Day 59 - UNM Hospital, The Pain Broke Through Again

Not long after India fell asleep tonight, she began to have discomfort. This isn't unusual and one of the reasons I stay with her at night. What usually happens is that she'll wake up, ask me to stretch her legs, put on and off her Buxton Traction and re-position her. Anyone of these things will take place about every hour of the night. This usually manages her pain pretty well.

However, yesterday and this evening I noticed that she was having more pain than usual. And about 45 minutes ago, her pain broke through unlike anything I've seen in a long time; all in a matter of seconds. I again found myself calling for nurses as India screamed from the hurt while I tried to comfort her. 

After the pain was somewhat under control, India asked me to lie down and snuggle with her. I did this until she fell asleep. I'm sitting next to India now, my ears are ringing from her screaming. I'm praying there won't be more hurt, that she can sleep, that soon she won't remember what it's like to live like this. 

And while I'm sitting next to her right now, I'm listening to India make an occasional groan in her sleep from the pain that's still lingering in her fragile body.

Day 58 - UNM Hospital, The Girl Wants To Dance!

One of the reasons India had the type of surgery she did this year in Boston is that it gives her a chance to dance again.

As you can see, she hasn't lost her desire to dance...

YMCA Dance Tonight

YMCA Dance A Few Years Ago

India's Dance Compilation

Day 97 In Hospitals Year 2014 - Marion Time, May 16th

This year is taking its toll on Marion, we don't get to spend much time together. 10 days ago, I took her to Colorado to have some one-on-one time and it was AWESOME.  So this weekend, I took her up to Colorado again.

We had a lot of fires in the fireplace, ate some great food, fed the birds and squirrels and I began to teach her to drive.

I love this kid.

Day 48 - UNM Hospital, Recovering

India is doing well, she is sleeping a lot and in good spirits.

Day 47 - UNM Hospital, Out Of Surgery

Day 47 UNM Hospital (116 Days Total This Year) - Another Surgery

India had another painful night. We had to give her Oxy again. This isn't an easy decision on many levels. 

This morning, when she woke up, India wanted me to hold her; I did. When the nurses came in to take her to the surgery ward, she started trembling.

Day 46 - UNM Hospital, Surgery In The Morning

I'm sitting next to India as she sleeps. 

Tomorrow she has surgery. I'm so scared  for my little girl. 

She keeps saying "no" in her sleep, over and over. 

Nobody else is here...

She just woke up screaming. The nurses are trying to help her.

Day 45 - UNM Hospital, Surgery Update

India's surgery has been postponed until Wednesday May 14th @ 8:30 AM.

Day 45 - UNM Hospital, Surgery Tomorrow

The decision has been made to insert a GTube into India's belly. She isn't getting enough nutrition and for the most part refusing to eat.  India currently has a NGTube to provide her nutrition but this hasn't worked the way we hoped and it's not a long term solution

The surgery will take place tomorrow and I'm scared. Not because of this procedure as it doesn't take but an hour. I'm scared because India is so fragile and the thought of another operation in less than 24 hours when she's not been able to recover from the last in January. 

But numerous doctors are telling me that it's necessary for her survival.

Normally, next week India and I would be driving up to Colorado to water the Iris and feed the Chipmunks...  This year has sucked.

Silly Little Boys and Their Ferrari's

Today is Mother's Day, a very emotional day for me.

As has been the case for almost every day this year, I've been in the hospital helping India.

Today India spent time with her mother. They made the rounds around the hospital and when India was returned to me, she was tired, weepy and sore. I stretched and comforted her until she fell asleep. Needless to say, I was tired and emotional too. It's hard for us to be in the damn hospital every day for hours on end. We both want to be out of there, live life, have fun and feel human.

So after India finally went to sleep, I decided to make the 5 minute drive home so I could cook a meal and maybe sleep a bit.

I pulled out onto the main boulevard - Lomas Boulevard and found myself not speeding up fast enough for a red Ferrari that quickly raced up behind me as if they were going to run me over; I found this funny. You see, I'm driving a 2006 Chevrolet Suburban 4 Wheel Drive, complete off road package and aftermarket Magna Supercharger; it's a "big" and powerful vehicle.

This Ferrari driver and his friend came within a couple inches of my rear bumper, then quickly veered to the next lane, cutting off a car, a person who I'd shared the elevator ride from the "Oncology Unit" with and who looked as exhausted as me; we had both pulled out of the hospital at the same time.

