Wednesday, October 29, 2008


It's official...Noah is once again fighting a yeast infection in his blood, the line likely being the culprit. He spent some time in a monitored bed as his blood pressures were drifting a bit too low, however, they have stabilized and he is back "home" to CH5. He is still retaining fluids and is relying on doses of Lasix to help him get rid of it. The fevers are still around and he is still so far from looking. So everyone is in agreement that this line needs to come out, and somehow we need to keep Noah line free as it has been one complication after another.

Tomorrow our surgeon will pull this line and we will try to do without one and use a peripheral IV to run his antifungal drug. We have started TPN basics today as he is still not tolerating any feeds, (no lipids as his liver is still enlarged). But once we lose this line, I am unsure of what we will do for nutrition until Noah's gut starts working again.

There is lots of talk...ideas floating around...everyone seems to have their own opinions on what is best and where to go from here. But as of now, there is no definate plan and things seem more complicated than ever. Praying for answers...

Sunday, October 26, 2008


Noah is currently spending time on CH4 in a monitored bed. Preliminary tests have found a fungal infection (location yet to be determined) along with an enlarged liver and spleen. He is also retaining a lot of fluid which is not great either. Blood work does show some concerns as well.

Continue to pray for Nichole as she is spending her days advocating at the hospital. It is hard to believe that with all of the above problems, one ER doc was willing to send him home with a prescription for antibiotics (not a beneficial treatment, in fact a counter productive treatment for Noah's fungal infection). Thank goodness for Nichole willing to be there all the time and look out for him. Some may say it is over attentive, but obviously needed. Pray for energy and peace as it looks like the start of a longer stay again.


Saturday, October 25, 2008

Going In...

Once again, mommy instinct is right. Noah started spiking fevers yesterday, he is swollen this morning, barely peeing, respiratory rate is up and it looks like maybe cellulitis around his gj tube stoma. Heading in...will update when I can.

Wednesday, October 22, 2008

TPN Clinic

Clinic was interesting today. Once again we discussed taking the plunge and trying G tube feeds. Seems that we are running into a bit of a brick wall with the GJ feeds (not being able to increase rate or concentration) and it is time to forge ahead and try something new. Low potassium is still an issue, likely from the output coming from his drain. If we could get rid of the constant drainage and be able to feed into his stomach, we could eliminate some issues. We've gotten ourselves into a "catch-22" with trying to fix issues by adding more things and complicating everything even more. So it is time to sit back and re-evaluate. It has been about 2 years since we've tried stomach feeding, so there is no way to know if he would tolerate it unless we take the plunge and give it a try again. This will likely have to be an in hospital trial. It scares me as there is always the risk of aspirations again and the terrible retching we had before. But perhaps he has developed enough to be able to do it now. The shape Noah is in right now though, I refuse to try it until he is looking better though.

We have started a potassium supplement to try and bring his potassium back up, and hopefully help him feel better. For now we are still home...

Tuesday, October 21, 2008

Still Hanging In...

We got Noah's GJ tube replaced yesterday and it went very smoothly. Also repeated his bloodwork again to keep an eye on that potassium. I didn't hear anything back about it, so I'm assuming that it's ok. But Noah is still not ok and I just dont know what is up. He doesn't play or smile like usual and he is still so very tired all the time. We are using ventolin regularly and so much suctioning!! TPN clinic tomorrow, so I can make my concerns known.

I also got a call from Joshua's teacher on Sunday. He has been identified as one of the kids in the class needing extra help learning how to read. So each day he will spend 40 minutes working with an EA to help him catch up to the rest of the class. I don't think he has any particular learning difficulty, rather, this is just another reminder of the sacrifices we have had to make. Unfortunately, Kailyn & Joshua get neglected in particular areas when we are in survival mode. I can't help but feel guilty, but also thankful that there are programs in place in the school to help. Praying that the Lord will protect them and that they will never grow up to resent all the time we have had to spend with Noah.

Friday, October 17, 2008

One of Those Weeks...

