It's hard to believe that just over a month ago Adam & I walked into Mac with Logan ready to have an ultra-sound and surgery done for the pyloric stenosis, and since then we've been here at Mac (with the exception of going home for aweek in that time). We have actually been living at the hospital for 27 days! I have been sharing this tiny hospital room with Logan for almost 4 weeks total. Adam has been driving back and forth to work and back here, spending money on food, gas & parking, our kids are with our parents, our crazy dog being taken care of by the Keizer clan, we have had visitors, emails, phone calls, meals on our doorstep & help around the house for a month now. Adam & I have had to make decisions & go through things we never thought we'd imagine, things that we never wish upon any of you to have to experience. There have been moments of weakness and emotions, moments of laughter, moments of fear and worries and everything else you can imagine. Yet through it all we've been surrounded by the love & support of our family & friends and most of all God who is holding us through all of it.
Today, I thought to myself, what is the Lord trying to teach me in all of this? I am trying to keep a positive perspective through this trial. I had another couple of wonderful visits today in which I had the opportunity to express how I feel and talk about our situation, and they were able to give me some much appreciated thoughts & advice. After those lovely ladies left and I sat alone here with Logan in my arms, I decided to pray. To pray harder then I ever have before for patience, trust, understanding and for answers. Even if they are not the answers I was hoping for, I just needed to hear some answers. To know where to go from here. To have an idea of when I can pick up my other children & go home. Believe it or not you start to go a little crazy being stuck here away from your kids & the normalities of life for this long. I sometimes just want to give up, mostly for the fact that I'm tired emotionally & mentally, but even though I feel this way I know that the Lord will continue to pick me up and carry me on through this. This is not a time to just give up and walk away. My son needs me. I need to be his advocate and get through this holding his hand. And I feel like we are getting closer to knowing the answers by the day!
Cue the doctors! Not long after all this Dr. Zachos and our team of GI doctors came in the room to inform me that those biopsy's that they took from Logan's scope last week just came in today. It turns out that under a scope they were able to see that Logan has a protein intolerance called "Eosinophilic Esophagitis". Eosinophilic esophagitis is an allergic inflammatory condition of the esophagus. Symptoms are swallowing difficulty, food impaction, and heartburn. Basically the wall of the esophagus becomes filled with large numbers of eosinophils, a type of white blood cell. They believe he has a milk protein intolerance. Yes this is something we've discussed before that they had ruled it out. How come we are going back to it? Apparently this is not something you can just see with the scope, which is why we had the biopsy's of the espophagus taken. We have increased his medications again and we have changed his formula to a higher conentrated formula (still from Nutrimigen) that is packed full of more calories and the protein is broken down even more then what he was on before. This is the highest kind of broken down protein formula that you can get. We will monitor his feeds over the next few days and hopefully by the weekend, slowly try to work him up to bolus feeds again (eating every 3 hours). If Logan can tolerate this formula with a sufficient weight gain, none or less vommitting and is more content, we will then move on to try to get him to take more from the bottle. He will most likely still go home on a feeding tube until we can get him to fully take the bottle again (this could take a few months, it all depends on Logan). They have assured us that once we can get Logan off of continuous feedings and he can handle the bolus feeds then they will put a g-tube in his stomach to go home with until he can be off of tube feeds. The only way he could go home without a feeding tube is if for some miracle he takes the bottle no problem before we are discharged, but we are not holding our breath as they think this could take him a few months to grow out of the reflux & correct his feeding issues. So long story short, they are trying their best to get us home for Christmas! If this is not possible he will get a LOA (leave of abscence) for a few days over Christmas. Fingers crossed!! :)
THIS was the best news I've received in SO long!! You can just imagine the feelings of excitement & relief I was feeling. The GI team has told me that there are no guarantee's, but this is the first clue leading us in a direction as to what to do for Logan, so we will hopefully be able to see after the weekend if things start to improve and Logan begins to thrive. We will also be doing the MRI tomorrow just to confirm that nothing else is wrong and rule out any other problems that Logan could potentially have. It still seems so crazy to me to think that after everything we've been through it could just be a protein intolerance, but we don't even care. Now we know how to try to help Logan! This doesn't mean he is out of the woods yet, as he will need alot of health care & follow up visits once discharged, but it is a step in the right directions. Praise God from whom all blessings flow!!
Tuesday, 4 December 2012
Daddy's Brave Little Man
“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. Said Christopher Robin to Pooh”
Want to talk about a brave kid? At 8:30am this morning the iv nurse came in to take bloodwork for Logan and put an iv in. Logan was sleeping, but quickly opened his eyes and flashed her a smile. "Oooh she says, you are a charmer! But your not going to like me a couple of minutes from now!" I am beginning to think that Logan takes pride & joy in proving people wrong.Why, you might ask? He layed there sucking on the fingers of his right hand (his favourite one) as she began to poke him in the left hand. She pokes once and not even a flinch, she pokes twice and still no tears from our big brave boy. No, instead he takes his fingers out of his mouth and starts to coo and chat with her. "Talk about a flirt - is this boy for real? He must have a high pain tolerance!" said the nurse. Well, when you've been poked and prodded that much, maybe you just begin to get used to it and gain a huge tolerance for pain. I'm not really sure, but I do know that for the most part Logan takes the pain extremely well!
