So, we must say goodbye to our room today. We are going home. Silas will surely miss his PICU friends, his safari mobile, and all the extra cuddles and hugs from everyone. But, this is a good thing. While we don't have the concrete answers we had so hoped for, we are confident that this too is a process. Numerous tests have been sent off, follow-up appointments have been made, monitors and training sessions have been given and scheduled. It is a work in progress, like so much of life, when you have a medically involved cchild.
I would like to extend a public and heartfelt welcome to all of the people who have come together to offer support, encouragement, love, and meet tangible needs.
To Ultimate Faith church and our family there- we are honored by your big hearts and grateful for your love. We can't wait to be back in God's House and worship with you.
To Cynthia, Ma D, Bri & Daniel, and all of our visitors who cheered us up and prayed over our son, THANK YOU. You made this a little easier.
To those who have helped take care of my beautiful girls, grandma and grandpa, Amanda and Emma, I couldnt be here fighting for answers if I had any doubt that my girls were okay. You put my mind at ease and you make a difficult road a little less treacherous. My girls love you all. Just ask them!
To our many Doctors, Nurses, housekeeping staff, cooks, and therapists at the hospital, we are blessed beyond measure through your service. Thank you for making us feel like family, for treating us as if you had nowhere else to be, and for putting up with our many questions.
For all the prayer warriors that number in the hundreds, for all the facebook messages that were sent privately, for all the phone calls that were made, we are so grateful and appreciative. There is so great a love. It was all these things that reminded me to keep the faith, that bolstered me when I was in tears. Thank you.
And GOD bless you each abundantly. May we be so able to serve you in your time of need!
Sarah
Tuesday, April 9, 2013
You Cant Compare, My Love
One of the most difficult things of being the parent of a child developing a little slower than typical is that everywhere you go, some happy parent, proud grandma, or well-meaning friend wants to talk about milestones. And if that were not enough, as a mother you are surrounded by other mothers with other babies. I see friends' children eating textured food, crawling, pulling up on things, clapping their hands, reaching for mommy and daddy, saying mama and dada and it sometimes makes my heart ache. I know children grow and develop on their own. And I know that Silas is a little behind the rest because of his slower brain development. But I also know as a mother how beautiful those milestones are, and how my heart longs to share them with my friends rather than just nod and smile and say "soon.." I'm in no hurry to make my boy grow up, because I cherish every precious giggle, smile, coo, and snuggle. This phase passes so fast and you don't get it back.
Even if you are a little slower or a little tipsier, Silas, you are amazing and precious. You can't compare, my love. God hand-picked you just for us and you and your sisters bring us the greatest joy. Love you my handsome Frog Prince :)
Even if you are a little slower or a little tipsier, Silas, you are amazing and precious. You can't compare, my love. God hand-picked you just for us and you and your sisters bring us the greatest joy. Love you my handsome Frog Prince :)
Monday, April 8, 2013
Why Concrete Answers Matter
When your child has a breathing episode, the last thing you think of is what you need to take to the hospital. The first and most consuming thought is making it there in time. Once you are there, the goal is single-purposed: find out why it happened and how to prevent or treat it.
The Doc was just in. Silas' EEG confirms NO seizure activity, even during the breating spells. His blood and urine culture are clean after 24 hours. Waiting to hear on the spinal fluid culture yet. So far, we have NO IDEA what set off the fever or the cyanosis and apneic breathing spells. He hasn't had any since yesterday afternoon. There was mention of 'the earliest we could send you home might be tomorrow.'
I am THRILLED Silas is doing better, but I DONT want to leave here without knowing what to expect, without answers as to whether this will happen again.
While driving to the hospital, I had both eyes on the road and both ears on the sound of my son's breathing. When we got stopped at a railroad crossing, I had 911 on the phone explaining the situation. I was seconds away from an ambulance ride when the crossing opened and cars started moving. The whole way there I kept talking to silas, willing him 'BREATHE!' and counting the seconds between breaths. When we pulled upto the ER I literally RAN in with my son and said to the nurse "my son is having breathing difficulty." Only once he was in a room and being taken care of did i stop to breathe and think about what had happened.
So, YES concrete answers matter, especially in a situation like this. Please keep praying that God give the Doctor and Nurse taking care of Silas pieces to the puzzle, wisdom in their investigation, and even if needed more episodes in our current controlled environment to analyze in order to figure out the cause.
I come against any confusion, hiddenness, and attempts of the enemy to keep us in disarray and speak conclusive, revealed medical proof of what is and had occurred. We stand on faith that this will be brought to LIGHT so that it can be dealt with AT THE ROOT CAUSE. In jesus name, amen.
