Tuesday, June 30, 2009

Toronto Day 29

A good day with slow and steady progress. Noah had a bit of a wierd night, needing 5 litres of oxygen through his CPAP. But we are down to .5 litres during the day now through nasal prongs. Although, a rough afternoon with the lungs again...ventolin every half hour for a few hours and again SO much secretions. It seems that those lungs do really well in the morning after the night of CPAP, but by afternoon he starts to struggle a bit. So thankful for the CPAP to give his lungs a rest each night. He is still a bit fluid overloaded which is part of the lung issue, so more lasix today to try and get him fluid balanced. The team is still quite confused as to how Noah's respiratory status seems so closely linked with his tummy off suction and feeds started. Oh yes, did I mention that we actually started feeds today?? Just a trickle of 2 mls an hour through the J tube, with his G tube open to vent/drain, but so far so good. And the NPO sign is off our door! Baby steps...but it's something. I expressed my apprehension about pushing feeds again, and I was reassured that we wouldn't be "pushing", but rather Noah would tell us what to do. And they have no intention of taking away the TPN if Noah can't gain weight on whatever amount of formula we manage to get into him. Makes me feel better as last time we pushed Noah so hard, and went so downhill. I refuse to lose all the ground we have made with his weight.

Morphine is almost weaned...by tomorrow he should be off the infusion. This will be nice as it means he can be off the monitors too. Still very low energy, but in time that will come.

Brad and the kids have arrived safe and sound...it is very busy now, but so good to be together again. A month is just far too long to be apart. Noah was quite thrilled to see everyone, although he didn't seem to sure of Joshua with his new haircut (even I can't get over how different he looks!). Thank you, Alison for the welcome packages for the kids, and for the gift cards you brought last week...you have been so good to our family.

Monday, June 29, 2009

Toronto Day 28

We seem to have made it over the hump and Noah was back today. Much less pain and many more smiles. We got him sitting up for short periods and he is looking very well. Still lots of respiratory stuff with wheezing and secretions, (lots of ventolin, suctioning and a couple doses of lasix) but we were able to move out of the constant care room and back into our old room. CCRT continued to follow him closely today, but we are all much happier with the way he looks. We took his NG tube off suction today, and again had a huge increase in secretions and suctioning. This has the team scratching their heads, however, we decided to leave him off suction and see if things settle down. Tomorrow the plan of the day is to start a trickle of feed into his J tube.

Tomorrow it will be 4 weeks since we came. The plan was that 4 weeks was the longest we would be here. Now it seems as if we are just beginning. The bright spot is that Brad and the kids are on their way and at least we will be together.

Sunday, June 28, 2009

Toronto Day 27

Post-op day 3 and recovery is slow going. Still alot of pain for Noah, requiring his morphine infusion plus bolus doses. Still some respiratory issues, and the ICU team (CCRT) is following Noah closely, coming up 2 or 3 times a day to assess him. Lots of secretions and wheezing today requiring lots of suctioning and ventolin. No one is in any rush to get him out of the monitored room at this point, so we are there for another night. I think Noah's CPAP has been our saving grace, allowing those lungs to recoup at night and getting him through these first post-op days. He spent alot more time awake today and I even got a couple of smiles.

The team is hoping to get Noah off the constant need for suctioning his stomach now that his stomach is able to drain. Today we tried taking Noah off the suction to his NG tube, however he was miserable with much more secretions. Back on suction he went for now and we will try again tomorrow.

Brad went home yesterday and will return with the kids tomorrow evening. Can't wait for everyone to be together!!

Saturday, June 27, 2009

Toronto Day 26

A bit of a rocky start to the day with Noah having had a rough night. Pain management has been our issue of the day. It's this fine line of controlling Noah's pain, and yet not sedating him to the point of respiratory problems. After increasing his morphine infusion again, we seem to have a better handle on things now. The afternoon was much more settled and Noah spent most of it in and out of sleep. He did have a few awake periods...tried to sit up at one point which caused him incredible pain, but when he'd relax he was quite comfortable. The team decided to keep him in the constant care monitored room another night.

