Hi, it's Kristen, bringing you an update from Jill:
So...sorry for the lack of posting. The family was here for the weekend; and I barely cracked open the computer. We had a great time; but I was sad (and so were the kids) that we did not get to go home with them.
And...on another note; some of Matthew's friends must have been keeping up with the blog; and have also decided they would like to try out this hospital thing. Both of our friends Cayman and Owen are in the hospital. We're praying for both of you guys! And Matthew wanted you two to know that sitting in the hospital is not as fun as it sounds!! So hurry up kids and get better!!
After I posted on Wednesday; Matthew started waking up from surgery; and things weren't pretty for awhile. He had lots of swelling in his throat from surgery and had a hard time breathing for awhile. That night was pretty rough for him. Steve and the kids got in late; and daddy sure was sad to see his little guy struggling so hard. I think that always makes surgery so hard; to see them struggle to recover.
Thursday Matthew was still on oxygen from surgery; but breathing better. The pediatrician told us that we will not know for sure if the adenoids surgery was helpful until we are about 2 weeks post-op.
As a family, we were able to go out to eat at the same restaurant we've eaten the last two years we've been here; and had a traditional Thanksgiving meal. It was nice to get a bit of a break. We had an awesome nurse that day who only had Matthew to take care of, so she just sat in his room the whole time we were gone; and we didn't have to worry about being away from the hospital.
Friday we did our best to keep the kids busy. They played hospital Bingo in the morning and made a craft in the afternoon. Steve stayed with Matthew; and I had fun keeping the kids entertained. Matthew got off oxygen, but was still coughing and vomiting quite a bit.
Saturday my uncle who lives in here in MN and I took the kids to an indoor waterpark. That was tons of fun for them; and passed the day quickly. If you are ever in the Minneapolis/St. Paul area; I HIGHLY recommend the Waterpark of America (it next to the Mall of America) and it was the hugest thing I had ever seen!
Today the family took off for home :( and Matthew an I have settled back in our routine. Matthew is still having a hard time managing secretions; and frequently gags with them; but we at least know why he is retching with them. The pulmonologist says he has a very strong cough; but also a very VERY delicate gag reflex. So anytime he coughs any mucous; he ends of gagging and well..you know the rest; I'll spare you the details.
Since not much can be done about a sensitive gag; the pediatrician and the pulmonologist are going to focus on trying to minimize his secretions by drying them up as much as possible. Matthew has also gained 5 pounds since admission. He is not retaining any fluid; so we are again wondering about calories. His jammies from home do not fit anymore and we have had to go up a size in diapers. I'm sure he is getting a few too many calories; and a dietitian will be joining us tomorrow to figure out an appropriate amount of calories for him. I've joked that this year Thanksgiving has been harder on Matthew's waist line than mine! He has a full fledged double chin and his legs have some chunk to them. The upper supports on his wheelchair are getting snug, too.
The pediatrician says that if all goes well; we may be able to go home over the next weekend; but Matthew always has his own ideas, and she reserves the right to change her mind.
It feels like we entered the hospital so long ago, with the vomiting blood issue; and have gone so many different directions with different problems; but now I am feeling hopeful about going home with a plan in place. They are not eager to send us home until he is well. Matthew sure is an difficult kid to figure out; and changes his mind about what his current problem is going to be. But he's a fighter, too! And God sure isn't finished showing us miracle through this little boy yet! We are so thankful!
Sunday, November 28, 2010
Wednesday, November 24, 2010
out of surgery
Matthew came through his procedures with flying colors! He is resting well and they expect to start feedings with him this evening. I will update more throughout the weekend. Steve and the kids are on their way up for our annual thanksgiving. Thank you everyone for your prayers!
Tuesday, November 23, 2010
Long Overdue Update
Hi All...This is Michelle posting the latest from Jill:
So I left you last with saying Saturday would be quiet and it was. Saturday night we decided we would start pedialyte at 5 cc's an hour. Sunday morning, he was doing some vomiting, so the doctor wanted to try a new medication, called Reglan. It is supposed to help with GI motility, but also comes with some pretty big warnings on it's label; especially for children who have seizures.
By Sunday afternoon, he was still vomiting, and now starting to have issues with his heart rate. His heart rate would inexplicably drop to about 60 beats (his normal is 100-120) and then slowly come back up to where it needed to be. Around 1 am, he woke up having a huge seizure. Matthew typically does not seize in his sleep, which was odd. Then the retching started. HORRIBLE, horrible amounts of retching. And as soon as he fell asleep, he would have a seizure, and the cycle would begin ALL over again. About 6:30 a.m., I was awakened to someone semi-frantically saying his name. I woke up and opened my eyes and Matthew's whole face was blue. His monitor was beeping, and the saturation was 40%. I thought in the back of my head "here we go, he's gonna code". I could tell he was in the middle of a seizure. I yanked the pillow out from under his head, dropped the head of the bed flat and ripped open his pajama top so I could see his chest. He still wasn't breathing, and the nurse was yelling for help.
My immediate response was to do a sternal rub (taking your knuckles and rubbing them over the sternum; a painful stimuli to make someone respond...in Matthew's case to make him breathe), and he gasped a big breath. The nurses called a rapid response; which is a call that brings PICU charge nurse, PICU doctor, respiratory, and a couple other people I believe. As he came out of the seizure, he started breathing again, and they decided to load Matthew with valium, give his morning seizure meds early, and draw some blood. We almost bought ourselves a trip to the PICU, but the doc's thought we'd try to stay put on the floor. I also said that I didn't want any more Reglan given, as I believed it was causing our seizure and low heart rate problems.
Matthew (and me too) slept the morning away. Because of all the retching, they decided we had given the G-tube only enough trial and said that we must put the GJ back in if we wanted a reliable way to give his seizure meds. I reluctantly agreed.
