Matthew had another appointment with his Pulmonologist today and we were hoping that we might get some good news about his oxygen. Let me just catch you up a bit, at his last appointment the Dr said he would have taken him off, but he wanted a current echo and x-ray. So we got all of that taken care of and today he said he was ready to take him off his oxygen considering his echo and x-ray looked good. He was saturating at 99% today to boot. The Dr asked about his breathing (wanted to know if he always breaths heavy) Yes, he does always breath heavy. He works very hard to breathe, but is not uncomfortable. With that being said he has decided to leave his oxygen on him for the time being and gave no indication of a time to shoot for to come off of oxygen. The Dr said he needs to get bigger and stronger and so do his lungs. Once his lungs get stronger his breathing should slow down to a more normal range. He currently breathes at a rate of about 50 breaths per minute. Normal for an infant is between 30-40 bpm. This bummed me out a bit, as I was hopeful we would be oxygen free today. Oh well I guess I am glad that they are being cautious. I would rather be safe then have to try to catch up if he came off oxygen and had a set back. We are used to having it on him all the time so it will not any different then what we have been doing. This is just one of the many things that reminds you that the CDH beast is still lurking around the corners. The good news is that he doesn't want to see him for two months. His doctors visits are getting a little more spaced out, not a monthly thing. That has to mean he is doing things right. Matthew will not see any other doctors until September then he gets to see all of them that month. So we may remain quiet until then.
Cheers,
Jaime
Monday, July 16, 2012
Friday, June 8, 2012
"Moving" right along
A Lot has happened since my last post. First off we packed up our family and moved to Southern California from Boise, ID. This was a hard decision as almost all of our family is in Boise. We just felt that this was the right decision for our family at this time in our lives. Jim traveled about 50% of the time, with Finn getting older and noticing when daddy is gone and Matthew's extra needs we felt that he needed to be home every night for them. That is what this move has allowed, daddy to be home every night and not having to leave.
One of the things that made it a little harder to think about was finding ALL new doctors for Matthew. We had a great team of Doctors in Boise that were all in the same building, in the same wing. Talk about convenient. He saw a surgeon, and pulmonologist and a cardiologist all in the same place. He also had PT and OT weekly that came to the house. It has been quiet the experience getting New doctors lined up. I finally got an appointment with a pulmonologist here and he refered me to the other doctors that he will need. We saw the Dr. on Monday and he thought Matthew looked great. He said he would have taken him off his oxygen if he had a recent Echo and x-ray. So I have those scheduled in two weeks. I am hoping that his pulmonary hypertension is completely gone. Since he has been out of the NICU he has had 3 or 4 Echo's done and he still has very slight PH. I am just hopeful that it is gone. We see the pulmonologist in 6 weeks so we will have to be patient and see what comes of the echo and x-rays and what he says. I did ask the Dr if we needed a pulse ox at home and he said no. That was a relief to not have to worry about. We had one in Boise, but we had to switch Medical supply companies so we had to get all different stuff. A pulse ox was not part of the supplies the new company supplied.
Matthew has been doing great health wise. He is making slow but steady progress with his developmental milestones. He still does not sit up and he is 7 1/2 months old. I am not worried about that as much as his feeding issues. He is still very orally aversive. I give him little tastes of rice cereal or fruit like applesauce. He will take little bits of it then he gags after a few bites. Jim gave him some ice cream the other day and he shuddered so bad. I guess he is not like his dad that way, not an ice cream lover.
Matthew has the best personality, he is the happiest, sweetest little boy. He smiles all the time, especially when big brother Finn is around. He can not get enough of him. They are too cute together They both just sit and laugh and play all day long. It is the best feeling to just sit and watch your kids and the pure unconditional love they have for each other. It just melts my heart.
I think I have caught up this blog for now. I will post after his other Doctor appointments and what I find out about his oxygen.
