The Dreaded "Y" Word

We are stuck here in hospital once again. I thought that Noah had a viral infection like Kailyn and Joshua, but when they got better and he didn't, I began to worry. So during the night on Sunday, we headed to the ER, with Noah spiking crazy high fevers. His initial bloodwork showed a very low white blood cell and platelet count. So after a long 9 hours spent in the ER, he was finally admitted to the ward. We were unable to get a line culture, but got a peripheral blood culture, which yesterday came back growing the dreaded yeast...again. Very frustrating! ID feels that Noah may have been undertreated last time and that's why we've had a reoccurance. So far we don't know if this is the same yeast, or if it is a new type of yeast. We will have to wait for the lab to identify it. But the plan for now is to try to treat with Amphoterrible once again and try to save this line. So the Ampho was started yesterday and is a miserable experience for Noah once again. He is still spiking the odd fever and hasn't perked up much yet. His platelets are still dropping, but hopefully he will begin to respond soon to the Ampho. We are unsure yet how long the course of treatment will be this time.

We also finally got results back regarding the Sanfilippo Syndrome test that was sent a couple of months ago. He was tested for type 3C, which came back normal. However, the tests did show that his cell activity isn't completely normal, and his MPS level in his urine is still abnormal. So we will continue to try to diagnose exactly what type of MPS disease he has. Tomorrow bloodwork will be sent for type 3B. Unfortunately each test has to be sent to the US, and takes weeks for results to come back. Although in the short term, this diagnosis likely won't make much of a difference, but in the long term, it would be very helpful to know.

Fungal Invasion

Nichole and Noah headed back in to the hospital on Sunday night at he continued to spike fevers. The preliminary results show that there is a fungal (yeast) infection growing in Noah's blood. Some think his central line needs to go while others feel that it can stay for a while due to there being very few options for a replacement line. This means that his regular team of specialists will begin a treatment plan and take each day at a time. It also means an expected extended hospital stay once again. Thank you to those who have been praying for us. We were able to spend almost a full month out of the hospital.

Misbehaving Children!

Ok, all my children are misbehaving here!! Noah was spiking temps on Sunday and I was starting to get into prehospital packing mode, and then Kailyn started spiking that evening. Figured it was just a virus and, sure enough, by Tuesday all was well. Yesterday Joshua started spiking, and now this morning Noah started again!! Uggg...hoping Noah is just unlucky enough to have picked up another virus. Both my boys are spiking up to 40C with nasty coughs, so I feel a bit more secure that it's not a line issue, but hoping we're not headed to pneumonia again. Other than needing his ventolin, Noah seems to be breathing ok so far and his lungs don't sound too bad. I hate this!! Going to wait it out today and see what happens, but guess I'll be preparing for hospital, just in case. Of course, we are going into the weekend! Is it going to be a great day or what??

TPN Clinic

Yesterday was TPN clinic.
Unfortunately, our surgeon who orders Noah's TPN was in emergency surgery, so she was unable to be there. That meant some of our questions went unanswered. However, we do have a new plan to try to work Noah off the TPN basics. Starting today, I will try to increase his GJ feeds by 1mL/hr. So we went up to 16mL/hr today and I will leave him at this for a week. If all is well (not too much stomach drainage or diarrhea), then we will move up another mL next week. If we can get him to at least 25, then we can stop the basics again.

He is also gaining about 8 grams a day which is appropriate for him, bringing him just shy of 16lbs, so we will continue to run lipids every other night for now to help keep his triglycerides in check. The less TPN we have to give him, the better. His bloodwork from last week looked great.

And I made it to work last night! It felt great to be back, so hopefully I'll be able to get there more often, although extra hours are scarce right now.

Status Quo

Nothing much really to blog about this week. Things are pretty boring around here which is always a good thing. Noah did spike a couple of fevers on Sunday and was draining alot from his stomach. I was starting to get into hospital preparation mode, but since then he has settled down. Kailyn has been spiking fevers today, so I think it's just a virus making it's way through the household. It's great to see that Noah is capable of fighting some of these things off and it gives me hope that now that he is growing and better nourished, eventually we may get to the point where the home days outnumber the hospital ones. Things are so settled here that I'm actually going back to work tomorrow evening! It's been a few months since I've picked up any shifts, so I'm a bit nervous about it. I hate having these long spells in between and then having to try to reorganize myself all over again at work. So I'm praying that it will all go relatively smoothly at work and at home.

We have Noah's TPN clinic tomorrow afternoon and then therapy on Thursday. Still bitterly cold here...

On The Move!

We went to Rehab Center for Children yesterday to have Noah fitted for a walker. We were expecting a wait time of at least 2 months to have it built. But they happened to have a spare one that they modified yesterday morning to fit Noah so we were able to take it home right away. He absolutely loves his new view of the world, although he has only figured out how to move backwards in it. I'm sure in no time at all he will be zooming around and getting into all kinds of mischief! Right now he has the most fun being driven around by Kailyn & Joshua. More bloodwork tomorrow for hematology, and then another busy week of appointments is done. Still battling this cruddy cold, as are the rest of the kids. Mom & Dad, could you bring back some of that Florida air with you??