The ICU team continued to follow him throughout the day and were quite happy with his progress. His lungs are improving and his last blood gas looked great. Some if his bloodwork is still a bit wacky so we started a potassium phosphate infusion to bring up his levels.

Hoping for a restful night.

Friday, June 26, 2009

Toronto Day 25

A better day today. The night on BiPap was enough to turn Noah's gases around and avoid reintubation. This morning he was taken off the BiPap and has done well all day just on oxygen through nasal prongs. With the respiratory stuff settling down, he was moved out of PICU to the constant care room on the ward. Still running the morphine infusion, but even with that he's quite miserable with fevers on and off during the day. This evening he is looking very settled back on his CPAP, his temp is down, his TPN has been restarted and his kidneys have kicked in again. Praying for a quiet night.

Brad heads back tomorrow, and then him and the kids are coming back Monday evening. Once again our needs have been provided for. West Jet Cares for Kids Program donates flights to families of Ronald McDonald House to help keep families together. So the flights next week are absolutely free. Thank you so much West Jet!!

Happy 7th Birthday Joshua!! We love you so much and wish we were with you today. Can't wait to celebrate with you next week.

Thursday, June 25, 2009

Toronto Day 24

Surgery day...where to even begin...I will see how much my exhausted mind is able to recall...

By 7am we were down in the OR waiting room...Noah finally went in around 8:30am. He was in the OR for 6 hours. During that time I had a couple of visitors which was nice, and then at 10am Brad showed up. Yes...total surprise...a huge thank you to all those involved in getting him here for today. I was very happy to see him and have him here for today.

The actual surgery went well (other than a very difficult intubation) and our surgeon was very pleased. Opthamology got their look at his eyes, which looked fine. A full fundoplication was done, and he was able to take down the old stoma, untwist his stomach with no need to do any resecting of the pyloris. This was definately good news and he now has some working plumbing. He took down alot of old scar tissue and some adhesions to his liver. (Apparently his liver is very large, but is not "sick looking"). He placed a new g-tube and separate j-tube. Then he performed a Ladd's procedure to reposition Noah's malrotated intestines in his abdomen. By 3pm, Noah was brought down to recovery room, and after a bit of effort, they were able to extubate him right away. So the plan was to watch him for 4 hours and send him back up to the constant care room on the ward. But Noah had different plans...he started spiking temps, having some fluid issues, and of course, those pesky lungs began to act up. After a few scares in the recovery room, with some major desats and some visits from the Critical Care Response Team, it was decided to watch him there a bit longer with his CPAP and see if he'd settle. By 10pm he was still working to breathe and his gases were looking progressively worse, so he was admitted to PICU and started on Bi-Pap. I was actually quite happy to get him to PICU as I feel he is alot safer there right now. Between that and his morphine infusion, he is looking more settled, although his gases are still not improving. His chest xray is showing a possible aspiration pneumonia on his right side and a bit of lung collapse. So now it is just a "wait and see" game.

Wednesday, June 24, 2009

Toronto Day 23

A very long day today in hospital prison. Noah was being his usual cruddy self this morning...well on the transplant unit, and with H1N1 flu rampent, this calls for high alert. So, although I tried to convince the nurse that this was "typical Noah stuff", she sent an NPA, which meant Noah was put in isolation. The only thing worse than being in hospital is being in hospital under isolation...especially when my very active boy who is quite used to our little routine of walks and playroom doesn't understand why suddenly we can't leave the room. Plus everyone was getting nervous about the surgery scheduled tomorrow if Noah was actually brewing something. But the rapid viral test came back negative, so isolation was lifted and tomorrow is still a go.

We have also added number 6 and 7 to the list for tomorrow...

6. Opthamology will be taking a look at the back of Noah's eyes (a way to check for metabolic diseases). Thankfully they have agreed to do this while Noah is under anesthesia (for anyone who has seen this done, you will understand why I am glad Noah will be asleep!).