We also had a new pediatrician rounding, and she sat down with me and went through every possible reason a person would have retching, and what tests could be done to determine if this was the problem for Matthew. I was immediately impressed. We drew more lab work, scheduled x-rays, and consulted neurosurgery and ophthalmology (to make triple sure it wasn't his shunt).
He went downstairs in the afternoon for the x-rays and the gJ tube placement. During an x-ray, he had another one of the "stop breathing" seizures, and scared the crap out of both the nurse and the x-ray tech's. After he came around, we took him to interventional radiology to place the GJ tube. We met with the anesthesiologist, who, in an unprofessional moment, told me he didn't know what procedure we were doing. When he asked his colleagues what procedure was to be done, none of them knew either. I immediately told them they were making me very nervous if they were going to be caring for my child and they had no idea what they were doing. I actually couldn't believe what they were saying! They went and got the radiologist, the chart and got themselves set straight. ( Later that day, the radiology manager visited me, and said the radiology nurse had been told about the incident. He brought me flowers and apologized. (: )
He was brought back to the room about 1 1/2 hours later tired, but doing well. The pediatrician came and talked with me again, and wanted to do a CT scan, and a shunt series to make sure all these things were not related to a shunt malfunction. As the evening wore on, and the Reglan got out of his system, he seizures lessened, and the heart rate dropping episodes went away. He actually slept the most peacefully last night than he has in a long time.
This morning, most of the lab results were back, and everything looks normal. His CT scan, and shunt series were fine. On the CT scan, however, it showed a lot of fluid collection in his left Mastoid (which is part of the ear). The doctor said that fluid buildup there can cause dizziness and vomiting. His sinus x-rays did show an enlarged adenoid. So tomorrow at 11:45 Matthew will be finally having his scope, bronchoscopy, a ear tube place in his left ear, and a probably adenoidectomy.
We also restarted feedings in his J-tube. It is just pedialyte, and it's going only at 10 cc's/hour; but he is tolerating it. No retching, no vomiting. He still is getting respiratory treatments 4 times a day, along with chest percussion (which helps loosen secretions). We've come a long way and gotten a lot done in less than two weeks. I'm very happy to say that the doctors here have looked for every possible problem, and aren't going to send us home until they've searched every avenue. I wanted to be home by Thanksgiving, but I don't think that's possible. It's probably going to be the weekend at the soonest.
So I left you last with saying Saturday would be quiet and it was. Saturday night we decided we would start pedialyte at 5 cc's an hour. Sunday morning, he was doing some vomiting, so the doctor wanted to try a new medication, called Reglan. It is supposed to help with GI motility, but also comes with some pretty big warnings on it's label; especially for children who have seizures.
By Sunday afternoon, he was still vomiting, and now starting to have issues with his heart rate. His heart rate would inexplicably drop to about 60 beats (his normal is 100-120) and then slowly come back up to where it needed to be. Around 1 am, he woke up having a huge seizure. Matthew typically does not seize in his sleep, which was odd. Then the retching started. HORRIBLE, horrible amounts of retching. And as soon as he fell asleep, he would have a seizure, and the cycle would begin ALL over again. About 6:30 a.m., I was awakened to someone semi-frantically saying his name. I woke up and opened my eyes and Matthew's whole face was blue. His monitor was beeping, and the saturation was 40%. I thought in the back of my head "here we go, he's gonna code". I could tell he was in the middle of a seizure. I yanked the pillow out from under his head, dropped the head of the bed flat and ripped open his pajama top so I could see his chest. He still wasn't breathing, and the nurse was yelling for help.
My immediate response was to do a sternal rub (taking your knuckles and rubbing them over the sternum; a painful stimuli to make someone respond...in Matthew's case to make him breathe), and he gasped a big breath. The nurses called a rapid response; which is a call that brings PICU charge nurse, PICU doctor, respiratory, and a couple other people I believe. As he came out of the seizure, he started breathing again, and they decided to load Matthew with valium, give his morning seizure meds early, and draw some blood. We almost bought ourselves a trip to the PICU, but the doc's thought we'd try to stay put on the floor. I also said that I didn't want any more Reglan given, as I believed it was causing our seizure and low heart rate problems.
Matthew (and me too) slept the morning away. Because of all the retching, they decided we had given the G-tube only enough trial and said that we must put the GJ back in if we wanted a reliable way to give his seizure meds. I reluctantly agreed.
We also had a new pediatrician rounding, and she sat down with me and went through every possible reason a person would have retching, and what tests could be done to determine if this was the problem for Matthew. I was immediately impressed. We drew more lab work, scheduled x-rays, and consulted neurosurgery and ophthalmology (to make triple sure it wasn't his shunt).
He went downstairs in the afternoon for the x-rays and the gJ tube placement. During an x-ray, he had another one of the "stop breathing" seizures, and scared the crap out of both the nurse and the x-ray tech's. After he came around, we took him to interventional radiology to place the GJ tube. We met with the anesthesiologist, who, in an unprofessional moment, told me he didn't know what procedure we were doing. When he asked his colleagues what procedure was to be done, none of them knew either. I immediately told them they were making me very nervous if they were going to be caring for my child and they had no idea what they were doing. I actually couldn't believe what they were saying! They went and got the radiologist, the chart and got themselves set straight. ( Later that day, the radiology manager visited me, and said the radiology nurse had been told about the incident. He brought me flowers and apologized. (: )
He was brought back to the room about 1 1/2 hours later tired, but doing well. The pediatrician came and talked with me again, and wanted to do a CT scan, and a shunt series to make sure all these things were not related to a shunt malfunction. As the evening wore on, and the Reglan got out of his system, he seizures lessened, and the heart rate dropping episodes went away. He actually slept the most peacefully last night than he has in a long time.
This morning, most of the lab results were back, and everything looks normal. His CT scan, and shunt series were fine. On the CT scan, however, it showed a lot of fluid collection in his left Mastoid (which is part of the ear). The doctor said that fluid buildup there can cause dizziness and vomiting. His sinus x-rays did show an enlarged adenoid. So tomorrow at 11:45 Matthew will be finally having his scope, bronchoscopy, a ear tube place in his left ear, and a probably adenoidectomy.
