I forgot to update about Micah earlier this week. The boys had a well check last week. They usually do really well at the pediatricians office, but they were more than a hand full this time, to say the least. Ben refused everything! He was being a true 3 year old. Micah did ok, but he really doesn't like doctors in general. From the exams she could get out of them, they both look good. Micah is growing but he is still not up to where they want to see him. The only thing that really came up is that she heard a slight heart murmur, which she said normally wouldn't concern her but, since he has GSD and now a sister with a heart disease, she wants him to get an EKG done. We are not thrilled about this. It is another appointment at the Children's Hospital, another co-pay, another hard morning for Micah. But we are scheduled for next week to do it, and make sure he is fine.
I talked to Micah's metabolic/genetic doctor this week about his lab results and my genetic testing results. Micah's tests (the ones that took 4 tries to get the blood for) came back good but still not at normal levels. His doctor said the goal is for his levels to be in the normal range but he is not sure if that is possible for Micah. They are glad that there was a slight drop, but they are hoping to see it continue to slowly improve over time. As those blood levels are slowly dropping, he should also start to catch up to his normal growth curve and his liver should go down in size. They are hoping that his growth will catch up to normal by his second birthday, in six months. They are sure that the 2 am corn starch and the high protein diet is what is making him better. They want to see him one more time before Maelyn is born to check his growth and liver, and they know we wont be able to bring him for a while after she is born.
They increased the 2 am dose again, so now he is basically drinking a milk paste at night... The 2 am feedings are getting harder. He is not drinking it as well, Tim is starting to sleep through the alarm/doing it and the last time I tried, Micah screamed for mommy and Tim had to go in anyway to lay him down again. Bless my husband! He is a trooper, getting up every night and going right back to sleep. In less than 3 weeks, the boys are going to be sharing a room and Micah is going to move to a big boy bed... So the 2 am thing might get even harder.
My genetic testing showed that I am a carrier for the genetic mutation that Micah has. This means that my mom is a carrier and her mom was and her mom was, ect... Yet Micah is the first male in the family to have the disease, but I think I am the first to have more than one boy. Our genetics doctor wants to test my sister so see if she is a carrier. I am not sure what my sister wants to do, but if she is a carrier, her daughter might want to get tested one day. The males in the family don't have to worry about it. Even if Micah has a son one day, he doesn't have to worry, but if Micah has a daughter, she will also be a carrier. Doesn't this bring you back to high school science class?
It is also starting to get harder to keep sugar away from Micah... Between potty training and Easter, Ben (and I) have had a lot of candy and Micah totally notices now. I used to be able to trick him or keep it out of his sight, but he is getting smarter! And Ben, the sweet brother he is, wants to share. Today Ben went and got himself an M&M because he peed on the potty, and he let Micah pick one out too. At the Easter egg hunt I brought Micah his own eggs with stickers and gold fish, but that just isn't going to work next year. I know we are going to have to get rid of cookies and candy as a family, but what do I do at parties and holidays? And I should specify, he also can't really have "sugar free" candies either because he shouldn't have the artificial sweeteners either. The only "safe" sugar is Stevia. I am glad that it is not a huge deal if he has one M&M. The dietitian said he can have a treat every now and then, but his sugar intake should really be limited to his dairy and fruit needs. He is only supposed to have a certain number of grams of sugar per meal/day. Honestly, I don't keep that close of track to his actual sugar intake, but I know that adding one candy is going to limit what he should have the rest of the day. And I should probably keep track of that, as he gets older and pickier!
Over all Micah is doing great! We feel like he has changed so much over the last couple months, since starting the corn starch. He is so much happier, and he has a ton more energy! He has started walking and climbing everything. He has finally gotten more hair! He tries so hard to keep up with Ben and is starting to hold his own against him. They are starting to become rough and tumble boys. Micah started to climb up the slide and go down it by himself (with someone there to catch him) this past weekend! (Ben didn't do that until this past year!) He loves to climb and play chase and peek a boo and "wrestle" aka roll around giggling. He is still pretty sensitive though. If he falls down or something happens he doesn't like he will scream your ear off for about a half hour. And he is still a huge momma's boy.