After the bloodwork was taken out of the left hand we lost the vein because they are not very big or strong, and for some reason his stronger veins are always in his right hand. Logan, who still had not shed a tear began to get upset when she took away his fingers so she could get the iv in. What a kid! You can poke me all you want, just don't take the comfort of my fingers away! After it was all over I snuggled him close to me and showed him how to find his left hand to suck on. He didn't seem too impressed, but took it as, well I guess this is better then nothing. Way to go Logan!! Wish your father could have been here to see how well you did today - you are daddy's brave little man!!
Sleeping peacefully with his LEFT hand fingers in his mouth
and his right hand completely bandaged up so he
can't pull out the i.v.
Sleep well baby boy!! xo.
Monday, 3 December 2012
My Father Always Told Me That Patience Is A Virtue.
Today was a good day, considering it was Monday and it is always hard to get back into the swing of things after the weekend. We had some lovely visits & Logan was spoiled with snuggles for most of the day by me or visitors, you can tell because as I try to settle him tonight he keeps fussing, looking at me all disappointed that he has to lay there on his own. His dad's a sucker for Logan's smiles though, because not long after I tried to settle Logan, Adam scooped him up again! :)
We were told this morning that Logan no longer needs to meet with an anaesthesiologist since he already went through this last week with the scope. Yay, we get to skip a step!! They then scheduled his MRI for Wednesday morning at 9am. Tomorrow night the nurse will put an iv in Logan and run it at 3milagrams to keep the line open. At this time they will also take the blood work for those tests on his glands. At 2am they will stop running his feeds as he has to be NPO (nothing passes orally) for a few hours before the MRI. After the MRI is complete the radiologist will have to look at it, write a report, send it up to our doctors and then at some point they will explain how it went. We might as well not count on hearing the results until Thursday. IF they find something extremely abnormal/urgent/of great concern, they will let us know that day yet. If we don't hear from anyone by Wednesday evening, I guess we'll go with the saying, "No news is good news!"
We are still in the process of changing up his feeds and adding more calories, we will hopefully get a better jump on this in the morning. We know that he is getting all the nutrients & calories through the ng tube, he just doesn't seem to absorb it. On a good note Logan has FINALLY gone up a little bit in weight. He has gone from his steady weight for the last two weeks of 4.75grams to 4.80 grams tonight when we weighed him, not alot really but it sure made this mama happy!! This is great news as he's never gotten higher then 4.75 grams yet. We would be thrilled if he starts to go up a little bit each day from here on out. The nurse said there is no guarantee's that this will happen, but this is a start. Yay, good job Logan!! This could take awhile as we will be monitoring his feeds for the next week or 2. For once, I'm ok with that. I just want to see my baby start to thrive, and I'm willing to be patient & wait for this to happen. My father always said, "Patience is a virtue!", something that I'm sure is familiar to all of you as well. So here's to praying for patience, LOTS of patience! Our night nurse came in and asked us why we are still here. She says he is bright, reaching milestones, and waaaay too cute to have anything seriously wrong with him... she then asked if he is just on a feeding tube, why are you not doing this at home? We explained to her that we are trying to get Logan off the continuous feeds and back to every 3 hours (bolus feeds) so that he can have a g-tube put in. This all made sense to her, but she told us that after being with him for a few weeks she just feels in her heart that he might be one of those babies that just needs time to start gaining properly and may not actually have something wrong with him other then his reflux. Not gonna lie, I had to agree with her. Something I think if we haven't found anything after testing him for over a month now, and he seems healthy, reaching milestones it just makes me wonder how he could have anything seriously wrong with him. I guess we'll know more after this MRI. It just seems really odd to Adam & I that he could have nothing wrong and all of a sudden out of the blue just starts to gain weight. Not that I am complaining, I would love to be assured that my child is not actually sick from anything serious, it just seems exhausting to think we spent the last 8 weeks (4 of which were spent in the hospital) running tests just to find out that he has nothing wrong with him. We feel that if the MRI doesn't show anything wrong then we've pretty much lost hope in finding anything at this point & just pray Logan will start to gain weight on his own with upping his calorie intake. It would be nice to know the reason for failure to gain weight though.
Although I guess none of this really matters in the end. Sometimes we do not need to know the answers. Sometimes just knowing that God is in control and that He doesn't need answers from the doctors to heal our little man is a comfort. We know that He is the Great Physician & Logan will begin to thrive again in His time, if it is His will. No matter the answers in the end, we truly feel in our hearts that God is using us through this trial in many ways. Through this we are drawn closer to Him, it has strengthened our marriage & changed our perspective on what's really important in life, God's Name has been praised and we have been able to be used in His service to witness to those around us here in the hospital. Just knowing where we stand in Christ give us the strength to overcome every situation in our daily lives. I've come to realize that we who are in Christ, are to put our complete hope and confidence in God rather then in ourselves or the doctors, because then we are in position to receive miraculous answers for our prayers.
