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
Monday, February 27, 2012
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
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