Home...again

Well we are home from the hospital...take two!!! Hopefully it's for good this time. Elijah fortunately did not have any infections. He got some sort of bug, and together with his vaccinations caused him to get a high fever and dehydrated. He is doing well at the moment, and hopefully will continue that way. We are still having issues with his eating, but that's it for now. Here are a few pictures of Elijah I took today. I love how in the course of ten seconds.. he has so many different facial expressions :)

Back in Hospital :(

Elijah had to be admitted into the hospital yesterday because he had a high fever and had signs of dehydration. He also was having high blood sugars. He is on IV fluids and had blood drawn to see if he still has any infections. It takes 24-48 hours to get the lab results back so we will be there at least through tomorrow, as long as it comes back negative. He had his 6 month vaccinations on Monday, so we are hoping that all of this is just a reaction to those, and not an infection. I'll keep you posted :)

WE'RE HOME!!!!!

We are finally home!!! We had a long day yesterday, but we made it to Reno and couldn't be happier. Elijah is doing great and seems to really enjoy being home. These are just a few pictures from the last couple of days. I probably won't post as often as I have been, as there is not enough time in a day. I will try at least once a week to post pictures and updates on Elijah. Thanks for checking in!!!! -The Thomes

It's late. We're tired. We leave the hospital at 5:15 am to head to the airport. We can't wait to be home!!! We'll see some of you soon.

This is a video of Elijah squealing in happiness at the news that we are coming home Wednesday!!! Actually I think he is quite delerious in this clip, as he hadn't eaten in 14 hours! He passed his fasting test with flying colors; his blood sugar never dropped to a dangerous level and he made it the entire 18 hours. He is still having some eating issues, but the doctors hope that once he is back in his normal environment, that things will change. We will have our fair share of doctors appointments in upcoming months to follow his blood clot, and to monitor his weight gain. Also we will be following up with the Pediatric Endocrinologist in Reno quite often to make sure he is on the right dose of the medications. We just booked our flight, and will be in Reno by Wednesday afternoon. It still doesn't seem real. We look forward to seeing everybody soon!!!
Love,
Joel, Eden and Elijah

No new news today...Elijah still has hives from an alergic reaction. He is still not eating too much, which is a concern to us. He is happy as can be, however. Tonight is the beginning of his 18 hour fast, so I know tonight and tomorrow are going to be difficult. That's all for now... hopefully tomorrow we will know more about when we will be coming home. Thanks for checking in :)

Pretty much one of the funniest pictures taken of Elijah so far!

So it's Saturday night and today didn't go quite as smooth as previous days. Elijah is still doing better, but is throwing up more than usual. We can't quite figure out what is causing it. He also had an alergic reaction to an antibiotic this evening, and broke out in hives. This poor little guy just can't catch a break! On the other hand, his blood count is doing great, and so far no more signs of infection. He will continue to receive antibiotics for seven more days, just to make sure they are gone! So hopefully our plans to come home this next week will stay the same, although we want to make sure there are not underlying problems with his stomach that will take us back to the hospital in Reno. When we leave here, we want to be home for good. And when I say home... I mean our own home, our own bed, our own life!!! No more hospitals for us.

So today is the first time that we have heard the doctors mention a day that we MAY be coming home. They said that if all goes well, Elijah will be discharged on Wednesday. I gave him both shots today, and I don't know how we are going to give it to him twice a day... he is strong! He cries, but is over it pretty fast. He is having some trouble keeping food down again, but we think it is most likely due to the antibiotics that he is on. He will get them via IV through tomorrow, and then seven days by mouth. Hopefully after that, his tummy won't be so upset. He has lost a little weight, although you would never know it looking at him :) Joel and I notice though. Thanks for checking in. -The Thomes

Hello Everybody. Elijah had yet another good day today....it is so nice to have our smiling baby boy again!! His blood count is up to normal now. His hemoglobin is at 9.4 (was 7) and his platelets are at 276 (was 35). It is amazing how resilient his little body has been. Each day the doctors come in they have big smiles on their faces and tell us how astonished they are as to how quickly he has recovered on his own. He has to do a fasting test on Sunday night, into Monday for 18 hours. This is to make sure that if at some point he were to get sick and not eat for a period of time, the diazoxide (medication for his hyperinsulinism) will still be effective and keep his blood sugars at a stable level. If he passes this test, we could be coming home sometime next week! Joel and I were shown today how to give Elijah his shot of Lovenox, since we will be giving it to him twice a day once we are home. I practiced on a little block of rubber, and am scared out of my mind to give it to him for the first time. I chickened out this evening and had the nurse do it, but will do it in the morning. Overall, things are looking up, and there is a light at the end of the tunnel...finally!!

