Friday, May 16, 2008

A Little Bit Of Freedom

Did you notice what is missing in the photo above? That's right, he isn't attached to a ventilator. Unfortunately this is only a little break but it gives us a taste of what is to come. Milo has been given a preview of the freedom that awaits him when he able to rid of the ventilator. Yesterday we went to the hospital and met with Cloy (respiratory therapist) who gave Milo a new piece of equipment, a very small one that replaces the ventilator for a couple of hours each day, right now he get's to use it for 2 hours each day. It is called a carden vavle and it provides Milo with the constant pressure he needs to keep his airway open. His PEEP study from Monday shows that he has improved enough to be able to use this little valve. It has oxygen attached to it and it attaches right to the elbow adaptor on his trach so the only thing Milo has to drag around is an oxygen tube. It is so much lighter and we can make it as long as we want. Milo can now get anywhere in the house he wants to without having a big person hoovering over him pushing the ventilator. I think it's about as nice for me as it is for him. It took him awhile today to figure out that his range is much larger but before long I found him in the bathroom, at least he wasn't playing in the potty (yet).
Milo has huge ugly, nasty smelling granulomas (a type of scar tissue) surrounding his trach stoma that will be surgically removed next Wednesday. He will also have a bronchoscopy done since no one has looked down his trachea since the end of November. Hopefully he will have his g-tube changed at the same time because it has been leaking like crazy lately. After 15 months the poor little thing is wearing out and won't stay closed. Surgery is scheduled for 7:30 am so that means we have to be at the hospital at 5:30 am. If everything goes as planned Milo will be able to come home after the procedure, so let's all pray that Milo behaves himself. Of course if we have to stay at least we will be among friends :0)

Tuesday, May 13, 2008


10 days ago that’s how it began, with one wobbly step. His one wobbly step has turned into one pretty steady step which he practices often and has progressed into several wobbly steps! Today Milo took about 6 small sort of wobbly steps in the middle of the living room. Boy did he have a grin on his face as he did it, he is so proud of himself. He gets so excited he topples over but he has been trying more and more each day. Watch out when he is proficient at walking, there will be no rest in this house. Chasing him with the ventilator will turn into a full time job from a ¾ time job. Grandma and Grandpa sent Milo the coolest Radio Flyer walker wagon. It has a handle for him to hold onto and push his wagon which can hold his ventilator, battery and oxygen. He loves to walk up and down the sidewalk in front of the house all by himself. He can make it half way down our long block and back. It really is pretty neat, it is most independence he has had. Milo has also learned a new trick…he thinks it’s hilarious. When his ventilator circuit gets in his way or is holding him back he reaches down and yanks it off. He is very proud of his new trick and quite honestly he is so cute it is hard to be mad at him. He yanks it off and starts crawling away just as fast as his little legs will take him, then he will turn around and smile as you are trying to untangle the ventilator and catch up to him. We have had battles when I catch him doing it which usually end with him crying but still attached to the ventilator. The lesson doesn’t seem to carry over though, he still get free on a regular basis. The good news is that he is not in any distress when he is unhooked for a minute or two. In fact we had another PEEP study done which showed some more improvement but did confirm that he does still need the ventilator. We should find out how much we can adjust the ventilator by the end of the week.


Milo is getting much better at eating his baby food. He is consistently eating about 20 oz of baby food each day. We were able to cut back on formula a little bit and hopefully soon we will be able to cut back more. He is gaining weight and getting taller. He weighs at least 19 pounds and grew an inch since coming home. It’s true, these guys really thrive when they get out of the hospital. We are continuing to add new foods into his diet slowly but he is still kind of limited in the variety of food but he doesn’t seem to mind. He hasn’t been very interested in drinking from his sippy cup, we have to work on that if we expect to get that g-tube out! Holy teeth, the boy has a mouth full. I can count 6 on the bottom that are through and his 2 eye teeth are breaking through. On top I know he has 4 front teeth and I suspect 4 more but he doesn’t open wide very often & I’m not sticking my fingers in there!


