House Progress

It's been awhile since I updated with what we've been up to at the new house. We took a couple of weeks off with all Elliot's health issues, but we're getting back into the swing of things. 

We've gotten the bedrooms just about finished with paint. Now we're ready to start trim. I'm not sure if I've put this angle of the master bedroom up. This shows the living room, then we have our closet, a small linen closet and our bathroom.

Elliot's room. Two walls have the stripes and the other two are just the brown color.

Guest room. 

Before the craziness of life hit Bryce and his friend Dan got the floor in the main living area down. It looks great. While we were stuck in the hospital our carpets and appliances arrived. It was so much fun to come home to a house that felt so much more like a home! We were even able to take our shoes off inside the house for the first time! What a great feeling!!

Now that I have these shiny new appliances it makes me even more excited to get the cupboards whipped into shape. I can't decide if I want to go with dark cupboards to show off the stainless steel, or keep it light to match the woodwork. Thoughts?

A closer look at the floors

It's not going to be too much longer before we can start moving our things in, and we cannot wait!

We're Home!!!!!!!

Well I think the title says it all. We finally got discharged yesterday afternoon, and man were we ready. We had to sit around and wait for his blood thinner medicine do its thing and give us the magic numbers. And yesterday the Xa levels reached .5 which is the lowest number in the therapeutic range but hey its enough to let us get discharged. We found out at 1:00 pm and then had to wit around until 5:00 p.m. for all his medicine to get filled at the pharmacy and the discharge papers to get finished.

While at home we will give his antibiotic through his PICC once a day, sodium supplements twice a day (basically salt water we have to force him to swallow), and inject his Lovenox (blood thinners) twice a day. In addition we get to go to the lab twice a week for blood draws to monitor all his levels to make sure his kidneys are doing their job, So its a lot but if it makes E better it is worth it. We will also do a quick follow up in the cities in a month and then in three months do a full fledged follow up with ultrasounds and meet with the nephrologist and urologist too.

Thank you again for all your prayers and messages and support. It was such a scary and stressful time but we definitely saw God's hand of guidance and protection through it all!

Wednessday Update

I was really hoping that we would be done with these updates by now and all snuggled in back home resting up. Doesn't look like that is the case for a few more days.

Elliot was put on the OR schedule as a fill in again. Meaning we had to stop feeding him at 3:00 am and just wait to see when they call us down. That sucks. Majorly. It is one thing to deal with a crying baby during the day and a whole different ball game when it is 5 in the morning you have barely slept and all your baby wants to do is eat and you can't do a single thing about it. Once morning rolls around life seems a little easier. We were able to get some more sugar water to pacify him and we played with toes and toys and he flirted with more nurses. Good news this morning is that his morning labs show that his infection markers are down to the 20's where they had been well over 200. So we are pretty pumped that this infection is almost all the way out of his little body!!

We got called down to the OR around 1045, did the pre-op thing and he was brought back to the OR around 1130. Bryce and I walked around outside for a little bit and it was the first time I had been outside since Friday when I drove down here. It was so nice to get a breath of fresh air and walk around in the little garden area they have here. The best part were the lilacs lining the paths, beautiful! We came and hung out in the waiting area and finally a little after 1:00 the Dr. came and talked to us. The good news: the PICC went in great on the first try. The bad news: They did a ultrasound to look at the clot while in there and it was a little larger than they would have liked and closer to the main vein to let them leave it alone. So now we are getting the Hematology gurus involved in the equation. We will start him on twice daily shots of blood thinners to help his body break up and dissolve this clot and hopefully decrease his chance of getting another clot that compromises his new PICC. He will be on these shots for 3 months so we get to go find out not only how to shoot medicine into his blood stream but now we add medicine sub-cutaneously!Oh the joys!! He will get his first shot this evening and we have to hang out here until after his Friday morning shot and do some more labs to see if levels are where they should be, then home - theoretically!   It's a good thing that there is a laundry facility in the building as we are here way longer than either of us anticipated. As frustrating as all these setback are we feel more comfortable here getting things checked out than going home now when things are still in the unknown category.

Monday/ Tuesday Update

Sorry I didn't get to update yesterday. It was such an exhausting day that the computer just didn't make a high priority.