Showing posts with label Glycogen storage disease. Show all posts
Showing posts with label Glycogen storage disease. Show all posts
Friday, April 10, 2015
Saturday, January 10, 2015
1 in (over) 100,000
I always knew God created Micah and made him unique and blessed but listen to this! Glycogen Storage Disease is said to be found in 1 of 100,000 newborns, and of those there are over 10 different types of the disease one could have. The majority of people diagnosed have either type 1a or type 1b. We know Micah is not a type 1. That kind of blows my mind how rare this whole thing is. He really is one in a million! I've been getting anxious to know what type of glycogen storage disease Micah has. Once we know what type we will know more about what is going on in that little body of his. Part of me is worried that he wont even fall into any of the known types because the disease has so many variations and his symptoms are so different than most. But that would just make him even more unique than he already is. When I talk to the doctors this week I will ask if they have heard anything yet.
We've done two nights of 2 am wake ups. Tim, AKA super daddy, has been getting up for it. I am usually awake in bed during it anyway but I fall back to sleep right away if I don't get out of bed. (If I get out of bed I'm usually awake for at least an hour). I know eventually it will become a routine and we will take turns and hopefully I will learn to sleep through Tim's turn and fall asleep faster on my turn.
I am not a doctor. I need to remember that because these ketone level numbers just do not seem to make sense to me. I'm hoping the doctors feel differently. I have been wondering if somethings is wrong with our monitor and we finally decided to test it tonight. It tested fine, but I think there is just a larger margin of error for every read than I would like. The reason we have not wanted to test it is, the ketone strips are $2 each, so I didn't want to waste one on a test. The reading is to the nearest 0.1 and the test said that the monitor is functioning properly if the test result was between 0.5-1.1. So does that mean that there is a 0.6 margin of error every time? I guess if there is then maybe his levels do make sense? Again, I am not a doctor.
So I had heard about this program and Doctor Weinstein, and when I was looking at the site I thought to myself, wow that is a much better explanation that I could ever give. So here is a website that gives a lot of great, easy to understand, information on Glycogen Storage Disease in case my attempt was not quite enough. UFHealth Glycogen Storage Disease Program
We've done two nights of 2 am wake ups. Tim, AKA super daddy, has been getting up for it. I am usually awake in bed during it anyway but I fall back to sleep right away if I don't get out of bed. (If I get out of bed I'm usually awake for at least an hour). I know eventually it will become a routine and we will take turns and hopefully I will learn to sleep through Tim's turn and fall asleep faster on my turn.
I am not a doctor. I need to remember that because these ketone level numbers just do not seem to make sense to me. I'm hoping the doctors feel differently. I have been wondering if somethings is wrong with our monitor and we finally decided to test it tonight. It tested fine, but I think there is just a larger margin of error for every read than I would like. The reason we have not wanted to test it is, the ketone strips are $2 each, so I didn't want to waste one on a test. The reading is to the nearest 0.1 and the test said that the monitor is functioning properly if the test result was between 0.5-1.1. So does that mean that there is a 0.6 margin of error every time? I guess if there is then maybe his levels do make sense? Again, I am not a doctor.
So I had heard about this program and Doctor Weinstein, and when I was looking at the site I thought to myself, wow that is a much better explanation that I could ever give. So here is a website that gives a lot of great, easy to understand, information on Glycogen Storage Disease in case my attempt was not quite enough. UFHealth Glycogen Storage Disease Program
Thursday, January 8, 2015
Thoughts on 2 am feedings
Having your baby out grow 2 am feedings is usually a mile stone that parents thoroughly rejoice over. And let me tell you, it took us a long time to get Micah sleeping through the night, so we were beyond thrilled when we stopped feeding him at night. You never think that you will have to wake yourself up at a horrible hour ever again to feed that baby who is growing into a child. So when that became an option, Tim and I were both totally against it. It was mentioned when Micah was discharged from his hospital stay for the biopsy and we basically ignored it. Then when his morning glucose levels seemed fine we put it out of our minds. We had worked so hard to get Micah sleeping well and he's only been doing a great nights sleep for a couple months. The thought of changing that back is just a huge bummer. But now, knowing why it was so hard to get him to sleep all night, makes me feel horrible. His little body was in distress and his blood sugar was dropping, possibly dangerously, low. We were asked several times if he ever had seizures or periods of unconsciousness. We always said no, because, that we know of he didn't, but I wonder sometimes what happened to him at night when we had to just let him scream. I try not to think about it. God was protecting him, and every morning he woke up fine.
