Just As We Were Settling In...

I am missing Noah's line today...

When I picked Noah up out of bed this morning, his GJ tube was completely out. Usually we would have just run fluids through his line until we could get an appointment with radiology on Monday to have it put back in. But we have no line...

Which means it's off to the ER for some fluids, and hopefully to find someone willing to put the tube back in on a Sunday. Otherwise we will be stuck there until tomorrow...

Dentist Visit

We saw Noah's pediatric dentist this morning. I was concerned about some dark spots in many of his teeth. They are just calcium spots and of no worry. He does have at least one tooth (top front) that will have to be pulled whenever his palate surgery is done. It is growing backwards in front of another tooth and doing no good. As for the grinding...well, his advice was to get myself a good bottle of scotch! There is some wear on his teeth, but overall, the grinding causes no harm.

After his appt, we stopped to pick up some stocking stuffers as I've been feeling the need to get prepared for Christmas while Noah is still at home. Noah very quickly began to meltdown, (these sleep issues make for an irritable boy) so not much was accomplished. With Kailyn & Joshua at Grandma & Grandpa's, hopefully I can get more done this weekend when we have some respite for Noah.

Medically, there is alot going on right now, and we may not be home as long as I had hoped. Life just doesn't seem to settle down around here. Because of a strange-looking xray on Monday when we were checking Noah's tube placement before discharge, some of our doctors have been reviewing Noah's previous abdominal scans/bariums. His bariums have all been normal, however the xrays from this year look different. They are thinking that Noah's anatomy looks unusual and changed from last year. Still waiting to hear more on what the plan is from here.

Happy Thanksgiving to our US friends!!

Settling In

I'm feeling a bit of post-inpatient blues...sounds strange to most of you I'm sure. Yes, we are content, and thankful to be through another crisis. But those of you who have "been there" know what I mean. The switch from one world to another can be tough, especially the long stays, after being isolated and in crisis mode for weeks. It takes me some time to emotionally work through all that has happened. Home is a good thing of course... It's just an adjustment time... for all of us.

Bedtime and naptime are the big adjustments for Noah. After being used to falling asleep by my side with the hospital action, he finds it very difficult to go to sleep here at home. Hoping to settle into some sort of routine again.

We have started using Glycopyrrolate (Robinul) twice a day for Noah's secretions and we've seen big changes. He still gets some secretions, so we may have to tweak the dose a bit, but he is no longer coughing and choking on them all evening as he had been. This is a huge improvement for him.

On Monday, Noah's weight was 6.7Kg (14lbs 12oz) on our home scale, so that is the weight we are working from. We have alot of ground to cover to get him back to his 7.2Kg weight before this last hospital stay. Wish I could fatten him up with some Christmas goodies!

Home

It is official this time...we are home!

A wee bit of weight gain today and bloodwork looked ok, so Noah has been officially kicked out. Hopefully we have found the right combination of saline flushes and extra potassium to keep him stable without a line. It is hard to believe we have come home without a central line. It all feels a bit surreal right now...no TPN to hook up...no fluids to run...no IV antibiotics... This will take some getting used to. Depending completely on his gut is still very frightening for me. Only time will tell if this can be a long term solution, but we will enjoy any time we get without a line to complicate our lives and give us a bit more freedom. This will give Noah's body time to completely heal and not be knocked down again in a few weeks with another line infection. Who would have thought a few months ago that this would even be possible?? Even a week ago I doubted that we would ever get Noah home without a line.

It is definately a day to celebrate God's goodness and faithfulness.

Halloween

Thought I'd post Noah's hospital Halloween pictures. Considering how crappy he was feeling that day, he still looks super cute! Unfortunately, Brad didn't take pictures of the other kids...sigh.

Thanks to our nurse, Anna, for the pictures!

Day 28 ~ Out On Pass!

I am writing this from the comfort of home. So thankful to be outside the confines of those hospital walls, even if just for the weekend.