The Doc was just in. Silas' EEG confirms NO seizure activity, even during the breating spells. His blood and urine culture are clean after 24 hours. Waiting to hear on the spinal fluid culture yet. So far, we have NO IDEA what set off the fever or the cyanosis and apneic breathing spells. He hasn't had any since yesterday afternoon. There was mention of 'the earliest we could send you home might be tomorrow.'
I am THRILLED Silas is doing better, but I DONT want to leave here without knowing what to expect, without answers as to whether this will happen again.
While driving to the hospital, I had both eyes on the road and both ears on the sound of my son's breathing. When we got stopped at a railroad crossing, I had 911 on the phone explaining the situation. I was seconds away from an ambulance ride when the crossing opened and cars started moving. The whole way there I kept talking to silas, willing him 'BREATHE!' and counting the seconds between breaths. When we pulled upto the ER I literally RAN in with my son and said to the nurse "my son is having breathing difficulty." Only once he was in a room and being taken care of did i stop to breathe and think about what had happened.
So, YES concrete answers matter, especially in a situation like this. Please keep praying that God give the Doctor and Nurse taking care of Silas pieces to the puzzle, wisdom in their investigation, and even if needed more episodes in our current controlled environment to analyze in order to figure out the cause.
I come against any confusion, hiddenness, and attempts of the enemy to keep us in disarray and speak conclusive, revealed medical proof of what is and had occurred. We stand on faith that this will be brought to LIGHT so that it can be dealt with AT THE ROOT CAUSE. In jesus name, amen.
Sunday, April 7, 2013
Puzzle Mania: update 4/7/13
so, theres not a ton new, but here is what we know today.
1) His white blood count is down from 28000 to 11500 (cut in half, God be glorified)
2) His c-reactive proteins are high. Normal is less than 1. His was 5. This indicates there is infection/inflamation somewhere in his body.
3) His fever is under control. Yay, prayer answered!
4) cultures might come back tomorrow... might!
5) His EEG comes off tonight.
Another thing we are studying is whether his apnea is part of the infectionor alongside it. We removed oxygen today, to get a better picture of what these apnea spells look like.
Still praying for conclusive answers. Still here. And so blessed. Thank you to all our visitors, family who have called, friends and family who have watched out for my girls and husband in my absence, and those who have brought goodies for me. We covet your prayers mostly and stand on FIRM FAITH that we WILL have concrete answers and healing for our beautiful boy!
1) His white blood count is down from 28000 to 11500 (cut in half, God be glorified)
2) His c-reactive proteins are high. Normal is less than 1. His was 5. This indicates there is infection/inflamation somewhere in his body.
3) His fever is under control. Yay, prayer answered!
4) cultures might come back tomorrow... might!
5) His EEG comes off tonight.
Another thing we are studying is whether his apnea is part of the infectionor alongside it. We removed oxygen today, to get a better picture of what these apnea spells look like.
Still praying for conclusive answers. Still here. And so blessed. Thank you to all our visitors, family who have called, friends and family who have watched out for my girls and husband in my absence, and those who have brought goodies for me. We covet your prayers mostly and stand on FIRM FAITH that we WILL have concrete answers and healing for our beautiful boy!
Too Many Needles, Not Enough Hay
Its wee hours of the morning, and I can't sleep. For those who are not aware, Silas is in the PICU. He was admitted 346 Saturday morning with a 102.2 Temperature and respiratory distress, code blue.
The fever pointed to infection so once we had a room on the Pediatric floor we began collecting blood work, urine for analysis, and a lumbar puncture to check for meningitis. They did a chest xray in triage to check for pneumonia reoccurrence and it was clear. The lab work has not come back yet, except he was negative for influenza and RSV.
We were moved to PICU around 7 Saturday evening following a possible seizure and some slowed respirations. When moved over, the PICU nurse was able to listen with a stethoscope during an episode and discovered apnea. It was quite scary to hear "he is not breathing right now. He is apneic." So we are trying to find the cause of this as well, and whether it relates to his illness.
Silas is on several monitors, has an IV, and is currently being video recorded. He is very cranky at times, as you can imagine after all he has been through, but he still is a sweetheart, albeit a pitiful looking one at the moment.
For anyone who would like to call or visit, vising hours at the PICU are 9am-9pm. You must check in at the desk in the main lobby to get a pass. Please call or message Sarah to make certain we are not out at testing or otherwise isnt feeling available to visitors.
We covet your prayers at this time and thank you immensely for them. God speed.
