Monday, Day + 19

What? Is there something on my face?

Ok, where did I leave off? Oh yes, Thursday.  Well, exactly what I described would happen with Kayla while on TPN happened. We hooked her up (ok, Denny hooked her up) and almost immediately she started feeling sick.  All night long Kayla got sick with the majority being in the morning.  When we got to the hospital and to A/T, I knew the scale would prove my theory. Sure enough, her weight went from 18.6 to 18.0. So, not only did she lose it all from getting sick, but how can you eat or drink when you feel that awful?  So, we had high hopes to change minds on Friday.

Friday was a very busy day. Kayla had her MRI of her spine bright and early.  We had camp and school.  The day finally ended with the all exciting LP (lumbar puncture).  Kayla had been NPO all day for it because it has to be done under sedation, ouch! Lizzy our wonderful RN from E came in just before Kayla was asleep to assess Kayla because she would be performing her LP.  I took my opportunity to let her know how our night went. She looked at me and agreed, "we have to get that TPN gone!" Soon after, Den got a call from specialty pharmacy letting him know that there would be no more TPN! Yay!!! Now, it would be up to us to keep a detailed food diary and prove that Kayla could do it on her own!

 This is Kayla FREEZING waiting for her Lumbar Puncture and wishing it was her line removal!

We finally returned back to the apartment at 3:00 and Goldfish crackers were requested. I have to admit, Denny and I kept looking at each other a lot wondering/hoping this would be enough to get us to where we needed to be by Monday. We need to satisfy nutrition! The normal healthy mom would die seeing what she was eating all weekend. But now, I will take anything! I have to say, she made huge progress on Sunday! We noticed she was making a huge effort to ask for different foods and actually eating bigger bites. On Friday, she would take 4 nibbles to get down one gold fish cracker. First the fins, then the body in half. It drove us crazy, but we had to refrain from saying anything to discourage the progress. It was torture so we just tried not to watch.  I couldn't wait to see if her efforts paid off and how much.

Saturday, we got to go and see the new movie Brave in 3D! Kayla had been so looking forward to this one. It was excellent! We had a fun time and got to get out of the 105 degree heat! We got Kayla to agree to try a quesadilla for  dinner at what would probably be our last time at El Toro Loco (Tommy's here we come!!!). Well... that didn't go so well. She ended up sleeping through dinner. Well, we wouldn't just quit this fight that easily. We got it to go and made her stay up until 10:00 until it was at least 1/2 way finished. She was so exhausted but learned a valuable lesson that we will not give up on our battle to get us home. It's all up to her at this point. On Sunday, Kayla admitted that she was eating so well because she didn't want to be up late getting her calories in again. Gosh, we are tough parents! ;)

 

Brave girl watching Brave in 3D

 

 Sound asleep after the movie

 Our sweet, ALMOST 5 year old boy!!! He is such a trooper.

Sunday we relaxed and played and enjoyed the A/C. It's been way too hot to go outside unfortunately.

 Anthony, Marcus and a new friend playing Foosball

Enjoying a very lazy Sunday

Today not much really happened. Unfortunately, I can't really give any updates on the medical side because we won't know anything until tomorrow. I think that the nutritionist was happy with the food diary. They didn't weigh her though. That will happen tomorrow. Fingers crossed she put on some of the weight she lost!  Kayla got to participate in the Christmas in July photo shoot today. She was in a very puffy white dress in front of a Christmas tree and surrounded by presents. These pictures will be on cards thanking donors for making our Christmas possible. It is true, without these donations, many MANY children would not survive. So for those of you who have donated here, THANK YOU! The pictures looked great. Kayla was wiped out after and quite grumpy.  She is just seeing that we are almost finished here and annoyed that things aren't moving quicker.  

Tomorrow we will meet with E clinic to discuss Kayla's blood test results to see if she is still "ok" to be off of TPN. Also, this will let us know if we are on track to go home or if she is needing any additional things before we leave (like vitamins or fluids).  Once we know all is good, the last thing is removing the central line. We all can't wait for this!!! You know that will be one very happy update from me!   Since it's the holiday week, flights are filling up fast. St. Jude will not book the flight for the patient and a parent home until the day before they are set to leave. They don't want to get stuck with the change fees for those last minute things that can arise if they can help it. Since it's a holiday we decided not to risk the other two of us being stuck here in a hotel or something waiting for a flight to open up so we opted that Anthony and I would go ahead on home first. So, we fly home Wednesday and arrive in the evening. Wouldn't it be great if we can see some fireworks from in the plane? You know we will be looking for them! What a welcome home party that would be!  It will be so nice to be able to pick Kayla and Denny up from the airport soon after and all be home together... finally!  We are almost there! I can taste it.........