Now he is a great sleeper and will even hang out in his crib after he wakes up in the morning. But now when he wakes up, I feel a panic to get in there and get him fed. And some mornings he is a little bit more groggy and doesn't seem to feel well when I get him up. On the worst days he will throw up. It wasn't until about two weeks ago that I made the connection to his weird mornings and his disease. With kids, you generally know you will never sleep in again, but with Micah, I can't ever sleep in again, because he needs to eat something ASAP in the mornings. And now, there is a chance we will not even get an uninterrupted nights sleep for the next 5 or so years. Knowing we will have a new a newborn to feed all night long in 5 months is enough of a sleep stresser. I can't imagine having an alarm set for 2 am with a newborn sleeping next to me. As I have been trying to prepare myself for this, all I can say is pray for us! Lord prepare me! Pray that I handle all of the new sleep schedules well and that God gives me extra strength! Pray that when baby comes he/she is a good sleeper from the start and that babies schedule quickly lines up with Micah's.
After a huge hassle and headache, it took us over 2 weeks to get a hold of the ketone blood strips. So we start the 2 am feedings tonight and talk to the doctors on Monday to see what they think of the ketone levels.
Psalm 29:11 The Lord gives his people strength and blesses his people with peace.
I also wanted to share a song that has been on my heart. I've been thinking about the whole "Word of the Year" devotional thing, and even though my one word is still working itself out, this is definitely my 'song of the year'.
Love & The Outcome - Heart Like You
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| Micah at 1 week and Ben at 18 months. |
Now he is a great sleeper and will even hang out in his crib after he wakes up in the morning. But now when he wakes up, I feel a panic to get in there and get him fed. And some mornings he is a little bit more groggy and doesn't seem to feel well when I get him up. On the worst days he will throw up. It wasn't until about two weeks ago that I made the connection to his weird mornings and his disease. With kids, you generally know you will never sleep in again, but with Micah, I can't ever sleep in again, because he needs to eat something ASAP in the mornings. And now, there is a chance we will not even get an uninterrupted nights sleep for the next 5 or so years. Knowing we will have a new a newborn to feed all night long in 5 months is enough of a sleep stresser. I can't imagine having an alarm set for 2 am with a newborn sleeping next to me. As I have been trying to prepare myself for this, all I can say is pray for us! Lord prepare me! Pray that I handle all of the new sleep schedules well and that God gives me extra strength! Pray that when baby comes he/she is a good sleeper from the start and that babies schedule quickly lines up with Micah's.
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| Ben and Micah, just over a year later. |
After a huge hassle and headache, it took us over 2 weeks to get a hold of the ketone blood strips. So we start the 2 am feedings tonight and talk to the doctors on Monday to see what they think of the ketone levels.
Psalm 29:11 The Lord gives his people strength and blesses his people with peace.
I also wanted to share a song that has been on my heart. I've been thinking about the whole "Word of the Year" devotional thing, and even though my one word is still working itself out, this is definitely my 'song of the year'.
Love & The Outcome - Heart Like You
Tuesday, January 6, 2015
Christmas/New Years
The ketone monitor and strips ended up being difficult to find. Once we got it, we started Micah on the one teaspoon, then had to up it to two teaspoons because Micah's ketone levels in the mornings were not improving and were not good. Even on the two teaspoons, his ketones didn't change and didn't seem to show any trend. We were told we needed to check his ketone and glucose levels at 2 am as well as in the morning. So my amazing husband got up at 2 am and checked Micah's ketone and glucose levels. Micah did great, he didn't mind being woken up and he has never seemed to care about the finger pricks.
