Friday, January 28, 2011

Breathe In...Breathe Out

That is my new mantra. Breathe in, Breathe out. If I stopped breathing everytime I got too stressed or concerned I would not be doing too well right now.

Giovanni is "home" from the hospital. You all would have been subjected to my constant ramblings while we were there but the hospital building we were in did not have Wi-Fi (I am hoping that the new building for the 6 week stay will). There were some bumpy moments and interesting times navigating a foreign hospital system and mostly unknown language but Giovanni is doing great and hopefully can enjoy the next 17 days before he begins his 45 day difficult hospital stay.

This surgery was to have a central line placed for Giovanni as well as one round of bone marrow cell collection. The central line that we decided to use for Giovanni is superficial and a box that is placed under the skin so there is no risk of him pulling it out since it will be in for so long.

We went to the hospital Wednesday afternoon so he could have another blood draw (10 vials!) and Brad, Aria, Miles and I could also have blood draws so a complete family gene sequencing could be done. Brad and I both did draws for this in Omaha but as of last week that blood had not yet arrived here. We were both worried about how Aria and Miles would do since neither have had blood draws before. They did awesome and despite us trying to distract both of them from paying attention during the process they both wanted to watch. I swear Aria will go into the medical field when she is older. Giovanni was admitted to the hospital a few hours later. That is when the interesting part started.

It is an eye opener to realize how essentially, spoiled we are as American's. I want to preface this by saying the doctors and nurses are WONDERFUL. We feel in very good hands when it comes to medical knowledge and expertise. They are brilliant doctors and warm, kind people that makes the process easier. I am a very involved person when it comes to medical decisions and processes and you certainly know I have strong trust in this team when there is a language barrier involved and I can't know every little thing that is being said. All of that said, it is a very different experience in the hospital here than at home. The first thing I noticed is that there was no soap in the bathroom. I don't mean, shower soap or extra soap, I mean NONE. There wasn't even a dispenser on the wall. There also were not any towels so when Giovanni had a Betadine bath prior to surgery all we had to wrap him in was a clean sheet that hadn't been put on the bed yet (you have to change the bedding yourself too). You have to pay for television...5 Euro a day to start. A guy came around shortly after we checked in with a machine to turn on the TV and take money for the viewing. I said I would do just the one day so I could check to see if it had any American channels like our hotel does and he said I could not do that, I had to do at least the 3 day @ 10 Euro. Of course...no American channels so I put it on MTV for music since they actually play music videos on their MTV. I think the most obvious difference was the noise level. We were on the Pediatric floor and most the kids on the floor were not "sick" with an infection or illness but rather diabetes or other diseases being managed by medical staff. So, they were not laid up in bed but rather running the halls, screaming, playing, basically sounded like they were having a party. It wasn't just in the middle of the day though but this "party" went on until 10:15ish at night and after that there were still random outburst of noise in the halls. We had a roomie (who were the nicest people despite our complete language barrier) but they were clearly night owls who did not turn out the light and TV until 11:45pm. The TV was shared but mostly on our side. The lights lit up the entire room so when their light was on it was like our lights were on. I am SO glad that Giovanni passed out at 7:30 the first night and I didn't have any issues with him waking up and not going back to sleep given the bright room and noisy surroundings. Our roomies had some guests arrive at 10pm and stay for about half an hour. There were no whispers or quiet vists as they saw the sleeping baby and mother next to them...it was all very odd to me. As I laid there staring at Giovanni sleeping I was willing him to please stay asleep and screaming, "Be quiet, turn off the lights, go to bed" in my head. It really felt like a twilight zone given the time of night and the fact that we were in a hospital, not a camp. Finally, at 11:45 they turned off the lights and TV and I was able to go to sleep along side Giovanni.

The next morning G was not able to have any food after 8pm and no drink after noon. I figured that breakfast would come in the morning sometime but quickly realized that they didn't serve breakfast when the cart, that pulled up the night before in the hallway calling for people to come get their food didn't arrive. At about 7:15 I headed out with Giovanni to the shops below the hospital hoping to get him something to eat at the supermarket....it was still closed. A cafe/pastry shop had to do and I got him an apple struedal.

