I really hate titling my blog posts. I should have just started titling them as the number of days we have been here to make it easy. This was the best I could come up with....Exciting huh?
We have had lots of coughing going around here. Not that regular old winter cold cough but a nasty, very wet, very loud bronchitis type cough. It started with Aria, then Giovanni, then Liviana and then Miles. Miles is the one who never gets sick and he wasn't able to escape this nastiness. As usual, things hit Liviana harder. She can't catch a break. At first she seemed to be doing well but the night before last she woke up in the middle of the night and scared me to death with what seemed to be straining breath. I felt her abdomen and could tell that she had pulling...I could hear that she had the pulling (I am assuming moms know what I mean by "pulling"...I know CDH moms do). I called them first thing upon waking (this all happened around 4am) and they said to bring her in. Her lungs sounded clear, no temp so they gave us a prescription for some bronchial passage solution to add to the nebulizer they gave me for Giovanni a couple days earlier. We headed back with orders to call if she started running a temp and orders to not have Livi and Giovanni sleeping in the same room (I normally sleep between them). All was well until last night around 10:45 when Liviana woke up....with a temperature. I was frustrated with our thermometer which first read 98.5, then 99.3, then 100.1 all in a matter of 2 minutes. She felt warm so the highest I assumed to be correct. I gave her some Tylenol, did another breathing treatment for her and settled in on the most uncomfortable clot I have ever slept on with her for the night. She slept great and woke up seemingling breathing better. She still felt warm but the thermometer was giving me a low reading. I honestly don't trust it at this point. I called Miriam at the hosptial and said to come back in this afternoon. Liviana's spirit has been great, even with the fever. Usually when she is sick she becomes a shell of herself, hardly talking, playing, etc. That hasn't happened this time. In fact, keeping with the way she has been since we got here, she seems better than at home. So, today revealed that she still has clear lungs but definitely a bronchial issue. They did blood work (everyone in Milan can hear when they draw blood from Liviana) to rule out a bacterial infection and the need for antibiotics and she is all clear so we will keep up the breathing treatments and she should be on the mend quickly.
Back tracking now to this past Saturday. We wanted to take the kids somewhere before Giovanni's hospital trips began but had a hard time deciding given we are somewhat transportation challenged here. I feel this anxiety and urgency to take Liviana places to see sites she won't be able to soon experience and see. I also realize it is the simple things that bring the biggest smiles to her face. We thought of going to Genova on the Italian Riveria since it was only a little over an hour and a half away. The trains are reasonable here but staying at a hotel and food, etc just wasn't going to fly. We decided to make a trip down to D'uomo in the center of Milan. It is the location of Santa Maria Church. I read somewhere and now can't find my source, that it is the 3rd largest church in the world but I found another list that had it at 6th or so, so who knows. It was huge, nonetheless and awe inspiring. Really, truly amazing. Being Catholic does make it an extra special experience. I felt like I just walked around with my mouth open in awe the whole time looking ridiculous. I took many photographs and you will have to wait until this weekend when my computer arrives (thank you, thank you, thank you Angie) to see them. I can't wait to show them to you all. Here is a link to an info page on Wikipedia for the church:
After going through the Santa Maria we walked around the shops, ate lunch and soaked up the VERY busy streets of Milan. The kids were exhausted when we were done and we were super lucky to catch a mini-van cab that fit all of us since large vehicles are hard to come by around here.
We are scheduled to be at the hospital at Noon tomorrow for a blood draw for Giovanni prior to his surgery. Aria, Miles, Brad and I will also have blood drawn so complete family gene sequencing can be done. I would be lying if I said I was not the slightest big anxious for Aria and Miles tests. I know that variable onset in families is rare but given what we have been through and the already statistical rarity of it all, I am worried that we will get some devestating news from the tests. Giovanni will then be admitted to the hospital at 2pm and will have surgery Thursday afternoon (the 27th) around 1:30pm. This is surgery just to place his central line but it is always nerve wracking to send a child into surgery. Please pray that all goes well. He should only be in the hospital a couple of days after the surgery. After the surgery I should be getting a timeline for when he will begin his chemotherapy and 6 week hospitalization. I am not looking forward to that and I am a ball of anxiousness, fear and hope all rolled into one.
Gosh, I know I had a ton more to post but I have dinner to get ready and a breathing treatment to do for Liviana.
I am going to try to thank people each post but this is NOT all inclusive everytime. So many people are to be thanked and I am slowly getting through what I can to acknowlege all of you. Thank you so much to Angie Lauritsen, Don and Jodie Lakin, Jenny Peters (your visit meant the world), Fran Krause, Father Bill, Jill Robinson, Jeremy Hamm, Jeanie Hays, Vicki Beauchamp, Mathiesen family, Schleicher Family, Bill and Paula Morse, Jenn Lamb, Missy Thomas, Kelly Langfeldt....Gah..I have a million more to thank but I am doing it off memory right now. You all are angels to us and more importantly to our kids!
I will post from the hospital after Giovanni's surgery and I will have updates, of course on Facebook.
Hug Your Babies!
Amy
Recovery Mode!!
5 months ago
3 comments:
our prayers are always with you. i think you are doing an amazing job. even if you dont feel like it some days. im so glad livi is kicking this illness, and pray everyone stays well! ill be praying for good results with the blood testing. stay stong momma. were all rooting for you.
lots of hugs and love!!
Even though we can't be with you in person, we are following you in spirit! I'm glad you were able to do some sight-seeing; so many beautiful places in Italy.
My thoughts are with you. You are one heck of a mommy. God Bless you and your family as you fight this battle. I noticed after reading your blogs that you are receptive of alternative medicine. I read this "book" a few days ago and when I read your blog I thought of this book. It talks about the benefits of Chlorella. Not sure if you ever heard of it. Keep the faith momma and keep fighting for your babies. I'll be praying for you guys.
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