Going Home

Tomorrow after Joaquin's last antibiotic shot we are going home! We are scheduled for the shot at 3 p.m. at the day hospital, but when we were there today I asked if we could come in a couple hours early so that we could get on the road faster. They were fine with that. It will be another big day for Joaquin, he will have a blood draw in the morning, clinic afterwards, and then his shot, but we will be going home after that.

He's been doing very good and is fully recovered, I would say. He's been tolerating his shots very well although I think sometimes that anticipation of the shot is worse than the actual shot. Today he barely cried. There are dogs that come to the day hospital Monday through Thursday that are really helpful in Joaquin getting past the pain afterward. He likes playing with them and of course the million toys in there too.

Sad news on the camera. It's lost. We lost it in Santa Cruz last Friday and were hoping that our friend who lives there and was out of town until today had it in her back pack. No luck, so no pictures from this whole experience. I'm really bummed. We'll figure out something.

I'll update more later.

Hopeful

Tomorrow my parents are driving down here and Chris is leaving to go back to work. They will be bringing the equipment along so that I can upload photos to the blog. I really like having the pictures accompanying the entry, but oh well.

We were discharged from the hospital on Wednesday night. We pretty much knew Tuesday night that Thursday would be the day, but our experience from previous hospitalizations let us know that it wouldn't probably happen until later in the day since everything moves slow as molasses around there. So we physically left the hospital at around 6 p.m. Joaquin was very excited about leaving, he had been asking about going home for a while but we had told him that we weren't going home and that we were going to the Ronald McDonald House. There's lots of fun stuff to do around here so he's not to upset about not being at home.

We decided to do the shots, versus the PICC line. The shots, while not pleasant, are do-able and much less invasive then the whole PICC line experience. When Chris took him to the day hospital, the nurses were asking why we didn't do the PICC line. We just can't believe how basic and simple they make it sound. Sure, lets put him under and surgically place a PICC line! Easy! No big deal! I digress.

On Thursday before we left, Dr. Weintraub came in and talked with us for over and hour. I was so appreciative of that. We got to sit and pick her brain and ask her questions and just talk in general about kidney transplant. It's what we sorely needed. Both the doctors and we feel like communication lines were in desperate need of attention and mending. There were many assumptions made about Joaquin's care on both ends. We've finally cleared most of them up and I'll discuss in another thread exactly hat I mean and what happened. I think we may have had a very scary, dismal outlook on what transplant is but after talking with her, I feel much more hopeful about Joaquin's kidney's future.

We now understand that we can expect his kidney to (hopefully, if all continues to go well) last for 20+ years. She was saying that he's in this era of transplant where in a sense kidney transplant is pretty common, whereas the previous generations were steroid based and before that a very radical, extreme measure. Basically a last ditch effort at saving someone's life and that in the 1960's and 1970's people's whole immune systems were irradiated and that once their immune systems recovered they had a 50% chance of losing the kidney. She was saying that by the time that Joaquin's kidney's life expectancy is up, they might be able to take a little of his blood and grow him a new kidney where he wouldn't have to take anti-rejection medicines and we wouldn't have to be fearful of losing his kidney to rejection.

The fact that Joaquin had a transplant so young is actually an advantage to him. They statistically see that children under 5 have very low chances of kidney rejection. They aren't quite sure, but feel that somehow and young child's immune system hasn't, in a sense, fully realized what belongs to their body and what doesn't. Whereas a person who is 50 and their body has fully realized what belongs in the body and what doesn't. He's also got the advantage of receiving not only a living kidney, but a relative and his mother's kidney.

We are always so scared of him losing his kidney. When I go to the emergency room after Chris had taken him in, I had brought along his transplant manual that we are supposed to bring everywhere. I rushed in and started talking about his kidney and the doctor stopped me and basically said that while they were aware of the fact that he had a kidney transplant, it was secondary if not tertiary to the fact that he was having seizures. He had to actually explain this to me a few times before I understood that we were not dealing with just his kidney and that his kidney was not the cause of this nor would it necessarily be affected by this. I understood this finally and said to the doctor that I was sorry, but that our whole world was his kidney. He understood me. I calmed down.

