Unexpected Good News

Eli got released from the hospital this morning. Since we have oxygen and the monitor at home they felt we would be okay to go home. They diagnosed him with pneumonia and prescribed him an antibiotic.

On the drive home I got a call from his Oncologist. He called to tell me that he found a medical trial that he could join. The medication is called Gleevec and we will have to travel to Indiana for our initial visit and treatment, then the rest of the treatments can be done in Texas. The amazing part is that I have family in Indiana so staying there for a week or even several weeks won't be an issue. Out of all the states to find a trial to put him in Indiana is perfect! We still have to be officially accepted though. His doctor is going to send them Eli's medical records and MRI's so that they can take his case before their board to make the decision on if he can be in the trial for this medication. I am over the moon excited and hopeful that they will say yes.

Admitted to the hospital

Eli threw up today and aspirated a whole bunch of it. His oxygen stats where in the 80's. I called his doctor and she told me to bring him to the ER. I had to wait about 2 hours for my husband to get home from work. It totally makes me realize that we need a second car. It's a good thing we have oxygen and the oxygen meter at the house. It didn't take the ER long to get us in a room. In fact some people were mad because he went before them. They did an x ray, suctioned him and gave him a breathing treatment. The x ray showed a few places that looked like fluid and his stats where still low 90's after being suctioned and a breathing treatment, so I'm guessing that's why we got admitted. We will get to see the doctor in the morning so I'll know more then.

This happening was only a matter of time with as much as he aspirates. I'm shocked this is the first time. It really makes me think that the trach might be the best thing for him.

Leg Braces

Today Eli got measured for leg braces or AFO's. His therapist's and doctor both think he needs them for weak ankles, probably caused from the OI. I'm actually really excited for him to get them. Other people have kinda been sad about it and have said things like what else will he have to have and poor guy. I think its great because it will hopefully help him walk. He is 19 months old and still is not walking on his own. He has been cruising the furniture since about 13 months and he took a few independent steps at the end of January, but I guess he tweaked an ankle because he stopped taking steps and even stopped wanting to hold our hand to walk about the beginning of March. My hopes are that with the leg braces and physical therapy he will be walking independently by his 2nd birthday. He is already so close, I think these braces will just push him over the hump and he will be chasing his brother around in no time. Those are just my hopes though. I am also fully prepared mentally if it takes him another 6 months or more to become an independent walker, just don't tell my aching lower back.

On a side note his braces will be super cool looking. We got to pick the design today as well. I was hoping for something like flames, but it was either butterflies or something they called the tornado. It is a swirl of the colors green, red and yellow. We picked the tornado with a bright green strap. We go back in two weeks to try them on. Once we get them I will be sure to post some pictures of Eli rockin his cool braces.

Trach Update

I called Eli's ENT doctor in Houston and talked to him about the trach that the sleep medicine doctor wants put in. He is going to talk to the rest of Eli's medical team and see what their thoughts are on it. He thinks there might be something else we can do before we go to a trach. I really hope there is something else that will help. A trach just seems so drastic at this point. I have had a chance to research and talk to other parents and I'm not as freaked out about it as I was. In fact I told his ENT that if this is what is needed I would rather him do it now when he is already going to be having surgery then wait and have to schedule another surgery in a few months. His ENT agreed and went over what would happen if he put the trach in. He said he would have Eli in the ICU after surgery for a week and then I would have to go through training which typically takes 2 weeks. He said he would call me back next week with the final answer on if he will be getting the trach or not. I just want what is best for Eli and even though it scares the hell out of me a trach may just be it.

A Tracheostomy, REALLY!

So this morning Eli had an appointment at the sleep clinic. The doctor put him on a cannula with pressurized air to keep his airway open at night. Eli hates this thing and has learned to manipulate it over his nose so he doesn't have to be on it. We have tried all of their suggestions to keep him from doing it and he just won't wear the stupid thing. I told the doctor that Houston scheduled surgery and he said he wants them to put a trach in while he is under. He says that it will help him with his sleep apnea, but also help him after surgery because after intubation his airway may swell and cause the apnea to worsen.

I don't know why a trach upsets me out of all the things we deal with. It just sucks that we have to add one more thing to the list. I cried all morning and I don't even know why. Its just a trach, but it means more medical supplies and machines that he has to be hooked up to. I don't know why I'm so upset about it. It seems so stupid to me, but I just can't stop myself from being upset. I don't even want to tell our family yet. At least I have a month to come to terms with it and do some research. I need to just buck up and be strong. Sometimes being strong just really sucks!

MRI and surgery scheduled

I woke up this morning to an email saying they scheduled Eli's MRI for April 2nd and his surgery for April 18th. I'm really looking forward to seeing new images of the tumors. I'm also looking forward to him having a g tube instead of the ng tube. Everyone has told me they are so much better for him and me. I'm just glad that people won't stare at him and ask questions when we are out. I hate hearing "look at that baby". Its like really, you've never seen a kid with a feeding tube and if you haven't don't you know that's rude. Anyway we are happy to be taking the next step.

Waiting game

Welcome to the waiting game. It seems like that's all we have done since finding out about Eli's nf. We switched his nf care to Houston and we are much happier there. We have seen so many specialist since switching. Its been a hassle and hectic but its all worth it to make sure he is OK.

Nf clinic- we met with them at the beginning of February. We just went over all the nf stuff and had some blood work done to make sure he didn't have any other undiagnosed genetic disorders. Thankfully the test came back negative. My husband was also tested to make sure he doesn't have nf, but we haven't gotten the results back from that yet.

Oncology- we've met with the oncology Dr twice now. We learned that his tumor is actually 2 tumors. One starts around the stomach and the other is in the chest and neck. He wants to try and find a clinical trial to shrink the tumor before trying to remove it. Because of his age I don't think he is going to qualify for any and neither does the nf clinic.

Pulmonary- they said he heart and lungs look fine. They are more worried about his air way and his sleep apnea than anything else.

ENT- they said he needs ear tubes for his chronic ear infections and fluid. They put a scope down his nose and looked at his vocal cords and found his left vocal cord is paralyzed. They said this is why he aspirates his food and said he cannot have any food by mouth until after surgery so his lungs are as healthy as possible. They said most likely the tumor is pressing on it or its where the tumor started and has damaged the nerves. They're not sure if it will ever work right again. They will know more after a new mri. They want to do a full scope of his airway and lungs when they do surgery.

GI- they need to put in a g tube to not only make it easier on him and me but now more than ever to help his air way.

I was told that they are going to have a tumor meeting with all the specialists and they should be able to schedule the mri and surgery to do the ear tubes, scope and g tube all at the same time so they only have to sedate him one time. So now we wait and pray it doesn't take more than two weeks to get a call from them.