7. A skin biopsy may also be added to the list to test for MPS diseases if metabolics is in agreement. This is still up in the air.

We also discussed Noah's line access a bit more, as I brought up my confusion with what we had heard back home to what we are hearing here. It seems that this is still a question mark. The team explained that the ultrasound cannot determine for sure how accessible those vessels really are, although they did show definate narrowing of his major vessels and some clotting. Further contrast studies would need to be done. But he did not think that it was the very dire picture that we were painted back in December. So it seems that this is all still unclear. Hopefully this surgery will help us decrease Noah's dependency on his line.

Please keep us in your prayers tomorrow. No matter how many times we have done this, it is never easy.

Tuesday, June 23, 2009

Toronto Day 22

Today we were finally able to sit down and have a long talk with the surgeon. He had a cancellation on Thursday, so we have a new OR date of Thursday, probably at 8am. He has the whole day cleared for Noah. This is the detailed plan...

1. Create an incision, take down the old stoma and figure out how to fix his stomach and pylorus (this may involve the removal of part of the stomach and pylorus...a Gastroduodenostomy), and reconnect it to his duodenum. This is the big question mark and will dictate how long Noah will be in the OR for. But he needs some working plumbing if he is ever going to have a chance at feeding.

2. Redo Noah's fundoplication (the wrap around his stomach to keep him from refluxing). He may only be able to do a partial wrap since his stomach is so tiny (and may be made even tinier if he has to remove part of it).

3. Close up the old G tube stoma and create a new G-tube stoma that we will use for venting and draining Noah's stomach (Gastrostomy).

4. Create a separate J tube stoma (Jejunostomy) that will be used for feeding directly into Noah's jejunum. This is something we have wanted for a while, but our surgeon back home has been reluctant to do. But with Noah's failures to GJ feed, Dr Wales feels it is necessary.

5. Possibly take muscle biopsies in the bowel as there are some diseases that cannot be detected on the surface biopsies that were done last time. This will be Dr Wales judgement call depending how things look in there.

It's alot to do all at once, but there is no way to move forward from this point until this all gets done. It's tough to take the leap though, when he looks so good off TPN. There will be a PICU bed available for him after the OR in case they decide not to extubate him right away or if he is unstable in any other way. Otherwise he will go to the constant care monitored room again.

Thank you, Kim, Ernie and family for the care package in the mail...couldn't have come at a better time! Also thank you to Aunt Hilda & Uncle Dennis for the Tim's card, and to Mom & Dad for the Subway card. Those should keep me going for a bit!

Monday, June 22, 2009

Toronto Day 21

Today was a long day spent at the hospital. Still tweaking the TPN...Noah was gaining weight over the weekend, but with the increase in lipids, his triglycerides are now too high. So the lipids have now been stopped altogether, until his level goes back down. And we had to increase the glucose, which means we are slowly losing our hours of freedom. We had to go back to 16 hours of TPN today. This still gives us a full 8 hours line free, but it is tough to give back those wonderful hours off the pump. We also started seeing some blood again from his stomach and his ph was dropping. So we've increased his pantoprazole dose once again.

And we finally have a plan...

Biopsy results today revealed nothing. Although I am told this is good news, (and I figured nothing would show up), a part of me was hoping for something to be revealed. Sometimes a definate answer is better than no answers at all.

So, the new plan is for surgery on Friday. As to what exactly Dr Wales will do...I have some idea, but will get more specific details tomorrow. And after surgery, we are to expect to be here another month or so. In light of this news, we have decided that our family cannot be separated for that long. So we are going to try to get Brad and the kids here. Still working on the financial aspects, as it is not working out to use our airmiles. But I miss them terribly and cannot imagine another month or more without them. Since school is ending, the timing is good. I'm still working on getting my head around settling in here for the long haul and giving up yet another summer. Praying this will all be worth it.