Jaime
Tuesday, April 10, 2012
Long over due post
I just realized that it has been quite awhile since I have posted. Sorry about that. I guess no news is good news for the time being. Matthew has been doing really well so far. He did have to have two minor surgeries on his abdominal incision. I have been fighting his incision since he came home from the hospital. I think in the four months he has been home he has only missed about 4 weeks of not going to see the surgeon. They finally decided to go in and see if they could find any sutures in his incision. The first surgery four weeks ago they did not find any, but that spot is now healing...They went in about a week and a half ago to do the other part and they did find a suture that time. Now both spots are healing... YAY!!!! I can not tell you how happy this makes me. I was afraid that I was going to be fighting this forever.
We had his monthly follow up appointments with all of his specialists and they said he is making great progress. Unfortunately we are moving away from our hometown here in Boise and moving to southern California, so we will have to find ALL new doctors for Matthew. This makes me a little nervous. So if any of you read this blog and are in the So Cal area and have good doctors I would take any and all recommendations of doctors. If we were not moving the doctors would start to wean Matthew off of his oxygen and his meds. That was great news to hear. They are going to leave him on everything and let the Doc's in CA decide what they want to do.
Matthew continues to gain weight, thanks to him finally tolerating his formula. He is still below the 10th percentile for height and weight, but he is making good progress. He is still not taking anything by mouth, I did take him to have an eating evaluation today. They said to just forget about trying to give him formula by bottle and go straight to purees. So we can start to see if we can get him interested in food this way. I really hope that he likes real food and decides it is a good thing. He is okay with things in his mouth, just not liquids. You can put toys or fingers in his mouth and he tolerates that just fine. He loves to chew on his own hands. So his oral aversion is not as severe as they were originally thinking. More good news. So overall He is doing really good. We just need him to continue to tolerate feeds and grow. Hopefully we will continue to have more quiet times from the blog. Because we like the no news is good news. If I would have something to post everyday I am not sure I would like that situation. So until I have more news for any of you take care.
We had his monthly follow up appointments with all of his specialists and they said he is making great progress. Unfortunately we are moving away from our hometown here in Boise and moving to southern California, so we will have to find ALL new doctors for Matthew. This makes me a little nervous. So if any of you read this blog and are in the So Cal area and have good doctors I would take any and all recommendations of doctors. If we were not moving the doctors would start to wean Matthew off of his oxygen and his meds. That was great news to hear. They are going to leave him on everything and let the Doc's in CA decide what they want to do.
Matthew continues to gain weight, thanks to him finally tolerating his formula. He is still below the 10th percentile for height and weight, but he is making good progress. He is still not taking anything by mouth, I did take him to have an eating evaluation today. They said to just forget about trying to give him formula by bottle and go straight to purees. So we can start to see if we can get him interested in food this way. I really hope that he likes real food and decides it is a good thing. He is okay with things in his mouth, just not liquids. You can put toys or fingers in his mouth and he tolerates that just fine. He loves to chew on his own hands. So his oral aversion is not as severe as they were originally thinking. More good news. So overall He is doing really good. We just need him to continue to tolerate feeds and grow. Hopefully we will continue to have more quiet times from the blog. Because we like the no news is good news. If I would have something to post everyday I am not sure I would like that situation. So until I have more news for any of you take care.
Monday, February 27, 2012
Hospital Tour
Last Monday morning I went to get Matthew up and he was soaking wet. I checked his feeding tube adaptor and everything wast closed properly. So I thought that maybe he had had a VERY wet diaper. I went to pick him up and the top of his pajamas were soaked as well. I immediately opened him PJ's and saw his feeding tube laying on his chest. It has somehow some out during the night and he never mad a sound to let us know he was getting soaked. I called the surgeon's office and they told me to meet them at the ER. So we got to the ER and got checked into a room and my phone rings, It's the surgeon asking what room we were in so I told her and she appears about 3 seconds later. She is an on-call surgeon that is from California. I have actually met her before so I knew who she was and she knew Matthew. The nurses in the ER look at her like she is crazy because they do not know who she is. Then the next thing we all know is that Jim and I are holding Matthew still while the Dr is trying to get his hole reopened to insert a new g-tube. She looks around and ALL the nurses had abandoned us. She said I see the nurses didn't want to stick around and they don't even know who I am. Made us feel real good about that hospital. (It is a different one then the one he was born and in the NICU) The Dr finally got the hole reopened and a new tube in and we were on our way. The whole process only took about an hour. Pretty impressive for an ER visit.
