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
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