Sunday, June 21, 2009

Toronto Day 20

Today was a much nicer day...hot and muggy! I can't get over how muggy it is here. Never knew that about Toronto. We had a pass once again, and after a nice Fathers Day brunch at RM house, we set out for Riverdale Park.
What a beautiful little gem of a place this is, right in downtown Toronto! A pretty little park along the river. And right in the middle of it is a little farm open to the public (the very original zoo). The best part is that it is absolutely free...yes, Toronto actually offers something for free! Noah loved the animals...

Happy Fathers Day, Brad. We miss you so much...wishing we were all together today. Thank you for being such a wonderfully commited father, despite all the challenges. Love you lots!!
Jamie & Erik, so sorry I'm missing your visit...such bad timing.
I'm happy to put the weekend behind me and get on with things. Tomorrow we need a plan!!

Saturday, June 20, 2009

Toronto Day 19

Very little to blog about today. It was a rainy, gloomy day, so even though Noah had a pass this afternoon, there was little we could do. I am not brave enough to venture on the bus or subway with Noah and the stroller, so we just came back to RM house...did laundry, watched TV...nothing too exciting. We did walk to the mall for a bit during a break in the rain, but it was far too overcrowded with people. Hoping tomorrow is a nicer day.

Friday, June 19, 2009

Toronto Day 18

More physio today...we are trying to pack in as much as we can while we are here and before surgery. My photographer Heidi was still here this morning, so more pictures to enjoy...

We were able to get out this afternoon for a while, which always helps. Heidi has gone back home so it's just Noah and I again. Thank you so much for spending so much time here with us, Heidi. Although we had lost touch over the past few years, we were able to just pick up where we left off and had a really great visit.

Nothing much happening at the hospital. Noah's weight is still an issue. He has still been slowly losing weight since we got here. The team had decreased the glucose in his TPN in order to give us more hours off. (The high glucose content couldn't be given over such a short period of time without running into blood sugar issues). So they have slowly been increasing his lipids to give him more calories. However we are getting to the limit of the amount of lipids they want to give him (too much lipids and we will start running into liver problems). Right now it is a fine line of trying to keep his freedom, and yet still get enough calories in him for growth. As much as we are enjoying Noah's new found freedom from pumps during the day, growth trumps freedom...we have added another hour of TPN back so he is running 13 hours. We may have to add back more if the weight continues to drop.

No biopsy results yet...hopefully Monday will bring results and a plan. The team is trying to negotiate OR time for next Friday, but as of yet, it is not confirmed. (Although we still don't know what exactly the surgery will entail, the plan is to block off about 5 hours.) If we can't get OR time, then we will likely have to go home as our surgeon will be away for a couple of weeks after that. That would mean a return trip back in a few weeks once we have a surgery date. I'm really hoping that surgery can happen while we are already here and settled, with a place to stay.

Thursday, June 18, 2009

Toronto Day 17

It was a good busy day today. Heidi came to stay yesterday evening and it was so nice to have some company to pass the time today. Physio did a session with him in the morning. Heidi went picture crazy and I ended up with a ton of great pictures from his time in the gym. Noah had a great time, and especially enjoyed walking with the bars. He does a great job of walking along the bars all on his own.

In the afternoon, Noah had another gym session with Occupational Therapy. Once again I am amazed at how much they can accomplish in a session. The tire swing was a huge hit...

Wednesday, June 17, 2009

Toronto Day 16

A rainy, dreary day here. Not much going on. Noah had a skeletal survey done this afternoon, which meant x-ray pictures of every bone in his body. This was suggested by metabolics as some diseases can be detected from changes in the bones. Not fun for anyone as it was a long time of holding down body parts while he screamed.

Other than that, the day was quiet with very little to blog about.

