A Diagnosis - for real this time!!

It has been a long day of waiting. We had the ultra-sound at 10am this morning and around 4:30-5ish Dr. RatCliffe, (the last GI doctor from the team that we hadn't met yet!) came in to explain things along with a fellow from the general surgery team (who just transferred here from Sick Kids). They informed us that the barium swallow & ultra sound showed us that Logan's stomach was not emptying when food went in, and therefore having no where to go it comes back up and he vomits. This is INDEED what we originally came in to look at on our very first day at Mac almost 3 months ago - Pyloric Stenosis. To remind you all again Pyloric Stenosis is a condition that causes severe vomiting in the first few months of life. There is narrowing (stenosis) of the opening from the stomach to the first part of the small intestine, due to enlargement of the muscle surrounding this opening of the pyloris, which spasms when the stomach empties. We've had 3 barium swallows, 5 ultra sounds & an endoscopy (scope) done to check this before and the reason why we don't always get a consistent result is because of the spasming that is going on. Sometimes, depending on weather or not it is spasming we get a positive or negative answer. So they actually said that in Logan's case it would be called Pyloric Spasms (something related to the stenosis). Weird I know. But this explains SO much to us. Everything about this condition explains Logan to a tee. If you'd like to read up more on his condition follow this link: http://kidshealth.org/parent/medical/digestive/pyloric_stenosis.html. The difference is that the stenosis is a hardening which he doesn't have, the pyloris measures up to what it should be and it does not have a big thickening. However that muscle is spasming which is not allowing the food to go through in bollus amounts like a baby without this condition would. They need to do something to make that muscle stop spasming. The reason they did not see this during the endoscopy (scope) is because Logan was put out for that and therefore his muscles were relaxed.

Nothing more can be done this weekend. On Monday general surgery will have a meeting with our GI team to discuss the options of how to correct this issue. There are 3 options. First is to give him some medication to help calm the muscle. Second is to put an injection directly into the muscle to make it stop spasming (they explained that this would be similar to botox). Third they can surgically go in to correct it (not sure how but they will explain this on Monday). We are hoping for option 2 or 3 so that we can get the ball rolling and go home! We are beyond excited to hear this good news. Once I read up more research on this condition everything started to make so much sense. We also believe that our son Malachi had the same thing. It is said that children with pyloric stenosis may gain slowly or show no weight gain at all. Malachi was our slow gainer & Logan has plateaued for a long time, so I guess we maybe had one of each! The doctors believe Malachi probably had a more mild case of this and outgrew it by the time he turned 1. Logan however has a more severe case, and having the GERD (severe reflux) isn't really helping him either. We are not really sure what this means as far as him still possibly having a protein intolerance or allergies, or what life will be like when we take him back home. From what I read if they correct it, he may still spit up a bit, but he should start to gain & get back to "normal" fairly quickly. Hallelujah!

It's been a long few months, and we are exhausted! We could get frustrated about all this wasted time when it was the same thing all along, but instead we are choosing to just be grateful that we have an answer & know how to help Logan. God never allows things to happen in our lives without a purpose, we hold on to that belief. We also know that God in His time, chooses when to reveal things to us if it is His will. We are so incredibly thankful to have an answer to prayers!!

We will keep you all updated on Monday once we know the next step. Wishing you all a blessed day of rest tomorrow with your families and may the Lord's Name be praised, honoured & glorified!

"Your love, O LORD, reaches to the heavens, your faithfulness to the skies. Your righteousness is like the mighty mountains, your justice like the great deep. O LORD, you preserve both man and beast. How priceless is your unfailing love! Both high and low among men find refuge in the shadow of your wings." Psalm 36: 5-7

It's A New Day!