We also restarted feedings in his J-tube. It is just pedialyte, and it's going only at 10 cc's/hour; but he is tolerating it. No retching, no vomiting. He still is getting respiratory treatments 4 times a day, along with chest percussion (which helps loosen secretions). We've come a long way and gotten a lot done in less than two weeks. I'm very happy to say that the doctors here have looked for every possible problem, and aren't going to send us home until they've searched every avenue. I wanted to be home by Thanksgiving, but I don't think that's possible. It's probably going to be the weekend at the soonest.
Saturday, November 20, 2010
Saturday Update
It's Kristen posting again. I have an update from Jill about Matthew:
Saturday update:
No update yesterday; but no new was GOOD news! Matthew had a wonderful day yesterday for the most part. He was up and going early in the morning, and all the doctors made their rounds early. The goals for him were to get off of oxygen and by 4pm we had accomplished that goal. He did so well! He was batting the oxygen out of his nose by noon that day; and it was all the respiratory therapists could do to keep it in his nose. By 4 o'clock; i asked to just keep it out to see what he would do. He hasn't had oxygen since. Thursday we had taken the G-tube out and the doctors were worried he wouldn't keep his medications down without putting them in his J-tube; but he has kept them down beautifully. He had the perfect day yesterday. He fell asleep around 9 pm and woke up around midnight. He was screaming in pain and then he gagged. I vented his tummy and a bunch of green bile was in his stomach. He vomited 3 more times throughout the night; which was disheartening; but I asked for some zofran for him and then he slept peacefully. So my question today to GI will be what he thinks about our evening. We we vent Matthew; we never see greenish/yellow bile. And we saw that for 1/2 the night and now we are just getting clear stuff again. This kid sure is a puzzle.
We will be asking GI today also what is the plan for the weekend/ beginning of the week. When will we start feeding him? Will we do a scope still? What will be our goals for discharge. Yep; you read that right; discharge. They are pushing for a thanksgiving goal. We have spent the last two thanksgivings here; and will spend another one here if we need to; but we are going to try to avoid it.
We are also getting visitors today. Matthew's grandma and grandpa (my parents) are coming to stay with me for the weekend! What a lucky girl I am!! I am so happy!
Saturday update:
No update yesterday; but no new was GOOD news! Matthew had a wonderful day yesterday for the most part. He was up and going early in the morning, and all the doctors made their rounds early. The goals for him were to get off of oxygen and by 4pm we had accomplished that goal. He did so well! He was batting the oxygen out of his nose by noon that day; and it was all the respiratory therapists could do to keep it in his nose. By 4 o'clock; i asked to just keep it out to see what he would do. He hasn't had oxygen since. Thursday we had taken the G-tube out and the doctors were worried he wouldn't keep his medications down without putting them in his J-tube; but he has kept them down beautifully. He had the perfect day yesterday. He fell asleep around 9 pm and woke up around midnight. He was screaming in pain and then he gagged. I vented his tummy and a bunch of green bile was in his stomach. He vomited 3 more times throughout the night; which was disheartening; but I asked for some zofran for him and then he slept peacefully. So my question today to GI will be what he thinks about our evening. We we vent Matthew; we never see greenish/yellow bile. And we saw that for 1/2 the night and now we are just getting clear stuff again. This kid sure is a puzzle.
We will be asking GI today also what is the plan for the weekend/ beginning of the week. When will we start feeding him? Will we do a scope still? What will be our goals for discharge. Yep; you read that right; discharge. They are pushing for a thanksgiving goal. We have spent the last two thanksgivings here; and will spend another one here if we need to; but we are going to try to avoid it.
We are also getting visitors today. Matthew's grandma and grandpa (my parents) are coming to stay with me for the weekend! What a lucky girl I am!! I am so happy!
Thursday, November 18, 2010
Quick update
I know some of you are waiting for an update and I'll try to give you a brief one and then send a big update tomorrow to Kristen to post. Matthew has had a good day overall. He is still on high flow oxygen, but it is set to room air. Nasically they are just using it to push more air in Matthews lungs. Matthew has been running fevers all day today but his lab work is good. His chest Xray is good so basically they think this is more of a virus vs. Aspiration; although I am questioning this.
We took out Matthew's GJ tube today and replaced it with a G tube to see if this helps his retching. And sadly today we have seen some vomiting, but not any retching{ which is kind of good}
Today friends of ours that we met here at the hospital here last year ( and are strangely hospitalized again at the same time as us) got some very sad news today about their sweet little girl. They are now having to deal with the emotions of taking their sweet girl home to keep her as comfortable as possible ; as medically there is nothing that can repair her brain.
Also,this evening I heard a nurse cry out from across the hallway "I need some help in here!" Followed by nurses running from every direction and the sound of a code being called overhead. My knees trembled and my heart broke for that childs family. I'm not sure of the outcome, but prayers were sent heavenward from our room.
There is sadness all around, but I also feel God's presence. I am tucking in for the night; and just wanted to give you all an update. If you have kids..go give them an extra squeeze today..life is short.
We took out Matthew's GJ tube today and replaced it with a G tube to see if this helps his retching. And sadly today we have seen some vomiting, but not any retching{ which is kind of good}
Today friends of ours that we met here at the hospital here last year ( and are strangely hospitalized again at the same time as us) got some very sad news today about their sweet little girl. They are now having to deal with the emotions of taking their sweet girl home to keep her as comfortable as possible ; as medically there is nothing that can repair her brain.
Also,this evening I heard a nurse cry out from across the hallway "I need some help in here!" Followed by nurses running from every direction and the sound of a code being called overhead. My knees trembled and my heart broke for that childs family. I'm not sure of the outcome, but prayers were sent heavenward from our room.
There is sadness all around, but I also feel God's presence. I am tucking in for the night; and just wanted to give you all an update. If you have kids..go give them an extra squeeze today..life is short.