Tuesday, June 16, 2009

Toronto Day 15

Can't believe it's been 2 weeks already. Time is certainly starting to drag. The plan was to start some tiny feeds today. But Dr Wales is away, so the surgeon who is covering for him came to have a look at how we could thread a tube into Noah's jejunum. He could not figure out exactly where the 2 holes in the prolapsed stoma are, and even if he were to find them, how to know which hole is which. So the whole idea got canned. I was actually quite relieved to not have to mess around with feeding as I hate to rock the boat with Noah in such a good state. But now it really feels as if we are sitting around, doing nothing at all. I hate this waiting bit.

We went out on a pass this afternoon...went for a walk and enjoyed the beautiful weather. Wandered around the huge Eaton Center mall, but with no money to spend, not much to see. One of my old friends from Kitchener, who came for a visit last week has offered to come stay with me for a couple of nights. She is coming tomorrow night and I am really looking forward to the company.

Monday, June 15, 2009

Toronto Day 14

A long day at the hospital today, with very little happening. Genetics came by to do an assessment and they have some plans of further testing that they would like to do. They also did another literature search and found a new case of 12q(15-21.2) deletion that was reported in 2008. Alot of similarities to Noah...cleft lip/palate, less severe feeding issues than Noah's, small size, developmental delays, and pancreatic insufficiency was reported. So they are recommending testing Noah's pancreatic enzymes to see if this could be an issue for Noah as well (pancreatic insufficiency causes issues with the breakdown of fat...this is something that has never been completely ruled out for Noah).

Tomorrow we are going to start playing with some feeds. We are down to 12 hours on the TPN (just to clarify, Noah is still getting the same amount of TPN that he was before, we just run it at a higher rate and squish it into 12 hours). He is acting quite thirsty (sucking on everything) by the end of his 12 hours off, so we did some bloodwork tonight to check his kidney function and make sure he's not getting too dry without fluids for so long. We won't have those results until tomorrow. Noah has actually lost a bit of weight since we got here, likely because the team decreased the glucose in his TPN, as they don't like to run such high amounts of glucose. We are now slowly increasing the lipids (fat portion) of the TPN instead, but so far no weight gain. So more tweaking still needs to be done.

Disney came to visit today and brought each child a stuffed Mickey. With our love of Disney, this was a highlight. Noah loved Minnie Mouse and kept trying to grab her nose. A nice break in the day.

Noah doing some physio with the cute little walker they found for him. He is actually starting to take steps with the walker and is very proud of himself... I've added some pictures from yesterday as well...

Sunday, June 14, 2009

Toronto Day 13

Today was a better day. At least we didn't wander aimlessly and no more nude bikers. I figured if we were going to spend the day walking, we should at least have a good destination. So we walked all the way to Woodbine Beach Park and Ashbridge Bay. It was pretty ambitious, and took a good hour and a half of brisk walking just to get there, plus alot of walking around the park. So the walk home felt very long and the streetcar looked mighty tempting! But we made it and as always, Noah loved it.
Not exactly sure what this week will bring. The team was talking about perhaps trying some very small feeds into Noah's jejunum. Since we can stick a tube directly into his jejunum, with no pyloric to navigate through, it's pretty easy to do. Although until the biopsy results come back, no one is willing to push much in the way of tube feeds. So it will likely be a pretty quiet week.

Saturday, June 13, 2009

Toronto Day 12

Noah was right back to his perky self today, and since it's the weekend, we were able to have a pass for the day. We literally walked the streets of downtown for hours, without really getting anywhere. It was a very lonely day...not much fun wandering around by ourselves. We wandered through Chinatown and then went to check out Kensington Marketplace. It was not very pleasant...overcrowded with people and we could barely move. Then as we were crossing a street, suddenly we found ourselves smack dab in the middle of a huge group of nude cyclists. Yes, apparently it was world nude bike day or something to that effect. It was not a pretty sight. Sorry, didn't get my camera out for that one!

I am missing my kids so much...I wish they could be here. (Although I am glad they missed the bike spectacle!).

Friday, June 12, 2009

Toronto Day 11


Well, sort of...

