Tuesday, October 4, 2011
It's been awhile
Sorry for the lack of the blog update; but life has gotten in the way of blogging. I have lots to share, but time is not on my side right now. I do have time to show you a sweet picture from a photo shoot my friend Beth did in our home a couple weeks ago. Does anyone know who told this little boy it was ok to look so grown up??
Monday, August 15, 2011
First Day of School
Today marked the first day of school for the year. Oh, I was not ready for school to start; not ready for my babies to be gone again (other than when they fight!) and not ready for cooler weather and shorter days. But alas, no one asked me if I was ready; and time marches on.
Obligatory 1st day of school picture on the front step..it's a tradition!
Mason-2nd grade
Megan-5th grade
and Micah-8th grade (who thinks he's too big for 1st day of school pictures)
Wednesday, August 3, 2011
Today just may be the day
Since Friday, a lot has happened. I was told, through the resident, that our surgeon was on vacation, and the other surgeons weren't willing to operate on his hernia because he wasn't there patient. Well, I came unglued then. I try very hard to not lose my marbles while I'm in the hospital, but I wasn't ok with that answer. If the hernia truly was causing the problem; I wanted it gone now. After much visiting (and possibly a few tears on my part...I'll never tell) with the charge nurse; she called the surgeons and brought them directly to my room. After chatting with them, I realized it was a communication error. Yes, they didn't want to operate on him, but it was because they didn't know what to do with the hernia. It didn't have intestinal involvement (it's filled with fluid from tip of his shunt), but because it was pressing on the esophagus, they didn't know what would be the best answer for Matthew. He is a "fragile" child, and they didn't want to cause more harm than good. I completely understood. Communication is a brilliant thing! Our surgeon wouldn't be back till Wednesday, and we would talk then.
Saturday and Sunday were pretty much lazy days. Nothing new happened over the weekend; and we talked about dismissal Monday. Matthew's retching had improved and we were comfortable with him being home, and figuring out where to go from here once we were settled.
Monday, as meds were being ordered, dismissal papers signed; Infectious disease doctors walked in the room. Matthew had developed a cough that morning, and he was really mucousy. They took a listen to him and said that they thought he had pneumonia. A chest x-ray was done with a comfirmation of pneumonia. Twice now this little boy has skirted dismissal! They doc's wanted to keep him another couple days to see which way the pneumonia would go, and give him (yet another) IV antibiotic for a few days before we switched over to oral antibiotics. I reluctantly agreed. I didn't want him to get home and get significantly worse. By evening he was on oxygen anyway.
Yesterday we were able to visit with palliative care again (they've been wonderful...I would suggest ANYONE with a chronically ill child...even if don't have a child as fragile as Matthew....to get in touch with them...they are fantastic) and discuss our desires and wants for Matthew. They helped encourage the medical team to allow us to go home. Not that they have been against it; but it just works so nicely to work with a team. So today, barring that Matthew doesn't change his mind, we are getting outta here! 29 days is too long!
Saturday and Sunday were pretty much lazy days. Nothing new happened over the weekend; and we talked about dismissal Monday. Matthew's retching had improved and we were comfortable with him being home, and figuring out where to go from here once we were settled.
Monday, as meds were being ordered, dismissal papers signed; Infectious disease doctors walked in the room. Matthew had developed a cough that morning, and he was really mucousy. They took a listen to him and said that they thought he had pneumonia. A chest x-ray was done with a comfirmation of pneumonia. Twice now this little boy has skirted dismissal! They doc's wanted to keep him another couple days to see which way the pneumonia would go, and give him (yet another) IV antibiotic for a few days before we switched over to oral antibiotics. I reluctantly agreed. I didn't want him to get home and get significantly worse. By evening he was on oxygen anyway.
Yesterday we were able to visit with palliative care again (they've been wonderful...I would suggest ANYONE with a chronically ill child...even if don't have a child as fragile as Matthew....to get in touch with them...they are fantastic) and discuss our desires and wants for Matthew. They helped encourage the medical team to allow us to go home. Not that they have been against it; but it just works so nicely to work with a team. So today, barring that Matthew doesn't change his mind, we are getting outta here! 29 days is too long!
Friday, July 29, 2011
It's friday...
and we are still here.
Wednesday, due to all of the retching, they did a shunt series (x-ray) and a CT of the head to make sure his shunt was working properly. That checked out fine, but I found out Wednesday night that on the xray of his shunt, they saw a "mass" behind his heart. Matthew was already scheduled for an MRI of his brain, and his botox on Thursday, so they added on a CT of the chest. I was a little freaked. I mean, the kid doesn't need one more thing and the "c" word was brought up. I didn't want to freak though, and didn't even google it (which is a first for me).