We get home and Matthew is still pretty fussy all day and that night he wouldn't sleep anywhere but in my arms in the recliner. Needles to say neither one of us got much sleep. He cried most of the night so the next morning I called the surgeons office back and they told us to come in. They were not seeing patients that day, but they would see us. We got the office and the Surgeon who had done all of Matthews previous surgeries was the surgeon. He looked at the new button (g-tube) that was put in and said he thought it was too tight so they decided to put a different kind of tube in. He had a mic-key g-tube and they wanted to put a mini in. This requires him to go to the PICU to have this done. We thought about it and decided we didn't want to go through anymore sleepless nights due to his discomfort, so we headed to the PICU at the hospital. We got checked in there and the surgeon and his NP showed up a few minutes later and got the new button put in. We were then sent on our way. This process only took about 1 1/2 hours total. Not too bad considering they actually had to admit him into the hospital. Shortest hospital stay on record I think. I hope they stay that way. We got Matthew home and he was much more comfortable that day/night and continues to be. It appears that he needed to tour the other hospital in town. He needed us to see the ER and the PICU in two days. Sure glad he decided to do that. :)
He has been doing fine since then. We have a follow up appointment with the Cardiologist and Pulmonologist next Monday so I will let you know how those appointments go. We are hoping to start to see his Pulmonary Hypertension going away. He still has a very mild amount so hopefully they will see it is getting better.
I am also hoping Matthew doesn't decide that he needs to see any other Doctors anytime that they are not scheduled, But we all know CDH babies have a mind of their own and will do what they want.
Until the next update,
Jaime
We get home and Matthew is still pretty fussy all day and that night he wouldn't sleep anywhere but in my arms in the recliner. Needles to say neither one of us got much sleep. He cried most of the night so the next morning I called the surgeons office back and they told us to come in. They were not seeing patients that day, but they would see us. We got the office and the Surgeon who had done all of Matthews previous surgeries was the surgeon. He looked at the new button (g-tube) that was put in and said he thought it was too tight so they decided to put a different kind of tube in. He had a mic-key g-tube and they wanted to put a mini in. This requires him to go to the PICU to have this done. We thought about it and decided we didn't want to go through anymore sleepless nights due to his discomfort, so we headed to the PICU at the hospital. We got checked in there and the surgeon and his NP showed up a few minutes later and got the new button put in. We were then sent on our way. This process only took about 1 1/2 hours total. Not too bad considering they actually had to admit him into the hospital. Shortest hospital stay on record I think. I hope they stay that way. We got Matthew home and he was much more comfortable that day/night and continues to be. It appears that he needed to tour the other hospital in town. He needed us to see the ER and the PICU in two days. Sure glad he decided to do that. :)
He has been doing fine since then. We have a follow up appointment with the Cardiologist and Pulmonologist next Monday so I will let you know how those appointments go. We are hoping to start to see his Pulmonary Hypertension going away. He still has a very mild amount so hopefully they will see it is getting better.
I am also hoping Matthew doesn't decide that he needs to see any other Doctors anytime that they are not scheduled, But we all know CDH babies have a mind of their own and will do what they want.
Until the next update,
Jaime
Monday, February 6, 2012
Trucking right along
We had three appointments this morning, first one was with the pediatric cardiologist, then the pediatric pulmomologist and finally the surgeon again. The cardiologist did another echo on Matthew. He found everything to be good with the heart, things are still a little squished looking, but that is to be expected. Matthew still has a little bit of pulmonary hypertension, so he will continue to be on oxygen for approximately another 5-6 months. This is the best vasodilator that there is so it is for his PH, rather then him actually needing it for oxygen. The pulmonologist saw him today for the first time. He thought Matthew looked really good for all that he has been through. He is still a little concerned with how fast Matthew breaths, but doesn't feel that they need to do anything different at this time. He is keeping all his medications and oxygen just the same. I am pretty sure Matthew would disagree with them about the oxygen. He thinks it is not necessary. He either puts the cannula in his mouth or up by his eyes. He thinks it works better that wasy. :) The Dr. is going to let him outgrow his medication and see how he does with that. Both Doctors want to continue to see him on a monthly basis at this point and time. They both said he is doing good so far and to just keep doing what we have been doing.