Noah has a pass until early Monday morning, when we will go back for bloodwork/weight etc. His lytes have still been an issue, and I am praying the weekend goes well. We have increased the concentration of the saline flushes to help bring up his sodium and chloride, as yesterday they were down again. His potassium is now holding steady. The watery stools seem to have resolved, however, now he is draining more from his stomach, which worries me. It seems if we are either continuously losing electrolytes from one end or another. So this weekend will be the test to see if we can keep him hydrated and balanced at home. His weight is still an issue, and he is down again. But his energy level and mood has improved, and yesterday he was finally bum scooting down the hospital hallways!

Thank you to all who have been helping keep our freezer stocked. You have blessed us more than you will ever know!

Day 26

The "D" word is finally being discussed! The plan is for a weekend pass, and then if bloodwork looks good on Monday, then he will be discharged. Hooray!!

We are still struggling with weight and watery stools, but it looks as if they will be ongoing issues that we can work on at home. We are doing saline flushes into his GJ every 2 hours during the day and have added potassium to his tube feeds. His IV has been out for 24 hours now, and so far his electrolytes are looking good. So hopefully we have found the right combination of fluids and lytes to keep him stable without a line.

An ultrasound yesterday showed his liver and spleen are still enlarged, however no changes for the worse. His INR and PT (blood coagulation tests) are still high so we are treating with Vitamin K. These are all things that will be followed as outpatient. And no plans for a surgical jejunostomy (J-tube) anytime soon. More discussion as to the benefits of this needs to happen before any decision is made.

Hopefully the next update will be from home this weekend!

Day 23

The days continue to drag on here. No huge changes to write about. Still struggling with the feeds. The watery stools continue and we haven't been able to move up on the Neocate. At least the downward weight loss spiral seems to have stopped and he is settling in around 6.7kg. His energy level is still low (no weight bearing or bum scooting down the halls) and I really hope all that energy wasn't coming from his TPN. He seems to be having these intermittent pains, which I am assuming are gut related. Praying we can figure out a way to make him comfortable all the time and not just most of the time.

We are trying something new to get the essential fatty acids into Noah. Apparently, in some people, they can be absorbed through the skin in the same way that we absorb Vitamin D from the sun. So every evening, we will be lubing Noah up with 5mL of Sunflower oil (which is actually alot, when you try to rub that much oil into Noah's tiny body). It will be a few weeks of trial before we will know if this will make a difference or not, but if it does, what a simple solution this would be for part of Noah's nutritional needs.

The IV antibiotics finished yesterday and today we switched Noah's antifungal to GJ rather than IV. Still have to figure out a way to get all Noah's fluid requirements sorted out to be able to get rid of the IV completely and get him home.

Day 20

Yesterday was the G-tube trial and it was miserable. I was secretly hoping Noah would shock us all and tolerate stomach feeds, but I wasn't expecting it to go well. It was even worse than I had imagined, and he was absolutely in agony with retching, crying and choking on secretions. We had to stop after a couple of hours as his lungs started sounding crappy and the risk of aspiration was too high. Radiology put his GJ tube back in and we are back to where we began. At least we now have an answer as to what he can tolerate and we can cross that one off our list.

As far as where we go from here, I'm not exactly sure yet. We may be looking at another surgery, but that is still up for discussion. Noah still needs another few days of IV antibiotics and another week or so of the antifungal by IV, so no plans for home yet. He is also still having issues with the feeds. We are slowly going up on the Neocate, but the loose, watery stools are still happening, and as long as he has that, he requires the extra IV fluids and potassium to keep his lytes stable. He is looking good though, and was even able to go to playroom this morning for the first time this admission.

And so we continue to sit and wait this out, praying that this will all be worth it in the end and we will be able to go home with no central line, hopefully reducing our hospital admissions. So, although this admission seems incredibly long and never ending, I have to focus on the bigger picture here and pray that we are doing the best thing for Noah.

Day 18

Things are looking a bit brighter this morning. Yesterday we started adding a very small amount of Neocate into Noah's formula and he has tolerated it fairly well. Still having a few watery stools, but I am hopeful that it will settle. He is still fever free and starting to sit up and play for short periods. Seeing those beautiful smiles again makes my heart soar and I am so thankful that things seem to be progressing in the right direction.

