Lines!!!

It has been a very frustrating few days. It seems that Noah thinks New Years is overrated, and prefers to spend them in hospital. On Thursday, Noah managed to pull out his GJ tube, balloon and all. He became so frantic with pain and got a good yank on his central line. There was a weak spot in the line, and with that yank he managed to put a hole in it. Of course, this all happens when we are 3 hours away from the hospital out at Brad's parents place. So we headed back to the city. By the time we got Noah to the ER, he looked terrible. His temp was 38.5C, he was beginning to have some respiratory distress and his blood sugar had plummeted to a frightening 1.6. Noah was given a ventolin mask and an IV was quickly started to rehydrate him and get some sugar into him. He started looking much better after that. Blood cultures were also sent and he was started on IV antibiotics in case he had developed another infection. Because of the worry of IV access and second IV was started as a backup in his scalp. Poor guy now has a really bad shave job on one side of his head!

By morning, yesterday, we had already lost both IV's and the search for a central line repair kit began. Apparently the line Noah has is an obscure size, so no one in Winnipeg has a repair kit the right size. Two were found in Canada and are being flown in to Children's Hospital here. But until someone could try to repair his line, Noah was in dire need of IV access. So yesterday he was taken to the OR and our surgeon inserted a PICC (peripherally inserted central catheter) in his right arm. This will get us through until we get the line sorted out. We thought he may have to go to PICU overnight, but Noah did great in recovery room and was able to go back to the ward yesterday evening. He also had a new GJ tube inserted yesterday by radiology. Needless to say, when we finally got back to his room we were both exhausted. Noah slept 17 hours straight, barely batting an eye when the nurses bugged him!

And what does the little monkey decide to do today? He pulls out his GJ tube once again!! So this afternoon it was back to floroscopy to have the tube reinserted one more time! And as we were there, his central line completely fell apart into 2 pieces. It has been beyond frustrating and one of the rare times I have actually felt like just giving up. And yet, somehow, by the grace of God, we find the strength to get through each hour of each day. We pick ourselves up and move on to the next hurdle. Now it is just a waiting game, as we wait for the repair kit to arrive. It was supposed to come today, but we are still waiting. So we are praying...praying that the kit arrives...praying that the line will be repairable...praying that we will be able to get the line unclotted...praying for negative cultures...praying that this whole mess can be sorted out quickly.

The good news... Noah's Ampho is DONE!!!

Thanks for Christmas

Thanks to all of those who prayed that Noah could stay out of the hospital over Christmas. We had a great time with family and friends. Christmas is now over and so is Noah's escape from the hospital. He pulled out his GJ Tube today and Nichole also discovered a small crack in his central line. Either of these would have earned him a return trip to the hospital, but Noah managed to accomplish both on the same day. May as well fix them during one visit rather than two. Although frustrating to have to return to the hospital routine, we are grateful for the opportunity to have Christmas on the outside.

Nichole will spend her birthday in the hospital for the second year in a row, but we are just happy for the blessings we do have. Please continue to pray for us and enjoy the blessings we all have each day.

Brad

Santa

We braved the mall on Monday evening to take the kids to see Santa. I thought Noah might freak out, but he was thrilled and, of course, tried to grab his glasses. He did manage to get a nice handful of Santa's beard and I had to pry Noah's hand loose, just avoiding a major catastrophe!! The Christmas countdown is on and the kids can hardly wait!! Just praying that Noah will stay relatively healthy. He's still got a cold brewing with the odd low fever. Seems to be his "norm" these days.

Noah's appointment Monday morning went well. All seems relatively stable right now. We are holding his feeds at 26cc/hr, along with the supplemental lipids. We are still needing to add the extra potassium and sodium chloride into his Tolerex to balance his electrolytes. He will have his bloodwork repeated again on Thursday. He has stopped gaining weight, but he's been maintaining since we got home at 15lbs 12oz (7150gms). Hopefully soon we will be able to work the feeds up again and start nudging up his weight.

The Ampho is still a miserable experience everytime, but we are counting down the treatments. Only 5 more to go!!

Mattea Joy

On December 5th, our good friends Kim & Ernie had their 4th baby. After 3 boys, they now have their baby girl. Now that both Noah and Mattea are out of hospital, we were able to get together last night. Kailyn is especially excited to have another girl around.
What a sweetheart!

COLD!!!

Minus 40 today with the wind chill! And yet, we have this amazing sunshine sparkling on the new fallen snow. Although cold, Manitoba really is beautiful in the winter! Looking forward to a white Christmas!
Noah is doing well, other than his usual upper respiratory stuff. We premedicated before the Ampho today and it went a bit better. Still miserable, but at least his temp didn't climp quite so high. He WAS up to his full tube feed rate (33mL/hr), but the last few days we have been having to decrease it, as he is losing too much bile through his gtube drain. So we are at 26mL/hr now and his gut seems to be settling out. So we will sit tight at this rate for now. If we have to go down anymore on his rate, we will have to restart the basics TPN. We'll see what his tummy decides to do over the next few days. Noah had bloodwork and TPN clinic yesterday and despite all this, his electrolytes aren't looking too bad. His kidneys are also holding their own. He is scheduled for bloodwork again on Monday to continue to watch things closely with his gut not behaving quite right.
The good news is that yesterday Noah got his portable Intermate to run his D5W during the day. It looks like a baby bottle attached to him. So with that and his portable feeding pump, he is now pole free during the daytime!! It makes life a whole lot easier! Despite the cold, today I was able to take him out to Superstore for the first time in a long time! He loved the outing!!