Wednesday, November 17, 2010
Jill's update, a little delayed
It is true, Jill's update has been sitting in my [Kristen's] email inbox since late yesterday night. This is the first I have been able to log into my email and get it posted. Sorry for the delay.
Here it is (words from Jill):
Tuesday started off well for Matthew. We knew it was going to be a restful day for him. And the morning was pretty uneventful. Labwork was all normal; the ultrasounds were normal, the upper GI just showed delayed movement through his bowels, and also that he could not tolerate that amount of food in his tummy at once. The epileptologist reviewed his EEG (they did an overnight one on Sunday) and said that it looked just like the one that had been done in April. Confirmed that some of the movements we saw were not seizures and said for him it looked the same.
The ENT doctor came in and met Matthew. She talked about what her role would be in the procedure tomorrow; and that she thinks his addenoids are part of the problem. She said she would look at them; and if she felt like they were she would remove them.
Then about 1 pm, Matthew started having problems keeping his oxygen saturations up. He started sounding more junky in his lungs. The nurses put him on ozygen. That helped for awhile, but he was breathing SO hard. They did not feel comfortable keeping him on the floor. The epilespy wing is removed from the rest of the hospital; and so anytime respiratory therapy needs to come across from the hospital to a separate building. They felt that due to his increased respiratory distress; it would be best for him to be on a regular medical floor. They did another chest x-ray; which didn't show any worsening, blood gases, which were good; and then moved us over. While I am sad we are not where we know all of the nurses and are comfortable, the upside is that I can have my computer in the room, and my cell phone too. I do feel like I can communicate with the outside world again.
They have ramped Matthew's treatments up to every four hours; and started another nebulizer treatment. They started steriods to give in his g button, and now he is on high flow oxygen. As I sit here writing this; Matthew is working pretty hard to breathe; but is keeping his oxygen levels up.
I am doubting we will doing the procedure as planned tomorrow due to the fact he will need to be seddated for this, and this is not the best plan when you lungs are already compromised. We will see what GI and ENT say in the morning.
On a weird but crazy side note; Matthew's retching has essentially went away. He will still vomit occasionally on secretions, but no vomiting is happening. Praise the LORD! We have exchanged one probem for another :(
Despite everything he is doing right now; Matthew is still giving smiles. When I think about how hard he is working; I knowI would NOT be smiling; I be downright sad and whiny. He is truly a fighter; and we hope that he can continue to be strong and fight yet another thing off. We want to bring him home so badly!
Here it is (words from Jill):
Tuesday started off well for Matthew. We knew it was going to be a restful day for him. And the morning was pretty uneventful. Labwork was all normal; the ultrasounds were normal, the upper GI just showed delayed movement through his bowels, and also that he could not tolerate that amount of food in his tummy at once. The epileptologist reviewed his EEG (they did an overnight one on Sunday) and said that it looked just like the one that had been done in April. Confirmed that some of the movements we saw were not seizures and said for him it looked the same.
The ENT doctor came in and met Matthew. She talked about what her role would be in the procedure tomorrow; and that she thinks his addenoids are part of the problem. She said she would look at them; and if she felt like they were she would remove them.
Then about 1 pm, Matthew started having problems keeping his oxygen saturations up. He started sounding more junky in his lungs. The nurses put him on ozygen. That helped for awhile, but he was breathing SO hard. They did not feel comfortable keeping him on the floor. The epilespy wing is removed from the rest of the hospital; and so anytime respiratory therapy needs to come across from the hospital to a separate building. They felt that due to his increased respiratory distress; it would be best for him to be on a regular medical floor. They did another chest x-ray; which didn't show any worsening, blood gases, which were good; and then moved us over. While I am sad we are not where we know all of the nurses and are comfortable, the upside is that I can have my computer in the room, and my cell phone too. I do feel like I can communicate with the outside world again.
They have ramped Matthew's treatments up to every four hours; and started another nebulizer treatment. They started steriods to give in his g button, and now he is on high flow oxygen. As I sit here writing this; Matthew is working pretty hard to breathe; but is keeping his oxygen levels up.
I am doubting we will doing the procedure as planned tomorrow due to the fact he will need to be seddated for this, and this is not the best plan when you lungs are already compromised. We will see what GI and ENT say in the morning.
On a weird but crazy side note; Matthew's retching has essentially went away. He will still vomit occasionally on secretions, but no vomiting is happening. Praise the LORD! We have exchanged one probem for another :(
Despite everything he is doing right now; Matthew is still giving smiles. When I think about how hard he is working; I knowI would NOT be smiling; I be downright sad and whiny. He is truly a fighter; and we hope that he can continue to be strong and fight yet another thing off. We want to bring him home so badly!
11/17
I have an update from last night sitting in kristen's inbox that I'm sure she will post later, but I wanted to send you a quick update from my phone to tell you we are ok. Matthew got very sick last night..he had been moved off of the epilepsy floor, and we were on the medical floor. Shortly after 1 am he got VERY sick. I was sure he was heading very quickly to the PICU with a ventilater. Miraculously, he was able to clear the secretions with a large vomit. But his cough was very weak and he couldn't hold his eyes open any more. He finally got some sleep this early morning and wasscheduled to have a bronchoscopy and scope with a possible addenoidectomy. He was still working so hard to breathe and is on high flow oxygen so I was concerned about doing the procedure. They send up an anesthesiologist to check him out and without listening tohim, he said it was ok to do the procedure. When we got down to the OR however the anesthesiologist said he was not willing to do the procedure and both surgeons agreed. I was surpisingly relieved. They worried that they wouldn't be able to get him off the venilater. So we are back in the room, and we are relaxing for the day. They are giving him steriods and extra nebulizer treatments to see if that will help.we will try to reschedule the procedure as soon as he is well enough. Thank you for your continued prayers..again I apologize for any spelling errors as this is being typed on my phone.