I talked to the doctor a couple days before Christmas and he said that we needed more 2 am blood checks to try and see what his nights look like. The doctor mentioned that we might need to do a planned inpatient at the hospital so that they can do regular blood draws through out the night for a couple nights. This terrified me, I do not want to do this. So, he asked us to do three nights however we only had four test strips left and since they are had to get a hold of we could only do two nights. Tim had come down with the flu, so it was mommy's turn to do the 2 am thing. I decided to skip Christmas with the 2 am wake up, so check it the morning before Christmas and the morning after Christmas.
Unfortunately, I got sick the day before Christmas. So Christmas day Tim and I were super sick, but the boys were feeling fine and Tim's parents came to visit. We still had a lazy fun Christmas with plenty of gifts and Christmas movies. We delayed Christmas dinner until the next day. But as soon as we sat down for our big Christmas dinner, Ben got sick. So we ate in shifts and it was a little less appetizing. Ben recovered quickly, luckily Micah never got sick. Tim's parents stayed for a week, through new years. We did nothing all week. By New Years eve we were feeling better and managed an awesome crab dinner (my absolute favorite)! We were able to facetime with Tim's siblings. We stayed up until 10 and watched the ball drop with the east coast, it was perfect.
After Christmas the doctor called me to talk about how the 2 am levels were. I told him we did two nights and ran out of strips and couldn't get any more. The doctor explained that the corn starch at 2 teaspoons is working but only for 6 hours. Apparently corn starch has a 6 hour digestive life span. So we need to give him 2 more teaspoons at 2 am. I really pushed to see if a higher dose would work because getting up every night at 2 am is the last thing I want. But the doctor said that probably will not work so it is best medicine for him to tell me to do the 2 am feeding.
Since we were out of test strips he said we can wait to try the 2 am feedings until we have them, otherwise we wont know if it is working. Once we get the strips (which should be today) we will start waking Micah up at 2 am and giving him corn starch and checking his blood levels. After three nights I am to call the dietician who will talk to the doctors and they will get back to me with a new game plan. There is a chance they will try going back to corn starch just before bed but based on what I've seen and heard about corn starch/ketone levels, it sounds like the most likely outcome is that we will be getting up at 2 am every night for the foreseeable future.
I talked to the doctor a couple days before Christmas and he said that we needed more 2 am blood checks to try and see what his nights look like. The doctor mentioned that we might need to do a planned inpatient at the hospital so that they can do regular blood draws through out the night for a couple nights. This terrified me, I do not want to do this. So, he asked us to do three nights however we only had four test strips left and since they are had to get a hold of we could only do two nights. Tim had come down with the flu, so it was mommy's turn to do the 2 am thing. I decided to skip Christmas with the 2 am wake up, so check it the morning before Christmas and the morning after Christmas.
Unfortunately, I got sick the day before Christmas. So Christmas day Tim and I were super sick, but the boys were feeling fine and Tim's parents came to visit. We still had a lazy fun Christmas with plenty of gifts and Christmas movies. We delayed Christmas dinner until the next day. But as soon as we sat down for our big Christmas dinner, Ben got sick. So we ate in shifts and it was a little less appetizing. Ben recovered quickly, luckily Micah never got sick. Tim's parents stayed for a week, through new years. We did nothing all week. By New Years eve we were feeling better and managed an awesome crab dinner (my absolute favorite)! We were able to facetime with Tim's siblings. We stayed up until 10 and watched the ball drop with the east coast, it was perfect.
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| Christmas morning, opening stockings. |
After Christmas the doctor called me to talk about how the 2 am levels were. I told him we did two nights and ran out of strips and couldn't get any more. The doctor explained that the corn starch at 2 teaspoons is working but only for 6 hours. Apparently corn starch has a 6 hour digestive life span. So we need to give him 2 more teaspoons at 2 am. I really pushed to see if a higher dose would work because getting up every night at 2 am is the last thing I want. But the doctor said that probably will not work so it is best medicine for him to tell me to do the 2 am feeding.
