Wednesday, February 16, 2011

Treatment Day 4

I am finally back among the wired and I apologize for being late updating. Internet connections are harder to come by around here compared to the states. I actually got connected last night around 8pm but honestly didn't have the energy to update once I got Giovanni to sleep. Something told me to get rest because it would be a long night, which it was.

We entered the hospital on Sunday at 3pm. We were told we were starting in the old ward and would move to the new ward sometime this week. The room isn't as bad as I was expecting. It has two large windows which is all I need to feel a little sanity. There is also an exercise bike...I haven't had the time for a workout yet though. Giovanni was immediately started on some medications and a breathing treatment to prepare him for the chemotherapy that would start the next evening. He also had to endure having a needle finally put into the box in his chest from his first surgery. Bless his sweet little heart. It isn't a thin little needle and even with the local anesthesia cream they put on him it was painful. That has ended up being the first of 4 catheter procedures since he was admitted.

That evening they brought my dinner but nothing for Giovanni. I found this odd so I asked our nurse, who spoke fairly decent English. He said it would be later. Later...still nothing so I asked Laura, one of our doctors...she said it would be later...still nothing later again. Giovanni was not supposed to have any food after 8am and I wanted to make sure he had a good dinner since I know a breakfast is hard to come by in here. Finally, I called our nurse, "Mas" in and said it was about his bedtime and I needed to know if his dinner was coming soon. He said he would be back and came back 20 minutes later with a bottle of formula/meal replacement-ish thing. What the heck is that? He asked me if I had a bottle top for it?! He eats real food and he NEEDS real food. This is a strapping, 13 month, 25lb. boy who eats pasta, pizza, steak, name it, he eats it. He also feeds himself with a fork and spoon. A bottle of stuff isn't going to work. He came back a few minutes later with the doctor on for the night and had a jar of baby food. Again, what the heck? He has never had baby food and if he had he is 13 months old now and needs real food. They apologized and said that it was too late to get any other meal for him, would it be ok for tonight. So, I fed him some pureed stuff. It wasn't even thick consistency like the higher numbered baby food jars at was like thick broth. He was starving though so he ate it. He nursed like a mad man all night long and when morning came I asked at 7am for his meal (since the night before they assured me the food issue was taken care of and they have breakfast, lunch and dinner here) and I was told he could not have any despite it being an hour from his food cut off. I had some crackers and other things In my bag and fed him what I could. The language barrier is really quite the challenge. That afternoon as we waited for his surgery time, at 2pm, to approach he was beginning to scream like a starving lunatic. He was so, so hungry and I continued to nurse him until noon (and once around 1pm because he was hysterical) but he wanted a meal. I also at this time was starving because they didn't bring my meal for lunch. I can't leave the room so I am not sure how they thought I would eat for the day and the shredded carrots with cheese they gave me the night before somehow wasn't sustaining me.

I took him down to surgery and stayed with him until he was anesthetized. He looks like such an angel and so tiny on the big, adult sized table. They harvested more stem cells, performed a skin biopsy on his arm and a spinal tap. These are the cells that will are currently in the lab having the ARSA enzyme correction made for his reinfusion on Friday...these cells are the potential life savers for our sweet boy. He came back from surgery angry (likely still hungry), puffy and tired. I nursed him and he settled a bit and slept for a while. He was to begin his chemotherapy in a few hours. I have felt so anxious about this entire treatment, as I have expressed. It had gotten to the point that I had been so anxious waiting that I just wanted them to get it over with at this point so I could tackle the experience head on rather than living in the horror of it all in my mind. He needed a decent sized blood transfusion so that was done first through an IV in his foot that was placed during surgery. They would be taking Bulsafun (the chemotherapy) every measurements in the blood after each administration to make sure levels were where they were supposed to be. It could not be done from the same port as the administration obviously so the extra IV was needed. He was also on continous monitoring for heart rate and respiration. This machine was on the opposite side as the blood and chemo and I was holding him in the middle on the bed, trapped under a bunch of wires. I had to be "freed" by Brad and Mas :).

So...finally, the chemotherapy started. By this time he was up playing and laughing, walking about in his bed. It was a great sign. They give him an anti-nausea medication and he didn't seem to have any issues at all. As with everything, he was taking the Bulsafun like a champ. Dinner arrives ***sigh***...his meal is all pureed food. W...T...H? I had a conversation during the day with the nurses about his diet AGAIN before he went into surgery. I had, by that afternoon described, no less than 3 times what he eats and gave examples when asked. I didn't know how else to say, HE EATS NORMAL FOOD LIKE YOU OR I other than saying just that. I gave him some of my food and yogurt we bought (I am OD'ing him on yogurt for the probiotic benefits). It kept him happy. I ordered the meals for Tuesday off of the sheet so I know he was going to receive a proper meal for lunch and dinner the next day. Brad headed home (Which by the way was still the hotel...they moved moving today). Giovanni had a busy room overnight but overall slept well and didn't seem to have any issues from chemo at that point.