Yesterday we had Elliot on the OR board as a fill in so he couldn't eat all day just so he would be ready whenever they could squeeze him in. He did surprisingly well with that. We tried to keep him asleep as much as possible just so he wouldn't be aware of how log it had been since he had eaten. We also kept him hopping with different tests. In the morning we went down to Nuclear Medicine and had a renal scan with Lasiks. We had had this test done before, so it wasn't anything new. In a nutshell they pump him with a low dose radioactive dye and take pictures every couple of seconds to watch how his kidneys process and dump the blood. Thankfully he slept through half of it.  We got back into our room and were told that we were on the OR board for 230 so we had just a few minutes to grab lunch and get ready to go down to pre-op. We got pretty excited and pretty soon 230 came around and we were still in our room. The nurse came in a bit later and said that we got pushed back to 630.  just about left then. That is already over 12 hours for my baby to go on nothing but some sugar water on his pacifier. We got brought down to imaging for his renal ultrasound, and that helped pass a little bit of time until his procedure. Finally we got the ok to be brought down. We spent a few minutes in pre-op and met the doctors and nurses that would be working on him. He had to get a PICC line in. A more permanent port for us to give his antibiotics to him for the next week or so. The urologist also did a quick look with a scope and he had a minor other procedure as well since he was going to be put under. Everything went well. The urologist came and gave us the great news that he is almost positive that he will out grow the hydroneprosis!!! After all the worst case scenarios that were thrown our way we were almost not expecting for the best case to come into reality. We were able to breathe such a sigh of relief. Just do some follow up ultrasounds in a few months but as soon as the infection clears up we are in the clear. We were back in the room by 900 and E was having a rough time. The scope makes it very painful to pee, so he would be resting comfortably and then wake up crying in pain. Thankfully the nurse stayed right on top of the meds to control the pain as best as we could. We had a pretty fitful night sleep. E would sleep best with one of us holding him so as you can imagine not much sleep has had by anyone!

Today, we were told that there was a possibility of getting to come home. He has been fever free for oer 24 hours the infection was going down and so life was looking good. We went to a class of how to administer the iv meds, which is crazy scary. Knowing that you are shooting things right into your sons blood stream next to his heart is more than a little daunting. When we got back from the class we were told that the nurse was concerned with his PICC. His hand was turning a little blue and had puffed up a bit. We got another ultrasound done a little bit ago and found out that there is a clot inside the line. which means that that PICC needs to come out and we need to get scheduled for another surgery to get a replacement one put back in. It doesn't seem likely that it will be today as we are already far into the afternoon so we will be staying put for a little while longer. Even though we were told that today might be a possible discharge day we were anticipating being here at least through Wednesday, but to hear it for sure is a little disappointing. But we are thankful that the clot was found early and that it can be taken care of quickly.

Sunday Update

Hi all, not much to report today. It was our "rest" day before the craziness of tomorrow hits. A quick rundown on today:

• His fever has been down all day and his blood pressures have come back down to the 90's!!
• His infection markers have spiked a bit but they aren't too concerned with this yet as they take 36-48 hours to come down after the infection starts to get better. His sodium levels are still pretty low so he has to take a salt water solution by mouth a couple of times a day.
• We met with his urologist, nephrologist, and core Dr. team to set up 2 scans in the morning and a minor procedure and scope for the late afternoon. These will be the key points in telling us what we will be doing, whether it is surgery now or still a watch and wait situation.
• His IV stopped working in his scalp so they took that out and started one in his arm. Taking the tape off his head was the worst thing of the day. I have rarely heard him cry so hard. He just looked at me with his tears streaming from his eyes with a look that asked why I was letting them do this to him. Broke my heart. His catheter also came out and so he had to go through that whole ordeal again. How this little man is still letting nurses near him is beyond me!
• Thankfully after that we had an hour stretch of some really happiness. We talked and made faces at each other. He played with his toes and whacked Bryce in the face with the protective cover over his arm iv - which he found hilarious!
• Our hospital room is starting to feel like our home away from home. We went grocery shopping and got food and snacks for the next week or so. I walk around to the lounges in my slippers grabbing my cup of coffee, for a hospital it really is a nice place.
• Last night was another terrible sleep night, we are praying hard for a good nights sleep to make it through tomorrow. It will be a tough day for all of us.