The next step this week is to give the G-tube (stomach) feeding a try. The GJ tube holds Noah's pylorus open, causing lots of bile to back up into Noah's stomach which we continuously drain off. Without the central line for hydration, the concern is that we will continue to have electrolyte/dehydration issues with so much drainage coming from Noah's stomach. If we could eliminate this, that would be the ideal situation. So in the next couple of days, we will take out the GJ tube, put in a G tube and try some stomach feeds. I do not think that this will go well and I am concerned about retching and aspiration issues. But we haven't tried stomach feeds in a long time, so we need to give it a try to at least rule it out. If it doesn't go well, we may look at a surgical option, such as creating a separate stoma for a J-tube.

Day 15

It's hard to believe how slowly 2 weeks can pass, and it feels as if we've been inpatient for much longer. Still no specific end in sight. The gallium scan came back clear, which is good, but that means there is no good explanation for the fevers. However it has been almost 48 hrs now since the last fever spike, so praying we have seen the last of them. That is the good news.

Now for the bad...we tried adding a microlipid (fat source) to Noah's feeds yesterday, which I was so hopeful about, but it was miserable. Diarrhea and abdominal cramps all night last night made for a night of very little sleep for anyone. It was very obvious that his gut just won't accept this type of fat. By this morning he was looking dry from all the water loss stools, so he needed a couple of fluid boluses to get him back on track. So that brings us back to square one again. This coming week, we will try adding the Neocate again in an effort to get his fat requirement in. His weight continues to drop and I don't know how much more he is able to lose. It seems as there is almost nothing left to him, and his energy level is so low that sitting up for a few minutes is enough to wipe him out for the next couple of hours. He is almost a kilogram less than before this hospital stay, and it is so frustrating to watch him shed all those grams we worked so hard to gain. I get more and more concerned with how we are going to manage without our central line. 

Brad is doing night duty at the hospital tonight and I am looking forward to a decent night's sleep. Praying things will look better once I am more rested. 

Day 12

We are slowly starting to see glimpses of Noah again, as he is spending more time awake and starting to sit up for short periods of time. Fevers are still persisting, so a gallium scan is scheduled for tomorrow morning. Praying this will give us an answer as to what is going on. His blood cultures continue to come back negative and his platelets have returned to normal. GJ feeds are going well, except for an excessive amount of secretions. He is back to his full feeds, so now we are trying to push his gut further to get in the calories he was taking by the lipids in his line. In the next day or two we will try adding some fat to his feeds (what type of fat is still us for debate). Overall, we are heading in the right direction, but still lots of work to be done.

Leaning on our Heavenly Father for patience and daily strength.

Day 10

Day 10 today...it's been very long days. Noah's central line was removed on Thursday. The line actually broke that morning, so it was good timing that it came out. The line tip was sent for culture and came back growing pseudomonous. So antibiotics were restarted along with the antifungal. On Friday Noah recieved a blood transfusion for low hemoglobin, which has given him a nice boost. We did manage to dress him up in his Tigger costume for Halloween and the med students came with candy for all the kids in the evening. Of course, I had to help Noah with his candy!

He is tolerating is GJ feeds again, and we are almost back to his full feeds. However, he continues to spike fevers, usually a couple of times a day. Still waiting on the most recent blood cultures, but so far they are negative. The question is whether there may be another possible source of infection in his body. If the fevers don't stop soon, we will likely do a gallium scan. He is still requiring a bit of oxygen, but is slowly starting to look better and spending more periods awake. But he is still so far from his bright, energetic self. This slow recovery is unusual for him, but a fungal infection can be tough to beat.

For now it's a "wait and see" game. Wait and see what the fevers do...wait and see how the feeds go... There are still many unknowns and differing opinions, but the one thing we all agree on is that we need to try and keep Noah line free. The risks of an infection ending Noah's life is very high and right now, this risk outweighs the benefits of TPN. It's a frightening step, and no one can predict how it will turn out, but we have no choice but to try. The next plan of action is to try and figure out a way to get enough nutrition into Noah without having to put another line back in. He has been wasting away these past days and any fat he did have on his tiny body is gone. It's tough to fight without proper nutrition and this has taken quite a toll on him.

I feel like we are in between a rock and a hard place right now with no great solutions. Praying we can make the best choices to give Noah the best quality of life that we can.

I miss my Noah.