Made It Through Another Week...

Noah is looking well and is no longer having fevers or breathing issues. However, his 2nd set of blood cultures done on Tuesday have still come back positive again. So despite the fact that he is looking well, his blood still continues to grow bacteria. So we are now looking to see if the infections has seeded somewhere else again or it may be that the infection in the line can't be cleared. His ECHO was clear, which is good news. A bone scan was done today, which we are still waiting for results. A 3rd set of cultures were drawn today so hopefully this one will come back negative.
We also started a bit of tube feeds, which at 5mL an hour, Noah seems to be tolerating. The insertion of the tube went fairly well. Although, the Lorazepam we gave him before the procedure to sedate him, ended up having the opposite effect. He was literally bouncing off the walls for 3 hours after we gave it, unable to settle himself. Don't think we'll be using that drug again!!
We have a team meeting scheduled for Monday morning to discuss the plan for this line and more long term plans. We are so tired of this place and days like today there seems to be no end in sight.

Hospital Update

Well, it seems that we are in a vicious cycle of clots and line infections. Noah was admitted on Saturday with pneumonia. Blood cultures were also done and they came back growing a Staph infection. His platelets are also quite low, so there may be a new clot brewing. His ultrasound today showed that his femoral clot from last admission is still there, but shrinking. Tomorrow he will have an ECHO done of his central line and heart to look for any new clots. We are hoping to be able to save his line, but it will depend on the results of the ECHO.

We are also going to try to restart some feeds, so tomorrow Noah will have his GJ tube put back in under flouroscopy. Hopefully he will be able to tolerate at least a small amount of feeds.

We are tired and discouraged and praying for a better solution to these reoccurring issues. Noah is in good spirits and looking much better today.

Spiking Again...

After a wonderful day of celebrating yesterday with friends and family (will have to post pictures another time), we awoke to Noah spiking fevers over 40C. His chest sounds cruddy and he's been fighting a cold for a while now. We've been suctioning lots. Thinking it's probably pneumonia. Praying it's not his line. We are heading to the ER this afternoon. At least we all got to be together for his special day yesterday!

Noah is 2!!

~~Noah is 2!!~~

Who'd have thought...2 years!! 2 years....

Our baby is no longer a baby! Our little peanut, our ray of sunshine...

We praise God for another year, another milestone we can celebrate. It certainly hasn't been an easy one. We spent 235 days this past year in hospital, muddling our way through so many new issues and illness, and prayed our way through a few more surgeries. And yet, somehow, Noah's birthday has crept up on us. Somehow another year has passed. A reminder of God's goodness and faithfulness through it all.

Happy birthday our dear sweet boy. We love you more than words can say. We pray for many more birthdays to celebrate!!

And in this crazy life, and through these crazy times

It's you, it's you, you make me sing.

You're every line, you're every word, you're everything.

~Michael Buble "Everything"

Tribute to Connor

Heaven is a brighter place today...

Connor, a beautiful boy from my TPN support group has gone to be with Jesus yesterday. His life has touched so many. He is now tube free forever. What a stark reminder of the fragility of our medically complex children and how quickly things can change. I can't even begin to imagine...

Your family is in our thoughts and prayers. We grieve with you.

http://www.caringbridge.org/visit/connorscott99

Line Woes!!

We are back from a very frustrating day in PDU. We tried TPA into Noah's line, but it was so blocked that the nurse couldn't get it in at all. So after speaking with our surgeon, the surgical nurse clinician tried taking the cap off the line and injecting the TPA directly in with a 1mL syringe. After a bit of time, she finally got it in. We were all thrilled! So while waiting for the TPA to do it's thing, I took Noah for a walk to get some coffee. He was playing with his shirt, and when he lifted it up, I noticed his line had ballooned out! All the TPA had found a weak point in his line and ballooned out from there. We quickly went back and they pulled the TPA out, but the line is ruined. It has been weakened too much and when we try to flush it, it just balloons out, looking ready to explode. So, after only 1 week with this new line, we are already down to one lumen. The most frustrating part is that this line was sluggish when Noah was discharged from hospital on Monday. If we had TPA'd it then, we could have saved ourselves alot of grief. An unfortunate lesson well learned. This is such a critical line and the surgeon had a very difficult time putting this one in. We can't afford to lose it.