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or stow away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? ... Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" - Matthew 6:25-27, 34
We were told this morning that Logan no longer needs to meet with an anaesthesiologist since he already went through this last week with the scope. Yay, we get to skip a step!! They then scheduled his MRI for Wednesday morning at 9am. Tomorrow night the nurse will put an iv in Logan and run it at 3milagrams to keep the line open. At this time they will also take the blood work for those tests on his glands. At 2am they will stop running his feeds as he has to be NPO (nothing passes orally) for a few hours before the MRI. After the MRI is complete the radiologist will have to look at it, write a report, send it up to our doctors and then at some point they will explain how it went. We might as well not count on hearing the results until Thursday. IF they find something extremely abnormal/urgent/of great concern, they will let us know that day yet. If we don't hear from anyone by Wednesday evening, I guess we'll go with the saying, "No news is good news!"
We are still in the process of changing up his feeds and adding more calories, we will hopefully get a better jump on this in the morning. We know that he is getting all the nutrients & calories through the ng tube, he just doesn't seem to absorb it. On a good note Logan has FINALLY gone up a little bit in weight. He has gone from his steady weight for the last two weeks of 4.75grams to 4.80 grams tonight when we weighed him, not alot really but it sure made this mama happy!! This is great news as he's never gotten higher then 4.75 grams yet. We would be thrilled if he starts to go up a little bit each day from here on out. The nurse said there is no guarantee's that this will happen, but this is a start. Yay, good job Logan!! This could take awhile as we will be monitoring his feeds for the next week or 2. For once, I'm ok with that. I just want to see my baby start to thrive, and I'm willing to be patient & wait for this to happen. My father always said, "Patience is a virtue!", something that I'm sure is familiar to all of you as well. So here's to praying for patience, LOTS of patience! Our night nurse came in and asked us why we are still here. She says he is bright, reaching milestones, and waaaay too cute to have anything seriously wrong with him... she then asked if he is just on a feeding tube, why are you not doing this at home? We explained to her that we are trying to get Logan off the continuous feeds and back to every 3 hours (bolus feeds) so that he can have a g-tube put in. This all made sense to her, but she told us that after being with him for a few weeks she just feels in her heart that he might be one of those babies that just needs time to start gaining properly and may not actually have something wrong with him other then his reflux. Not gonna lie, I had to agree with her. Something I think if we haven't found anything after testing him for over a month now, and he seems healthy, reaching milestones it just makes me wonder how he could have anything seriously wrong with him. I guess we'll know more after this MRI. It just seems really odd to Adam & I that he could have nothing wrong and all of a sudden out of the blue just starts to gain weight. Not that I am complaining, I would love to be assured that my child is not actually sick from anything serious, it just seems exhausting to think we spent the last 8 weeks (4 of which were spent in the hospital) running tests just to find out that he has nothing wrong with him. We feel that if the MRI doesn't show anything wrong then we've pretty much lost hope in finding anything at this point & just pray Logan will start to gain weight on his own with upping his calorie intake. It would be nice to know the reason for failure to gain weight though.
Although I guess none of this really matters in the end. Sometimes we do not need to know the answers. Sometimes just knowing that God is in control and that He doesn't need answers from the doctors to heal our little man is a comfort. We know that He is the Great Physician & Logan will begin to thrive again in His time, if it is His will. No matter the answers in the end, we truly feel in our hearts that God is using us through this trial in many ways. Through this we are drawn closer to Him, it has strengthened our marriage & changed our perspective on what's really important in life, God's Name has been praised and we have been able to be used in His service to witness to those around us here in the hospital. Just knowing where we stand in Christ give us the strength to overcome every situation in our daily lives. I've come to realize that we who are in Christ, are to put our complete hope and confidence in God rather then in ourselves or the doctors, because then we are in position to receive miraculous answers for our prayers.
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or stow away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? ... Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" - Matthew 6:25-27, 34
Sunday, 2 December 2012
A Lovely Day Away...Then It's Back To Reality!
Yesterday was such a lovely day. It was so refreshing for Adam & I to be able to leave with Logan for the entire day. Free from anxiety, worries & the hospital. We arrived at the hospital at 6:30am to sign Logan's day pass & get out of here. As usual Logan was all smiles, although I feel as though he was even more excited today because he got out of his pink hospital gown and into the real world again, outside of the hospital. We then proceeded to head to Smithville to pick up big brother Malachi & big sister Olivia. The kids were all so excited to see eachother again that it melted my heart. Mali & Liv hovered over Logan's carseat saying "hi, baby...we missed you Logan!"...and smothering him in kisses & hugs. They are so good with his feeding tube too! Livvy honestly hardly notices the thing, she's too busy to stick around long enough to notice it and Malachi just always repeats to himself, "Don't touch the tube Malachi"..." as he sits there with a huge smile on his face and Logan's tiny hand gripped around his finger. Sigh....I love my kids.