Thursday afternoon, we learned the results. His MRI is unchanged (they were looking for a chairi malformation..which can cause retching) but his CT showed a diaphragmatic hernia that was fluid filled, and pressing on his esophagus. The doctors seem to think it is very plausible that this is what has been causing his retching at least for the last few months. It's also possible that it isn't the case, but we gotta hope, right??
Surgery came by last evening and was concerned it was fluid filled. It didn't make clinical sense to them (I didn't understand why it puzzled them, but asking them just confused me more), why there was fluid in it, so they ordered an upper GI, and possibly an aspiration of the fluid from it (don't have any clue how they'd aspirate it, but it sounded not comfortable).
Preliminary upper GI results from this morning say that there is no stomach involvement, which I believe is good. I got a chance to talk the radiologist, and asked her about the fluid in the hernia. What she said made complete sense. Because he has a shunt that empties fluid into his abdomen, fluid is going to get caught in the hernia. Why didn't I think of that? It's about a 5cm all the way around hernia, which I guess I understand is fairly large for his size. The surgeons seem to be dragging there feet to do anything about this on a Friday, but I am not done fighting this battle, especially since everyone seems to think this is causing his retching, and is making him miserable.
And as an added bonus {insert sarcasm}, they saw another clot in his jugular vein on the CT. Infectious disease says that now we have a total of 3 clots (one in his heart, one in his subclavian vein, and now one in his jugular) that there is a good possibility of a clotting disorder. WONDERFUL; exactly what Matthew needs; one more specialist.
We were hoping this weekend we'd be able to go, but it looks like that won't be the case. It's gonna be a few more days at least.
He is still requiring a LOT of ativan to keep him somewhat comfortable (enough to sedate a horse, actually...and that isn't an overstatement. The kid metabolizes it like crazy!), so we're hoping the surgery and fixing the hernia will make a big difference for him. I think he's trying to set a record for the amount of procedures needing anesthesia in one hospital stay.
Wednesday, due to all of the retching, they did a shunt series (x-ray) and a CT of the head to make sure his shunt was working properly. That checked out fine, but I found out Wednesday night that on the xray of his shunt, they saw a "mass" behind his heart. Matthew was already scheduled for an MRI of his brain, and his botox on Thursday, so they added on a CT of the chest. I was a little freaked. I mean, the kid doesn't need one more thing and the "c" word was brought up. I didn't want to freak though, and didn't even google it (which is a first for me).
Thursday afternoon, we learned the results. His MRI is unchanged (they were looking for a chairi malformation..which can cause retching) but his CT showed a diaphragmatic hernia that was fluid filled, and pressing on his esophagus. The doctors seem to think it is very plausible that this is what has been causing his retching at least for the last few months. It's also possible that it isn't the case, but we gotta hope, right??
Surgery came by last evening and was concerned it was fluid filled. It didn't make clinical sense to them (I didn't understand why it puzzled them, but asking them just confused me more), why there was fluid in it, so they ordered an upper GI, and possibly an aspiration of the fluid from it (don't have any clue how they'd aspirate it, but it sounded not comfortable).
Preliminary upper GI results from this morning say that there is no stomach involvement, which I believe is good. I got a chance to talk the radiologist, and asked her about the fluid in the hernia. What she said made complete sense. Because he has a shunt that empties fluid into his abdomen, fluid is going to get caught in the hernia. Why didn't I think of that? It's about a 5cm all the way around hernia, which I guess I understand is fairly large for his size. The surgeons seem to be dragging there feet to do anything about this on a Friday, but I am not done fighting this battle, especially since everyone seems to think this is causing his retching, and is making him miserable.
And as an added bonus {insert sarcasm}, they saw another clot in his jugular vein on the CT. Infectious disease says that now we have a total of 3 clots (one in his heart, one in his subclavian vein, and now one in his jugular) that there is a good possibility of a clotting disorder. WONDERFUL; exactly what Matthew needs; one more specialist.
We were hoping this weekend we'd be able to go, but it looks like that won't be the case. It's gonna be a few more days at least.
He is still requiring a LOT of ativan to keep him somewhat comfortable (enough to sedate a horse, actually...and that isn't an overstatement. The kid metabolizes it like crazy!), so we're hoping the surgery and fixing the hernia will make a big difference for him. I think he's trying to set a record for the amount of procedures needing anesthesia in one hospital stay.
Wednesday, July 27, 2011
Still here
Matthew is still at Children's. Retching, has become a real problem. He is requiring 7 times the normal amount of his medication that we use to control the vomiting. He is scheduled for an MRI and rebotoxing his salivary glands (this helps with his secretions) on Thursday. He has been back on TPN since Monday, and the retching is no better. The doctors are unsure now if it is brain related, GI related, or secretion related. This is the only thing keeping us in the hospital. We're praying they'll figure something out on Thursday that will help him.