Since we were out of test strips he said we can wait to try the 2 am feedings until we have them, otherwise we wont know if it is working. Once we get the strips (which should be today) we will start waking Micah up at 2 am and giving him corn starch and checking his blood levels. After three nights I am to call the dietician who will talk to the doctors and they will get back to me with a new game plan. There is a chance they will try going back to corn starch just before bed but based on what I've seen and heard about corn starch/ketone levels, it sounds like the most likely outcome is that we will be getting up at 2 am every night for the foreseeable future.
Sunday, January 4, 2015
The biopsy
On a cold Tuesday morning I was wrestling the boys into their car seats to try and get myself to bible study on time when I missed the call. So once we were all strapped into the car, with the heat running, I listened to the voice mail from the liver specialist. She was brief but stated that we needed to go ahead with the liver biopsy and she would try to call me back. This was a breaking point for me. I had been praying against this so hard. I did not want to go through with the liver biopsy and I only had this short voice mail and no more information about why we need to go ahead with biopsy. I just started to cry, why God, I do not want this! My little one year old can not have surgery! I tried to call Tim, about 5 times, but he was in a meeting and couldn't talk. Once I got to church I dried myself up, took the kids to childcare, snuck into bible study and squeezed into the table my friends were at. It only took about 2 minutes before they all asked if I was ok. I cried and explain that I just got a short voice mail and was just overwhelmed with the idea of a biopsy. The table of women immediately stopped and prayed for me and my family. It was just what I needed in the moment.
Later in the afternoon I got in touch with the doctor and she explained that the blood work came back and ruled out a couple of disease but she needed to get the biopsy to confirm her hunch. This was the first I had heard Glycogen Storage Disease mentioned. It was a huge relief to actually hear a possible diagnosis. It was a relief to know that they knew what they were looking for and that all the blood draws and tests were not unnecessary. She explained again what the biopsy would entail and said they would call to schedule with me. We were told he would be under anesthesia for 10-15 minutes. It is a minimally invasive procedure, only a needle, but due to the tissue of the liver there is a risk of internal bleeding. He would need to have blood work done several times after the procedure and would be closely monitored. It would most likely be an over night stay at the hospital due to his age. I was feeling much better about everything but was still nervous about the biopsy, but I was able to start mentally preparing myself.
It took what felt like forever to get the biopsy scheduled. I was waiting for them to call for 2 weeks and they never called. We had our trip to NY planned and I was getting nervous the procedure would interfere with our trip or just be delayed until after which would be close to Christmas. So once I called I found there was a problem in communication or the computer system and the scheduler did not have the order in the system so I called the nurse, the nurse called the scheduler, the scheduler called me back, it was stressful. But it was scheduled for about 2 weeks out, just a few days before we were to fly to NY.
My friend, Jen, was able to come spend the whole day of the biopsy at our house with Ben and her son. She was actually excited for them to be able to spend that time together before they moved. She was a huge blessing because I did not have to worry about Ben at all during everything. The whole day was so overwhelming it is hard to look back and remember everything. I had to wake Micah up early and be out the door, so Tim left after us and met us there. Micah had to fast for the procedure so he had some apple juice when he first woke up and then nothing all day, which was a huge concern for me but he did surprisingly well with it. From here, I'm just going to paste in the email I sent to family the day after the biopsy.