Yes, it's been one of those weeks...Noah continues to not be quite right. We got a call yesterday morning that his electrolytes from his bloodwork on Tuesday were wonky. His potassium and chloride were both low. So it was off to clinic yesterday to have the bloodwork redone. The new lytes showed some improvement, which means hopefully they are correcting themselves, so we are holding off on supplementing with potassium for now. That may explain why he has been so incredibly tired all week. Alot of retching and increased output from his stomach too.

We also got a call today that radiology is concerned about this temporary tube that was put in this week. The right size was not available, so this tube was cut to fit him until his new tube could be ordered in, which has it's risks. So now that the new tube has arrived, we have an appointment on Monday with radiology to change his tube again. Not looking forward to that.

Hopefully the weekend is uneventful!

Wednesday, October 15, 2008


Thanksgiving this year was very low key for us and I ended up working most of the weekend. Monday I took the kids to see the new Disney movie "Wall-E", which was super cute. We left Noah with Doris, but right before we left, the balloon on Noah's GJ tube broke and the whole thing came out. So we ran fluids overnight to avoid going to the ER on Thanksgiving, and then yesterday, after physiotherapy, it was off to PDU for his monthly TPN bloodwork and to radiology for a new tube. It took nearly an hour and a half to get this one in. For some odd reason, they just couldn't get it threaded out of his stomach. Noah was so exhausted from fighting that about halfway through he actually fell asleep and slept through most of the rest of it. What a blessing this was, as it is always very uncomfortable for him.

Today he looks very unwell, though. I'm not sure what is going on, as he has no fever. But he has basically been sleeping since yesterday afternoon. And the dark green bile has started draining with alot of retching. Not good signs...

Thursday, October 09, 2008

Just OK

Things around here have been just "ok". Noah hasn't looked great since he came home and has been so tired, but he's holding his own, and no fevers, so we continue to wait and see what he does. He has been struggling with SO many secretions in the evenings lately, and we are using Ventolin daily right now. Hopefully things will settle down and I will feel confident enough to unpack my bags. But it's the start of the "germy" season now, which is never a good thing.
No big plans for this Thanksgiving weekend and I am glad we are planning to stick close to home. I'm planning to pick up a shift, and hopefully we can do some family things as well. So it should be a quiet weekend with some time for reflection. We have so much to be thankful for this year.

Monday, October 06, 2008


Home!! Definately one of our quickest admissions ever! Blood cultures came back negative, meaning no line infection!! ID kept him on IV antibiotics until the 72 hour mark, just to be sure we had nothing slow growing, but all looks well and his line is still safe. Everyone was quite stunned that nothing grew, as it is so rare we get a negative culture when he is sick. So we are chalking this up to something viral that threw him for a bit of a loop. After a couple of days of full TPN, he is back up to his normal tubefeed/lipids and doing well. No IV antibiotics to go home with, which is a bit odd for us, so praying that we can keep him home!

Saturday, October 04, 2008

Hospital Update

Noah was admitted on Thursday, as I suspected. Cultures were done and all the big gun antibiotics were started to cover him for anything. The good news is that after getting Noah's fluids sorted out, other than being a bit puffy, he is looking good and hasn't had a fever since Thursday evening. We are also approaching the 48 hour mark this afternoon, and so far Noah's cultures are still negative! We are all suprised that this may not be his line, but I won't believe it until those final results come back. So hopefully this may be just a virus after all, which means this could turn out to be a short stay. I am hoping to get some GJ feeds restarted today and we will see if he will tolerate that.

It's the little things that are beyond my control here that get to me the most, like not getting TPN for a second night because someone forgot to fax the orders to pharmacy. I so hate being at the mercy of the system.

Wednesday, October 01, 2008

Packing Up

I have spent the evening packing up, as I am 99% certain we are headed inpatient. Hoping to hold off until the morning, rather than having to sit in the ER all night. Noah is spiking fevers and his gut has shut down. He is miserable...I am miserable. Praying for strength for all of us to get through the next few days. Praying that this is a virus, and not his line...