Elliot's Saturday Update

Well it's been another fabulous day here in our hospital room. Last night right after I wrote that he fell into a deep sleep he woke up and we didn't have much sleeping past that. Between the fussiness from being uncomfortable and the vitals checks there was a whole lot of disruptions. The only thing that seemed to settle him down was a bottle, which is weird since he swore off bottles a couple of weeks ago. That was hard on me, to not be the one he turns to for comfort and nourishment but I suppose I had to get used to that eventually. Today he has gone back and forth between me and the bottle so thankfully he hasn't totally given up nursing. When we woke up or rather gave up sleeping he was alert and happy. It was so wonderful to see a little bit of his old self peeking through.

We got to meet several of the Drs that will be helping us along the way, and we feel so happy to be here. These doctors are knowledgeable and are treating everything seriously but don't seem to be jumping the gun to fix everything at once until we know what is the core problem. Today and tomorrow are days to set the stage for Monday when we finally start running the tests to help determine the course of action. They want to make sure the infection is under control and that his kidneys start acting at least semi normal. This will allow us to get a better picture of where things are sitting.

Elliot throughout the day has had some good periods of time where he will smile at us, but as the day went on he got fussier and fussier. He now has a catheter in to try to relieve the pressure in his urinary tract and we're hopeful that will alleviate some discomfort and allow him to rest a bit more tonight.

Thanks again for all your thoughts, prayers, messages and just being a blessing in our lives!

Elliot's Hospital Stay

Hi folks, I know there are a lot of people that know a little bit about whats going on with E right now so I thought I would take a moment to write out the full story so you can stay up to speed.

We've been keeping a close eye on Elliot's hydronephrosis (dilated kidneys) since he was born and have done numerous tests, scans and doctors appointments to keep things in check. At the beginning of April we had a few tests done and he was put on antibiotics to ward off UTI's. He started reacting to that right away, just in irritability and diarrhea. Soon he started throwing up frequently. Talking to the doctor we stopped the antibiotics to see if that was causing it, and things just got worse. We went to a couple of apts and tried some other meds to try to settle things down and nothing worked. Yesterday I took E to go to the pediatrician because he wasn't eating anymore and anything he did he threw right back up. He had no energy, had sky high blood pressure, and lacked the cute pink baby look. After a few minutes with the pediatrician we were sent up to the hospital to get an iv in for fluids.  Unfortunately he was so dehydrated they couldn't find a vein so he had to have the iv in his scalp which is just awful to look at! We spent a few hours at our local hospital before being transferred to a larger hospital about an hour away. E and I got our first ambulance ride together! He did great, I got motion sick apparently I don't do well riding sideways in a vehicle. Anyways we spent some time in the ER there and did all the lab work repeating our story for the 50th time and the ever fun catheter.

 After all that was done we got settled into a room in the hospital and continued to give him fluids, antibiotics and probiotcs to attempt to get all his electrolyte levels in check, and the infection under control. He conked out thankfully and slept through the whole night which was such a blessing to us as he hasn't slept for more than an hour stretch in a while, so unlike my champion sleeper! In the morning we had a 2 hour renal ultrasound and Doppler which just ticked him off and he went downhill a bit, his fever spiked and blood pressure went into the 130's (if that was in an adult it would be like comparable to in the 200's - very dangerous!) With all that is going on in his little body, blood pressure, uti, fevers... the doctors there decided that it would be best to be at a children's hospital where we can have access to a team of pediatric specialists - cardiologist, urologist and nephrologist. So we got to make the trek in another 4 hour ambulance ride to a large children's hospital. E has been furious with us ever since, spiking his fever and blood pressure again. Not good. He had many doses of Tylenol and some morphine to keep his pain in check and he was having none of it. He just passed out in a deep sleep a few minutes ago, and we're hoping this time it is for quite some time, giving the medications time to work and rest to his body.

While we are down here, ours and the doctors goal is to put the pieces of the puzzle together. We are hoping to get a clear picture of what is causing all the symptoms so we can treat his condition as a whole and not just piece meal a diagnosis together.

You prayers are coveted. He is a tough little boy but my heart isn't that tough. It is awful to listen to him scream and not be able to do anything for him. God is in control, we know that and are trying to keep that in the forefront of our minds. Pray for wisdom for the doctors to know how to treat his issues. Pray for strength for little E as he has been through a lot in the last few days and weeks.

Thank you all!