They did so great coming down the aisle, and sitting in church. Logan, who was sitting with Adam the whole time, didn't even make a peep! After the ceremony & family pictures were done, I had to stay to finish pictures with the wedding party. Adam packed up all 3 kids (that were miserable by this point) and took them to uncle Jay & aunt Lisa's house - who were watching Malachi & Olivia for the evening so that we could enjoy some fun at the reception. Then comes the fun part - while at the reception Logan nicely exploded for Adam, up the back and all, I truly believe he deserves to be called super dad of the year, he changed it all by himself without even complaining once to me! He just told me to go enjoy myself and not worry about Logan the whole night, as he had promised to take care of Logan for the evening. Wow. Um. Thank-you!!! Logan's contagious smile was shown to many last night, as lots of family & friend enjoyed getting to take a peek at him. He was a stinker though, because around 10pm, he decided it was time to lose the feeding tube again. While auntie Hannah was holding him he flashed her a huge smile & before she could stop him he yanked it right out! Ooooh Logan, what are we going to do with you? Thankfully it was right at the end of the night. I still believe that he was in cahoots with his daddy, how convenient that he pulled the ng tube out right before it was time for Adam to start helping with clean up! ;) Back to the hospital we went to get a new feeding tube back in and settle Logan in his bed for the night.
We had such a great time at the wedding! So many laughs, emotions & tears (of joy!)...hey, growing up with 4 girls in the family causes for alot of tears & emotions! Mike & Hannah, we hope you enjoyed every minute of your special day as much as we did, if not more! Thank-you so much for allowing me to share in your special day at your side. I feel so blessed, that even though we are going down this road of hardship in our lives right now, that we are still able to enjoy to blessings that God grants to us as well. Rejoicing with you, and praying that the Lord blesses you both in your marriage, and grants you many years of happiness together in service for Him.
Today we are back at the hospital. It's been a quiet day. Unfortunately when I asked the nurse this morning when Logan would be going for his MRI she said that she was never given any order for him to go for one today. Arrrggg...why does this not shock me? So when will he be going for one, I asked the doctor. Oh possibly Monday or Tuesday, we'll get back to you. I asked them kindly to STOP telling me he is going for tests/procedures on certain days and then it never happens. The doctor on call this weekend called to get him on the list for one early next week. I guess he has now delivered the requisition, and we are waiting for Logan to be assessed by the anaesthesiologist. Once that is finished they will give us a time slot for him to go for the MRI, put an i.v. in and make him fast again. I guess there are alot of steps to it, but still...
Other then that we are still waiting for him to go for more bloodwork next week on the endocrine & pituitary glands, and we have increased his feeds a little bit. On a plus side he took 25ml from the bottle at a couple of feeds today and he took the bottle great! Our O.T. says he drinks beautifully and definitely has not lost that sucking motion, yay! Now we slowly have to work up how much we give him from the bottle at each feed and see how much he can tolerate. We will keep you all updated if anything changes!
Not much changes from Friday's post, so I thought I'd throw in some pictures from the wedding yesterday for you. ENJOY! :)
They did so great coming down the aisle, and sitting in church. Logan, who was sitting with Adam the whole time, didn't even make a peep! After the ceremony & family pictures were done, I had to stay to finish pictures with the wedding party. Adam packed up all 3 kids (that were miserable by this point) and took them to uncle Jay & aunt Lisa's house - who were watching Malachi & Olivia for the evening so that we could enjoy some fun at the reception. Then comes the fun part - while at the reception Logan nicely exploded for Adam, up the back and all, I truly believe he deserves to be called super dad of the year, he changed it all by himself without even complaining once to me! He just told me to go enjoy myself and not worry about Logan the whole night, as he had promised to take care of Logan for the evening. Wow. Um. Thank-you!!! Logan's contagious smile was shown to many last night, as lots of family & friend enjoyed getting to take a peek at him. He was a stinker though, because around 10pm, he decided it was time to lose the feeding tube again. While auntie Hannah was holding him he flashed her a huge smile & before she could stop him he yanked it right out! Ooooh Logan, what are we going to do with you? Thankfully it was right at the end of the night. I still believe that he was in cahoots with his daddy, how convenient that he pulled the ng tube out right before it was time for Adam to start helping with clean up! ;) Back to the hospital we went to get a new feeding tube back in and settle Logan in his bed for the night.
We had such a great time at the wedding! So many laughs, emotions & tears (of joy!)...hey, growing up with 4 girls in the family causes for alot of tears & emotions! Mike & Hannah, we hope you enjoyed every minute of your special day as much as we did, if not more! Thank-you so much for allowing me to share in your special day at your side. I feel so blessed, that even though we are going down this road of hardship in our lives right now, that we are still able to enjoy to blessings that God grants to us as well. Rejoicing with you, and praying that the Lord blesses you both in your marriage, and grants you many years of happiness together in service for Him.