Yesterday went, probably, as smooth as possible. I could tell that God was carrying Micah (and us). There were a few very small things that came up as potential problems but never were. From the moment we stepped into the operating room I have been focusing on these two verses. "I will restore you to health and heal all of your wounds" Jeremiah 30:17 and "The Lord is my strength and shield. I trust in Him with all of my heart." Psalm 28:7
Micah did well all morning up until about an hour before the procedure when we went into the pre-op room. He just kind of lost it, he was hungry and tired and there were people in and out and talking and he was done. They still needed to do a quick ultrasound before the procedure so they did it as fast as possible while he just cried. We were able to walk him back to the operating room and hold his hands while they gave him the mask for anesthesia. Once he was asleep we got to give him a kiss and then we went to the waiting room. The doctor came out about 20 minutes later and told us he did great and was in recovery. We had to wait a little longer before we were taken back to see him. It was pretty sad to see him all groggy and unhappy and with tons of wires coming off of him. But the nurse had me sit in a rocker and hold him. I got him to calm down take a nap before we were moved up to a hospital room. He did have an IV, I was curious how they would pull that off. They took a washcloth, folded it in half, wrapped it around his whole arm and then taped it on tight. It looked like he had a cast on with his little fingers sticking out. Once we got in the room Micah was doing much better. He guzzled a whole cup of juice and wanted more. He was very mellow all day and we just took turns holding him in the recliner. He took a small nap. Once he was allowed to eat, he did great eating and continued to drink a ton. He had his blood checked three times through a finger prick where they collected quite a bit of blood. He also had his blood sugar levels checked a few times. So he had about 5 band aids on his extremities. But he handled the pricks pretty well, probably because he was on pain medication from the procedure. After we got the results from the last blood check I went home to be with Ben and Tim stayed the night with Micah. Micah fell asleep shortly after I left and Tim was able to put him in the crib where he slept all night. Tim said he was able to sleep. By morning Micah seems to be back to normal. He had a good breakfast. I was able to be on speaker phone with the nurse and the doctor this morning to hear discharge instructions. So he is technically discharged but is not home yet because Tim is waiting to get a glucose meter.
Our next step is, for the next few days, we need to check Micah's blood sugar levels before every meal, especially when he first wakes up in the morning. I'm not sure what a normal range is, but if it is ever below 50 I am to call the liver specialist. She will be calling us this week with initial results and to talk about the blood sugar levels. Depending on the results she gets from the biopsy she might need to send some out to another lab for further testing for a diagnosis. As of right now we are not changing anything about his diet but depending on how things go we are looking at changing his feeding schedule and possibly diet. Which all in all is not bad!
Leaving Micah at the hospital with Tim was super hard, but being about 11 weeks pregnant, I needed to sleep in my bed and I think Micah slept better with Tim there too. That day after, we got both the boys in bed and sat down on the couch and I just needed to shed a few tears. It was an emotional couple days and I held it together the whole time. I needed to let it out and breath, we had survived the biopsy day. We were blessed that some friends had dropped off dinner for us. I did not realize how draining and tiring it would be and we would probably not have had a good dinner if it weren't for them.
We continued to check Micah's blood sugar level in the mornings and left for NY 4 days later. The doctor called while we were in NY and confirmed that Micah does have Glycogen Storage Disease and said that she was now referring us to a metabolic specialist and dietitian. Since we were in NY we had to put off our appointment with them until December.
Later in the afternoon I got in touch with the doctor and she explained that the blood work came back and ruled out a couple of disease but she needed to get the biopsy to confirm her hunch. This was the first I had heard Glycogen Storage Disease mentioned. It was a huge relief to actually hear a possible diagnosis. It was a relief to know that they knew what they were looking for and that all the blood draws and tests were not unnecessary. She explained again what the biopsy would entail and said they would call to schedule with me. We were told he would be under anesthesia for 10-15 minutes. It is a minimally invasive procedure, only a needle, but due to the tissue of the liver there is a risk of internal bleeding. He would need to have blood work done several times after the procedure and would be closely monitored. It would most likely be an over night stay at the hospital due to his age. I was feeling much better about everything but was still nervous about the biopsy, but I was able to start mentally preparing myself.
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| I had my first ultrasound the afternoon we heard we needed the biopsy. This is how we announced baby to family. |
It took what felt like forever to get the biopsy scheduled. I was waiting for them to call for 2 weeks and they never called. We had our trip to NY planned and I was getting nervous the procedure would interfere with our trip or just be delayed until after which would be close to Christmas. So once I called I found there was a problem in communication or the computer system and the scheduler did not have the order in the system so I called the nurse, the nurse called the scheduler, the scheduler called me back, it was stressful. But it was scheduled for about 2 weeks out, just a few days before we were to fly to NY.