The fever pointed to infection so once we had a room on the Pediatric floor we began collecting blood work, urine for analysis, and a lumbar puncture to check for meningitis. They did a chest xray in triage to check for pneumonia reoccurrence and it was clear. The lab work has not come back yet, except he was negative for influenza and RSV.
We were moved to PICU around 7 Saturday evening following a possible seizure and some slowed respirations. When moved over, the PICU nurse was able to listen with a stethoscope during an episode and discovered apnea. It was quite scary to hear "he is not breathing right now. He is apneic." So we are trying to find the cause of this as well, and whether it relates to his illness.
Silas is on several monitors, has an IV, and is currently being video recorded. He is very cranky at times, as you can imagine after all he has been through, but he still is a sweetheart, albeit a pitiful looking one at the moment.
For anyone who would like to call or visit, vising hours at the PICU are 9am-9pm. You must check in at the desk in the main lobby to get a pass. Please call or message Sarah to make certain we are not out at testing or otherwise isnt feeling available to visitors.
We covet your prayers at this time and thank you immensely for them. God speed.
Sunday, March 31, 2013
What We Can Do
Happy 8 Months to my beautiful boy!
A few things he is now doing a little.better than before.
Staying in a seated position
Grabbing at things
Attempting foods (puree)
'ba' sound
What we are working on: hand to mouth coordination (lots of trembling), dropping hips for all-fours position (he hates this and cries much!), texture sensitivity and gag reflex.
Upcoming Stuff:
Follow Up for Breathing Treatments
Follow Up G.I.
Follow Up Urology
9 Month Well-Check
A few things he is now doing a little.better than before.
Staying in a seated position
Grabbing at things
Attempting foods (puree)
'ba' sound
What we are working on: hand to mouth coordination (lots of trembling), dropping hips for all-fours position (he hates this and cries much!), texture sensitivity and gag reflex.
Upcoming Stuff:
Follow Up for Breathing Treatments
Follow Up G.I.
Follow Up Urology
9 Month Well-Check
Sunday, March 17, 2013
Missing Pieces: Long Overdue Update
A few things I have forgotten to mention here, or have not updated on lately. Sorry, January-March was a really tough time for us medically speaking.
Medical Mumbo Jumbo
Silas caught a cold in January, around the time of his 6 month checkup. On February 2nd he was diagnosed with bacterial pneumonia. We did a round of antibiotics and checked back in with the Doc middle of the month. "It takes a few weeks for the cough to resolve" but his was still not better a month later, so we took him back again. They gave us breathing treatments, a second round of antibiotics, and a follow-up appointment in 4 weeks to discuss stopping the breathing treatments. So we are currently doing pulmicort twice a day and albuterol as needed. We finished the second round of antibiotics on Wednesday. Yesterday (Saturday) I forgot to give him his treatments and this morning he woke up sounding just as bad as before we began them. We go back early April to discuss all this. My gut says we may be doing treatments for a while, and that was something mentioned at the prescribing visit, that if he stopped them and sounded worse within a day or two, we might try doing them for 3, 4, or 6 months. Okay, I'm fine with that but my burning question is WHY is he having all this congestion. His pneumonia looks to be gone, so what is causing all this to stay in his system? No one else in the house has caught anything from him, so we know that he isn't just getting cold after cold. We have all been healthy except for that onset cold that we all had where his turned into pneumonia.
Another thing we haven't discussed (more because I am waiting on results than anything) on our blog is that Silas recently underwent a 72 hour EEG. I know I talked about the 15 minute one but after that we were still having activity looking stuff and I sent the videos to his neurologist who decided on the 72 hour EEG just to make sure we weren't missing anything with the short version. That came off on Thursday, still no results. The worst part about this particular EEG is that he now has little sores all over his head from the electrodes. They should clear, and we hope they don't scar. I'll be sure to post photos soon.
Food & Therapy
Silas has since our last post began his CDSA interventions. We LOVE our therapist! She comes out to the house once a week and works with us and the baby to get him moving and developing strength and abilities for his next milestone. She brings goodies for him too, toys he hasn't seen before, and swaps them out with others he is tired of. Our first goal we are working on is trying to introduce some food. This goal is honestly the one that scares me the most. Silas has done okay with it, but it is definitely not consistent. He still has a very sensitive gag reflex and so lots of what he tries comes back out at us, and yes that's fun getting all covered in baby slobber and food particles. So far we have tried real oatmeal mixed with breastmilk, mashed peas, green beans, broccoli, a taste of yogurt, and yesterday I let him gum on a cucumber slice. He has no teeth yet. He really seemed to enjoy sucking the life out of the cucumber. Most of what he tries is only a few bites and half of that doesn't stay in. We have had small luck with fruit puffs that dissolve in the mouth on occasion. He likes to play with his spoon and can get it to his mouth on his own, so I often put something on it and let him have it to play with and he seems to really enjoy this kind of early self-feeding. We only do this about once every other day, as it does seem to tire him out having to sit in the highchair. It also seems to increase his hand tremors (probably because he is developing a new set of muscles he hasn't needed before).