The "Ferrari" raced up to the passenger side of my vehicle; neither driver or passenger having the balls to look at me. They did however make sure that everybody in eyesight could see their Breitling watches, "UFC" shirts to confirm that they were "tough", and ridiculous sunglasses to ensure everybody knew that they were related in some way to the Kardashians.

So there I am at a stop light in my beloved Chevy Suburban with huge dents and 200,000 miles on the engine. I'm next to 2 absolute and complete shitbags who have cut me and another exhausted parent off with complete disregard. And I decided to do something quite satisfying that made me giggle like a little girl until I had tears in my eyes.

I turned my wheel to the right and started inching my dented, dirty and worn out vehicle towards the boxed in Ferrari. The minute I did this, I could see the drivers in the other cars smile with complete satisfaction and in one case, they put their cars transmission in "park"; the Ferrari fools were boxed in.

At first the Ferrari fools gave me a quick beep with the silly high pitched horn of their Italian car; silly boys thought I wasn't paying attention. But little did they know that there was a method to my meyhem. I decided to jerk my vehicle closer and closer to them with every "beep" of their horn.

These two Breitling watch wearing, UFC wannabees, who wanted nothing more than to be associated with the Kardashians - SHIT THEIR PANTS, with every advance I made. It was a glorious "payback" moment to two entitled and arrogant boys.

Needless to say, I didn't so much as encroach into their lane and the moment they could, they fled without any damage other than to their fragile egos.  But as the Ferrari fools sped off, the other parent from the hospital drove by me laughing and waved at me with a huge smile.

We both were given a moment we needed.

Mothers Day Coffee!

Abbie Jumping With Excitement For Mothers Day!

Day 43 - UNM Hospital, A Difficult Request #2

So over 24 hours ago, my child's "traction" weight broke. This traction helps control her pain.

Despite many calls for help to replace the weights, nobody has shown up.

It's 5:45 PM and I've had to resort to adding bottles of liquids to my personal computer bag to modify the weight to suit my daughters traction needs.

Day 43 - UNM Hospital, A Difficult Request?

We are still here at University of New Mexico Children's Hospital after 43 days. 

India's "traction" water weight broke yesterday afternoon. It's now 4:45 am (the next day) and the hospital still hasn't replaced it with another water weight OR simple sand bags. So India and I have resorted to filling my computer bag with about 12 pounds of weight to make due and help her with her pain.

1:30 PM Update...

Next Day Update: http://moomock.blogspot.com/2014/05/day-43-unm-hospital-difficult-request-2.html

Day 116 - In Hospitals 2014 - Marion, The Answer is "No".

This is my beautiful daughter Marion and I love her with all my heart.

This past year I've had to hyperfocus on Marion's sister India because of India's physical condition. This has meant that I've not been able to spend as much one-on-one time with Marion as both of us would have liked. But I've tried to fill the gap with healthy and productive activities. 

I've managed to get Marion up to Colorado 6 times with friends and family. She's gone to Park City Utah for a ski-holiday with her best friend during the Christmas break. And there has been much more.

Unfortunately, there have been a few opportunities that overlapped into custody timeframes that I have no say in and as a result these opportunities were blocked. 

One of these opportunities was earlier this year when I tried to fly Marion to Boston to spend time with both myself and her sister India. India wasn't doing well and had been in the hospital for a very long time. A visit from Marion would have been an incredible morale booster for everybody. A good friend knew that I was trying to get Marion to Boston and offered to pay for her plane ticket. But because of timeframes, a portion of Marion's Boston trip would have to have been during a custody period that wasn't mine and I had no say in. When I reached out for permission, the response was a "no" because of school. When I offered to contact each teacher and get all assignments so no schoolwork would be incomplete, the answer was still a "no".

The other major opportunity for Marion was presented not long ago. Marion was invited to accompany her best friend to Europe for 2 weeks. They were to go to Finland and Germany. Marion was really excited when she heard the news and I was really happy for her. Not many kids get to fly from New Mexico to Europe with their best friend for an all expense paid summer holiday. As with the Boston trip, this holiday would overlap into a custody period that wasn't mine so I'd have to get permission. After multiple attempts to get an answer, I received an email with one word, "no". There was no explanation, no rationale, nothing but a "no".

Needless to say, my heart breaks for Marion.