Home Again- Home again!

Sorry for the long delay in updating! We have been home now with Eli for almost 12 days!! Woo hoo! And it has been so wonderful!

There still have been frequent visits to Children's hospital, (every 3 days-phew) but his labs are looking really good.

We had a tiny scare on Thursday- the thrombosis (clot) clinic advised us to come in because his tests were elevated and they were afraid he might throw a clot again. So we trudged back in and our little pin cushion braved the needle one more time.

To our relief the labs came back closer to normal! Yeah God! Now we go for labs weekly and soon he will undergo another abdominal ultrasound to check his adrenal glands and renal veins to see how they are functioning. We are praying for miraculous healing of both! :)

Torrey adores her little bro and asks all the time to hold him. She often gets a dreamy look on her face while staring at him- she definitely has the maternal instinct. Ava on the other hand, still sees him as a puppy and asks frequently if she can "pet" him. LOL She is fiercely protective and tells people to wash their hands and be quiet. ha ha

Well thanks again for all the care and food! We are tickled right now, but know there is still quite a journey ahead.

the cooks

Wed Update

Sorry for the lack of posting in the last 3 days. Super busy with work and 3 kids. The good news is we are home!!!!! Ilde had to take Eli down Tuesday to get some blood drawn to check his levels. They came back a tad high but within reason. Ilde went down Wed to meet with his Blood Dr's to get a game plan on the blood clotting situation. They are going to work up some labs in the next few weeks but are not as concerned as the Gland Dr's are. Pretty bad when you have teams of Dr's that are working on multiple things that are wrong with you. We will be going back on Friday to get another blood draw to see how things are cooking. Hopefully we get great results.
Thank you all for your continued prayer and support. Ilde definitely needs prayer and a extra boost of energy. She has been taking the blunt of the late nights since I am back at work. I smell a spa day coming on:)
Stay tuned

Hope to have more pics of Eli NOT from our iPhones in the hospital :)

Sunday Morning

So I had a eventful morning this morning. They NICU is very full and they ran out of sleep rooms so I had to crash in my clothes in a chair next to Eli last night. Not a easy environment with computers constantly beeping/alarms going off and my son crying because it is time to eat. I don't think I am going to swing to much of the sympathy vote from Eli so I won't. I awoke to 4 nurses and 1 Dr in the room around 6:20am trying to get another blood sample from Eli. They had a EKG machine in the room and everyone looked a tad concerned. Not a good thing to wake up to. So my questions started like they do everyday, What is going on? What is his potassium level/salt level? The Dr. let me know that his initial lab work done this morning came back pretty bad and they were concerned that his heart having a side effect. I became very alert by this time. They were re-drawing his blood to get a better sample to see if the results were off from the previous one. So that's where I am at now, blogging in the room next to Eli and waiting the result of his test.
Ilde and I hope and pray that his labs come back normal. Not too many more drugs they can give this little guy. I will let you all know the result as soon as I get it.

jim

Saturday Morning Update

Eli is doing well this morning and his lab work and blood levels are returning to normal. He is going to be on a couple more meds to keep him stable and may have to take these the rest of his life. Ilde and Jim are looking forward to taking him home but are glad the Dr's are wanting to watch him another night.I am blogging from my iPhone in the Vandy pharmacy waiting to get Eli's new mix of steroids. If Eli ever makes a professional sports team, he is so going to be busted for Steroid use. LOL.

Please Read New Post Below Pics!!!

Warning!!!! iPhone Pics not Nikon Pics:)

We are in the ICU again

You read that right. We had an eventful Thursday which has turned into another stay at Children's ICU. Thursday morning we had an appointment with the Gland Dr. regarding Eli and his next few months. The Dr. had some blood drawn and sent to the lab and we went home thinking everything is fine. We get a call around 4:00pm from the Dr's office for us to return to children's Hospital ER because his labs are off. Wait a minute this sounds just like Monday's post. We were a bit upset thinking if we keep having to go down to the ER just because somebody goofs up his lab report, we are going to be ticked. So we get the kids together for the grandparents to watch, and head on down. Same procedure occurs and Eli goes through some test that reveal his potassium levels are too high and his salt level is too low. NOT GOOD!! They Dr's want to re-test to be sure. When I say re-test that means the nurse has to try to find a vein on a 11day old infant that has been stuck over 30 times. Good luck finding a vein that has not been blown. Poor kid looks like a bruised pin cushion. So they find a place and start another IV in his leg. Meanwhile his body temp has dropped 2 degrees and so the Nurses decide to put a warmer on him. Your probably wondering where I am going with all of this. Hang on....here it comes. Sooooo Ilde heads to the house to get some extra cloths for the night and Jim is alone with Eli. This is where everything goes bad. Eli all of a sudden starts crying a lot so Jim starts to feed him and realizes he is very warm. The warmer is cooking him like a bake potato, the cencer wasn't picking up how hot he was getting. After insisting to the nurse that he is getting way to hot she turns it off. Eli continues to cry his really bad for like another 45 minutes and Jim is getting a bit panicked because lots of alarms are going off and He is having no success getting Eli to calm down. He decides to unwrap him and notices that his foot is purple and his leg is swollen up twice as big as the other one. Jim calls the nurse in and demands to see a Dr. What had happened was Eli's IV had blown the vein and was pumping a lot of fluid into his leg causing him a ton of pain. OUCH!! At this point I think Jim was ready to call it a night.
After this crazy event they decided to admit Eli to the ICU to get him stabilized and see why his labs keep getting out of whack. So that is where we are currently and are playing the waiting game. Eli is doing better, however it looks like he is going to need an additional steroid to fix this potassium and salt issue. The reason that the potassium level is so important is if it gets to high like his was it will potentially mess with your heart.
Please keep us in your prayers. This has been a tough go thinking we are safe and at home then finding out we are back where we started a week ago. Tough on the ol'e emotions. Ilde and I are doing better today but are a little skaken up.
We will let you know how tomorrow goes.

Blessings
Ilde and Jim