Surgery was scheduled for 2pm. They came up to get him and I was able to carry him downstairs to the surgery room with Dr. Biffi and Dr. Larioli (Allesandra and Laura). He was really, really ready for a nap so the timing was good. He knows Laura from seeing her all the time and he let me hand him off without any fussing. It was hard to do for me, nonetheless. Allesandra and I stood, waiting for the elevator. She is pregnant, due at the end of April so she could not be in the room for the line placement since x-ray is used. She is the lead doctor for Giovanni's treatment. She saw I was emotional and told me he would be fine and that it was not too invasive (was not supposed to be at least). I told her it was just hard since he is "healthy" right now and it marks the beginning of this process. She said she knew it was difficult and that it shows we have a lot of trust in molecular biology and science since he isn't showing symptoms yet but we know he has MLD and needs treatment. We got on the elevator and had probably gone down 1 floor when her phone rang. There was an emergency in surgery and they needed the room so they would have to postpone and we would have to go down and get Giovanni. I was happy and relieved yet anxious to have to postpone this process more. When the elevator door opened Laura was standing there holding Giovanni, still dressed in full scrubs, Giovanni laying on her chest comfortably. It helps the process that he comfortable with the them. We headed back upstairs and waited an hour for them to come back for him. This time there were no delays. We were told that it would be about 2 hours. We waited in the room and then decided to run downstairs to the market and a book for me to read since I was without internet. The book store (Librerie) has a tiny shelf of "In original language" books so I picked up a Joyce Carol Oates book to pass the time. The 2 hours quickly turned to 2.5 hours and then into 3 hours. I was very anxious and began pacing the noisy Pediatric halls. Three of our doctors came in to let us know that they did have some issues placing his line because of how small he is and the vein was and they were able to get that done and move onto the cell collection. They were very reassuring though that he was fine. Deeeeep breathing! They said it would be another hour or so. We waited more and an hour passed. I was pacing the halls again about an hour and half later when I saw a large team of our doctors and nurses from the surgery coming down the hall carrying Giovanni. Neither Brad or I were prepared for how he looked. He normally weighs about 24 pounds and he probably was about 40lbs. He looked like a little Michelin man. Allesandra explained to me that they needed to make "surgical room" since the vein and area was so small. My poor baby. He lost a fair amount of blood and his red blood cell count was low so he would receive a red blood cell transfusion as well as be on some pain medication that would wean over the next 24 hours. As they brought him in the room Allesandra was telling them to let me nurse him. He whimpered in a horrible, raspy, deep sound and cried. They handed him to me as they got all of the lines situated and got him hooked up to the oxygen monitor. He was anxious to nurse but seemed to be in so much pain from the intubation. I could not believe how big he was in my arms. His eyes were just little slits. It was like he had been in a prize fight and he didn't win the battle. I could see on Brad's face that he too was taken aback by how he looked. He stepped out of the room while they got everything situated. Allesandra explained everything he was receiving and that the pain medication would be weaned overnight into the next afternoon. Brad returned, the doctors and nurses left and Brad helped me get situated holidng our sweet, jumbo baby on the bed. He fell asleep comfortably laying on my chest. Brad headed home to check on the kids and help get Liviana to bed. The monitors for the blood he was receiving kept beeping. The people who shared a room with us were very concerned about Giovanni. They were really sweet, wonderful people. I could not reach the button to call the nurses so the father of G's roomie went out in the hall to get a nurse. She came in, looked at the machine and the lines and hit the buttom and left. 2 Minutes later it beeped again so the father went out again to get someone. When the doctor on call came in she said, "Mama, you need to push the button to call the nurses when it beeps". I said, "I can't reach the button and I am not going to get up with him in this condition every 2 minutes". She stretched the button over to me and the father told his daughter and wife to help me if I could not get to it when the machines beeped. It continued this way for an hour or so. Nurses in and out of the room, looking at the lines, hitting the silent and heading back out. Finally, a nurse came in and felt around on his IV location and left to get another nurse. They determined that his IV was partially out and that he needed a new one placed. That was really not what he wanted to deal with right now. Off to the room we went for a new IV...poor little guy. His cry was pathetic with his sore throat. They first checked the other arm which is the one he had 10 vials taken from the day before...that vein was no good. They ended up using the back of the hand on the same arm as previous. It was a long process and as I stood there over the