Success in that Noah came through this morning with flying colours! No matter how many times we've done this, there's always that moment when my stomach drops and my heart lurches as I hand over my son to the OR nurse. But I felt confident, with Noah in such good health going in, that he would do well. The "before" picture in the OR waiting room...
He did prove difficult to intubate, so he is still having a bit of bleeding from his mouth as they had to manipulate around in there. But he was a dream to extubate. The "after" picture in recovery, doped up with morphine, but still determined not to miss a thing...
He went to the constant care monitored room after recovery, but after a little nap, there was no holding him back. I convinced the nurse to disconnect the monitor a bit so Noah could play. We figured if he could scoot around the room, he must be okay! When Dr Wales came to do his rounds, he had a good chuckle at his patient in the monitored bed. So by evening he had kicked us out and Noah was settled back in his old room. Since he spends the night hooked up to his CPAP and sat monitor, no one was too concerned.
His ear tubes went in without any issues. They found a raging ear infection in one ear so he's on antibiotics for the next few days. Guess that explains why Noah has been pulling alot on his hair by that ear. The scopes showed some interesting findings. They discovered that Noah's stomach is completely diverted or blocked in half. He actually has 2 holes coming out of his stoma. I will try to explain this as best I can...

When they threaded the scope down Noah's esophagus, it went into a very small stomach and then right out of his stoma (the first hole), instead of continuing on into his duodenum. The surgeon said suddenly they saw something blue, weren't sure where they were, and then realized the camera was sticking out the hole, looking at his gown. His fundoplication is also completely unwrapped (we had suspected it was at least partially failed). Then he has a second hole in his stoma that they were able to thread the camera through, which goes into the other side of his stomach and directly into his duodenum. His pyloric is nonexistent (for some reason it has stretched wide open). The stomach tissue looked good though, so the pantoprazole has helped to heal the ulcers.

They then did a scope from Noah's lower half. Despite the strange position of his large intestines, they were able to get the scope through. There were some ulcers in his colon area, but otherwise no obvious findings. Biopsies were taken throughout the intestines and stomach, No skin biopsy was done, as metabolics didn't have all the information from Winnipeg, and weren't ready to commit to that. Oh, and in the midst of it all, Noah seems to have developed an allergy to the regular clear tape they use here. He had a piece on his back and the area is now covered in welts.

So what does all this mean for Noah?? Right now everything hinges on the biopsy results, which will take a week to come back. And I'm praying that they will help shed some light on everything and give us some answers. If the results come back showing a definate malabsorbtion disease, in which case Noah will always be TPN dependent, then it is not so important to fix up the mess that is his stomach. The tentative plan would be to close up the stoma holes, and create a new hole strictly for venting. But if the biopsies show that he has potential to absorb, or if they come back with no answer at all, then we will need to forge ahead and try to fix the plumbing in there. The plan in that case would be to redo Noah's fundoplication, fix this stomach diversion, try to reconstruct his pyloris (this may not be possible in which case the surgeon would remove part of Noah's stomach and duodenum and then reconnect them), and then create a new G tube stoma, and a seperate J tube stoma. Yep, it's alot...it will be a major event.

After discussing this all with Dr Wales today, he said to me "Now this is why I refused to do telemedicine with Noah". Touche...yep, can't argue with that...would have been a tough one to diagnose over the phone. Despite our balking at coming here, if we had not, we would probably never have discovered this about Noah's anatomy. So I am thankful for where we are today.

After all this, Dr Wales has left the decision up to us. We could go home once the results are in with recommendations for our surgeon back home. Our we can stay and have him do the surgery. A tough decision, as I so desperately want to be at home, or at least closer to home in our own hospital. And yet...not such a tough decision. We have built a trust here, and I have no doubt that Noah is in the hands of an expert. Wanting the very best for Noah, we feel that it is here, with a leading surgeon in this field and a whole team of experts. And so the plan is to stay put and continue to see this through.