We saw the surgeon again because we can not get his abdominal incision to heal. It has been almost three months since that surgery. It could have a little to do with where the incision is and how he breathes. The incision moves a lot. So for now they put him back on antibiotics and on a prescription strength triple antibiotic ointment until it is completely healed. Hopefully we can get the incision to finally heal. They are pretty sure it is just his body reacting to the sutures that were used. His body does not like them. They do not feel they need to go in and remove them at this point. So we do not have to go back to the surgeon until the end of April unless this incision keeps acting up.
Update on day to day life:
Matthew is still not taking anything by mouth. He will take a drop or two of formula and then gags. So we have therapy twice a week to hopefully get him eating by mouth. They have said that this will be a long road, but they are confident that he will do it. Even if it is skipping the liquid stage and going to the solid stage when he is ready. He continues to gain weight, not quite as much as they would like this last week ,but he is still gaining. He is a pretty happy boy most of the time. He is getting better at not needing to be held all the time. I can lay him on his play mat or set him in his bouncy seat and he is content longer now. Which gives me a little more freedom. He is still on the feeding pump eating every three hours during the day and continuously at night for 10 hours. It has helped with our sleep at night. He is getting better at sleeping through the night. He still wakes at least once each night and you have to go thump him bum for a couple minutes. We can not really let him cry for extended periods of time because of his PH, if he cries for long periods it can make his PH more severe and that is not a good thing. So he is not allowed to cry for very long. This is a little different from what we did with Finn. So it has been a little bit of an adjustment. Other then that he is doing really good and is a pretty happy boy most of the time. I am just so thankful that we have had him home with us for over a month now. the time we spent in the NICU seems like a lifetime ago now.
Thank you for your continued thoughts and prayers,
Jaime
We saw the surgeon again because we can not get his abdominal incision to heal. It has been almost three months since that surgery. It could have a little to do with where the incision is and how he breathes. The incision moves a lot. So for now they put him back on antibiotics and on a prescription strength triple antibiotic ointment until it is completely healed. Hopefully we can get the incision to finally heal. They are pretty sure it is just his body reacting to the sutures that were used. His body does not like them. They do not feel they need to go in and remove them at this point. So we do not have to go back to the surgeon until the end of April unless this incision keeps acting up.
Update on day to day life:
Matthew is still not taking anything by mouth. He will take a drop or two of formula and then gags. So we have therapy twice a week to hopefully get him eating by mouth. They have said that this will be a long road, but they are confident that he will do it. Even if it is skipping the liquid stage and going to the solid stage when he is ready. He continues to gain weight, not quite as much as they would like this last week ,but he is still gaining. He is a pretty happy boy most of the time. He is getting better at not needing to be held all the time. I can lay him on his play mat or set him in his bouncy seat and he is content longer now. Which gives me a little more freedom. He is still on the feeding pump eating every three hours during the day and continuously at night for 10 hours. It has helped with our sleep at night. He is getting better at sleeping through the night. He still wakes at least once each night and you have to go thump him bum for a couple minutes. We can not really let him cry for extended periods of time because of his PH, if he cries for long periods it can make his PH more severe and that is not a good thing. So he is not allowed to cry for very long. This is a little different from what we did with Finn. So it has been a little bit of an adjustment. Other then that he is doing really good and is a pretty happy boy most of the time. I am just so thankful that we have had him home with us for over a month now. the time we spent in the NICU seems like a lifetime ago now.
Thank you for your continued thoughts and prayers,
Jaime
Thursday, January 19, 2012
Asking for Help
I have been getting the question a lot. What can we do to help? When I am asked this question I do not have an answer. It kind of catches me off guard and I can not think of things that people can help with. So I thought I would think about it ahead of time and post it here. This is a very hard thing for us to do. We are not the type of people to ask for help. It is hard for us to even let people help out. I have started to come to terms with it and have realized that it is okay to have help. I am still probably not going to call people up and say hey come help me. I just can not seem to get over this part, but if you are wanting to help out and are free and have nothing better to do then this is what we could use help with...