My daughters have had the chance to meet the therapist and they always ask when she is coming and if they will get to be there. They are really looking forward to activities they can do WITH their baby brother. We are incorporating signs for "eat," "more," "milk," "mommy," and "daddy" into our daily interactions. Loving that!
Well, I think that's all for now. I will try and post some photos soon on the blogs. I haven't done that lately. Have a great week and I will get better at doing this again very soon. Oh, for those of you wondering, I still have the caringbridge site but there is something going on there and I cannot get into it to update right now, which is why I am posting here and not there for the time being. Blessings, love and light :)
Medical Mumbo Jumbo
Silas caught a cold in January, around the time of his 6 month checkup. On February 2nd he was diagnosed with bacterial pneumonia. We did a round of antibiotics and checked back in with the Doc middle of the month. "It takes a few weeks for the cough to resolve" but his was still not better a month later, so we took him back again. They gave us breathing treatments, a second round of antibiotics, and a follow-up appointment in 4 weeks to discuss stopping the breathing treatments. So we are currently doing pulmicort twice a day and albuterol as needed. We finished the second round of antibiotics on Wednesday. Yesterday (Saturday) I forgot to give him his treatments and this morning he woke up sounding just as bad as before we began them. We go back early April to discuss all this. My gut says we may be doing treatments for a while, and that was something mentioned at the prescribing visit, that if he stopped them and sounded worse within a day or two, we might try doing them for 3, 4, or 6 months. Okay, I'm fine with that but my burning question is WHY is he having all this congestion. His pneumonia looks to be gone, so what is causing all this to stay in his system? No one else in the house has caught anything from him, so we know that he isn't just getting cold after cold. We have all been healthy except for that onset cold that we all had where his turned into pneumonia.
Another thing we haven't discussed (more because I am waiting on results than anything) on our blog is that Silas recently underwent a 72 hour EEG. I know I talked about the 15 minute one but after that we were still having activity looking stuff and I sent the videos to his neurologist who decided on the 72 hour EEG just to make sure we weren't missing anything with the short version. That came off on Thursday, still no results. The worst part about this particular EEG is that he now has little sores all over his head from the electrodes. They should clear, and we hope they don't scar. I'll be sure to post photos soon.
Food & Therapy
Silas has since our last post began his CDSA interventions. We LOVE our therapist! She comes out to the house once a week and works with us and the baby to get him moving and developing strength and abilities for his next milestone. She brings goodies for him too, toys he hasn't seen before, and swaps them out with others he is tired of. Our first goal we are working on is trying to introduce some food. This goal is honestly the one that scares me the most. Silas has done okay with it, but it is definitely not consistent. He still has a very sensitive gag reflex and so lots of what he tries comes back out at us, and yes that's fun getting all covered in baby slobber and food particles. So far we have tried real oatmeal mixed with breastmilk, mashed peas, green beans, broccoli, a taste of yogurt, and yesterday I let him gum on a cucumber slice. He has no teeth yet. He really seemed to enjoy sucking the life out of the cucumber. Most of what he tries is only a few bites and half of that doesn't stay in. We have had small luck with fruit puffs that dissolve in the mouth on occasion. He likes to play with his spoon and can get it to his mouth on his own, so I often put something on it and let him have it to play with and he seems to really enjoy this kind of early self-feeding. We only do this about once every other day, as it does seem to tire him out having to sit in the highchair. It also seems to increase his hand tremors (probably because he is developing a new set of muscles he hasn't needed before).
My daughters have had the chance to meet the therapist and they always ask when she is coming and if they will get to be there. They are really looking forward to activities they can do WITH their baby brother. We are incorporating signs for "eat," "more," "milk," "mommy," and "daddy" into our daily interactions. Loving that!
Well, I think that's all for now. I will try and post some photos soon on the blogs. I haven't done that lately. Have a great week and I will get better at doing this again very soon. Oh, for those of you wondering, I still have the caringbridge site but there is something going on there and I cannot get into it to update right now, which is why I am posting here and not there for the time being. Blessings, love and light :)
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