His arm is not swollen anymore, so I believe the clot in his arm is gone. I believe they will look at his heart again before we leave to see if the vegetation is smaller in his heart. They do not want us going home on TPN and neither do we. That is what started this whole ordeal in the beginning. When he is ready for discharge, he will go home on two IV antibiotics for the next (at least) 4 weeks.
So basically, we've gotta get his retching under control. It's worse than it ever been (and that's saying a lot), but he still manages to smile in between. He's a strong kid!
His arm is not swollen anymore, so I believe the clot in his arm is gone. I believe they will look at his heart again before we leave to see if the vegetation is smaller in his heart. They do not want us going home on TPN and neither do we. That is what started this whole ordeal in the beginning. When he is ready for discharge, he will go home on two IV antibiotics for the next (at least) 4 weeks.
So basically, we've gotta get his retching under control. It's worse than it ever been (and that's saying a lot), but he still manages to smile in between. He's a strong kid!
Friday, July 22, 2011
pluggin along...
Matthew is slowly showing progress each day. By Monday, I got my first smiles from him.
I'm going home this weekend to work, and Steve is taking bedside vigil with Matthew. It will be good to get away for a while, but I will miss my little guy. I miss my big kids so much. They are in SD and having a good time, being spoiled rotten. I can't wait to get home, and spend the last couple weeks with them before school starts. We sure are hoping by the beginning of next week we can go home!
- His arm is still puffy from the clot in his vein, but today is the first day I can say that I think it's starting to get smaller.
- His kidneys are back working in full function. He is getting two different antibiotics in his IV. One every 8 hours and one every 12 hours
- He is having lots and lots of retching; more than we've ever seen before. We've been problem solving for the last few days, and we think we may have finally figured out a couple of reasons why 1) since he was so sick, his brain is still agitated. This is common when brains aren't 'wired" correctly. This should get better as Matthew heals. 2) we had to take him off the medication that he takes for gastric motility as it can interfere with one of the antibiotics and cause "sudden cardiac death"..yikes. The doctors are collaborating and trying to figure out the motility issues, and we are giving him extra ativan while his brain is "angry". That has seemed to help today.
- Daily rounds have taken on more of a light hearted tone. The doctors today told me how worried they were that Matthew might not make it. . It's nice to hear them laughing and joking, versus talking in quiet serious voices.
I'm going home this weekend to work, and Steve is taking bedside vigil with Matthew. It will be good to get away for a while, but I will miss my little guy. I miss my big kids so much. They are in SD and having a good time, being spoiled rotten. I can't wait to get home, and spend the last couple weeks with them before school starts. We sure are hoping by the beginning of next week we can go home!
Sunday, July 17, 2011
7/17
Just gonna give some bullet point updates:
- Steve came home from the hospital today. He slowly gained the ability to control his arms and legs on Saturday. This morning he was able to walk with the help of the nurse. It is still very exhausting, slow work for him to walk at all. He is home with a walker, and is only moving from bed to bathroom or chair. He is very weak, but each day we've seen improvements. We have no idea what caused this attack on his body. West Nile Virus testing will be a couple more days before results, but otherwise everything else is coming back negative. He did have mono a month ago, so maybe his body was still weak from that and some weird virus got him, we don't know.
- Matthew is continuing to get a little better every day. Last night, His left arm got really puffy and he acted like it really hurt him. The doctors looked at it and ordered an ultrasound. The ultrasound done last night (about 1 am Sunday morning) was inconclusive, but this morning around 8 am the radiologist requested to re do the ultrasound himself, and found a 2cm clot in his subclavian vein attached to the port and the vein. His port still functions, the clot is on the other side of the port, maybe best to explain it as "upstream" from the port, but none the less, the 1 week old port must come out. This means surgery AGAIN for Matthew. Grr. The hardest part is now going to be figuring out what kind of venous access to put in. He is not a PICC candidate because the left arm has a clot and the right arm is where the origional infection was. He most likely will get a femoral central line or a intrajugular line. Both have risks, but without venous access, Matthew most likely won't be able to fight off the infection. He was also started on lovenox to prevent any other clots from happening, and the hemotology doc's want a couple days of that on board, and then off it a couple days before they can do surgery. Not sure when this surgery will happen.
- I was able to get out of the hospital and spend some time with the kids and Steve at home. Chrissy was able to stay again with Matthew for the afternoon, and I also got a much needed nap. My parents took the kids back to South Dakota tonight for a week or two, and Steve's mom will stay one more day with Steve, and then we're going to (hopefully) coerce him to come and stay up in the hospital with me for a couple of days so I can keep an eye on him.
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