My friend, Jen, was able to come spend the whole day of the biopsy at our house with Ben and her son. She was actually excited for them to be able to spend that time together before they moved. She was a huge blessing because I did not have to worry about Ben at all during everything. The whole day was so overwhelming it is hard to look back and remember everything. I had to wake Micah up early and be out the door, so Tim left after us and met us there. Micah had to fast for the procedure so he had some apple juice when he first woke up and then nothing all day, which was a huge concern for me but he did surprisingly well with it. From here, I'm just going to paste in the email I sent to family the day after the biopsy.
Yesterday went, probably, as smooth as possible. I could tell that God was carrying Micah (and us). There were a few very small things that came up as potential problems but never were. From the moment we stepped into the operating room I have been focusing on these two verses. "I will restore you to health and heal all of your wounds" Jeremiah 30:17 and "The Lord is my strength and shield. I trust in Him with all of my heart." Psalm 28:7
Micah did well all morning up until about an hour before the procedure when we went into the pre-op room. He just kind of lost it, he was hungry and tired and there were people in and out and talking and he was done. They still needed to do a quick ultrasound before the procedure so they did it as fast as possible while he just cried. We were able to walk him back to the operating room and hold his hands while they gave him the mask for anesthesia. Once he was asleep we got to give him a kiss and then we went to the waiting room. The doctor came out about 20 minutes later and told us he did great and was in recovery. We had to wait a little longer before we were taken back to see him. It was pretty sad to see him all groggy and unhappy and with tons of wires coming off of him. But the nurse had me sit in a rocker and hold him. I got him to calm down take a nap before we were moved up to a hospital room. He did have an IV, I was curious how they would pull that off. They took a washcloth, folded it in half, wrapped it around his whole arm and then taped it on tight. It looked like he had a cast on with his little fingers sticking out. Once we got in the room Micah was doing much better. He guzzled a whole cup of juice and wanted more. He was very mellow all day and we just took turns holding him in the recliner. He took a small nap. Once he was allowed to eat, he did great eating and continued to drink a ton. He had his blood checked three times through a finger prick where they collected quite a bit of blood. He also had his blood sugar levels checked a few times. So he had about 5 band aids on his extremities. But he handled the pricks pretty well, probably because he was on pain medication from the procedure. After we got the results from the last blood check I went home to be with Ben and Tim stayed the night with Micah. Micah fell asleep shortly after I left and Tim was able to put him in the crib where he slept all night. Tim said he was able to sleep. By morning Micah seems to be back to normal. He had a good breakfast. I was able to be on speaker phone with the nurse and the doctor this morning to hear discharge instructions. So he is technically discharged but is not home yet because Tim is waiting to get a glucose meter.
Our next step is, for the next few days, we need to check Micah's blood sugar levels before every meal, especially when he first wakes up in the morning. I'm not sure what a normal range is, but if it is ever below 50 I am to call the liver specialist. She will be calling us this week with initial results and to talk about the blood sugar levels. Depending on the results she gets from the biopsy she might need to send some out to another lab for further testing for a diagnosis. As of right now we are not changing anything about his diet but depending on how things go we are looking at changing his feeding schedule and possibly diet. Which all in all is not bad!
Leaving Micah at the hospital with Tim was super hard, but being about 11 weeks pregnant, I needed to sleep in my bed and I think Micah slept better with Tim there too. That day after, we got both the boys in bed and sat down on the couch and I just needed to shed a few tears. It was an emotional couple days and I held it together the whole time. I needed to let it out and breath, we had survived the biopsy day. We were blessed that some friends had dropped off dinner for us. I did not realize how draining and tiring it would be and we would probably not have had a good dinner if it weren't for them.
We continued to check Micah's blood sugar level in the mornings and left for NY 4 days later. The doctor called while we were in NY and confirmed that Micah does have Glycogen Storage Disease and said that she was now referring us to a metabolic specialist and dietitian. Since we were in NY we had to put off our appointment with them until December.
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