Can I Actually Unpack???

Other than some cruddy cold symptoms, Noah has stopped having the low grade fevers, so it looks like I may actually be able to unpack some bags for a while. His last day of antibiotics is today, so we will see what happens. We will restart the oral Septra tomorrow. However, again today he had a reaction to the Amphotericin with screaming, spiking fever, rigors and mottling. I talked to the pharmacist today, who suggested that we try premedicating with Tylenol and Benadryl before the next dose on Friday. Hopefully that will help his comfort level. He still has 2 weeks of the Ampho left to go. Tomorrow he will have all his bloodwork done and we have TPN clinic as well, so we will see how his electrolytes and his kidneys are doing with all of this.

In the midst of all this, I am trying to get our Christmas preparations done, so things are quite busy. Can't complain though...how wonderful it is to just be home and sit down in front of the computer with a cup of coffee...to tuck the kids in bed at night... to sleep in my own bed!! A huge thank you to all of you who have provided us with meals and goodies. You don't know what a lifesaver that has been!

I've added a couple of pictures of Noah in hospital with his home care nurses, Doris and Nicole, who we love! I don't know what we'd do without them!!

Officially Home...For Now

Well, Noah was looking well this morning, just running his usual low grade fever (38C) that he's had all weekend, so he was officially discharged over the phone. 3 hours later, what does he decide to do?? He spikes to 39.5C and has been sleeping all day. I was running his Amphoterrible at the time, so I'm hoping it was just a bit of a reaction, although he hasn't had a problem with the Ampho for a while now. So now we are just sitting tight, waiting to see what he will do. We did manage to get the Christmas tree up yesterday, and I have done some internet Christmas shopping. But there is still so much we want to do in the next couple of weeks. So I'm just holding my breath and praying that we will not have to go back in. What's even worse is if we had gone back this morning, we could have just gone straight back to his bed on the ward. But if we go in now, we have to go through the ER again. Uggg!!
The good news is that Noah is now completely off the TPN basics!! His tubefeed is now running at 30mL/hr and he is tolerating it quite well. So now he is just on the TPN lipids that run over 10 hours at night to get in his fat requirements. Our surgeon has decided to try keeping his central line running all the time with D5W (dextrose and water solution) rather than locking it with Heparin when he is not on the lipids to hopefully prevent clots from forming. So right now he is hooked to the pole and pumps 24hrs/day, but soon we will have a portable Infusemate to use during the day so that he will be more portable.

Home On Pass

Noah is out of the hospital this weekend. He hasn't been officially discharged because he is still spiking fevers. He is on antibiotics and the antifungal still, so he is well covered. His latest blood cultures are negative. Everyone is hoping this is just a virus. It felt strange taking him home when he is still not well, and I'm still quite worried, but since they weren't doing anything for him that we couldn't do at home, we decided to try it and see what he does. If he is still spiking on Monday, we will have to go back in and they will draw new cultures and perhaps broaden his antibiotic coverage. But if all his well by Monday, then he will be officially discharged.

Who Mentioned the "H" Word??

OK, someone around here must have mentioned the "h" word to Noah!! I think he does this every single time we start making plans to go home!! He has started spiking fevers again last night and all day today. He's been pretty miserable and not sleeping much at nights. His nose is very cruddy and so hopefully it is just a virus. But we did new blood cultures this morning, so again we wait...praying that our line is ok!! If the cultures come back negative and Noah's fevers settle, then the plan is for discharge on Friday. We are still tying up all the loose ends here. The tube feeds are going pretty well and Noah is already up to 19mL/hour. The goal is 33, so we aren't that far away. If we can get there, then we can get rid of the TPN basics, and just run lipids through his central line. So far the Tolerex is living up to it's name!!

Day 32

Things are looking pretty good here. Noah did have a fever spike on Saturday, but since then he's been stable again, so hopefully it was nothing. Things are in the works to try and spring Noah out of here hopefully by the end of this next week. We started some continuous tube feeds yesterday with a formula called Tolerex. We tried this formula about a year ago, and it went well until we tried adding the oil component. So we decided to try the formula again without the oil, the goal being to get rid of his basics (the sugar part of his TPN) and just run lipids through his central line. This would hopefully put him at lower risk of developing line infections if we don't have glucose running through his line. So far he is up to 9mLs an hour through his GJ tube and he's having a bit more retching, but overall, tolerating it not too badly.

Tomorrow Noah will also be able to start recieving his Ampho 3 times a week rather than everyday. If his electrolytes remain stable with this change then we should be able to get him on the home IV program and finish the ampho and antibiotics at home. At the very least, Noah should be able to start getting home on passes in the next few days.

Kailyn & Joshua spent the day at the hospital yesterday and had a great time running endlessly in the hospital tunnels. They spent over an hour running in circles. I could barely drag them back to Noah's room! Who knew how much entertainment hospital tunnels could provide!

Again, thank you to all who have dropped food off both at the hospital and at home. We appreciate it so much! And thank you all for your continued prayers. Another friend of ours from my TPN support group has passed away this week. Please keep Zach's family in your prayers as well. http://www.caringbridge.org/wi/zachsam/