Good-morning! This is Jenn writing. We've moved about 4 different times before getting our permanent room for awhile. The E.R.was insanely busy & loud, at one point I remember so many monitors beeping while the nurses we're asking who's was all going off, "Who's ISN'T beeping? replied one nurse! With a big smile on her face our nurse Natalie said - Logan's isn't, he's so good! Logan only slept 2 hours max in the first 24 hrs we were here. He is a trooper though - as long as we fed him when he was hungry, he was pretty darn happy! I think mom & dad had a harder time with the lack of sleep then Logan did!! At 1am Friday morning we overheard our nurse say "Guys, I have a special place in my heart for Logan, we have to get him a room with a closed door so they can turn the lights off & get some sleep". Imagine how blessed we felt that so many people here love him & are trying to accomodate for him! Really, it makes us laugh how everywhere we go in this hospital the doctors & nurses, cleaning staff, OT's, dieticians, receptionists, etc know who Logan Linde is. Its sad in a way because it means we've been here for too long, but in another way its nice to "have connections" and to have made friends with all these people. They don't even need to see Adam or myself, they see Logan and remember exactly who he is! We love that he is loved. We are in good hands here.

We are finally settled in nicely in our "new" room. I was trying to be thankful to have a room but really, this was the crappiest room in the hospital according to our child life specialist. We are in a room with 3 other patients and they are only divided by curtains, except that we don't have curtains! Ours are missing, so our room is wide open. We also are the only people without a t.v. because when we turned ours on it sparked and it's toast now. Of coarse this would happen to us! You may think, so what, no big deal, we don't need a t.v.! But you see, my husband, bless is heart, doesn't sit well in hospitals (or anywhere for that matter!). He gets ancy & bored way too quickly with nothing to do. We only have the laptop so it's hard to share that with 2 people, we can only talk so much while here together and we've both finished reading a book already! So basically I'm saying that while I'm thankful he is with me, he is driving me crazy. I spoke with our child life specialist Laura, and she wheeled in a flat screen t.v. for him to play video games on (ya know the ones that the kids usually get?), she agreed that we needed something to keep him occupied. So as I sit here and type, he's already trying to get to the next level of whatever he is playing on the play station. Laura is amazing, she also got maintenance to find some curtains to rehang for us for some privacy and we have TWO comfy chairs, one for each of us. Like I said, make friends and you will get a little further! And I will say at least I have a window view so I can pretend to enjoy the beautiful spring like weather we are having today - it feels good to have the sun shining in!!

We also got a room at the RMDH again. Adam can sleep just about anywhere, and I have a harder time with that so he graciously let me go get some sleep in our room and he stayed here at the hospital. We finally both got some much needed sleep & we are ready to start a new day!{"This is the day the LORD has made; let us rejoice and be glad in it." Psalm 118:24} We will be going for Logan's ultra-sound soon and that will confirm weather he will be getting surgery for the pyloric stenosis or for the g-tube. Thankful that we will have our answers this weekend! Although we've gone down this road of questioning the pyloris before, we are PRAYING that this is IT this time as it would actually be a "fix" for Logan and not a "band-aid" like the g-tube would be. I hope to blog tonight about how our day goes and hopefully we'll have some answers to tell you all by then! Please keep us in your prayers today that all goes well, and that the Lord grants the doctors insight & wisdom to make decisions on what to do for him. How comforting it is to know that though we love Logan with all our hearts, the Lord loves him even more & is holding him in His Hands!

The Old Pyloric Again...

It's been interesting since Adam and Jenn got to Mac yesterday. They just got into a room and Jenn asked that I try to explain some of the craziness for you all. I will do my best!
 Adam and Jenn were under the impression that if over the last few weeks of being home, Logan didn't progress, they would come to the hospital and get a g tube done. No questions asked. However there were questions asked...a lot of them!
 The Doctor who originally agreed to it was suddenly not on board. He said that perhaps if they stayed in the hospital a week and he monitored the bottle feeds then he would consider it. He wasn't ready to deem it serious enough yet. That was frustrating considering that there has been a stand still for almost a month in his weight. There is concern that if Logan doesn't start to gain it could effect his brain development but he said if Adam and Jenn were that worried they could appeal to the council of the hospital themselves without his recommendation. So today, they did just that! As parents they insisted that the g tube be done or at least something because the other option of being released from care and sent home to wait it out is not appealing.
 The council didn't push them off as we thought they might. Instead they agreed that it is serious and said that they are going to talk it over. In the meantime Logan was sent for a test...the one where he drinks a full bottle with dye in it to see how the stomach is doing...I can not for the life of me remember what it is called! He had done this before but with only 30ml. This time when they gave the whole bottle they saw that Logan's stomach held the content but didn't do anything with it! No contracting of the muscle's that should be going on. He was also sent for an ultra sound but he was so mad at this point that they had to re book it for tomorrow morning.
 This all leads back to what they originally had thought was the problem...pyloric stenosis! It's going to be a while more of testing to confirm and re check for other things. Jenn will update soon I'm sure. For now, this is what is going on!
 When I called her it was so noisy I could almost not hear her. If you want to pop in for a visit you can find them on 3C room 5, with 3 other children who are patients! Lot's of business in that section apparently!
 We'll be in touch!

