We made it to Milano and back for our February 16th to March 1st visit for Giovanni. Except for a 9 hour day in a tiny terminal with children who hadn't really slept in almost 24 hours, we didn't have many bumps in the road. The first week there was spent almost always in the hospital. Sitting in rooms, sitting in waiting areas, sitting in hallways...a lot of sitting. We had blood draws, x-rays, MRI, bone marrow aspirate, cerebral spinal draw, 2 nerve conduction tests, cognitive exam, gross motor function exam, ultrasounds, dental exam and unfortunately...tears. G is so strong. I really can't imagine too many 3 years olds being hauled across the world, jet lagged, away from daddy and siblings, poked, prodded, shocked (nerve conduction test), sedated, x-rayed and kept from eating one day for 7 hours during the day and handle it all relatively well. He had very few issues except when overly tired and a nap was all he needed to revive his sweet spirit. I adore Giovanni. He is the cutest 3 year old boy around. I love his smile, his humor, his love of tools and trucks, his "ok mama" his imaginative play and the way he trusts that we are doing what is best for him, despite this all being so difficult. He is cuddly and snuggly and even in my most sleep deprived state at night, I don't mind hearing the door open and his feet coming up the stairs to crawl in bed with me. The reality of his ability to even walk up the stairs is never lost on me.
His tests were all great....except his nerve conduction test. I really didn't expect any negative results. Giovanni is, by all accounts a normal 3 year old boy. I hate the nerve conduction test. It delivers shocks to Giovanni's arms and legs to measure conduction and velocity (among other things) of the nerves. I can't explain to him what the test is for in a way that will keep him from freaking out and crying. It is horrible...my stomach is in knots and I feel sick while the test is being done. Now that he talks so much more he screams, "G done, G done now, G done now" during the test. After the exam I breathed a sign of relief that it was done and we could move onto tests that were going to be less upsetting to him. We were told to go to lunch and return for his EEG. On the way to the EGG they told me that they were going to need to redo the Nerve Conduction test because there were some results that showed a decline from July. They wanted to redo the exam to rule out a testing error or to identify if there was a pinched nerve, injury or something else causing an issue. The second test showed the same results. On Giovanni's discharge it states:
*A reduction of the amplitude of the motor conduction of the right and left peroneal nerve with associated reduction of the nerve conduction velocity.
*A reduction in the velocity of the motor conduction of the right ulnar nerve
*All the other parameters evaluated are stable respect to the previous evaluation.
Their explanation and theory for why he doesn't show any deficits from this is that his Central Nervous System is compensating for the deficits. Why the deficits have occurred given all of the other test results is unknown. I don't do well with "unknown". We pretty much live our lives in an unknown state about BIG issues. I am startled and scared that this decline happened just since July. He has the night waking issues and I had gotten comfortable with thinking that they were growing pains. Now, I'm not sure. He often will tell me his leg hurts at night or even if we have been walking or after playing outside for a while. This is where the uneasy feeling takes over. I always have it in the back of my mind with Giovanni but now it is in my face screaming at me. As much as I loathe the idea of loading two kids up on a plane again and being away from our other kids and Brad, I am anxious for a repeat test. And...if it makes me crazy...I will pray for a perfect result showing that he indeed didn't have the deficits that discovered this February.
Liviana stayed well while we were gone. I heard her sweet voice in the phone while we were in the Newark airport. It is such a sound of perfection. I heard her excitement about us coming home...there were no words, just Livi's sweet coos. I am sure she missed the constant ebb and flow of activity from Adelina and Giovanni all day. I'm sure she missed mommy spa days where I trip nails, rub her feet and soak her up with coconut oil head to toe. I missed it all as much as she did and hearing her little voice made me want to get home as soon as possible and hug and squeeze her. She was sleeping peacefully when we arrived after midnight so it was morning when I finally got my hugs, kisses and smile.
Aria and Miles both seemed to have a cold when we got home and G and Adelina brought an Italian variety cold home with them. Since we got home Livi had become increasingly junky sounding. By Sunday she seemed very uncomfortable and was having brief little seizures. Brad had a long night with her awake and unable to get comfortable....we are all blessed to have him. By Monday I noticed she was sounding junkier and her heart rate was running in the 140's and 150's which is really unusual for her. Her smiles had all but disappeared. Cue, more uneasiness. My level of "uneasy" is in direct relationship to Livi's smiles. When it is hard to impossible to get her to smile and respond with songs, laughter, silly jokes and even Calliou...then I know something is wrong. Since she wasn't running a fever and that is the only time she really gets this unresponsive I am left wondering what is going on but knowing it is just the damn disease.
Throughout the day I would sit her upright and gently tap on her back and chest to get her to cough and then suction what I could. By Monday evening I had dusted off and rolled out the oxygen machine and she was on low support...still with the high heart rate. Tuesday morning I heard her oximeter going off and saw her oxygen saturations dropping. First course of action is to check the probe...it was fine. Next was to reposition her and suction her...neither helped and her saturations dipped into the 60's and 70's. I ended up having to run her support up to 8 liters just to pull her a little above 90. She ended up improving within an hour and I was able to turn her back down to 2 liters where she has been most of the time since. Her heart rate continues to go high and fluctuate back down to low 100's but it really hasn't been in her normal range. She continues to be fever free and her smiles have not returned. Concerning on top of all of this is that her urine output is way down. We have such a routine with her g-tube feedings and expected diaper change times during the day. Yesterday her diapers were noticeably not as wet a normal. I mentioned it to Brad and expected that her nighttime diaper would more than compensate but he reported this morning that it hadn't. When I changed her then again this morning, her output is still WAY below normal given the fluid she has received in the last 24+ hours. I am going to try to not read into it that much at this point. I have let her nurse know, who visited her yesterday, and I am hoping that we will have improvement with urine output later today. Praying for pee....that's a new one for me.
I am always preening and "spa-ing" Livana. Yesterday I was doing some spa treatments on her head and taking care of some "cradle cap" like areas and her hair came out. I was startled and it bothers me...along with everything else going on with her right now.
I wanted to thank EVERYONE who helped while we were away in Italy. The meals, the helping watch the kids, read books to Livi, well wishes, cleaning and loving (Grandma Price) and anything and everything else. It is very hard to go from being the mama with my kids, taking care of them 24/7 to suddenly away...knowing the home is disrupted. Every little bit helped them and helped me relax about being away. We have so many kind angels in our lives.
I have some feet spa treatments to give her now so I must run. I am sharing some photos of G and Adelina from his 2 year visit. Most of the time is spent in the hospital and I have many cell phone photos from there but it isn't what I choose to memorialize of our time there.
Hug Your Babies!
6th Annual CDH Awareness Day Blood Drive
3 days ago