table, hugging, kissing and telling him it was okay I really was not feeling well. It is ridiculously HOT in buildings. They have the heat cranked up like it is 20 below zero outside. I had felt like I was starting to get the congestion the kids have had for a couple of weeks and that night, after all of the exhaustion and stress I was starting to feel a bit worse than just a cold. They finished up the process and I carried Giovanni back to the room, nursed him and got him settled in bed. Our roomy was till up and I tried to rest next to Giovanni but I am one who doesn't like to sleep with any light on in a room so a room with full light on really isn't conducive to my sleeping, neither is beeping machines and regular nursing activity. I was really not feeling well at his point and was having regular hot flashes. It felt insanely hot in the room to me. It was now 11:45 and Giovanni woke up crying. I heard the mother next to say something to the girl, who was up drawing and the TV was on. I think she must have told her to go to bed because she got up and turned off the main light and TV and got in bed. The other light, that shined straight onto Giovanni in bed was still on. I think they had a hard time figuring out where the switch was since it was partially on our side. I laid there for a couple of minutes yelling, "turn off the LIGHT" in my head. It doesnt' seem to work well. I heard book pages turning and at this point decided since it was midnight that I wasn't going to be so accomdating anymore so I got up and turned off the light. It was time for her to go to bed in my opinion :). After getting up to turn the light off I laid down at the bottom of the bed feeling really sick at this point. I was shaking, hot, my stomach felt quivery and my head was pounding. This was...not...good. I laid the for a while and texted Brad letting him know that I was pretty sick and worried that I would not be able to take care of Giovanni well enough if he needed to be carried anywhere (if an IV issue came up again, etc). I was so stressed and concerned that I was not in a condition to take the best care of him at a time when he needed me the most. I also knew I needed to be there because he needed to nurse during the night. I went into the bathroom and called Brad and then laid back down on the foot of the bed. I really felt like crying. Now was not the time for me to be sick. It was obvious that I had a fever at this point. Brad showed up about 20 minutes later. He felt my head and I could sense his anxiety about the situation for me and for Giovanni. He went out to the nurses and doctors and came back with two pills they gave him for me. Now THAT would not happen in an American hospital....I am not complaining. They were unidentifiable pills and I am usually not one to take random pills handed out but as my mom said when I told her, "you must have been feeling pretty bad to take those without knowing what they were". Whatever they were my headache was gone in about 1/2 an hour and I finally felt a normal temperature come over me. In the meantime the doctor on duty and teh nurse came back in and began talking to Brad. He went out in the hall with them and they told him that I could not stay because I was sick and could not risk infecting Brad. Ignoring the fact that I would have been most contagious the day before and earlier that day and he had been with me non-stop and ignoring the fact that the best thing for him then would be me nursing him so he gets the antibodies for whatever I have (which was likely what they all had already the previous couple of weeks). I love my husband so much because he said to them, "That isn't going to happen, she won't go anywhere since she will need to take care of him and nurse him in the night". He came back to the room. I think the called Allesandra and they came back in and said I could stay but Brad had to leave since only one person could be there and that I could not sleep in the bed with him but rather on the fold out chair ("bed of torture" as Brad would probably describe it). I was still worried that I would not get well enough but didn't have much of a choice....I wasn't leaving my baby. Brad headed out (it was now about 1:15am). He arrived back in the room about 20 minutes later and was said that the hosptial grounds were all gated off and he couldn't get out anywhere. He was staying regardless of what they said so he settled onto the fold out chair. They saw him there but nobody ever said anything to us. Morning came and Giovanni was off the blood transfusion and only had pain meds that were being weaned down. He was looking less Michelin man-ish and was ready to play as soon as he woke up. They did a blood draw to see if he need more red blood cells and he was great. The doctors came in and said that if he was able to come off the pain meds he could head home around 2pm. Yay! How exciting that after how horrible he looked the night before he would be heading home to his anxiously awaiting brother and sisters. At 2pm we were discharged and will return on Monday for them to remove the bandage over the central line. He is so amazing and strong and I hope he will have that continued strength for the next long hospital stay when he will need it most. Within minutes of being home he was walking around, terrorizing the kids and trying to steal Livi's snack. I could not believe it has been just 24 hours since they brought him back to us looking and sounding so bad.