A Picture Is Worth a Thousand Words

Just thought I'd send you all a picture of Olivia just for laughs. I was making Logan's formula when Adam called me to the door. I walked away for literally 10 seconds and came back to a disaster. Olivia managed to pull the measuring cup with formula off the counter and all over herself & the floor. We laughed at first because she was hilarious and is always into some sort of trouble. We also thought we should cry as that was about $28 of formula down the drain. Ooooh Olivia!

 

Decisions, Decisions...

Thanks to my sister for sending a quick update yesterday! I was indeed running around like a chicken with my head cut off trying to get some things finished before we get the phone call to be admitted again. We also decided yesterday to try going a different route and see if a chiropractor could do anything for Logan. After hearing alot of good reviews, we made an appointment at New Life Chiropractic with Dr. Matt Tonnos. We had a consult last night with Logan to see what they thought. Dr. Matt said that Logan's spine (from the neck to about half way down) is quite ridged, stiff & his muscles are very tense. Apparently a baby's spine should be like play-doh and he should be able to move it around no problem, but he wasn't able to do that with Logan. When Logan was born he was stuck for quite sometime so it could be due to that, or it could be from anything! Either way, he thinks that he could definitely help Logan. We agreed to start seeing Dr. Matt since at the time we thought it would be 2-3 weeks before actually getting in with Mac. We know that this doesn't mean he will necessarily cure Logan from whatever he has, but we do strongly feel this could help Logan in some ways. And so we have his first adjustment tonight :) We do really like Dr. Matt and we are considering all going for an appointment with him when this is all over. Thanks so all you ladies who suggested we give him a call too!

 

In the mean time this morning I paged Dr. Brille at Mac & had a chat with him via phone. I told him I was confused as to what the plan is now & I would like some answers, seeing as we're sick of getting yanked around on a chain. We discussed our options at this point. We can choose to just stay home and wait until our follow up appointment (since discharge) with Dr. Issenman next Tuesday at 1pm, or we can pack our things and come into the E.R. tomorrow & page Dr. Brille who will get us a bed & all settled in. If we wait until Tuesday to see Dr. Issenman then our chances of getting things moving, answers & help for Logan will be a longer process. If we come in through the E.R. tomorrow, Dr. Brille has agreed to get us a consult with the general surgery team on Friday. Our hopes are that they will agree to do the g-tube surgery, if we're lucky possibly even this weekend! If they agree to it they could possibly do it on Saturday or Sunday because they don't actually book surgeries for the weekend unless they are for in-patients or its an emergency. If we choose to wait until Tuesday to go to the clinic we could be waiting another week or a g-tube consult and then a week or 2 after that yet to actually have the surgery. I guess this is a no brainer...we are heading back tomorrow because we really need to get on this & get Logan to start gaining weight.

 

Ahhh its sudden, and I have alot of things going through my mind. I'm usually a calm, laid back, organized person but now I'm running around again packing bags, bathing children, finding babysitters, finishing last minute laundry (last time I left it, it was moldy when we got home!), and trying to re-gain some strength from this cold & lack of sleep that has kicked me in the butt! In the midst of all this I stopped, took & breather & prayed about it. We really want what is BEST FOR LOGAN, not what's most convenient for us, not what someone else thinks we should do, etc...and really...what is the right answer to that? It's hard as a parent to make these big decisions for these children that God has placed in our care. Whether it be a little decision or a big one, it is never easy to have to be the one to make that decision and hope it's a good one! I'll we can do it pray for wisdom from our Father in Heaven, and just do our best! I know that any parent reading this, truly understands how that feels.