Monday, November 15, 2010
Jill's Update from Today
This is Jill's friend Kristen bringing you words from Jill on Matthew's update for today. She cannot post herself from the particular hospital where they are at. We did this once before, I think exactly a year ago it was. This is not the beginning of a new yearly tradition for us (I promise). I know, because I am covering that in prayer!!!
So here is Matthew's update (written by Jill, just simply posted by me):
Matthew had a very nice restful day yesterday. The doctors say he is not "out of the woods", but they feel he is stable. We have not seen bloody vomit since Saturday night. So hopefully his gut is healing some. They are working on plans to get GI and ENT together to do a scope. That way we can look at all the anatomy and can see if something is causing Matthew to vomit. We also can know how bad the bleed in Matthew's gut is. Steve also decided it was best to take off for home yesterday. His business still needs to run; and the other kids need as stable as environment as possible.
Today was a whirlwind. We had lab work, and ultrasound, and an upper GI/small bowel test done today. We started with all of Matthew's breathing treatments this morning at 7:30 and ran, ran, ran until just before 2 pm today. We do not know the results of these tests; but will by tomrrow.
One of the tests was to check GI function; and he ended up throwing up ALOT of barium today. This was really hard on him and tonight he is working pretty hard with secretions. I think it really iritated his esophagus. Hopefully this test will give them some answers; because is sure was hard on his little body.
Thank you to everyone who is praying for Matthew! I do apologize for taking so long to update. I cannot access the blog from the hospital; and it is hard to type up all this information on my phone. Thank you Kristen for you help!!
So here is Matthew's update (written by Jill, just simply posted by me):
Matthew had a very nice restful day yesterday. The doctors say he is not "out of the woods", but they feel he is stable. We have not seen bloody vomit since Saturday night. So hopefully his gut is healing some. They are working on plans to get GI and ENT together to do a scope. That way we can look at all the anatomy and can see if something is causing Matthew to vomit. We also can know how bad the bleed in Matthew's gut is. Steve also decided it was best to take off for home yesterday. His business still needs to run; and the other kids need as stable as environment as possible.
Today was a whirlwind. We had lab work, and ultrasound, and an upper GI/small bowel test done today. We started with all of Matthew's breathing treatments this morning at 7:30 and ran, ran, ran until just before 2 pm today. We do not know the results of these tests; but will by tomrrow.
One of the tests was to check GI function; and he ended up throwing up ALOT of barium today. This was really hard on him and tonight he is working pretty hard with secretions. I think it really iritated his esophagus. Hopefully this test will give them some answers; because is sure was hard on his little body.
Thank you to everyone who is praying for Matthew! I do apologize for taking so long to update. I cannot access the blog from the hospital; and it is hard to type up all this information on my phone. Thank you Kristen for you help!!
Saturday, November 13, 2010
In St. Paul
I apologize for not updating sooner. For those of you who follow Kristen's blog, you know that Matthew has been very sick for a while now. We were readmitted to the hospital on Monday, and then dismissed on Thursday. While he was admitted, they started him on TPN, an IV nutriton. We were hoping starting this would help the vomiting. It didn't seem to get any better. He continued to vomit, but the staff was sure it was most likely due to secretions. So they sent us home on Thursday. Friday, a home health nurse came out and didn't think Matthew was well enough to be at home. She called our pediatrician, who wanted to see us in the office. When we went to the office, our pediarician felt that we had exhaused our tries in Omaha. Our GI on Omaha has said that there is really nothing else he can do for us. So in talking with our pediatrician, he said we had two choices. Choice 1 was to try to make him as comfortable as possible, and eventually he would vomit enough that his esphagus would tear and he would bleed ubtil he passed. Option 2 was to get a second opinion from another GI doctor. We have a working relationship with Minnesota,and option 1 was not an option for us. So our Dr called MN and told us to pack a bag and get tot the hospital. There was only one problem, there was a huge snowstorm coming through. The sitiuation felt desperate enough that we decided to make the trip. My parents offered to take the kids and so Steve and I and all the kids packed up and got on the road. It was a long trip..a trip that normally takes 6-7 hours took us 9. We arrived in St. Paul around 3 am. Our pediatrician called the ER doctor to tell us we were coming and so they were expecting us. The trip was not easy for Matthew; hevomited most of the trip. We were quickly settled and lab work drawn. His hemoglobin was better than we thought and hwe didi not require a blood transfusion.
GI and neurosurgery has come to see us today. They believe that he is a tough case, but that they have some ideas and some more things they can do for him. We are doing ultrasounds, xrays and will be doing blood tests. They are also going to tryh to do his scope and involve an ENT doctor with this procedure to see if they can figure out what is wrong. Today was a better day than yesterday, though we haven't really changed anything. My blog is blocked from signing into on the hospitals internet network, so I was able to type this up on my phone. Please excuse any typos. I will do my best to get you updates as I have founf out just how many people care so deeply for us. Yesterday was very tough for us, but today we feel refreshed and in a safe place. We appreciate your prayers. We know God is in control. The franticness of yesterday has been replaced with peace today.
We are hoping for aquiet day tomorrow and hopefully less vomiting ( today has been still a lot of vomiting bit bot as much blood loss). As long as they can keep him stable, Monday will be a big day of tests.
Thank you for praying!..we love you all very much!
GI and neurosurgery has come to see us today. They believe that he is a tough case, but that they have some ideas and some more things they can do for him. We are doing ultrasounds, xrays and will be doing blood tests. They are also going to tryh to do his scope and involve an ENT doctor with this procedure to see if they can figure out what is wrong. Today was a better day than yesterday, though we haven't really changed anything. My blog is blocked from signing into on the hospitals internet network, so I was able to type this up on my phone. Please excuse any typos. I will do my best to get you updates as I have founf out just how many people care so deeply for us. Yesterday was very tough for us, but today we feel refreshed and in a safe place. We appreciate your prayers. We know God is in control. The franticness of yesterday has been replaced with peace today.