Today we are back at the hospital. It's been a quiet day. Unfortunately when I asked the nurse this morning when Logan would be going for his MRI she said that she was never given any order for him to go for one today. Arrrggg...why does this not shock me? So when will he be going for one, I asked the doctor. Oh possibly Monday or Tuesday, we'll get back to you. I asked them kindly to STOP telling me he is going for tests/procedures on certain days and then it never happens. The doctor on call this weekend called to get him on the list for one early next week. I guess he has now delivered the requisition, and we are waiting for Logan to be assessed by the anaesthesiologist. Once that is finished they will give us a time slot for him to go for the MRI, put an i.v. in and make him fast again. I guess there are alot of steps to it, but still...
Other then that we are still waiting for him to go for more bloodwork next week on the endocrine & pituitary glands, and we have increased his feeds a little bit. On a plus side he took 25ml from the bottle at a couple of feeds today and he took the bottle great! Our O.T. says he drinks beautifully and definitely has not lost that sucking motion, yay! Now we slowly have to work up how much we give him from the bottle at each feed and see how much he can tolerate. We will keep you all updated if anything changes!
Not much changes from Friday's post, so I thought I'd throw in some pictures from the wedding yesterday for you. ENJOY! :)
It's tiring work being this cute! Logan looking all spiffy in his outfit :)
SISTERS ♥
Gotta have one with my little sis, the gorgeous bride!
One with my hubby ♥
The new Mr. & Mrs. Joosse!
Sadly I have no pictures on my camera of the other kids
as it was so busy during the day with them around,
but we do have this one of us with Logan at the reception.
If anyone has some pictures of my other kids,
please feel free to email them to me! :)
Logan is 3 months old, and one handsome little boy!
Aunt Hannah & Uncle Mike with Logan.
The "original" 5 siblings with dad & mom.
(Missing Ryan, Adam, Mike and Dave)
CONGRATULATIONS!!!
(Thanks to aunt Jess for this great shot!)
Mike & Hannah's wedding text and one of my favorite texts too:
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.
- Jeremiah 29:11-13
Friday, 30 November 2012
Blessings In The Small Things
When we lose one blessing, another is often, most unexpectedly, given in its place. - C.S. Lewis
I probably won't post till sometime Sunday since tomorrow will be a late night, so I thought I would give you just one more post before tomorrow's BIG day!! Hamilton is a mess -the snow came, iced over & it took Adam 2 1/2 hours to get back here from home tonight...long story short I did not make it back in time to go out with the wedding party to get our nails done. After my emotions kicked in & I shed a few tears, Adam decided we were going to find a place around the hospital to get me a manicure! Thanks to my loving & totally understanding hubby! We found a place that stayed open late just for me & it was the most expensive manicure I've ever had, but totally worth it! To top it off we got a Gingerbread Latte from Starbucks on the way back. I'm disappointed that I didn't get to be with all the girls tonight, but talk about making the most of a bad situation! :)
What started out as a bad start to our weekend, turned out to be full of wonderful blessings. I was still able to have a fun night (despite the fact that I missed going out with the wedding party), we feel blessed to be able to share in Mike & Hannah's special day tomorrow, we are finally moving on with the MRI for Logan on Sunday and to top it all off...Logan got a DAY PASS!! We are so excited to be able to go together as a family to the wedding & enjoy a day of freedom from the hospital, tests and worries. Thank-you to all the incredible family & friends that were lined up to take shifts with Logan here tomorrow, although we don't need you to stay with him anymore we appreciate your generous offers to help us out!
Lastly we'd like to mention another special blessing we received. Since being admitted a month ago we have shared a room with many different people, some good and some,um... not so good. We prayed that the Lord would bless our stay here at Mac & that we would have some friendly room mates (this is something huge as you really get to know the people you bunk with!). Well we feel the Lord answered our prayers when we met Geoff & Tarra Gritter, our new neighbors for the last week. It was so great to share a room with another "dutch" family who were so sweet, friendly & of the same faith as us. We got to play some dutch bingo and help eachother out in small ways. We are so happy for them as they were discharged today & got to head home again. Not gonna lie, I shed a few more tears after they left. As happy as we are for them that they were able to take their adorable little girl home, they will be missed and we are so incredibly gratful to have met such an amazing family! We look forward to our weekend & we will find out who our new room mates are when we get back here tomorrow night.
On Sunday, along with doing the MRI we will also be doing more blood work. Remember how I spoke with the doctor from Endocrinology this morning? Well he confirmed that there are a few things we need to start looking at. First, the adrenal glands, which are a pair of small endocrine glands that sit above the kidneys and release their hormones directly into the bloodstream. They will also be checking the pituitary gland, which is located at the base of the brain and is part of the endocrine system. My understanding is that if something is wrong with either of these, it could be a good reason for why Logan continues to vomit & isn't gaining weight. The doctor explained it like this to me tonight: the endocrine system helps regulate and maintain various body functions by making and releasing hormones, chemical messengers. The major areas of control include responses to growth and development, absorption of nutrients, energy metabolism, water and electrolyte balance, reproduction, birth, and lactation. Most if not all of these apply to symptoms that Logan has, so it is very important that we test these things.