****I had a completed looong post but lost it all so this is my attempt to retype all that was already typed. I need a glass of Moscato after the frustration of losing all of it I had typed and what better place than where I can buy a bottle for 3 Euros****

The upcoming timeline for Giovanni will include additional testing as well as an MRI to provide baseline. On February 13th he will be readmitted to the hospital and on the 14th he will undergo another small surgery to have more cells harvested and then will begin chemotherapy. I am not looking forward to this one bit. Motherly instinct still tells me to grab him up and run. It is more difficult than I imagined. I kept telling him I was sorry after surgery because I know he doesn't understand why we are doing this to him. I hope, however in the future that he understands and will be living a normal life...I pray every minute for a normal life for him so he can thrive and live the life you always imagine for your children. So...he will be in for 45 straight days and 15-20 of those he will be required to remain in his bed until his blood cells get to a level they need to be to protect him if he falls. I can't tell you how afraid I am for this upcoming hospitalization. It makes this little hospitalization seem like a cake walk. They did tell me that for the next hospitalization we will be in the new part of the hospital that is technologically advanced and we will have just their own doctors and nurses round the clock. No more screaming children, night owl roomates or soapless bathrooms.

Prior to that hospitalization we will also be moving to an apartment (flat). We have been living in two hotel rooms that are joined together and you can imagine with 7 of us it gets a little chaotic. We will have a full kitchen space so I can cook with more than one burner and an oven...yay! The only downside is that it not in the village we are in now so we will have to take the underground to the hospital. It is still in a neighboring village however so I know it will be a short ride. We will miss the little shops, our market, our Farmacia but I know there will be places there too and we will adapt.

Liviana also has an appointment on Monday with the physical therapist and I am hoping that she will receive the walker they ordered for her (did I mention that in my last post)? They had the technician come out and look at her walking and standing as as they concluded in Omaha they are afraid that full leg braces will shift her hips and cause additional issues for her. They instead measured her and selected a stand up walker, like a scooter and will try just lower leg braces that will help her with standing only when she is using the walker. She just lights up when she is walking. She has an amzing fighting spirt and strength. She isn't taking any of this as a sentence for herself. She will continue doing all she can do and more. I had a chance to talk to Allesandra about Liviana while we were in the hospital and she said that Liviana has a fairly slow progressing MLD given her 9 months of onset and where she is with her speech and motor functioning. I so feel blessed to still have her where she is given my research and exposure to other MLD children. I don't take any of the moments with her for granted and the fact that she was still able to say, "I love you" when I was getting her down for nap. I will always try to remember that sweet voice in my head even when I can't hear it in person anymore. I mentioned to Dr. Biffi that Liviana has complete stopped with some of her symptoms like the constant drooling and peripheral nerve symptoms like screaming during diaper changes (she started that clear back in May). She seemed intrigued when I told her that but she said that the change of environment, activity, etc can help keep her neurological system strong. I pray for a miracle...I believe in them and hope for one with her. She is truly an angel living among our family. We will continue doing all we can to keep her strong each day.

There is another family who arrived this week and was signing their mountain of consent forms on Wednesday when we were doing blood work. They appeared to be from the Middle East and the mother and I exchanged knowing glances of our painful journey's before we were ever able to speak to one another. We had a chance to meet them briefly that same afternoon. They are from Egypt...they have 3 children, two of whom have MLD including the little 6 month old guy they have brought to Milan for treatment. Her English is very little but despite that her and I share an understanding as mother's on this journey. We look different, our spirts are changed forever and I swear you can see that in our faces. When I am out and see mothers with chilren Livi or G's age I see something different in them than I see in myself. It is hard to describe....it is a carefree nature, a peace, a knowledge that thier children will be there for years for come. It is a hard difference to describe but I know I am not like them anymore...I am forever changed just as the other mother is changed. I can see the strength and fight in her eyes and I hope she can see that in mine as well.

Gah...I cannot remember what else I had typed on my first post...frustrating. Oh...I am better. I awoke the next morning with nothing more than a nasty cold an congestiong. I think my body was telling me that I was exhausted and stressed and I will try to heed the warning better next time.