We are hoping for aquiet day tomorrow and hopefully less vomiting ( today has been still a lot of vomiting bit bot as much blood loss). As long as they can keep him stable, Monday will be a big day of tests.
Thank you for praying!..we love you all very much!
Tuesday, November 9, 2010
Update on yesterday
For those of you who aren't on my facebook, I wanted to update you on Matthews procedure from yesterday. When we arrived at the hospital and were admitted to the pre-op unit, the anesthesiologist who saw Matthew decided he was too sick to do the procedure. When GI came in to talk to us, they decided it would be best to admit him. So we are back in the hospital and Matthew is on "gut rest" for at least 1 week. He is on TPN, which is IV nutrition until we can put food in his stomach again. We will most likely go home on TPN at least for a couple weeks. We are hoping that this will help his vomiting. Being that I thought we were just coming for a simple procedcure, I did not pack anything beforhand(not smart on my part), so I did make a quick sttop to Walmart last night for the essentials, but sadly my computer is at home. I will most likely make a run home today or tomorrow. I will also be only posting brief updates ( if that is possible for me) as I am posting this update via my cell phone.
Matthew is restung well today. He did a lot of vomiting yesterday but today has done better. We're hoping for a restful day today.
Matthew is restung well today. He did a lot of vomiting yesterday but today has done better. We're hoping for a restful day today.
Sunday, November 7, 2010
Procedure
Matthew is having a scope done tomorrow morning; to see if we can find the answer to all of his retching/vomiting blood issues. I doubt they are going to find anything; but we cross this off the list so we can move forward. Matthew will have to have anesthesia; which is always a bit hard on him. Prayers are appreciated!
Saturday, November 6, 2010
Crafty Girl: Part 5
Okay, getting off the updates on Matthew track for just a bit, I've been wanting to post this picture for a long time. I have had this quilt finished for a couple months now; but the person whose baby it was for I was pretty sure read my blog; at least from time to time. I didn't want to spoil the surprise. I was able to give it to her this week, so here it is for all to view. It turned out so great, I think. The triangles are red and brown minky (the soft fabric with little raised bubbles) and the square shapes are a cute farm print with cows horses and pigs on it. I backed it with the red minky and then free hand machine quilted on each farm fabric square. The binding is black and white striped fabric that matches the cows legs. If you click on the picture you can make it bigger.
Now I can't wait to meet the baby boy that is the recipient of this blanket!
{sorry the picture is a bit blurry; this picture is from my cell phone as I forgot to take a picture of it with my good camera before gifting it!}
Now I can't wait to meet the baby boy that is the recipient of this blanket!{sorry the picture is a bit blurry; this picture is from my cell phone as I forgot to take a picture of it with my good camera before gifting it!}
Friday, November 5, 2010
Quick update
I'm sorry I haven't updated since we got home; but right now I am some what overwhelmed with all of Matthew's care and everything he needs right now. Here is a quick update.
One more tid bit of information before I go; did you know dirty laundry and dishes multipy quicker than bunnies? They are having a hay day at my house.
Okay that's it. Sorry there is not a lot of good news; other than we are home. I'll take that over the hospital any day.
- Matthew, when he is not retching, is a pretty happy little boy
- That being said, Matthew spends a good majority of his time that he is awake retching. :(
- Twice since we've been home, he has retched so hard he is throwing up blood for hours. That is no fun.
- I called his GI today and they want me to bring him to Omaha to the ER. I politely declined.
- Instead, I called and made an appointment with Matthew's primary doctor today at three. I am quite certain they will want to admit him. I will not tell you how I feel about that; or what I will tell them if they say that. I will be asking for an alternate solution. I'm pretty cheeky right now.
- Matthew's care has given me double fold the work. Between meds, percussion treatments, cough assist breathing treatments, hours of retching, and washing all the clothing and towels that goes along with catching that amount of mucous has taken up both of my days home so far.
- We are thankful that we have a nurse that comes into the home twice a week. It has (somewhat) protected my sanity. She is a god send!
One more tid bit of information before I go; did you know dirty laundry and dishes multipy quicker than bunnies? They are having a hay day at my house.
Okay that's it. Sorry there is not a lot of good news; other than we are home. I'll take that over the hospital any day.
Wednesday, November 3, 2010
Tuesday, November 2, 2010
Tomorrow, Tomorrow, I love ya tomorrow, you're only a day away!
Now that I've got you singing, I think it is true; we may just be going home tomorrow. Can't believe it!!
We effectively cleaned the poor little guys GI tract out yesterday and today; and he is a pooping champion. This morning though, the vomiting started again. The vomiting seems to largely be triggered by secretions that Matthew has in the back of his throat. He sounds almost gurgley. It's hard to explain. It's like you want him to clear his throat. And these secretions for some reason go haywire when he has his feeds running. And NO ONE has ever seen anything like this. Not the hospitalist, not pulmonary, not GI, nor any nurse we've talked to. J tube feedings usually cure the vomiting problem. No one seems to understand.
Matthew's feedings are running at a rate that he gets 6 hours free of the pump each day. And today, when he got his break; his secretions essentially went away, and he was a happy little boy.
Pulmonology was asked to come in again today and see if they could figure out any magic to help with secretions. When the very nice doctor came in (I have to say, I haven't met a pulmonologist here that I don't absolutely love..and I've met three) he looked in the back of Matthew's throat and was surprised by what he saw. The secretions were so thick, he said, that they almost looked like they contained pus. EWWWWWW. He said he probably has bacterial bronchitis, and it is possible to have this without a fever. He put Matthew on a regimien of strong antibiotics, and we are hoping this will help with the gross stuff that is gagging him. No one understands why the secretions become so bad with the running of his feedings; but we are willing to try this.