When Jim is out of town I could use a little break during the week either to go to the grocery store, or get other needed supplies for the house or even tap a little nap. Especially if Matt continues to not sleep very well at night.
If anyone feels so inclined I could sue help with vacuuming, mopping, sweeping and all that good stuff. I am able to stay on top of dishes and laundry. Even if it may appear that I am not. I can do a load of laundry a day and stay on top of it pretty well. I am able to do the dishes after meals and when preparing Matt's feeds. So I don't need as much help with this stuff.
When Jim is gone I could use a meal or a visitor to come by to make sure I have not gone completely insane. As I am not able to get out of the house. We can not go out in public (i.e. grocery stores, malls, bank etc..) We can go to other people's houses if and only IF no one is sick.
I think this pretty much sums it up of what I could use help with. Again, I will probably not call you to ask for help, so if you have a few extra minutes in your busy days and want to come by and help it would be greatly appreciated.
So that is pretty much the gist of it. I hope this helps anyone who wants to help and doesn't know how. You can also just call and come by anytime, we are more then likely home.
Thank you in advance,
Jaime
Surgeon Follow-up
Yesterday Matthew had his first follow-up visit with the surgeon. She felt all of his post op stuff looks good and nothing to be too concerned with at this point except for one minor thing...We have been into the office a couple of times in the last couple weeks due to his abdominal incision having a bit of an issue. They say that his body is having a reaction to the sutures. They fins this kind of odd since it is almost 2 months post op. They have been wanting to avoid putting him on antibiotics, but decided this was necessary at this point. They were not having me put any ointment or anything on it and now they are. So hopefully all of this will make his incision heal like it should have.
I also had to replace his G-tube by myself yesterday.( with the instruction of the surgeon) It was not as bad as I was anticipating. It was really pretty simple. They wanted to make sure I know how to do it so if it ever comes out. I now feel confident that I can change it if I ever have to in an emergency.
We had a peditrician appointment last week and she does not want to see him until he is 4 months. I am taking that as a positive thing. She does call every week to check on him. She just wants to make sure he does not go into the office any more then absolutely necessary.
We have our first follow up appointments with the pediatric cardiologist and pediatric pulmonologist in two weeks. I am very curious as to how those appointments will go. I have met the cardiologist briefly at the hospital but we have not met the pulmonologist. I am hoping that they have positive things to say. These are the doctors that will let us know how long Matthew will be on oxygen and how many medications he still needs to be on.
As you can see I stay quite busy with just Doctors appointments, not to mention all the home care we are receiving. We are currently receiving in home care for the following..Nursing, Physical Therapy, and a dietitian. Nursing comes once a week and the physical therapist is coming twice a week. The therapist is working with Matthew trying to get him to be able to eat orally. She says it looks like it is going to be a long road to get him to where he needs to be. That seems to be the story of his life. Speaking of in home care I will have someone arriving any minute now so I need to say see ya later..
Jaime
I also had to replace his G-tube by myself yesterday.( with the instruction of the surgeon) It was not as bad as I was anticipating. It was really pretty simple. They wanted to make sure I know how to do it so if it ever comes out. I now feel confident that I can change it if I ever have to in an emergency.
We had a peditrician appointment last week and she does not want to see him until he is 4 months. I am taking that as a positive thing. She does call every week to check on him. She just wants to make sure he does not go into the office any more then absolutely necessary.
We have our first follow up appointments with the pediatric cardiologist and pediatric pulmonologist in two weeks. I am very curious as to how those appointments will go. I have met the cardiologist briefly at the hospital but we have not met the pulmonologist. I am hoping that they have positive things to say. These are the doctors that will let us know how long Matthew will be on oxygen and how many medications he still needs to be on.
As you can see I stay quite busy with just Doctors appointments, not to mention all the home care we are receiving. We are currently receiving in home care for the following..Nursing, Physical Therapy, and a dietitian. Nursing comes once a week and the physical therapist is coming twice a week. The therapist is working with Matthew trying to get him to be able to eat orally. She says it looks like it is going to be a long road to get him to where he needs to be. That seems to be the story of his life. Speaking of in home care I will have someone arriving any minute now so I need to say see ya later..
Jaime
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