Elijah had a wonderful day today! He seems to be feeling sooooo much better. No other news , other than he continues to head in the right direction. Hopefully we will be home soon....we are ready!

Yummy Cookie!!


Wiped out after a long hard day in the life of Elijah :)

Hello Everyone,
Good news to report!!! First of which is that his platelet count continues to rise, as does his hemoglobin count. Today is day three of his infections coming back negative, and his blood sugars continue to remain stable with the medication he is on. He has to finish his course of antibiotics which has 11 more days. So...what this means is that IF, and I use that word cautiously :), he continues on this path that he is on, we could be coming home in about two weeks!!!!!!

This picture cracks me up. He's always had a little spot on the back of his head that we called his "bald spot," but this makes it official. He's been in the hospital too long!!!

Elijah is continuing to do a little better today. He was awake alot more and happy for the most part. His platelet count has crept up a little on its own and the antibiotics are starting to kick in and fight the infections. He is still eating well and they cancelled the tube placement for today...yay!

As you can see, Elijah is feeling a little better today. He has once again, started eating and keeping it down. It seems as though he knows whenever he is scheduled to get a feeding tube placed, and decides to eat !! They will be replacing the PICC line tomorrow, which will hopefully help him to fight the infection.

Hello everyone.
I'm sorry we didn't post yesterday..It was a very eventful and trying day to say the least. As I'm sure most of you know, we are Jehovah's Witnesses and do not accept blood transfusions. For those of you who may not know, or understand our views regarding the matter, I will try to explain a little of what the Bible says, and why we feel the way we do.

There are some things that are common today that we, as Jehovah's Witnesses, do not take part in, one of which is the use of blood. We do so because we govern our lives by God's Word, and these things prove to be a safeguard for us. Acts 15: 28,29 says, "For the holy spirit and we ourselves have favored adding no further burden to you, except these necessary things, to keep abstaining from things sacrificed to idols and from blood ... If you carefully keep yourselves from these things, you will prosper. Good health to you!"

This brings me to yesterday. I said in my previous post that Elijah has a blood clot in his leg. He has not been his normal happy self, and wants to be held all the time. I think he has figured out that when he is in our arms, it us usually the only time he is not being messed with. He was getting a shot every 12 hours of a medication called Lovenox, which is a blood thinning medication. He had blood drawn and when the labs came back, they showed that his blood count is very low. His platelets, in particular, are much lower than they should be. This is directly due to his blood clot, as well as the fact that he has three separate infections growing in his blood stream. In most situations, this is the point where the doctors would perform a platelet transfusion. We, as Elijah's parents, had to speak up and let them know that we would not consent to that being performed. This, of course, was not a decision that we took lightly. The doctors here at CHOP have been extremely understanding and cooperative in regards to our beliefs about blood transfusions and said that they would wait until the next day when the attending doctor was here and we could discuss it then. We called Brother Webster (who's on the Liaison Committee here in Philadelphia) and we were able to set up a meeting with all of the doctors who are involved in Elijah's care. Among them were the Hematology doctors, as well as the Endocrinologists. In short, they said they would give him about two more days to see if his body would, with the help of antibiotics, start to turn around and build up his platelet count on it's own. Unfortunately they have been put in a position where they must act from a legal standpoint with regards to giving Elijah a blood transfusion if it becomes an emergency. Later that day we were involved in a teleconference with a Judge, and both sides gave our opinions as to whether or not Elijah should get a blood transfusion, if the need arises. Joel and I did our best to express our views, and Brother Webster was there with us to help us along the way. He proved to be a big emotional support for us. Needless to say, it is one of those moments that I think we all hope and pray we will never encounter in this lifetime. The Judge, in the end, issued a court order to the hospital that hopefully at this point in time, will never have to be used.

So that is where we are now, and I'm so sorry this post is so long. I feel like I am still leaving things out. No words can express how much we appreciate EVERYONE who is praying for us, and keeping track of our journey. I know that we will come out on the other side...I just hope it is sooner rather than later. Elijah is a strong little man and I know that if any baby can endure what's he's been through, I can only imagine how strong he will be once he starts to feel better.