The good news is that the other lumen still works well, so we are able to use it for the TPN and antibiotics. But having only one lumen is risky and at any sign of sluggishness with our working lumen, we will have to head in. Why can't things ever be easy for Noah? All these line complications are so frustrating and to lose half of this brand new line already is very disappointing. At least we were able to come home, but what a waste of a day.

Blocked Central Line

Never a dull moment around here... one of Noah's lumens on his line (yes, his NEW central line) is completely blocked. We tried to access it last night and couldn't flush it at all. I could see a clot sitting in the cap, so I changed the cap and tried to flush it out with heparin, but no luck. How frustrating!! Fortunately, his other lumen works beautifully so we can still run his TPN, but we need to get this line working properly again. So first thing tomorrow morning we are headed to PDU (pediatric day unit) so that some TPA can be put in Noah's line to try to unblock it. Unfortunately this process can take a few hours, and sometimes it has to be repeated more than once, so I guess we'll be hanging out there for the day.

I took Noah to Superstore this afternoon while he was unhooked from his TPN. We hadn't been there for months, and yet a woman who works there recognized us and came over to remark on how much Noah had grown. I was shocked, as I had only spoken with her a couple of times many months back. But Noah's story had stuck with her and she had been wondering how he was doing. Strangers are very drawn to him. His smile is so infectious, that we usually end up striking up more than a few conversations when we are out. So many lives he has touched in only 2 years... When times seem tough and I find myself wishing for a more "normal" life, God sends these gentle reminders that what we are doing really matters. Noah's life will have an impact beyond what we could ever imagine.

Some new pictures...yep, he still loves to ride in Joshua's dump truck...and play dolls with Kailyn (or rather be one of Kailyn's dolls himself)

Short & Sweet

We are home once again! It feels strange to be in and out so quickly this time, almost like something is not quite right. But we certainly aren't complaining! It is so good to be home again and to be here when Joshua got off the bus from his first day of kindergarten. So now it is time to face the mounds of laundry and everything else that piles up around here. I always feel a bit disjointed when we first get home and it takes a couple of days to get back into routine here.

Noah is doing very well and he looks terrific. His cheeks are filling out and he is happy and full of energy. Hopefully we get a bit of a break before the cold/flu season is on us full force once again.

New Central Line & Doing Well!

It's day 6 of Noah's hospital stay and things are looking much better. An ultrasound was done last week of Noah's femoral line and another large clot extending from his line up to his liver was found. Hematology is stumped as to why Noah's body still produces these clots even on enoxyparin and heparin. He has been tested for clotting disorders, but so far everything looks normal. It looks like as long as Noah needs a line, we are going to be dealing with this complication. This means long term enoxyparin injections twice a day for Noah. His poor bruised thighs are only going to get worse. The idea of adding another blood thinner such as ASA was tossed around, but the hematologist decided that the risk of bleeding would be too high. So we will continue to do what we are doing and deal with the clots as they come. It's very frustrating to be dealing with so many line problems. We know that having a line is not ideal, and yet when we see how well he does on TPN (Noah is over 13lbs now!!), it still seems to me that this is our best option right now.

On Thursday the surgeon decided to go ahead with the surgery. She removed his femoral line and put in a new tunneled double lumen Cook line in his chest. Noah did really well. He spent Thursday night on the surgical ward in a monitored bed and was then moved back up to CH5. Once that old line was out, the fever spikes stopped. He has been fever free for 3 days now and looking great. So the plan is to go home tomorrow once we get everything organized with the home IV and TPN programs.

Going Back In...

Noah is headed back in to hospital this morning. After talking with the pediatrician, we decided that Noah needs to come in to hospital so that Infectious Diseases can figure out what is causing these unexplained fevers. So after I get things a bit organized here at home and make sure the kids are all ready to start school, we will be headed in to stay until things get cleared up. Not sure what this will mean for surgery on Thursday...