Surgery Date

Surgery is scheduled for May 22. I am so nervous today, have to do something to release this energy. So am getting a pedicure. But glad it is sooner rather than later.

We are easily settled in to being home again. Avery is the same, still quite junky but manageable. He requires alot of chest pt, suctioning and other interventions. I suppose the high pollen count is making things worse. I called the surgeon's office to set up a date and waiting to hear back. They have to coordinate an ICU bed and 2 surgeon's schedules. I am hoping it will be in the first week in June, just after Isaiah's birthday. We really want this done and over with so we can enjoy our summer, hopefully.

Today I bought a metal utility cart. Crazy thing is that we needed it to make our home "crash cart". It has all of the necessary supplies for emergencies on wheels. My house is 2 steps from a hospital ward. Really sad.

The boys double stroller came in, it is nice but Isaiah won't last too long in it. Problem is the thing does not break down so we cannot even get it downstairs. LOL. Kinda defeats the purpose. Nothing is ever easy.

Forgot to mention the Make a Wish has been calling for Isaiah and they are coming to the house next Sat and we have to have his wish narrowed down. We decided to get him a gazebo type of playhouse near the pool. He really does not like the heat and it will have fans, tv and carpeting and fun toys so he can roll around. I think he will love it.

I did want to let you blog readers know that the birthday pictures I posted of Avery were last yrs. pictures. Remember, we not able to celebrate his birthday b/c we went to the hospital. He used to be able to put his hands to his mouth and eat and all that. He is now not able to do any of these things. Sad face. Totally different kids from last yr. We are thinking of having a pool/cookout party for the boys soon as Isaiah's birthday is June 5th. I will post this yrs. birthday pictures of the boys.

All and all we are enjoying our time home until the surgery and hoping he does not get hospitalized before then b/c it will be cancelled I am sure. So please pray that we are able to keep little man healthy until then.

We are home. We actually had a team meeting before leaving. These are typically productive b/c you get all the drs. involved in Avery's care and us and basically hash things out. So we hashed out a few things.

1. To do the T&A or not. Well, I thought this was the most cut and dry and it turns out is was the least. The team just did not seem to thing he would get a great amount of benefit out of this. The way I see it is a little benefit for quality of life even if that is only for a yr. or 2 is huge for him. My mommy instinct is telling me to do it, so I am going with it. Afterall, they don't really know Avery like we do and are only going on their medical opinions. I personally think mommy instincts are much stronger.

2. We put on the table to have Avery directly admitted to the ICP and once he is stable that he will go home instead of the regular floor. What they do on the regular floor we can certainly do at home. They were in agreement. I made sure to mentions several times in a few different ways about the whole fiasco on Sunday and how that did not need to happen at all. Not many responses there.

3. Another port. Man did I hem and haw over this based on our previous experience. However a few good things came out of it. They did another ultrasound on his old clot and is was markedly improved. The ICU dr. also spoke with the surgeon who placed his first port and he said what great difficulty he had placing it and believes he got the clot from all the trauma placing it. He was basically going into it blindly. He would like to retry with ultrasound guiding him and feels pretty confident. Hematology was also present and felt he was okay to have another line. If the line worked, it would make things alot easier for Avery. He would avoid all those horrible pokes, get quick fluids when needed, get blood without pokes. We could also manage more of his care at home. So we are going for it. This was really tough. But we have to go with our instincts and with this one the new information that was presented.

These are all very tough decisions with no right or wrong answers. As a parent it is so difficult b/c you don't know if the one you make could ultimately hurt your child but in the end, We are doing the best we can for him. They did bring on a trach for him and this is something Rick and I are NOT willing to do. We just feel that there is no quality of life for him with this. They certainly brought this up in the meeting and we made sure to let them know our opinions. So we will be scheduling surgery for both procedures in a few weeks. It will be a very tough recovery but Avery is certainly a fighter and have no doubts he won't pull through it fine. Hopefully all is quiet until surgery time.