Yup, we have 2 nurses that cover 5 days. We used to have 3 but one didn’t work out L Still no night nurses but it hasn’t been too bad at night. I find that Milo ends up in my bed more often than not. It’s easier and we both get more rest that way. Some nights he starts out in his crib in his room with me on an air mattress in his room and some nights he starts out in a little crib in my room but it almost always ends up with us in the same bed. He’s a bed hog though, especially on the air mattress! It’s not the breathing that keeps him up it’s the eczema and the itching. It’s a good thing we have day nurses though. It gives me a break, a nap, the opportunity to run errands and it gives Milo someone else to play with. He seems to like his nurses even if he gives them a hard time occasionally!


What might eczema and curls have to do with each other? Well Milo has the best crop of longish curly hair on his head but it is preventing any type of medicine or moisturizer to reach his scalp. His poor little head always seems to itch. Baby oil can relieve it for a little bit as can Benadryl or other oral anti-itch meds but this darn dry scaly scalp is driving both of us nuts. I’m afraid the beautiful curls may have to go but I’m not willing to give up just yet. Any ideas?


My boy has a foot fetish…he loves toes, feet & shoes. His, mine, or anyone’s who walk though the door. People get freaked out with him touching their shoes because they feel they are too dirty for him to touch but he doesn’t give up until he checks them out. I have to remind people that their “dirty” shoes are walking all over the floor he is crawling on then they lighten up a bit and allow an inspection so Milo can go on about his business. Milo’s cousins came to visit for a weekend and the first thing he did was go after Dylan’s toes. She wasn’t too sure she liked that but his persistence paid off. She let him get her piggies then he crawled right up into her lap, from there on she was alright with his curiosity and they played together really well. The boys took a little longer for Milo get comfortable with, they ran around after being cooped up in the car and Milo wasn’t too sure he liked that but after a while all the kids were playing nicely. It was so cute to see Owen and Milo sitting side by side in the recliner, giggling at each other. Boy do I see trouble in the future. Brett took his role as protector and every time Milo’s ventilator alarmed he made sure someone knew about it. I tried to convince him to just hook Milo back up but he didn’t think that was a good idea. At one point Milo’s trach was pulled back just a little and Brett could see the hole, I think he was kind of curious and grossed out at the same time!


Some days it seems like Milo has been home forever and the hospital is a distant memory and other days it seems like Milo just came home. I am impressed that we haven’t had any major hiccups only little ones.


I know some of you probably though we fell off the edge of the Earth by the lack of activity on this blog. We didn’t, well maybe I fell off the edge of cyber space but I think I have crawled back onto the ledge. Not far enough to be out of danger of another fall but I think I have my footing and hopefully will post more often. Still no high speed internet so no pictures but hopefully Milo will give me a break long enough to get that figured out on the phone. Oh yeah, there is a neat feature on this blog that gives you the opportunity to leave comments (or berate me into posting more info) for us. Just below the post it shows you the date and time of the message and just beside that it says 0 comments (or a number if someone has already left one). Just click on the comments word and you can leave a message; we’d love to hear from you guys!

Sunday, May 11, 2008


Today is Mother’s Day. A year ago I wasn’t sure I would be celebrating this day in 2008 with my little boy. A year ago today Milo was recovering from his 7th (and last) episode of having to be fully resuscitated. A year ago today I was wrestling with the information doctors had given me a few days before—Milo had a 10% chance of getting out of the ICU and that was being generous. A year ago today a neurologist came into his room in PICU to tell me that my precious little boy had moderate to severe brain damage and he would never be a normal child. This is why today is such a miracle. As I write this my son is not only out of the ICU he is happily playing on the floor in his own home. Not only does my son not show any signs of brain damage, he seems quite smart at times (I know he could have learning disabilities later). This little miracle is catching up to all the normal milestones for a child his age. Yes he does still have some obstacles to overcome. He has his tracheostomy, is still dependent on a ventilator to breathe and gets most of his nutrition though his g-tube, but he is a miracle! He is proof that God is in control, that man and science and doctors do not always hold the answers, that sometimes faith is all we need. God has a plan for each one of us even if we can’t see or believe in it at times of crisis. God has a plan for Milo, for me, and for all the people who have crossed paths with him. Some parts of his plan have already seen and I am certain there is so much more in store for us.

Today as I celebrate my miracle, my son, I can not help but think all the mothers who’s children lost there battles and the mothers who are in the PICU wrestling with similar situations this year. Please pray for these people to receive the guidance and peace they need as well as thank God for the miracles he has preformed.