Friday, March 11, 2011

Day 28: It's a Bird....It's a Plane...

It's SuperG-Man! I know I need to *knock on wood* when I say that since he isn't out of here yet but I can't help but think he is something extra special. I am going to give up on saying I will post more often because I am always so surprised how long it has been when I start the next new post. I apologize. I was ill this week and had no desire to get on the computer at all. I am on the mend and feeling better and ready to start moving closer to getting out of here with our sweet boy.

Going back to my last post it seems like things have been up and down and all around. Last Sunday I was sitting here with Giovanni finishing lunch when I started hearing shouting coming from the room next to us. That is the room with the little boy from Egypt who is also undergoing treatment for MLD. As I started to get up the shouting turned to pounding loudly on the door. Their room and our room are the only two in this space, behind another door that exits to the main hallway. I realized that if she did need help she likely was unable to leave the room so I started to get up and go get someone's attention when I finally saw someone heading our way. I went back next to Giovanni and heard shouting and commotion as the nurse went running from the room holding a baby who looked very...VERY unwell. He then turned and went back into the room after motioning for other people to come help. In my mind, at that moment, he looked like he had passed away by his positioning and his skintone. My heart started racing a million miles a minute. I ran over and picked up Giovanni to protect him from anything and everything I could. Like I have so many times since we got here I wanted to run from here so fast with him. I did not know what happened yet, I did not know if it was as serious as it looked but all I knew is that Giovanni and that baby were going through the same thing and even though they are different children, it scared me to the core to think that something serious had happened to him and could happen to Giovanni. I waited, clutching my sweet boy as doctor, after, after doctor, after nurse streamed into the room. It was very quiet and I waited to hear a baby cry....hear something to indicate that everything was fine. Nothing like that happened but people were leaving the room rather casually like nothing really serious had happened. Finally, about 20 minutes later the nurse who was holding the baby when I saw him. I immediately asked if the baby was fine and he said, "Oh yes, he is fine" He went on to tell me it was a "fake alarm" and a communication issue with the aunt who was staying with him. Holy Cow! It did NOT seem that way at all. It was so very scary and I think my heart was racing non-stop the entire time until I heard he was fine. More doctors were in and out all night and an x-ray machine paid him a visit as well. I have since learned that he was pulled off of his line and it may have pulled on the port in his chest....I am not positive though. All I know is that he is fine, Giovanni is fine and that was a darn scary afternoon.

We had been awaiting test results for a long time regarding a possible infection with Cytomegalovirus. It is the most common infection post transplant and dangerous. Giovanni had a one test come back with a very, very small result and small viral load. They started him on an anti-viral immediately and we waited for many days for the final test results. In the meantime I questioned them on whether him having zero neutrophils would mean he could have an infection but no clinical fever, no other symptoms. I never got a straight answer. In the end, of course he did not have the CMV. I was not surprised and I am glad that he continues to be healthy.

Two days ago his neutrophils finally pulled up from zero and were at 100. They told us that they came up quicker than they would have expected (pssst....he's superG-man) so we should expect them to go back down again before maintaining the increase. Well...two days later they hold at 100 and they have decided that they will probably continue the increase upward :). I believe she said he had to be at 500 before they would consider releasing him. We are soooooo close.

He had to have a platelet transfusion again today and I am guessing this will be the last one needed for platelets. After they started the transfusion he started grabbing his chest at the location of his catheter and whimpering like it was bothering him. I looked at it and it looked very puffy underneath the catheter. I then noticed his shirt had wet spots on it and quickly noticed he had fluid running down his abdomen from underneath the bandage over the catheter. I knew that meant it was pooling underneath his skin and obviously not going into this system. I turned off the platelet pump and called a nurse and waited and waited (this is the normal pattern...I would say 15 min average wait time). Knowing the situation was serious I waited about 1 minute before going out in the hall and telling another passing by nurse to get our nurse now. She came in and thought I had called her for a kinked line...when I showed her what was happening she went and got supplies and another nurse so they could change his catheter. This would be change #10 since he came into the hospital. You could see the fluid built up around the catheter on his chest and when they tested it to be sure it had to be changed the fluid they put in ran right out of him. He knew what was coming. It is a horrid process. A big needle being shoved into a box implanted in his chest while people hold him down. I SO cannot wait to get him out of here! All was well after the replacement and the built up fluid will take care of itself. Poor babe.