I must go now. Brad and I are going to try to spend some time together tonight alone. We want to do things with the kids as much as possible in the next 16 days before Giovanni's hospitalization. It is will be hard on the kids. They missed Giovanni and worried about him terribly on this last hospitalization. That is long time to go without their sweet brother around. They will not be able to see him accept through glass for the 15-20 days until his cell count is where is should be and that will be hard for them. Brad or I must be in the room at all times so our lives are going to be dramatically changed for those 45 days. We will only pass in hospital room and will have to find a way to stay strong together even though we will be apart. I am hoping that I will have internet or I may go mad. I also will be able to post more often rather than these giant novel posts.

My computer was sent from home last week from the wonderful Angie Lauritsen. It is Milan and will be delivered on Monday. You know what that means....photos will be coming your way. I miss having sessions and processing photos. It is cathartic and I can't wait for spring to really set in here so I can try to get out with the kids without a risk of horrible coughing starting. I will always have my camera in hand in the hospital though and have photos of Giovanni from this last stay (prior to surgery). Thank you so much Angie for sending the computer for me!

I also wanted to say Happy Birthday to Jennifer Hendrickson who celebrated her birthday on the 28th. I miss you so much and you are an amazing friend! We could not be doing all of this without you.

That is all for now...I think :). I didn't proof read this and I am sure I left things out on the second go around but I have been on the computer WAY too long. I appreciate you all and those who are following this difficult journey along side us.

Hug Your Babies!

Amy

11 comments:

Anastasia said...

Amy, I am thinking of you and praying for a miracle. You are an amazing woman, Brad is an amazing man, and your babies are all angels.

Much love from my family to yours!

Emily said...

Ah your story brings tears to my eyes every time. I think about you guys all the time. I hope you can enjoy the little things while you are in Italy. (((hugs)))

Vicki said...

Giovanni is such a strong little guy. I know it must have been so hard seeing him after surgery :( Thankful to hear he bounced back great, though!

I miss you all so much. Glad you are feeling better. :)

Oh and I'm praying the hospital has wifi, too ;)

Vicki said...

oh and I forgot to say... I <3 moscato. Seriously. Found some great stuff at Costco and its much easier on the pocket book than the stuff at Whole Foods. YUM-O. Thank you for introducing me to it (I'm sure Bobb is not thanking you lol).

jennifer said...

sending your family sooooo much love!!!

Priscilla M said...

Prayers are still going for you daily. & will continue!

Samantha said...

Amy,

I am Tarah's sister Sam. I've come to the house before and have had the chance to meet your four wonderfully adorable children.
Liviana and Giovanni have been consuming my prayer life.
I have confidence that God is with all of you and He is walking beside you during this journey.

St Padre Pio, pray for us.
Blessed Chiara Badano, pray for us!!

God bless.

Kathy H said...

You do not know me but I found out about Liviana from Rachel McCabe, whose Mighty Mia also has CDH.

I was wondering what your facebook site's name is, so that I may also follow you there.

Livi and G are both on my prayers list as well as you all.

I prayer for strength for you and Brad and understanding for all your children.

God be with you

Anonymous said...

so glad that (even though there were minor complications) G's line is in and he is preparing for this life saving treatment! and what wonderful news about Livis walker.. she will be so excited to have that to help her be more mobile.

.. and, as far as that "look" (the carefree look that has left your face and still on others) ... I know exactly what you mean. The day we found out that Anthony was gone .. as I walked out of the hospital and saw all those happy, carefree expectant mothers.. I wanted to scream at them "dont you know? dont you realize? anything can wrong at any moment!" .. and in my 2nd (and this 3rd pregnancy) I still feel that way. Nothing bothers me more than when you see a mother yell or hit or take for granted ... or just not know how precious that little life is!

.. anyways.. Im glad to hear that you guys are getting a flat .. and that info on the healthcare there was very interesting. The healthcare here in Germany is very different from that in the USA too .. for one.. they dont wear gloves when they draw blood (unless requested too) ... but, they do have soap and supply towels in your room. And, when I had Aly I got a private room.. but thats just because of tricare (the militarys health insurance) paid for it....

Cindy Collins said...

Amy, thank you so much for the update. HUGS!!!!

Anonymous said...

Praying for a miracle! I can't imagine the torture you must feel - I felt so sick reading what you are going through. May God keep pouring grace and strength into you.Love and prayers always ~ Cassandre S.