GI came through, and they have no answers for us. He was much kinder today; and he basically just told me that there is no surgery that will cure the retching; as this is not a reflux issue. He is not at all recommending a fundoplication (as the on-call doctor was) because the retching will most likely break down the fundo; and it would only fix reflux, and not retching. He states for a child like Matthew it would be very risky to do the surgery, and he does not see any benefit at this time. If Matthew would start getting a lot of aspiration pneumonia's then he would reconsider. He did, however, give me full liberty once we get home, to put Matthew back on a homemade blended diet. He even brought it up. He thinks it would be easier on his gut than formula; and help him thrive. He also thinks we should try to use prune juice instead of Mirilax. I would like to try this, too. He is very laid back in his approaches; but also was very frank with me, saying that there was not any way to stop the retching.
So, barring anything crazy happening; we should be on our way tomorrow. We have not fixed everything, but we have a plan. And I have a few back up plans should our plan not work. We have enough medical equipment at home to provide him what he needs. I may not get much else done some days, except taking care of Matthew's medical needs; but we are fortunate to have a great nurse that will now be coming to the house a couple days a week on a regular basis to give me a break. Depending on how our nights go; we may get a couple nights this week of coverage also; so we can all get some good sleep.
Here's hoping that the next blog comes to you from my living room!
We effectively cleaned the poor little guys GI tract out yesterday and today; and he is a pooping champion. This morning though, the vomiting started again. The vomiting seems to largely be triggered by secretions that Matthew has in the back of his throat. He sounds almost gurgley. It's hard to explain. It's like you want him to clear his throat. And these secretions for some reason go haywire when he has his feeds running. And NO ONE has ever seen anything like this. Not the hospitalist, not pulmonary, not GI, nor any nurse we've talked to. J tube feedings usually cure the vomiting problem. No one seems to understand.
Matthew's feedings are running at a rate that he gets 6 hours free of the pump each day. And today, when he got his break; his secretions essentially went away, and he was a happy little boy.
Pulmonology was asked to come in again today and see if they could figure out any magic to help with secretions. When the very nice doctor came in (I have to say, I haven't met a pulmonologist here that I don't absolutely love..and I've met three) he looked in the back of Matthew's throat and was surprised by what he saw. The secretions were so thick, he said, that they almost looked like they contained pus. EWWWWWW. He said he probably has bacterial bronchitis, and it is possible to have this without a fever. He put Matthew on a regimien of strong antibiotics, and we are hoping this will help with the gross stuff that is gagging him. No one understands why the secretions become so bad with the running of his feedings; but we are willing to try this.
GI came through, and they have no answers for us. He was much kinder today; and he basically just told me that there is no surgery that will cure the retching; as this is not a reflux issue. He is not at all recommending a fundoplication (as the on-call doctor was) because the retching will most likely break down the fundo; and it would only fix reflux, and not retching. He states for a child like Matthew it would be very risky to do the surgery, and he does not see any benefit at this time. If Matthew would start getting a lot of aspiration pneumonia's then he would reconsider. He did, however, give me full liberty once we get home, to put Matthew back on a homemade blended diet. He even brought it up. He thinks it would be easier on his gut than formula; and help him thrive. He also thinks we should try to use prune juice instead of Mirilax. I would like to try this, too. He is very laid back in his approaches; but also was very frank with me, saying that there was not any way to stop the retching.
So, barring anything crazy happening; we should be on our way tomorrow. We have not fixed everything, but we have a plan. And I have a few back up plans should our plan not work. We have enough medical equipment at home to provide him what he needs. I may not get much else done some days, except taking care of Matthew's medical needs; but we are fortunate to have a great nurse that will now be coming to the house a couple days a week on a regular basis to give me a break. Depending on how our nights go; we may get a couple nights this week of coverage also; so we can all get some good sleep.
Here's hoping that the next blog comes to you from my living room!
Monday, November 1, 2010
Thank goodness for a new week!
Well, here we are, still sitting at the hospital :( But today has been a better day.
Shortly after I posted yesterday's update of Matthew vomiting, I happily called the nurse and said; okay, lets pull the button. Get me the kit, I can do it. She was surprised by my words and didn't think that was part of the plan. So she paged the resident and he confirmed that he did not think that was part of the plan. So then they paged the hospitalist; and she too, said that we couldn't pull the tube and replace it with just the plain g-tube. I kinda lost my mind for a bit. We had expressively talked about removing the g/j and placing the g-tube. Why would I want to do that, you ask? Well, from what I understood from the GI doctor in the past is that when the j portion enters the small intestines from the stomach, that the tube can actually sometimes act as a"cork" in the lower sphincter of the stomach. When that happens, if you use the g-tube to administer food, then it cannot fully empty into the small intestine, this in turn causing the stomach to fill until he vomits.
So after the resident himself came and talked to me and I threatened to remove the tube myself after I got our spare g-tube from home (I know, not one of my finer moments), he convinced me to just wait until tomorrow morning. I told him I would think about waiting; but not to be surprised if I went ahead and did it. Well, thankfully for all involved, I calmed myself a bit; and then Steve and the kids came up and visited Matthew, and we all went out for supper. Before we left, we tried feeding him formula in the g tube, but he just vomited. So off went the feeds (I've lost track how many times we've done this) for the night.
I'm sure that my threats were heard about by all involved, and I believe Matthew was probably the first patient seen this morning. No one wanted me to pull the tube out, and I found it just a tad funny (in a sick sort of way) that if you start being the difficult parent you get all kinds of attention.
GI rounded early today and made their recommendations, and shortly after the hospitalists rounded. The doctor asked me when the last time Matthew had pooped. When I replied Saturday; she informed me that the x-ray they had done Saturday night showed lots of stool in the bowels, and also some barium. Barium is a liquid that shows up on x-ray; it is used in some procedures. She asked when he had had barium. Well the barium had been given last Monday for a test they had done. It was STILL in there!! Holy crap(pun intended), Batman; that can't be good!!
Then the lightbulb went off. If little was coming out of Matthew, and we kept putting more in; eventually his body would scream enough. The doctor likened it to if you eat a large meal, and then would try and eat again, you would eventually get sick to your stomach. She thinks this is what was happening. She ordered 2 enemas for Matthew, and after that to be put back on a regimen of Miralax. We would give the enema's and then start his food ever so slowly. We would gently introduce food back into his body and see what happens.