We are so happy that we are moving forward alot quicker - running tests & figuring out what's going on with Logan. This is a big answer to prayers! Praise the Lord for continuing to listen to our prayers & for watching over us every step of the way. We've learned that sometimes things find their way into our lives which are unexpected and may prove to be difficult to understand, but as we have seen, they always come with the loving hand of our Father in Heaven guiding us to where He wants us to be. I've spent so much time trying to prove that I know what's best for Logan & our family, however, our loving Shepherd knows that this is not always what is best for us. In James 1:2 we read, "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance."
Wishing you all a blessed weekend! Love us Linde's.
"I'll Be Home For Christmas" Just Took On A Whole New Meaning...
It was a bitter cold, windy walk to the hospital this morning. I just got off the phone with Adam, saying that the sky is just so dark and dreary and looks like it could snow. "Ya, we're supposed to get 2-4cm this afternoon!" says Adam with enthusiasm, probably because that means he gets to go snow-plowing (something he actually loves to do!). I on the other hand was thinking - how am I supposed to go get my nails done tonight with the girls if you are out snow plowing?? Yes, I'm breaking out of here and going to get my nails done tonight! As many of you know my sister Hannah is getting married tomorrow to Mike Joosse! Its been crazy this week prepping for that, and we feel bad that we can't do much for her here at the hospital, but Hannah's been very understanding and we are VERY excited to be able to share in their big day tomorrow!!
So my apolpogies for not blogging yesterday, there simply was no time! I left the hospital yesterday at 9:30am and my day went like this: laundry, re-pack bags, stop to notice that someone SO WONDERFUL cleaned my house from top to bottom!!, buy a wedding gift, give our dog Toby some love, finish a dress fitting, play tea-party & trains with our other 2 monkey's, enjoy a delicious home cooked meal at my in-laws, take the kids to the rehearsal, after-party with the fam jam, take them home to put p.j.'s on & tuck them into bed, head home (oops, I mean to back to the hospital) and in bed by 11:30pm. Needless to say it was a busy day with no blogging, and I think I only remembered stopping to go the the bathroom twice! LOL.
Meanwhile my incredible husband Adam had a day in the life of moi at the hospital with mr. Logan. At noon I called Adam to see if anything exciting was happening. Nope, he says...Logan's been sleeping & watching t.v. all morning (surprise, surprise). Our GI doctor came to see Adam in the morning to say that scope confirmed that nothing was seen to be wrong in the upper & lower GI, and the partial blockage they thought they seen on the barium x-ray was just a shadow. Sigh. Nothing. Still no answers. However they wanted to run more blood work yesterday to check a few other things - Adam says he wasn't really sure what for and at that point he just said go ahead! That all came back normal as well. We are thankful that Dr. Zachos is speedy on trying more things everyday, its just a huge disappointment to keep looking and coming back with no answers. They wanted to then perform an x-ray on Logan's chest (the heart, spleen, liver, and kidneys) to see if anything was abnormally small or large. Just before Logan had to go for his x-ray he decided to throw a wrench in everything and pull is feeding tube out! He was off of his feed again from 2pm until 6pm since he pulled the tube out, was waiting for his x-ray on the chest & then also needed an x-ray to make sure the new ng tube was in the right place. By 6:30pm and he was all hooked up again and Adam thought they had enough excitment for one day. Guess again! At 8:30pm last night Logan decided he was going to show them who's boss. He probably hates his feeding tube in the worst way, and so he pulled it out again...make that 12 times pulling it out!! New ng tube gets put in much to his dismay and back down they go to get another x-ray to check the placement - Logan grinning from ear to ear all the way down, free from his tubes. Logan was finally hooked up and feeding again by 10pm. Adam got Logan all settled & tucked in all nicely in the crib and headed back to the Ronald McDonald house for the night. I was told later on at night that he gives me alot of credit, he doesn't understand how I can sit at the hospital day in and day out like that. Thanks for the credit hun, but it isn't a choice...you just DO IT because you have to! :)
This morning I arrived at the hospital to a sleeping, beautiful baby. He was grinning in his sleep while I watched him, so I like to think he was having good dreams. Maybe good dreams of going home for Christmas?? Our doctors informed us that they do not really have any clues as to where to go next, but they assured us they will keep looking! In the meantime they told us that we better get it into our heads that we will most likely be here over Christmas. They are not planning on sending us home until they diagnos Logan, or they seen a sufficient weight gain, which could take awhile. The term "I'll be home for Christmas..." just took on a whole new meaning to me. As my brother in law Tim reminded me this morning - Christmas is still 3 weeks away, and hey if you do end up here it isn't ideal, but in hind sight what is one Christmas here at the hospital compared to the rest of Logan's life. Our kids won't remember and it sure will be a different way to spend the holidays, but we will make it work. According to my mom & sisters, "We'll just bring Christmas to you!" Maybe, by some miracle they will find something sooner and we can go home, but if not we will not let it get us down, we will make the most of it. They did however talk to us about POSSIBLY getting Logan a day pass for Hannah & Mike's wedding tomorrow. If everything goes well today, then the doctors don't see why not, they'll let us know tonight what they think. That would be amazing!! For all those taking shifts with Logan tomorrow, we will let you know ASAP if he will be able to come with us for the day, but we thank-you in advance for your willingness to help us out.
