Saturday, December 29, 2007
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!!!
Thursday, December 27, 2007
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.
Tuesday, December 18, 2007
Sunday, December 16, 2007
What a sweetheart!
Friday, December 14, 2007
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!!
Wednesday, December 12, 2007
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!!
Monday, December 10, 2007
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.
Saturday, December 08, 2007
Wednesday, December 05, 2007
Sunday, December 02, 2007
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/
Wednesday, November 28, 2007
Sunday, November 25, 2007
We are so tired of hospital life and feeling pretty frustrated these days. Thankfully Kailyn & Joshua were able to go to Mom & Dad's for the long weekend. Brad is at the hospital tonight, so I am able to sleep in my own bed tonight. How wonderful it is to be at home, even if it is only for a few hours. When I drove up to our house today, I saw the snowmen that the kids built this past week when we had our first good snowfall. It brought tears to my eyes...a reminder of all the simple things I am missing out on at home.
Tuesday, November 20, 2007
Friday, November 16, 2007
However, we recieved some difficult news yesterday from the Metabolics doctor. They have diagnosed Noah with a metabolic disease, based on a metabolic workup that was done. The final bloodtest to confirm the diagnoses will take a couple of weeks, and so we won't know for sure for a while, but the doctors are quite certain from the high level of MPS found in Noah's urine that he has Sanfilippo Syndrome (MPS Type IIID). We are only just learning what this means, but basically Noah's body is missing an essential enzyme that breaks down a complex body sugar called heparan sulfate. The sugar slowly builds up in the cells over time, causing neurological regression and death usually in the teen years. It is a degenerative brain disease with no cure. So even if Noah is able to fight through all the health problems his chromosome deletion has caused and even if through hard work he learns to walk, talk and eat, there is this disease lurking in the background waiting to take it all away. This is so discouraging and just so very sad. I'm pretty overwhelmed by it all right now and it is so hard to try to look at the short term and not think too far ahead. Sometimes I think it's better not to know. And so I must ask "why God?". Does Noah not have enough to deal with? Does he really need a double whammy? It seems that we just manage to make it through a crisis, when another one is right in front of us. I know I will never understand these things and the future looks even more frightening right now.
Tuesday, November 13, 2007
The bone scan results are back, and it looks like osteomyelitis again. The infection has seeded in 2 places: one of Noah's lower ribs, and his T10 vertebrae. This doesn't really change to much as far as treatment, except perhaps how long ID decides we need to treat for. Noah's platelets have draopped again today and he's been having nosebleeds. His hemoglobin is also back on its way down. But for now, we are still holding off on more transfusions. Hopefully his body with begin to rebuild once this Ampho really starts taking effect. His kidneys are looking ok, and we are doing what we can do with extra fluids and sodium to protect them. ID is still quite concerned with the combination of drugs he is on, but they are undecided about how many more days of Ampho B we will do.
We've also come up with a new plan regarding Noah's line care. He now has his own protocol written up in his chart. No more alcohol swabs, but rather chlorhexidine on his line. An each time his line is accessed at all, the nurses have to glove, gown and mask, and use sterile technique. It may seem a bit extreme and it makes a whole lot more work, but we are hoping to prevent any new hospital bugs from making their home in Noah's line.
Monday, November 12, 2007
Noah started the Ampho B (antifungal) early Saturday morning. It's nasty stuff that takes 5-6 hours once a day to be infused. It makes Noah itchy, gives him a low temp and basically just makes him miserable. So far his kidneys are handling it ok and they are being watched closely. His platelets and hemoglobin have been dropping and he's been requiring more oxygen, so yesterday evening he recieved a blood transfusion. His hemoglobin is looking better today, however his platelets continue to drop, so he may need another one in the next day or two.
Thank you for all your thoughts and prayers. Please continue to pray for wisdom to make the best decisions for Noah.
Friday, November 09, 2007
Noah will be started on Amphotericin (an antifungal medication), however the drug is very very harsh and can have bad side effects, including toxicity to the kidneys. He is at even greater risk as he still needs the antibiotics (Vanco & Gent) to cover the Strep bugs. These alone are hard on the kidneys. However, we have no other options at this point.
Wednesday, November 07, 2007
Hoping the fevers are just viral. When his fever is down, he is actually in pretty good spirits despite it all! Thanks for all your prayers, visits and food!!
Monday, November 05, 2007
Saturday, November 03, 2007
Friday, November 02, 2007
Please pray that this will be a short stay for Noah and Nichole.
Wednesday, October 31, 2007
Tuesday, October 30, 2007
Monday, October 22, 2007
I heard a song last week that summed up so beautifully the way I have been feeling. Somehow we feel that bad things only happen to other people and we have this feeling of entitlement to a happy, healthy life. But then the rain comes, and we are forced to make a choice. It may not be an easy choice, and we may have to choose over and over each day. We can choose to live a bitter, resentful life, hating the clouds, the wet, the cold...Or we can choose to embrace the rain...be thankful for the rain...love the rain. For we know that in the grand scheme of things, what's a little rain??