The morning of Day 3 in the hospital arrives with my "breakfast"...none for him, so I shared and gave him more yogurt. I use the term breakfast is some graham cracker like crackers, some toast like crackers and some jelly and honey. It will do, especially given I don't get much activity while in the room. He is still doing really well with the chemotherapy. I am so, so relieved. The day is fairly uneventful. Daddy vists for a while and we had lunch. He was happy to eat real food and everyone who came in the room seemed so surprised to see him sitting there happily eating pasta, fish, some zucchini and pear sauce. I guess at 13 months old he would be eating out of a jar around here. By lunch time I am seeing a different looking Giovanni. His skin tone is pale, he has darkish-red circles under his eyes. Now he looks like he is having Chemotherapy. After lunch he takes a 3 hour nap while I piddle around the room picking up, organizing our stuff and playing Angry Birds on my phone (Thank you, thank you to the creator of Angry Birds). I finally decided to wake him up because he never sleeps that long. Around 4pm the new nurse came in (I have yet to figure out shift changes since they vary and they don't tell you they are coming or going until someone new comes in) and asked if he had been screaming a lot. I said "No" and she said that was a common side effect of the anti-seizure medication he was on. No more than 30 minutes later the screaming started. One of our poor doctors, Laura sat with him the few minutes I was out in the hall talking to Dr. Biffi because she can't be near the chemo since she is pregnant. I could hear Giovanni screaming the entire time. He was in absolute hysterics. It broke my heart. He promptly fell asleep, woke to eat and then passed out for the night. The night was ROUGH. Reader's Digest Version is multiple attempts to replace blown IV from foot in both arms...both times failed. That lasted from about 1am to 3am. At 4:30am they had to replace the port on the chest catheter. That lasted about 45 minutes. The cries are so painful to hear.

Today was a good day. His mood was much better. I spend the entire day entertaining him in the space of his bed or in the chair next to his bed. It truly feels more exhausting than taking care of 4 kids. He has a line running from his chest catheter that splits off to two different machines. One of my jobs is to make sure he doesn't pull that out. I can only compare it to the Bull in the China Shop. I have to keep the giant bull from breaking the china and it is an exhausting task. I feel like a crazy anxious person chasing lines while still trying to play with him and keep him happy. I really am so proud of how he is doing. He is so strong and while I know that the next few weeks may be rough as his counts dip and he receives the infusion of new cells I can tell he is so strong and not about to stay down.

It is after 9pm here and I am so tired from last night. I also am feeling quite a bit of sadness as Brad, the kids and Tarah were finally able to move today. I called a few times to see how it was going and the kids sounded SO happy. I wish Giovanni and I could be there with them. Brad said Aria has had a hard time with Giovanni being gone. She misses me too but that is a different missing than her baby brother she adores. She knows the seriousness of all that is going on and I know that weighs much heavier on her than a 6 year old should ever take on. It was nice to hear such joy in her voice. I hate not being with Liviana. Each day is so precious with the kids but her in particular. I saw her go from walking to not walking in one day and I am terrified of something dramatic happening again and me not being there. I talk to her on the phone and her voice is pure heaven to sweet and soft.

I have not been home, or left this room accept for the 20 minutes after I took G down to surgery since Sunday...tomorrow is Thursday. I am growing weary of the "box" as the father of the first patient to undergo the gene therapy from Lebanon calls it (more on them in upcoming posts). That is scary since I have a loooong way to go. It has been raining here for 3 straight days...our punishment for all of the, "It feels like Spring here" posts. That adds to the feeling of confinement...that and the fact that all the TV channels are in Italian so I keep it on the MTV, all music channel and hear the SAME songs 10 times a day. I think I will escape for a bit tomorrow evening after chemo is complete to see the kids and let Brad or Tarah relieve me. I know Tarah misses G terribly too. Brad is nursing a broken foot. A combination of swelling that happened over the past couple of weeks because of his blown out shoes and a bad step last night. As usual, one of the nurses on our therapy gave him some random pills to take. She wanted to take him to xray but he knew he had to move today. He moved through it all with the swelling and pain :(.

I have much more to say but I feel like Giovanni is like a newborn...sleep when he sleeps....otherwise I am the walking dead.

Thank you for all of the continued support on the scary and hopeful road.

Hug Your Babies!



Erin Gaeng said...

A long time ago I had stumbled across your blog and admired your talent with photography- I had stumbled across it again only to be directed here to read your story. I wanted to thank you for sharing it.

Just wanted to let you know that you have a friend in Md, praying for you and your children. You are such a strong woman- and those babies of yours are so lucky to have you as their mother. My thoughts are with you- and I am looking forward to reading about how that little boy and girl of yours are beating their illness.

Take Care- Erin G.

Kathleen Kirkpatrick-Holt said...


We are always thinking of you guys. I admire your strength, Amy. You're an amazing mother.

Candice and Rob Beal said...

i might not comment all the time but im reading all your post. You are in my prayers. I am so sorry.