I guess I should explain what I mean by if everything going well today. Dr. Zachos has ordered an MRI to be done on Logan's brain today. We're not sure what time - they are scheduling something as we speak. She believes that we need to start looking in that area since the gastral area had no signs of anything wrong. We also need to discuss Logan's feeds. They have increased his feed by 3ml per hour. Adam & I thought that's not much at all and we should do more, unfortunately though Logan started vommitting again through the night, they just aren't sure if its because they've increased the feeds or if it is because he had a new ng tube down his throat twice yesterday causing him to gag. We will know more today while we monitor his feeds. They are hoping if we increase the feeds and add more calories it will slowly help Logan to put on more week. Time will tell I guess. They also want to try to get him off of the continuous feeds and back to bolus feeds. As long as Logan is on a continuous feed he can not have a g-tube put in through the stomach, but if we can get him back to bolus feeds every three hours he is then a candidate to get a g-tube put in. It is too dangerous to have an infant on continuous feeds with a g-tube, so as of right now unfortunately the ng tube is better for him until we get him eating every 3 hours again. I also met with a doctor from Endocrineology this morning who evaluated Logan and assured me that although Logan is having a hard time gaining weight he is a healthy child. He is reaching milestones, following with his eyes, smiling, cooing, has great head control, etc...his lungs are clear, heart is good, there is no reason to say this child is not healthy. Then he told me he just has a severe case of reflux. I gave him a smile and said, your right he does have reflux, but I'm sorry to have to correct you...this is not just reflux. Logan's reflux is under control with medication and he doesn't vomit up his entire feeds anymore, so why then is he not gaining weight? The doctor said honestly that he doesn't know and it doesn't make sense because if indeed the reflux is under control, with time he should have been gaining by now. Exactly! So yes he has reflux, but there has to be something more to it.
This is as far as the story goes right now. It is 11:30am and I will be waiting today to have the MRI done, and of coarse I will enjoy a couple of visits with some family & friends this afternoon. Also keeping my fingers crossed that Logan can possibly have a day pass tomorrow and spend time with his family! I'll let you all know if anything changes. Perhaps this MRI will tell us more...
So my apolpogies for not blogging yesterday, there simply was no time! I left the hospital yesterday at 9:30am and my day went like this: laundry, re-pack bags, stop to notice that someone SO WONDERFUL cleaned my house from top to bottom!!, buy a wedding gift, give our dog Toby some love, finish a dress fitting, play tea-party & trains with our other 2 monkey's, enjoy a delicious home cooked meal at my in-laws, take the kids to the rehearsal, after-party with the fam jam, take them home to put p.j.'s on & tuck them into bed, head home (oops, I mean to back to the hospital) and in bed by 11:30pm. Needless to say it was a busy day with no blogging, and I think I only remembered stopping to go the the bathroom twice! LOL.