Love Always,
Joel, Eden and Elijah Thome

I knew when I wrote the last post about Elijah having two good days in a row that it was too good to be true. He spiked another fever yesterday of 102 and hasn't eaten too much since then. On top of that, his left leg has been bigger than the other leg for about a week and a half now, from where the line(IV) was in his thigh. They did an x-ray and an ultrasound on it yesterday to see what was going on, because the swelling hasn't gone down at all. The ultrasound showed that he has a blood clot in his leg. The good thing, is that the clot is probably the cause of the infections and fevers (at least now we know). The bad thing is that not only is it dangerous, but in order to treat it, we will need to give him two shots a day of a blood thinning medication for at least the next six months. Unfortunately, his Hyperinsulinism is the least of our worries at the moment. Our goal now is to treat these other issues that have presented themselves. I've learned that this has been, and will continue to be a journey of ups and downs. Hopefully I will have more ups to report in the near future:)

We get to wake up to this every morning :)

Hello Everybody.
It is Tuesday evening and today was another overall good day. Elijah is still eating a little better and keeping most of it down. He is still feverish from the infection, but hopefully that is very temporary. My Mom flew in today...what a savior she is already!!! Joel and I got to get away, and ate dinner at a neat resturaunt downtown. It is so nice to have a piece of home here in Philadelphia. Well it's been two days in a row that Elijah seems to be heading in the right direction; finally seems to be turning a corner. Thanks for caring enough to check the page... I hope it is helpful.
Love, The Thome Fam

Yay! My Mom is here! She wasn't even here ten minutes and Joel and I were off to dinner :)

Joel and Elijah talking to Grandma Pixie and Auntie Olivia on the computer.

We went for a walk...OUTSIDE.. no IVs at the moment.

Some Pictures from the Hospital in Reno

Elijah has been eating better today, so the doctors decided to give him a day or two to keep going on his own. This is a big deal to us, that he is eating better, because it has been over three weeks that he hasn't done so on his own. If he keeps going like this, and the medication continues to do its job...hopefuly we won't be here too much longer! We try not to get our hopes up because it can change so quickly, but let's hope.

Good morning!

Elijah woke up this morning feeling a little better. He does have an infection, and they will be starting him on antibiotics today. He finally started eating last night (still not as much as he should be), and keeping it down so far. Unfortunately, they are still going to put the feeding tube in this afternoon to ensure he is getting enough nutrition. We only hope that it won't reverse the progress we've made.

Elijah is still not eating and earlier today, had a temp of 1o3. He might have another infection in his PICC line in his arm. He got some baby tylenol so is sleeping at the moment. We will wait to get the results back and he will probably have to be on more antibiotics to get rid of it. We'll keep you posted.

A few pictures from the last week.

Elijah @ 2 a.m. the first night here..not quite used to the time change!

UPDATE ON ELIJAH

Today is day 11 here in Philadelphia and day 26 of our life since Elijah's being hospitalized. He will be 6 months old on Tuesday (crazy!!!) and despite all he's been through the last month, still has smiles to give all of the doctors/nurses that are helping to take care of him. Needless to say, this has been a very hard and trying time in our lives, and we have yet to make it to the other side. No words can express how much we appreciate everybody that has been there along the way of this journey thus far. We love you so much and can't wait to be home!!

Elijah has what is known as Hyperinsulinism. If you would like to know more about it, visit http://www.chop.edu/consumer/jsp/division/service.jsp?id=47690

He is currently being treated with medication, and it is working well at keeping his blood sugars stable without having to be on an IV. Our obstacle at the moment is that he doesn't have much of an appetite, and can't keep down the little that he does manage to eat. If he doesn't start to eat better in the next day or so, they will replace the feeding tube they took out on Thursday (we wanted to let him give it a go on his own.) We won't get a true reading on how the medication will work in the long run, until he starts eating as if we were at home.

That's about all for now, and I will hopefully be able to post more current pictures in a couple of days.

Love,

Joel, Eden & Elijah

Elijah getting ready for the plane ride to the Children's hospital of Philadelphia. (Last Wednesday- May 23, 2007)

His first (and hopefully last!!!) ride on an ambulance.

We had our own private jet !! (that wasn't even tall enough to stand up in)

Elijah and his Papa at the Renown PICU in Reno