 

We've decided at this point to go to Mac tomorrow morning. Dr. Brille suggested coming in the morning because the E.R. is never as busy as it is a night, so our chances of  getting a bed & not waiting as long will be better. We want to take the opportunity he is giving us this weekend to talk to general surgery & see what they can do for us. Please pray that the Lord will grant us wisdom to make the right decisions & that our experience will be better this time. I'm trying really hard not to get hopeful because that always results in a disappointment (at least that's the way it's been so far). Dr. Brille says that if we get the right person they might agree & do it this weekend, otherwise they may say they refuse to do it and discuss the reasons why. If they don't agree to do the surgery, we then have to try to figure out another way to help Logan get nutrients in him.

 

I know alot of people have asked about going back to breast milk or trying goat's milk (which is fattier) and at this point the doctors really doesn't see it making a difference since we've already tried breast milk at the beginning. He said that if they refuse to do the g-tube then we can discuss trying these options in hospital where he can be monitored. I'm not really sure why that is. Wouldn't it be just as easy to try it at home? Anyways thanks to many of you for your suggestions. Even if we don't always try them right away, please know that we appreciate that you care & are trying to help us out! We just need to try one change at a time right now. :)

 

Well I should keep moving over here, just wanted to take a moment to keep you updated with our next step. Thank-you for the continued prayers, such a blessing it is! And thank-you to a friend who sent me this text at just the right time today! Amazing how God uses us all even in ways like that to remind me when I needed it most.

 

“But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.”

Jeremiah 17:7-8

Just An Update

You may have heard that last night Jenn and Adam took Logan to Mac emerg again because he was vomiting up blood. I am just going to give you latest and alleviate your concerns for the moment! 
 Logan did indeed vomit last night, what appeared at first to be blood. However the color was more purple then anything. So at 10pm they headed in to have him accessed, at the recommendation of their dietitian. They were met there by a resident doctor, I can not remember his name right now, but they liked him very much. He walked in apologizing for taking so long but said that he was reading Logan's file...which is pretty much a novel, it is so full!
 After checking everything out, including the bed sheet with evidence of the purple substance, he said that Logan looked good and he had no idea what that stuff was! If there was concern of internal bleeding, then it would be the color of coffee grinds. He decided the send them home for the time being, with instructions to return should it happen again.
 In the meantime he had paged the doctor they had seen there last and spoke to him about the importance of action from here, as Logan is still 11 pounds 2 ounces, what he was at last discharge. This week (unsure of which day exactly!) Logan will be meeting with them once again to book the surgery to insert a g tube. While he is sweet, charming and his vitals are fine, Logan needs to seriously start beefing up now! When I told him this the other day, he just smiled at me like he had a secret he wasn't going to share...hmmm stinker!
 Jenn is busy running errands and preparing for another stay in Hamilton and had asked me to update this for everyone. Please continue to keep this young family in your prayers. As it stands, poor Adam just got over an eye infection and has now pulled his back...of course! When it rains it pours it seems. But Jenn was up beat this morning and says she knows that we live in a broken world and she is not about to cry "why me"! May the knowledge that our God has a plan for each of them and holds them in His hand, be great strength for them as they continue this journey!
 His Grace Is Sufficient!!

"For I know the plans I have for you declares the Lord!!"

Discouraging News, But Hopeful in Our Glorious God

My hubby of all people, reminded me last night that I really need to keep up with the blog. I know, but this is easier said then done! Things are busy, and when I do have free time...oh wait, never mind. There really is no free time. I've decided to update the blog at least once a week. It will be towards the end of the week as weigh ins with the dietitian are on Thursday's or Friday's. I hate to say it but I had more time to blog when I was in the hospital! :)

 

Currently we have been out of the hospital for just over 3 weeks. Our dietitian came last Thursday (Jan 3rd) to weigh Logan. With sadness in our hearts we were told that he has gained virtually nothing since we left the hospital. Actually he went up to 11lbs 7oz just a few days after discharge, but he is now back at 11pds 2oz, which was the weight he was at discharge. He seems to stay stable at this weight most of the time. This was very discouraging for Adam & I. We feel frustrated, disappointed, confused and a whole lot of other things! We just want what's best for our baby & we want to see him grow & thrive! As I am sure any of you other mothers would agree.