Meanwhile my incredible husband Adam had a day in the life of moi at the hospital with mr. Logan. At noon I called Adam to see if anything exciting was happening. Nope, he says...Logan's been sleeping & watching t.v. all morning (surprise, surprise). Our GI doctor came to see Adam in the morning to say that scope confirmed that nothing was seen to be wrong in the upper & lower GI, and the partial blockage they thought they seen on the barium x-ray was just a shadow. Sigh. Nothing. Still no answers. However they wanted to run more blood work yesterday to check a few other things - Adam says he wasn't really sure what for and at that point he just said go ahead! That all came back normal as well. We are thankful that Dr. Zachos is speedy on trying more things everyday, its just a huge disappointment to keep looking and coming back with no answers. They wanted to then perform an x-ray on Logan's chest (the heart, spleen, liver, and kidneys) to see if anything was abnormally small or large. Just before Logan had to go for his x-ray he decided to throw a wrench in everything and pull is feeding tube out! He was off of his feed again from 2pm until 6pm since he pulled the tube out, was waiting for his x-ray on the chest & then also needed an x-ray to make sure the new ng tube was in the right place. By 6:30pm and he was all hooked up again and Adam thought they had enough excitment for one day. Guess again! At 8:30pm last night Logan decided he was going to show them who's boss. He probably hates his feeding tube in the worst way, and so he pulled it out again...make that 12 times pulling it out!! New ng tube gets put in much to his dismay and back down they go to get another x-ray to check the placement - Logan grinning from ear to ear all the way down, free from his tubes. Logan was finally hooked up and feeding again by 10pm. Adam got Logan all settled & tucked in all nicely in the crib and headed back to the Ronald McDonald house for the night. I was told later on at night that he gives me alot of credit, he doesn't understand how I can sit at the hospital day in and day out like that. Thanks for the credit hun, but it isn't a choice...you just DO IT because you have to! :)
This morning I arrived at the hospital to a sleeping, beautiful baby. He was grinning in his sleep while I watched him, so I like to think he was having good dreams. Maybe good dreams of going home for Christmas?? Our doctors informed us that they do not really have any clues as to where to go next, but they assured us they will keep looking! In the meantime they told us that we better get it into our heads that we will most likely be here over Christmas. They are not planning on sending us home until they diagnos Logan, or they seen a sufficient weight gain, which could take awhile. The term "I'll be home for Christmas..." just took on a whole new meaning to me. As my brother in law Tim reminded me this morning - Christmas is still 3 weeks away, and hey if you do end up here it isn't ideal, but in hind sight what is one Christmas here at the hospital compared to the rest of Logan's life. Our kids won't remember and it sure will be a different way to spend the holidays, but we will make it work. According to my mom & sisters, "We'll just bring Christmas to you!" Maybe, by some miracle they will find something sooner and we can go home, but if not we will not let it get us down, we will make the most of it. They did however talk to us about POSSIBLY getting Logan a day pass for Hannah & Mike's wedding tomorrow. If everything goes well today, then the doctors don't see why not, they'll let us know tonight what they think. That would be amazing!! For all those taking shifts with Logan tomorrow, we will let you know ASAP if he will be able to come with us for the day, but we thank-you in advance for your willingness to help us out.
I guess I should explain what I mean by if everything going well today. Dr. Zachos has ordered an MRI to be done on Logan's brain today. We're not sure what time - they are scheduling something as we speak. She believes that we need to start looking in that area since the gastral area had no signs of anything wrong. We also need to discuss Logan's feeds. They have increased his feed by 3ml per hour. Adam & I thought that's not much at all and we should do more, unfortunately though Logan started vommitting again through the night, they just aren't sure if its because they've increased the feeds or if it is because he had a new ng tube down his throat twice yesterday causing him to gag. We will know more today while we monitor his feeds. They are hoping if we increase the feeds and add more calories it will slowly help Logan to put on more week. Time will tell I guess. They also want to try to get him off of the continuous feeds and back to bolus feeds. As long as Logan is on a continuous feed he can not have a g-tube put in through the stomach, but if we can get him back to bolus feeds every three hours he is then a candidate to get a g-tube put in. It is too dangerous to have an infant on continuous feeds with a g-tube, so as of right now unfortunately the ng tube is better for him until we get him eating every 3 hours again. I also met with a doctor from Endocrineology this morning who evaluated Logan and assured me that although Logan is having a hard time gaining weight he is a healthy child. He is reaching milestones, following with his eyes, smiling, cooing, has great head control, etc...his lungs are clear, heart is good, there is no reason to say this child is not healthy. Then he told me he just has a severe case of reflux. I gave him a smile and said, your right he does have reflux, but I'm sorry to have to correct you...this is not just reflux. Logan's reflux is under control with medication and he doesn't vomit up his entire feeds anymore, so why then is he not gaining weight? The doctor said honestly that he doesn't know and it doesn't make sense because if indeed the reflux is under control, with time he should have been gaining by now. Exactly! So yes he has reflux, but there has to be something more to it.
This is as far as the story goes right now. It is 11:30am and I will be waiting today to have the MRI done, and of coarse I will enjoy a couple of visits with some family & friends this afternoon. Also keeping my fingers crossed that Logan can possibly have a day pass tomorrow and spend time with his family! I'll let you all know if anything changes. Perhaps this MRI will tell us more...
In the meantime here's a laugh for you. The picture Adam sent to my phone entitled:
"Look mom, no tubes!". You just gotta love him!
Wednesday, 28 November 2012
The Many Faces of Logan
After a rough night with the iv in and no feeds.
Come on Logan, just a grin? You can do better then that!
There are the big smiles from our sweet boy! He is probably so happy
because after many failed attempts in the last few days,
he was finally successful in pulling out
because after many failed attempts in the last few days,
he was finally successful in pulling out
his ng tube, right before going for the scope!
The porter took Logan for a ride down to the surgical ward and
the entire time Logan sat up like this, looking around & being nosy
of what's going on (so typical!). We stopped so many times because people
couldn't get enough of how cute he is, and they can't understand how
a little babe this small can be so strong, holding his head up so well. :)
Waiting after surgery in recovery.
He was so happy to have his fingers back.
Still a little groggy for a few hours, but safe in dad's arms.
Aunt Rachel LOVES me! And we love getting visits from her!
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