirm that there wasn’t a typo in her chart. “Is this right? Nora only has 4.5cm of small intestine?” “Not a typo!” we happily replied. So all in all he was quite impressed with our little miralce girl. Since Nora reached 20lbs in the time frame her main doctor had wanted her to be 18-19lbs, both doctors agreed that she is consuming enough calories by mouth and gaining weight so well that they reduced her TPN. She went from getting 320mls over 18hrs to 270mls over 12hrs. As long as she continues to gain weight then her TPN will be reduced by 15% each month until she’s at 0mls if all goes well. Keep your fingers crossed! 🙂

I saved the best part for last…..Nora’s second Thanksgiving was a wonderful one that included a very special visit from her grandparents and great-grandparents from Kentucky. As much as we have wanted to get Nora up to meet her great-grandparents, traveling 12hrs with her just hasn’t been a possibility yet and with them being 81 years old it’s not easy for them to travel either. My Dad’s parents have always been a big part of my life so this was a very special time for all of us to get together. They came into town a couple of days before Thanksgiving so we had some time to enjoy some outdoor adventures to some of Nora’s favorite spots.

Nora with her Great-Granddaddy, Nana, Nanny and Granddaddy at Lichgate Cottage where we celebrated Nora’s 1st birthday.

Nora was a great tour guide and showed her grandparents all around, making sure not to miss pointing out any sticks or flowers!

Nora had a great time checking out acorns and berries with her Granddaddy. Nora is one nature loving little girl. Get her outside and she’s happy!

Then of course we had to take Nora’s grandparents to meet her duckie friends at Lake Ella. It was a nice way to walk off our Thanksgiving dinner.

Thank you so very much Nanny and Granddaddy for bringing Nana and Great-Granddaddy down to meet Nora!! We love you very much and miss you already!