Update

I am totally exhausted since Friday. It is always an adventure in the first 3 days of our hospital stays. He was suffering from alot of upper airway issues b/c he is just too weak overall to handle his own secretions. This is where the removal of his tonsils and adenoids may be helpful, allowing him some more breathing room (literally). On Sunday morning he was doing really well and we were thinking about being released. NOT. Mainly b/c of our idiot nurse. Man, what a ding dong. Avery started with quite alot of diarrhea which for him having major metabolic issues is a huge risk factor. So as a nurse measuring his inputs/outputs is pretty important. Well, seems she dropped the ball on that one. As the day went on he became more and more distressed respiratory wise b/c when you are dehydrated your secretions dry up and get thick. This becomes really difficult for him to handle b/c he cannot cough it up. So a probable solution to this is IV fluids. Well, the ding dong never checked the IV throughout the am to see if it was working. When we needed it, it was blown and we desperately needed a new one. Problem is when you are dehyrated it gets very difficult to get an IV in. SEVEN hrs later and tons of nurses and at least 12 pokes later they finally got it. He was in total distress at that point and was having some seizures to which he has not had. UGH, UGH. GRRRRRRRRRR

My poor mother, grandmother and uncle all came up to visit him through all of this. Poor things were totally mortified as I was. He was finally transferred to the ICP (step down ICU) and they had to fix all the problems from yesterday. So today we are left with a few decision. The ICP dr. who had previously had many difficulties getting lines in Avery and knows his history is pushing for another Central line. Well if you have all been following his history, that did not go well with all the blood clots. He wants to try another type. I am so on the fence with this and very nervous about it as you can imagine. I sure wish I had a crystal ball. Also I am now pushing for his T&A reomoval this week as he is already there and his chronic respiratory problems at home. They are getting the drs. together and I am still up in air and it will ultimately be our decision, just not sure what to do about the central line though.

After 11 long and great weeks, on the night I came home for sleep. Mr. Isaiah started a cycle. I caught it early and gave him valium, really hope that nips it in the bud. He has been so great without a cycle.

Janessa was VERY bummed about Avery going in on his birthday. She just told me "We are not a normal family b/c what family has to have a member go to the hospital on their birthday" What do you say to that???

No birthday celebration afterall

Looks like we are off to the hospital instead. Avery had an ENT visit, he really needs his tonsils and adenoids removed which is pretty major for a kid like him. He has been so very junky today and probably aspirated so we are off to the hospital. I will update when I can. Hey, we made it 4 weeks, best in a long time.

Wishing you a Happy and Healthy Birthday

To my little man on his second birthday. I just cannot believe you are already 2. It is just bitter/sweet. I am sad b/c you are just growing up too quick (our last baby) and happy that you made it through such a tough year. Avery was meant to be on this earth from day one. Many of you may not now this but before Avery was conceived, Rick and I thought long and hard about having a 3rd child. We still get many people asking us "why would you even risk having another sick kid" Definitely not anyone's business but everyone has a right to their own opinions, right. Until you have a "special needs" child you have no idea on what it is like to yearn for another healthy child. Sure, we went to Boston hospital genetics department and looked into all kinds of options to have a healthy child. All they could tell us was "You know better than us" Hmmm, not really an answer. So Rick and I decided to go for it on our own. Well low and behold on the first try Avery was conceived. He actually was conceived on the day of the Hurricane Katrina storm. Hmmmm. Sure there is some meaning behind that one.

Sure I was worried throughout my pregnancy but I just let it go b/c he was moving alot and everything was going great. Got alot of questions from people " do you think this one will be healthy" Geez, wish I knew. Anyway, Avery was born on his scheduled c-section day. Our first sign that something was wrong was his failed hearing test. I knew right then and there that he had the same disease as Isaiah. Then he had this deep sacral dimple and a cyst on his spine, yet more info. pointing to mito. Looking back at it now, he was just as fussy as Isaiah was and slow to gain weight and all of that. But little man was different. He was just the fiestiest little guy going. He was the smallest of my babies (5lbs, 7oz full term) but had so much fight in him from day one. Lord know he needed it for what was to come. He was just not your people person at all. He only liked a few people (his immediate family and Carla his nurse) that was it. His first year was pretty good. He had delays but I seriously thought that he would be sitting up by a yr and doing tons more. Little did I know. He started off so much healthier than Isaiah and his physical abilities were much stronger. Then soon after his first birthday, things really went downhill. Hospitalization after hospitalization and so much trauma for such a little guy. But through all of it, he remained the feistiest guy ever only with 20 teeth in his mouth and his curly cues and longest eyelashes. He is just the cutiest thing ever, I can't even stand it.

A friend of mine wrote an article in the paper about learning to be a mom. So I am stealing a bit from her Hopefully she doesn't mind. But here goes, Janessa taught us all the joys of motherhood, Isaiah taught us to not take things for granted and Avery taught us to fight and be settled with the little things in life. So as I said, my little man was always meant to be here not matter what. I just love him to death and cannot imagine life without him. I love to wake up to the smile of his twenty teeth, button nose, curly cues, and long eyelashes. My wish for him this year is a pain-free yr, happiness, and that fight in him to continue for many yrs to come.

Love you always,
Momma

HAPPY 2ND BIRTHDAY AVERY!!!!!!!!!!!!