I had mentioned on Facebook but forgot to mention here that he did end up loosing hair. He only lost his "old" hair, which isn't a bad thing, since his old hair was a mullet shaped section on the back of his head. He also lost a little from the very front and sides but the new hair he had grown in the last few weeks that reveals and adorable little cowlick on top of his head is still growing strong. I do miss the mullet a little though.

His skin has also gone through some transitions since his chemotherapy. He has darkened, mottled areas in some spots. It looks like he is an older person with sun damage. They said that will fade so not to worry. It is hard to see those outwards signs of what has happened to his body. He has stayed so strong and healthy that those are the only signs I have to tell me how hard this was on his little system. I was never really worried about him losing his was what him losing his hair represents that I was not looking forward to seeing. On a good note his rash on his face is gone that worried the doctors so much. It disappeared the same time the drooling and teething ended...imagine that :).

Liviana is doing well. Her boisterous laughter is enough to make anyone smile and laugh along. Brad makes her laugh so hard when I am home. She also has this breathing in laugh that she does that is hilarious. She had seemed to be talking less but this past week when I was home more I noticed she is being chatty again. She woke up chatting up a storm and it is just music to my ears. She has an MRI scheduled for next week. Brad and I have let them know that we are not going to put her through any tests that we determine to be too upsetting or stressful for her. The EEG and Nerve Conduction test are two that are going to be no-go's for me. Our goal, as she lives the rest of her life, is to make sure she does it happily...not being put through painful or stressful tests. I am interested to see the results of her MRI compared to her MRI from November and that will involve an IV being placed which we hope can be done without much stress to her. She really is a light in all of our lives!

Miles and Aria are both sick. Fevers and headaches. Bless their hearts. Miles got sick first and that is when you realize, yet again, how each child is such an important piece of the puzzle in the daily lives of everyone. He is our entertainer, our talker, our..loud talker. He always has something to say, a question to ask, a story to tell. When he was first sick on Tuesday though....the place fell silent. It was very quiet and very sad. We so need all of our kids healthy and together! His cheeks got all rosy, his big brown eyes, curly hair and dark, long eyelashes looking up at just want to make it all go away. Aria got sick today and is being nursed to health by Brad and Tarah. Liviana has avoided it so far but I know she will eventually be next. We have to be on top of making sure she doesn't have a fever for long since it can speed up deterioration for her. Please pray that she can stay healthy and if she doesn't that we are able to keep the fever under control.

I find myself with a headache and I have had to deal with the computer going out twice while I have been working on this so I am going to wrap it up quickly.

Remember, the fundraiser is this Tuesday at The Prestige Lounge in Omaha from 5-9pm. You can follow a link to a Facebook event page on my previous post. There will also be a story in the Omaha World Herald on Sunday. I want to thank Carol Bicack for contacting me and being so kind and thorough as she prepares the story.

I have a snuggly buddy to crawl into bed next to. It is hard to think that all of this we are doing for him won't work. It really has to work. I look at him and cannot bare seeing him go through the same things Liviana has and will continue to go through. I never thought fear and hope could be so intertwined together. I can hardly tell them apart in my own mind as I think about Giovanni's future. I do believe in miracles and I hope they will find their way to both him and Liviana!

Hug Your Babies!



Christine Fiscer, Birthkeeper said...

Oh Amy. I have been following as much as I can, and have been praying for all of you. I cannot even begin to imagine what kind of emotional roller coaster this has been for you, and will continue to be. SO much love sent your way!

~Christy from CM

Jolene said...

Amen on the nixing of the Nerve Conduction Study Amy. We haven't done them since pre-transplant. Sam has had the needle come out in the middle of 2 transfusions now and it is very painful for him so I completely empathize with you. Yes, this does have to work for G! Soooo praying alongside of you!


Anonymous said...

thats amazing news that Super-G is doing well!! and I totally agree in you decision to have Livi live a happy life... not stressful test after test :)

.... what about Aria and Miles tests? I remember a while back you said they were tested for MLD and I assume that "no news is good news"? right?

God Bless you and your family!!

(and Im so sorry that I couldnt find those thickening packets) :(