Yesterday...Aside from the Appointment

So yesterday was bad...we are all agreed on that.

But the weird thing about us....we actually had two very important visit to make in Houston before we left. We know two kiddos in the hospital there, one 3 year old boy Samuel, and one year-old baby girl Gaby. So we decided to still make both visits, and I am so glad we did.

I found this quote years ago, and I know am mutilating it, but here goes: "experiencing suffering is like learning a foreign language...it allows you the opportunity to talk to people you otherwise would have no access to, and to discuss your lives in a common language."

So that is what yesterday afternoon did for me, and my mom, too....as for Chris...well he was in his own world, poor Daddy, but Tucker sure did enjoy lots of hugs from him.

Samuel was born at 33 weeks gestation (I think I'm right about that) and has had many medical problems since then. He was diagnosed with mito in January 2009 while he was literally fighting for his life on ECMO-they gave him a 10% survival rate at that point. I knew his mom through the March of Dimes; although obviously Samuel's medical issues were not all related to prematurity, at that time that is all I thought I shared in common with her.

Tucker and Samuel's mito affects them in completely different ways, which shows how very hard it is to compare any two mito kids.

But still, Missy has been an absolute lifesaver to me over the past few months.

Some direct quotes from her last night:

"All forms of mitochondrial disease are a 'death sentence'. Some forms outlive others, but there is no hard and fast rule. Some kids with a mito complex disease will live to be 40 and others won't turn 1. Even in the same family, there are no clear cut paths. It depends on what 'systems' are affected. So, yes, it may end his life earlier than we would like, BUT, it may not be until he is 75 years old with grandkids. Plus, they are coming up with treatments right now and in 10 years, depletion (what Tucker has) may have a cure. That's why mito sucks, you get to live life without a percentage to hope to beat and always waiting for the other shoe to drop that delivers devastating news."

"But with time, you will see that you are all still living and Tucker has a life to live and a story to tell. The grief cycle never ends though....you keep spinning circles. You think you have a handle on things only to fall apart again. You have to remind yourself that you have one of the best doctors in the world fighting for him and he 'fits' somewhere. For me, that restores some of the hope that is lost in my kids diagnosis."

So wow, you can see why seeing her and talking to her really helped me!!

We went up to Samuel's hospital room, and Tucker immediately freaked out:( He refused to go in, even though we told him we were only visiting, not going to put him in the bed!! Chris stood in the hall with him until he was ready to come in with us. Samuel was still asleep from anesthesia (he had a procedure yesterday), but when Tucker started screaming he woke up! Finally we coaxed him inside with the promise that he could play with any of Samuel's toys:) He was much more interested in all of Samuel's medical paraphenalia, though, in true Tucker style.

Once he got really comfortable, he went and closed the door to the room....which is Tucker's way of saying "okay, I like this, let's stay awhile." So we were trapped, haha! He climbed up on the bed next to Samuel, and patted his head, and said "night night baby." I told him that Samuel wanted to wake up, and that Samuel is NOT a baby, haha, he is probably bigger than Tucker! So then Tucker climbed down and inspected the toys. He chose a Buzz Lightyear notebook, he is really into notebooks and paper lately.

After our visit Missy directed us down the road to the other children's hospital to visit Gaby. We rode the metro train to get there, which of course Tucker loved! It was a super short trip, though, because it was only one stop away.

We got out at that stop and Mom and I went into visit Gaby. Tucker was too young to visit her, so Chris took him for a walk for about 20 minutes. We were all exhausted so we agreed to keep the visit short. We met Gaby and her parents last fall. Gaby was born in June 2009 at 24 weeks gestation, and she was at Woman's Hospital, the same NICU as Tucker. We met her parents to discuss Gaby's getting a trach. Her parents wanted to see an actual trach, and see all that came with it, so of course we obliged. We would have loved to have this opportunity ourselves 4 years ago....there were several moms that I talked to lots over the internet, but seeing a trach kiddo in person would have been great. So anyways, we talked to them for a long time last fall, and about a month later Gaby got her trach. Her mom became a trach pro very quickly, and got used to everything as well as she could. But in April 2010, Gaby got transferred to Houston because her lungs were so bad that they said she needed a transplant. She was way too small for that, though, so they waited for months. By the time she was big enough, her lungs had gotten strong enough to not need the transplant.

So I hadn't seen this mom since last fall, and I knew she had been in Houston for months with no one to help her (her husband went there every weekend, but of course he has to work during the week). It was their last day in Houston, because today they got an air flight back to Baton Rouge, they will be at Our Lady of the Lake for a few days or weeks, then Gaby will finally get to go home!! :):) So it was so nice to get to see Gaby, complete with trach and vent, and of course it was nice for Jasmine (her mom) to see Tucker jabbering away and running around! Jasmine even had a bunch of lunch coupons, so she treated us to a cafeteria lunch:) She said she rarely leaves her daughter's side, so it was nice for her to get "away" for a while.

This family has quite a story....I hope she starts a blog if she hasn't yet....there was actually a point where they unhooked Gaby and told her parents to say their good byes....only to have her fight to wake back up after much time had passed....and her mom said "once she died and came back, she was a totally different baby...much happier and more of a fighter." I tell you, no matter how many of these stories I hear, they always amaze me.

Talking to Jasmine also was like a wake-up call of how lucky we are. We really did have some of the best trach care available, I think. Both Woman's Hospital and OLOL treated us so well and took our every concern very seriously...Tucker never had an infection in either of these places, which is pretty much unheard of for a trach kiddo.

So we finally had to say goodbye to Jasmine, after making her promise to call me with any questions about OLOL, (my cousin is the charge nurse in the PICU there, I told her to let them all know that!! haha) home nursing, or anything else. We hopped back on the train for a too short ride, then headed home in the storming rain.....allowing yesterday's news to sink in.

I will very likely update tonight with the medical explanation of Tucker's mitochondrial disorder....just so everyone can print it out as a reference, myself included. I will also touch on the silver linings I found yesterday, which actually are many.

This morning I got a call from the RN at Dr K's clinic. She told me they didn't get enough bloodwork from Tucker yesterday. They only took 5 vials, but they forgot 5 more, along with the orders!!! So we have to go back ASAP, which will likely be Friday with Mrs. Mia and Mr. Ricky.

The "funny" thing...yesterday my mom and Missy sat outside and waited while we got Tucker's blood drawn....Mom remarked that it was way too quick, did they make a mistake?? I said "no, the blood draw lady was just very good."

Ugh......when Mom says things like that, she is ALMOST ALWAYS right!! Why did that remark not click in my head??? So we have to go back.....no ifs, ands, or buts....because the 5 things they did not test for are of course the most important tests that cannot be put off.

So, hey, at least I will see Missy and Samuel again, (and maybe even her husband Ben and daughter Lauren) and maybe it won't be storming and Tucker will be able to play in the huge Hermann Park and ride the little train again:)