I can count a million times
Tuesday, October 16, 2007
Sunday, October 14, 2007
And so our precarious life continues...
"Whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me. For he who is least among you all--he is the greatest."
Tuesday, October 09, 2007
During my pregnancy with Noah, we got a kitten to give us all something to focus on, other than the dark days of waiting. After Noah was born, and we were spending all our time in NICU, our neighbors took the kitten in and loved it so well that it refused to come home again. We told the kids that someday when things settled down we would get another one. Well, Grandma & Grandpa had some kittens on the farm...the kids were in love...and life is never going to settle down...so it was time. I have to admit, she is quite adorable. And pets are supposed to be therapeutic, right?
Friday, October 05, 2007
Welcome baby boy! What better way to bring in the thanksgiving weekend! On Friday, October 5th, after a very long wait, we welcomed a new nephew/cousin, Judah Daniel. At 9lbs 4oz, he is a big, healthy boy! Congratulations to Joel & Laura. We praise God for his safe arrival and look forward to meeting him in person! To see more pictures, take a peek at their website:
On this Thanksgiving we are so thankful for family and friends. We thank God that we can be at home. We are thankful for Children's Hospital and the wonderful staff who love our son. We are thankful for livegiving TPN, lines, tubes, oxygen, medications, and for a healthcare system that allows us to focus on Noah, rather than bills, insurance issues and bankruptcy. And most of all we are thankful for Noah's smiles, happy disposition and fighting spirit through it all!
And don't ever doubt this truth
But I know he'll make it through
Thursday, October 04, 2007
Our ID doctor today told us that there is a 50% chance of this Staph infection reoccurring in this line. Not great odds, but hopefully we will get a bit more time out of this line yet before we will be forced to change it.
Wednesday, October 03, 2007
Our team meeting on Monday went well. It was decided that we will try to save this line as long as possible since we now have negative cultures and our one lumen is working well. And the general conclusion from everyone was that Noah is line & TPN dependant for the present time. The risks and complications of having the line are high, but when you see the energy, the development, the weight gain and the increased comfort level for Noah on TPN, it's difficult to justify going back to just tube feeding. Without his line, Noah likely wouldn't have much of a chance at life if he can't absorb nutrients, fat and sugar properly. So even though the line complications could potentially end his line too, it still seems like his best chance. We've never really figured out exactly what is wrong with Noah's gut and why we can't make it work normally. All the tests and xrays we've done have come back normal. So on paper, it looks like there is absolutely no problems, and yet things just don't work right.
So, hopefully the news will be good tomorrow and we will be out of hospital and home for Thanksgiving. Thank you to all for your continued prayers and support. Even though we may not say it enough, we appreciate the visits, the coffees and treats. These gestures mean so much to us!
Friday, September 28, 2007
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.
Tuesday, September 25, 2007
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.
Saturday, September 22, 2007
Friday, September 21, 2007
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"
Wednesday, September 19, 2007
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.
Friday, September 14, 2007
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.
Thursday, September 13, 2007
Monday, September 10, 2007
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.
Sunday, September 09, 2007
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.
Tuesday, September 04, 2007
Friday, August 31, 2007
I was sure by now that You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen" and it's still raining
As the thunder rolls I barely hear You whisper through the rain
"I'm with you"
And as your mercy falls I raise my hand and praise the God who gives
And takes away
I'll praise you in this storm and I will lift my hands
For You are who You are no matter where I am
Every tear I've cried You hold in your hand
You never left my side, and though my heart is torn
I will praise You in this storm
I remember when I stumbled in the wind
You heard my cry, You raised me up again
My strength is almost gone, how can I carry on
If I can't find You?
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
So for the first time, we were actually able to go home from the ER! All the nurses were as shocked as I was. I told the doctor he was going to have to help me find the front door as we had never actually gone out of it before!
During the night, Noah's temp was still high, but this morning he is looking much better and just running a low grade fever. So hopefully this is all just a nasty virus that will pass quickly. We are praying that this line will last us one more week!! We desperately need this one more week at home!!
Wednesday, August 29, 2007
Now we are back home, and already gearing up for Noah's next hospital stay. It seems that time these days is measured based on Noah's admissions. We are now 2 weeks post-hospital, and one week to go before we go back in. Noah's surgery is scheduled for Thursday, September 6th at 1:15pm to have his tunneled line placed. We don't know how long he will be in this time. Hopefully it will be a short stay. So I am frantically getting the kids ready for school, and making sure everything is in place for when I will once again be gone. I am really dreading it, but it will be nice to be rid of this femoral line.
Monday, August 20, 2007
Thursday, August 16, 2007
I've included some pictures of our last few days. Some of Bison Transport family day at the Winnipeg Stadium (Noah was not impressed with the dressed up Bomber characters), and our afternoon visiting Aunt Bertha in Steinbach.