The first enema had astounding results, to say the least, and the second this evening was quite productive too. Food was started at 5cc's and hour and ran that way for 8 hours. At 10 pm tonight, the nurses started bumping his feeding by 5 cc's an hour until we get to 55 cc's/ hr; which will be morning. We will see how he tolerates this. So far, so good.
GI rounded again this evening, and rained on my parade. I was so excited that this could potentially be a simple fix. When asked what he thought, he told me, that he didn't think that was the problem. When I asked him what he thought was the problem he said he didn't know. I next asked him what he thought we could do to fix it, and he said "nothing". When I inquired about a fundoplication (as talked about by the GI on call yesterday) he said, that he would not recommend it for Matthew. It would fix the reflux, but not the retching. And with all the retching Matthew does he says it would ruin the fundoplication quickly. I asked him if he'd given up on helping him, and he was silent. He said that we'll just have to wait and see what Matthew does.
So we have immediately started "operation: prove GI doctor wrong". Everyone else we've talked to (every nurse, all the residents, the hospitalist who discovered this in the first place) seem to think that this is the obvious answer, and can't believe we overlooked it for so long. The hospitalist on this morning was fresh to the case, and believes that sometimes it just takes a fresh set of eyes to look things over and see if something easy was missed.
So all in all, I am glad I didn't pull the tube. Feeds are going well so far. We are praying they continue; because Matthew needs to get out the hospital and be home. His mother also needs to get out, before she makes a fool of herself anymore :)
Oh and one more nice thing that happened today:
They changed Matthew out to a "big boy" bed, so he and I could snuggle. We did and actually caught a pretty good nap together. Ah, the therapy that is done with some good snuggle time :) It heals what ails you.
Shortly after I posted yesterday's update of Matthew vomiting, I happily called the nurse and said; okay, lets pull the button. Get me the kit, I can do it. She was surprised by my words and didn't think that was part of the plan. So she paged the resident and he confirmed that he did not think that was part of the plan. So then they paged the hospitalist; and she too, said that we couldn't pull the tube and replace it with just the plain g-tube. I kinda lost my mind for a bit. We had expressively talked about removing the g/j and placing the g-tube. Why would I want to do that, you ask? Well, from what I understood from the GI doctor in the past is that when the j portion enters the small intestines from the stomach, that the tube can actually sometimes act as a"cork" in the lower sphincter of the stomach. When that happens, if you use the g-tube to administer food, then it cannot fully empty into the small intestine, this in turn causing the stomach to fill until he vomits.
So after the resident himself came and talked to me and I threatened to remove the tube myself after I got our spare g-tube from home (I know, not one of my finer moments), he convinced me to just wait until tomorrow morning. I told him I would think about waiting; but not to be surprised if I went ahead and did it. Well, thankfully for all involved, I calmed myself a bit; and then Steve and the kids came up and visited Matthew, and we all went out for supper. Before we left, we tried feeding him formula in the g tube, but he just vomited. So off went the feeds (I've lost track how many times we've done this) for the night.
I'm sure that my threats were heard about by all involved, and I believe Matthew was probably the first patient seen this morning. No one wanted me to pull the tube out, and I found it just a tad funny (in a sick sort of way) that if you start being the difficult parent you get all kinds of attention.
GI rounded early today and made their recommendations, and shortly after the hospitalists rounded. The doctor asked me when the last time Matthew had pooped. When I replied Saturday; she informed me that the x-ray they had done Saturday night showed lots of stool in the bowels, and also some barium. Barium is a liquid that shows up on x-ray; it is used in some procedures. She asked when he had had barium. Well the barium had been given last Monday for a test they had done. It was STILL in there!! Holy crap(pun intended), Batman; that can't be good!!
Then the lightbulb went off. If little was coming out of Matthew, and we kept putting more in; eventually his body would scream enough. The doctor likened it to if you eat a large meal, and then would try and eat again, you would eventually get sick to your stomach. She thinks this is what was happening. She ordered 2 enemas for Matthew, and after that to be put back on a regimen of Miralax. We would give the enema's and then start his food ever so slowly. We would gently introduce food back into his body and see what happens.
The first enema had astounding results, to say the least, and the second this evening was quite productive too. Food was started at 5cc's and hour and ran that way for 8 hours. At 10 pm tonight, the nurses started bumping his feeding by 5 cc's an hour until we get to 55 cc's/ hr; which will be morning. We will see how he tolerates this. So far, so good.
GI rounded again this evening, and rained on my parade. I was so excited that this could potentially be a simple fix. When asked what he thought, he told me, that he didn't think that was the problem. When I asked him what he thought was the problem he said he didn't know. I next asked him what he thought we could do to fix it, and he said "nothing". When I inquired about a fundoplication (as talked about by the GI on call yesterday) he said, that he would not recommend it for Matthew. It would fix the reflux, but not the retching. And with all the retching Matthew does he says it would ruin the fundoplication quickly. I asked him if he'd given up on helping him, and he was silent. He said that we'll just have to wait and see what Matthew does.
So we have immediately started "operation: prove GI doctor wrong". Everyone else we've talked to (every nurse, all the residents, the hospitalist who discovered this in the first place) seem to think that this is the obvious answer, and can't believe we overlooked it for so long. The hospitalist on this morning was fresh to the case, and believes that sometimes it just takes a fresh set of eyes to look things over and see if something easy was missed.
So all in all, I am glad I didn't pull the tube. Feeds are going well so far. We are praying they continue; because Matthew needs to get out the hospital and be home. His mother also needs to get out, before she makes a fool of herself anymore :)
Oh and one more nice thing that happened today:
They changed Matthew out to a "big boy" bed, so he and I could snuggle. We did and actually caught a pretty good nap together. Ah, the therapy that is done with some good snuggle time :) It heals what ails you.
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