Bloodwork Day Again

Things continue to go well here at home. We went to PDU today for bloodwork again. Hopefully it will look as good as it did last week. Frigidly cold here today!! We all can't help but thinking that a year ago at this time we were in Florida. Especially since Mom & Dad are there again right now. http://noahgrantjohn.blogspot.com/2007_01_01_archive.html
It's still hard to believe that we were able to go and that everything worked out so well. Our goal is to someday get back there again.

We are continuing to battle constant colds, but as one of our doctors said, "a cold a month is average" so I guess this is pretty normal. They just hit Noah so much harder though and he ends up with alot of asthmatic symptoms. He doesn't sleep well at night either when he is coughing and stuffy, which can get pretty frustrating, especially when nothing comforts him. The good news is that the Septra and Omegaven seem to be boosting his immune system enough to keep these colds from developing into pneumonia.

Noah is getting better and better at saying "mama". Melts my heart into mush...

"The Lord has promised good to

His word my hope secures

He will my shield and portion be

As long as life endures..."

Chris Tomlin ~ Amazing Grace

Our Little Surgeon in the Making...

It's amazing the things our kids take in. Joshua loves performing "surgery" on his bears with Noah's old supplies. To them this is just part of everyday life. Who knows were it might lead someday...

Noah's bloodwork this week looked fabulous. His white count and platelets are back to normal and his triglycerides and bilirubin are also back down. His ALT and AST (liver functions) are still slightly elevated, but much improved as well. So no more bloodwork until next Monday. His palate surgery that was scheduled for the end of January has been cancelled after much discussion with the surgeon and our pediatrician. Right now the risks outweigh the benefits, and so until it looks like Noah is beginning to show more speech progression, we will not pursue it. Noah has started saying "mama" in the past couple of weeks: a huge step in the right direction!!

On the Move

Noah spent the morning in PDU having bloodwork done and his PICC removed. Glad to be rid of that! All went well... just waiting on bloodwork results to see where his triglycerides are at.
Noah is a busy little guy lately. He's bum scooting everywhere these days and I am actually beginning to have to babyproof again! He loves the stairs, so we need to dig out the baby gate. And the kids toys are, of course much more fun, and Noah drives them crazy when he manages to get into their things. I snapped a few pictures after Noah discovered Joshua's car bin. Joshua was NOT impressed!

Thank you for all the meals so many of you have been providing us with. It has been SO helpful and I don't think we've eaten this well in a long time! We appreciate all the support so much.

Better Late Than Never!

Finally...Christmas pictures! Yes, our Christmas was wonderful! We spent the 22-23 in the city with the Harder side of the family. Erik & Jamie, Micah & Keziah you were SO missed...

The cousins waiting patiently for stockings!

Noah enjoying his favorite activity!

The girls in their new pink shirts from Granny.

Noah meeting his new cousin Judah.

The 24-25 was spent at home with the kids...






The 26-27 was spent at Brad's parents (until everything fell apart!!)...


Noah hauling around his dump truck of goodies.

Storytime with Grandma.

Sledding! No, Noah is not out there!!

Noah's line is doing well so it looks like his PICC should come out on Monday. I will be glad to be rid of it. One less avenue for potential infection. Once again he is battling a cold and needing his ventolin to help him breathe. I'm beginning to think that this is as good as it gets these days as far as Noah's health goes. Seems we never get more than a day or two before a new virus sets in. We are still trying to settle back in at home now that the holidays are over. It always takes me a few days to get back into routine and switch from hospital mode to home mode.

Miracle!

Thank you, Lord!! We have a working central line again! After a very long day in PDU, Noah's line was TPA'd and it worked! I thought there was no way this line would be saved, but much prayer went into it and it is now flowing beautifully! So it looks like all the frustration of this past week was worth it! We will go back to PDU on Monday for TPN bloodwork and if his line continues to work well, he will have his PICC line removed at that time.

We have had to go backwards with Noah's tube feeds and restart him on the TPN basics again. He was just having too much stomach drainage and diarrhea. So his tube feed is now running at 15mL/hour of Tolerex and we are doing 12 hours of TPN overnight. This is unfortunate, as I thought perhaps we were on our way to getting off the TPN. But it just goes to show how dependent we really are on Noah's central line. The other issue we are dealing with again, despite the Omegaven lipids that were started, is that Noah's triglycerides are sky high. So we are now running lipids every other night rather than every night to see if that will help bring them back down. This means we can't get as many calories into him, but hopefully it will be easier on his body. We haven't had this issue in months, so I don't know what is going on. Hopefully this is not a sign of something brewing.

Happy New Year!

We are starting out the new year on a more positive note. After a frustrating 6 day stay, Noah was discharged this afternoon. The repair kit finally came yesterday, and so last night his line was repaired quite easily. We now have to wait until tomorrow morning for the glue to set before we can try to use it. So we will go back to the day unit tomorrow and try to unclot his line with TPA. Because it has now been clotted almost a week, there is little chance that we will be able to get it working again, but we will give it a try. If we can't get it working, our surgeon will pull the line out tomorrow and we will continue to use the PICC line at home while this site heals. He would then have to go back to the OR for a new line sometime in the next few weeks.

Thanks Hilda and Heather for spending part of the evening with us yesterday and for the goodies! It made New Years Eve much more bearable!!