So yesterday we went to Santa Cruz and visited the ocean for the first time since June when Joaquin and I made the trip out there with our cousins Brenda and Gina. It's always such a healing experience. It was Sage's first trip to the ocean.

Tomorrow we look forward to going to the farmer's markets around town and they are having "Art from the Heart" here at the Ronald McDonald House, which I am really looking forward to. We will be painting.

So with the next post and update, expect pictures! Thank you for reading and listening and for all your love and support.

Closer to Home

No picture to accompany this blog today, sorry. I have been taking lots of them but don't have the means to upload photos, didn't think we'd be here for this long. But I promise lots of cute ones when I got home or if my parents bring them down here for me.

Joaquin continues to improve, in fact, I would say that he's 98% better. The only reason that we are here in the hospital still is because he needs to have his antibiotics and they need to be given one of three ways: 1) through the IV, 2) through a PICC line or 3) by a shot. Right now they are giving him them through an IV. We've already had to replace the IV one time since we've been here but the nurses and doctors are all well aware that he is a hard stick so they call in the big guns to place the IVs. And Joaquin is very cooperative through them.

They wanted to keep him in the hospital until they finished weaning him off of the anti-seizure medicines, which they did yesterday. Now, it's a matter of figuring out how we want to administer the antibiotics. They really want us to have a PICC placed, but we are not comfortable with putting him under anesthesia to do so. The other option beside staying in the hospital so they can be given through an IV is to give him two shots once a day. Apparently the only reason that the doctors are not so keen on giving the shots are because the nurses consider them to be, for lack of a better word the doctors says, inhumane. Or cruel. Now, I can see how a person would see this but I guess I would say that I view putting my child under anesthesia, for which he has proven that he does not tolerate well, cruel.

I remember vividly the last time we put him under, the nurse was joking with me about how he was feeling good since he had this far off, dazed, glazed over look in his eyes just before he passed out. Yeah, that's really funny. It actually broke my heart.

So today we will figure out what exactly we want to do as far as administering the drugs. We will have to stay down here for the duration of the antibiotic treatment, but we will stay at the Ronald McDonald House, our home away from home. When packing to come down here I really didn't figure that we'd be here for so long. It'll be two weeks by the time we come home.

On the upside of things, the doctors are very pleased with Joaquin. He's weighing in at a little over 28 pounds and he's 33 inches tall. The last time that anyone here saw him was in February and he's really made the leap from being a baby to a little boy. He's eating well, drinking well.

He hasn't had his ng tube in since last Wednesday. They took it out in the ER at St. Mary's in Reno and haven't put it back yet. They've decided that instead of giving him 2 liters of fluid, they will only be giving him 1.3 liters. They figure that he will have the ng out in about 6 months! He's been drinking around 6oo mL every day, which is about half of what he now needs. So what we'll be doing is not giving him anything by ng during the day now and give him what ever he didn't drink during the day over night. While in the hospital, they have been giving him the rest of the liquids he needs by IV, so it's been nice. This is the first time he hasn't worn an ng for his whole life. Sad, but exciting! They figure that a reason why he had the seizures was because he was getting too much water and one of the doctors was saying that after the first year of having a kidney so hydrated that the chances of the kidney doing good, research shows, is very good. Joaquin's so used to having the ng in that he doesn't' really mind it anymore. We've been talking to him about how he needs to drink more water or liquids so that he can have it out, but he doesn't really grasp that yet. I think he will very soon though.

So that's a little bit of an update. The doctors think he should be discharged by tomorrow. Thank you for all the prayers and good vibes and love. Thank you.

Trouble

On Wednesday night Joaquin we took Joaquin to the emergency room. He was having seizures and he had a very high temperature. They found that his seizures were caused by a high temp and/or low sodium. He also had strep pneumonia and an ear infection and possibly a blood infection.

On Thursday night Joaquin and Chris flew down to Lucile Packard Children's Hospital so the doctors could keep a close eye on him and protect his kidney (which is just fine). He is being treated with antiobiotics and is feeling very well right now.

It was scary and rocky for a while there but he pulled through. He's a tough cookie.

If you haven't already heard about it, now you know. I will try and update and explain things more in detail once I get a better opportunity.

For those of you who sent and are sending your love and prayers, THANK YOU! They are once again one of the major healing elements working on him right now. Thank you, from the bottom of our hearts.