Thursday, June 11, 2009

Toronto Day 10


That's the magic time for tomorrow. We saw ENT, Anesthesia, Metabolics and GI today, so everything is a go. Because of his lung and airway issues, Noah will go to the constant care monitored room for the night after surgery until the anesthesia has worn off.

Metabolics may add a skin or muscle biopsy to the list tomorrow but they are still waiting on information from Winnipeg regarding the testing Noah has already had done. Noah had a skin biopsy done over a year ago to test for a Mucopolysaccharidoses (metabolic storage) disease after having high MPS levels in his urine. The last I had heard, the freezer that the sample was in had broken down, so his sample had to be thrown in another freezer and now could not be removed (ok, don't ask me why!). Then I heard that they could no longer find a lab to do the testing they wanted....and on and on it goes. So I brought up the issue yesterday and I'm hoping that they will pick up the ball here and get us some answers. Metabolics has already made some suggestions for a skeletal and eye assessment.

We spent some time with physio this afternoon. Both OT and PT have seen Noah alot already since he has been here which has been so helpful. They have been working lots with mobility issues (standing/walking) and have done a very thorough assessment. I wish we could have therapy a few times a week like this at home. But hopefully I will go home with some good ideas to help with Noah's very tight muscles in his legs and hips.

I also had some company this afternoon and was finally able to meet Alison (who brought the gifts yesterday) in person. Thanks for stopping by...it was so good to meet you and a nice distraction in my day. Noah has been enjoying his new Baby Einstein book.

This evening Noah & I went to watch Tails in the Bear Theatre. Every Thursday evening a group of staff and volunteers put on a musical that one of the doctor's wrote. Noah really enjoyed it and I did too. It was very well done and alot of fun. I couldn't help but miss the kids, thinking about how much they would have loved it too.

Please pray that tomorrow goes smoothly and brings us some answers.

Wednesday, June 10, 2009

Toronto Day 9

This morning we did a RMR test. Basically, this test measures the amount of oxygen and CO2 levels that Noah breathes out. From this, the amount of calories that Noah burns while at rest (his resting metabolic rate) can be determined. Noah had to remain still under a hood for a full 10 minutes for the test to be accurate. Oh, and he also couldn't cry, because then he'd be using up more energy. I was sure this test was going to be a total bust. Couldn't imagine how Noah would stay still for that long. But when the woman arrived to do the test, Noah was still sound asleep. So basically we whipped his CPAP off, and quickly stuck him under the hood. In his half awake state, with Baby Einstein on the TV, he actually managed to complete the test!! I'm curious as to what the results will show. The rest of the morning was spent in the playroom, where Noah discovered the clown (A Leeboo) who came to visit...who blows bubbles, sings and plays the harmonica...Noah was absolutely captivated by him!

We are still continuing to increase Noah's pantoprazole (Protonix) dose, as his stomach ph is still acidic. But the bleeding is much improved as is his stomach comfort. The big question will be whether we will be able to get this IV drug for home use back home. We have tried in the past, but have been unable to get it approved. However, the doctors here are adament that Noah needs it, and it is quite obvious that he does, considering the change in the color of his stomach secretions. Something that will have to be sorted out eventually. We also decreased Noah's TPN another 2 hours today, so he now gets a full 8 hours off the pump. Since no more tests were scheduled for the day and Noah was unhooked, we were allowed to have a pass for the afternoon. But because we are still waiting for a few specialties to come see Noah, we were given a pager so that the ward could page us back if needed. That meant we couldn't wander far, but we spent a relaxing afternoon taking a walk and hanging out at RM house. A company brought in dinner to the house today (which happens a couple of times a week) so that was a very nice treat. And, no, we never did get paged back.
When we got back to the hospital, there were gifts waiting for Noah (and for Kailyn & Joshua too). A friend that I got to know on the internet through our wish trip planning came by. So sorry we missed you Alison, and hopefully we will still have a chance to meet sometime. Thank you for the gifts. Noah was thrilled with all his Tigger loot!