 

Our dietitian said he would give us another week, he comes this coming Thursday to weigh him again and we go to see the paediatrician tomorrow. If Logan has not gained sufficiently before then, we will have to go back to Mac. We would pack our things & head to Mac Children's hospital this coming Friday morning, go through E.R. and ask them to page Dr. Brille, the on call GI doctor on Logan's case. The plan is to discuss the g-tube route for Logan. We've actually already discussed this before we were discharged last time, so this would be a matter of when & booking it. I would like to say though that I'll believe it when I see it. I have a hard time believing we can actually just go in and have everything run so smoothly like that, that never happens. We're also not sure if they'd admit us immediately or send us home until surgery day. I guess it depends on what they think of Logan's situation. They may want to keep him at the hospital on an ng tube until then to keep the food in & monitor him. So many of these things we are unsure of, so don't quote me on it :) We've just been informed all this by the dietitian.

 

In the meantime we have tried the last kind of formula (Neocate), which proved to be no better then the Nutrimigen AA, it's just more costly! So we went back to the Nutrimigen AA. We've fortified the recipe and Logan has been getting 140 EXTRA calories then most children and he is still vomiting and not gaining weight. We then tried giving him rice cereal which he was not able to take by spoon because he doesn't grasp the concept yet (he is only 4 months after all!), so we mixed it in with his bottle in hopes that if it was thicker it would stay down better. Unfortunately this made him vomit worse. So we are out of options of ways to try to beef him up! The only way we've been able to keep food in Logan & see growth is when he was on a feeding tube running continually 24/7's at a slow drip rate. Our hopes of using the g-tube would be to let Logan have a bottle during the day (to keep up the sucking motion) and then hook him up to run continually for 12 hours at night (example: 9pm-9am). We would do this for a couple of months until Logan can start solid foods. Once we try solid foods we are hoping that he will keep it in & start to really gain weight. But we will also have to work with an allergist to see what foods he can try, etc, etc...so we'll worry about that when we get there. As of right now our main concern is getting him to starting gaining until he can try solid foods. Obviously they can't expect him to maintain a weight of 11 pounds for the next couple of months, and even then he may not be able to handle solids! We also need Logan to keep up with everything in growth, including brain development. That is not going to happen if he doesn't start obtaining the nutrients he needs & start growing.

 

Just the thought of going back to being admitted at Mac gives me a hard pit in my stomach & makes me feel so anxious. I've already had a taste of life at the hospital, separated from my family & let me tell you, I don't look forward to possibly doing that again. We're nervous about possibly having to do surgery for the g-tube. Not to mention, confused & frustrated as to why Logan is still vomiting so much! If it is indeed a protein intolerance, you would think with changing the formula & putting him at the highest dose of medications would make things at least a little bit better. This also is what makes Adam & I think it is no a protein intolerance. Why does he keep food in on the feeding tube, but not by the bottle? Why does he seem to start gaining at the hospital and not at home?? Do they really have a plan for us or were the doctors just hoping that they found what it was? Why can't they let us meet with an allergist now rather then waiting until he is 9 months old?? Sorry, we have alot of questions - clearly we really do need to sit down with the GI team and re discuss alot of things.

 

As discouraging as this news was for us, we still believe that all things are in God's hands. He cares for all of us from the oldest to the smallest tiny babe, and he promises to never stop caring for us. If it is His will Logan may start to gain this week before having to return to the hospital. We pray that things will start to look up for Logan, and also that we continue to put our complete trust in our faithful Saviour. We are so thankful for the time we've had at home these last 3 weeks and we've really enjoyed making the most of each day that we've been given together.

 

May God's Name continue to be praised I will update you all later this week!

 

"Lord God, I know Your name and I will lean on and confidently put my trust in You, for You, Lord, have never forsaken those who seek You." Psalm 9:10

p.s. If you'd like to get email updates whenever I update the blog rather then checking everyday to see if there is a new post you can! On the home page of our blog on the left sidebar just under Total Pageviews you will see "Follow By Email". Just enter your email address and click submit and that should do it! Thanks so much for following :)