The surgeon says that the procedure went very well. Everything just added up to a long day: a late start, a little longer than planned in surgery, longer in recovery, and then a wait for a room back up here on 5 west where they have been and are full up. They squeezed us in though, and we are glad to be here.
Toby was- not surprisingly- very uncomfortable yesterday and during the night. They have been using morphine and Tylenol to let him rest and he has wanted them both. He is starting to feel a little bit better this morning. They are going to try feeding him a slow drip through his new tube. I have seen it used for medicines already and it looks great. No more checking for tube placement or worries about accidentally putting fluids into the lungs. And I know he will be glad to have the irritant of the ng tube gone.
So we are back to the waiting game. Wait and see how he does with the feeds and recovery from surgery and then wait and see how effective the changes are at relieving the reflux problems - and what, if any, new problems they bring.
We will keep you posted!
Saturday, January 31, 2009
Thursday, January 29, 2009
1 lb 13 oz (his birth weight) to 13 lb 1 oz (Toby's weight today): That's a reversal we're thrilled to see.
The call came this afternoon with the schedule for tomorrow. Surgery will be at nine and should last about three hours. After an hour or so in recovery, he will be admitted.
It will be "laproscopic" surgery. Instead of a single, large incision, there will be four or five small ones. The surgeon will use robotic arms and a camera which he operates remotely while another surgeon assists. This procedure is supposed to have a much shorter and easier recovery period.
The results of the fundoplication surgery can be quite variable in terms of effectiveness and complications. Obviously, we want Toby to have the most positive outcomes and are praying to that end. Thanks to all of you for your continued concern and prayers for us. You give us strength and encouragement.
Tuesday, January 27, 2009
Toby continues to do well as we count down to surgery- only 3 more days. Thursday, he will return to the pediatrician for a check of the previously infected ear. The surgeon's office will call that afternoon with a scheduled time for the surgery on Friday. I am assuming it will be in the morning, so am going to Ann Arbor on Thursday. He will be in the hospital for 3 - 5 days.
He is learning and changing so quickly now. He prefers to sit up and doesn't like to be alone in bed as much any more, preferring the action and fun his siblings provide. Today, he surprised us with fits of laughter as he watched his sister's silliness. If he likes that kind of stuff, he will be very happy here. One of them is nearly always being silly.
But when he's had enough, he pulls a blanket over his head and shuts the world out. Nap time!
He is learning and changing so quickly now. He prefers to sit up and doesn't like to be alone in bed as much any more, preferring the action and fun his siblings provide. Today, he surprised us with fits of laughter as he watched his sister's silliness. If he likes that kind of stuff, he will be very happy here. One of them is nearly always being silly.
But when he's had enough, he pulls a blanket over his head and shuts the world out. Nap time!
Monday, January 19, 2009
It was back to the pediatrician today after a night in which Toby exercised his lungs and I exercised my legs- walking the floor. He has another ear infection; I am always glad to hear that it is nothing worse.
He did gain a few ounces over the weekend after I put the ng tube back in. He has refused to take any more bottles, though. So it is evident that the ng tube is a deterrent to his eating. This is a vote in favor of at least a g-tube so that he can work on his oral skills.
The attempt to wean Toby off reglan was also informative. After two days of reduced dosage, his vomiting was back and costing him significant amounts of each feeding. He is not able to do without the reglan in his current condition.
So having had a chance to do more reading and review both the big picture and some of the many details, I am satisfied that the plan in place- surgery for both a g-tube and fundoplication on the 30th- is the best choice for now.
Toby is sitting up some, as long as we stand by to catch that precious head when he invariably wobbles over. A weeble he is not. He is also starting to experiment with a few consonants. The proud dada now has a reason to come running; it does sound like he's being called.
Things we are thankful for today:
getting to go out in sunshine (very cheering)
faithful doctors
answers to our prayers for help in making the necessary decisions.
He did gain a few ounces over the weekend after I put the ng tube back in. He has refused to take any more bottles, though. So it is evident that the ng tube is a deterrent to his eating. This is a vote in favor of at least a g-tube so that he can work on his oral skills.
The attempt to wean Toby off reglan was also informative. After two days of reduced dosage, his vomiting was back and costing him significant amounts of each feeding. He is not able to do without the reglan in his current condition.
So having had a chance to do more reading and review both the big picture and some of the many details, I am satisfied that the plan in place- surgery for both a g-tube and fundoplication on the 30th- is the best choice for now.
Toby is sitting up some, as long as we stand by to catch that precious head when he invariably wobbles over. A weeble he is not. He is also starting to experiment with a few consonants. The proud dada now has a reason to come running; it does sound like he's being called.
Things we are thankful for today:
getting to go out in sunshine (very cheering)
faithful doctors
answers to our prayers for help in making the necessary decisions.
Thursday, January 15, 2009
Happy 5oth Birthday, Uncle Arthur
We had the scheduled visit with the surgeon on Tuesday. Yesterday, we were back at U of M for a pre-op consult with a nurse who works with the anesthesiologist. Today, it was back to the pediatrician for a recheck of the previously infected ear. (Yes, that problem at least is all cleared up.)
The surgeon felt that given the past month of positive weight gain and lack of pulmonary problems, we have a choice about whether or not to proceed with the surgery. Actually, there are three choices: continue as we are, have just a g-tube put in, or both a g-tube and fundoplication. I do not want to continue as we are because one of the drugs Toby has been taking (reglan) is not one he should be on long-term, if at all. The surgeon suggested I try taking him off it now and, with my pediatrician's agreement, I am weaning him off to see how he does now without it. Meanwhile, surgery (both g-tube and fundo) has been scheduled for Friday the 30th. This can be cancelled or postponed if Toby does unexpectedly well without the reglan.
The fundoplication is a treatment for his GERD (acid reflux disease). The upper part of the stomach is wrapped around the lower part of the esophagus to strengthen/create the valve that should be there to prevent stomach contents from moving back up. In theory, this prevents the reflux from occuring.
A g-tube is a port through the belly into the stomach- direct access, if you will. It is another way to give tube feedings. (Toby has been having his tube feedings through an ng tube. Ng means naso-gastric and is inserted through the nose and down into the stomach.) A g-tube can be used when tube feedings are need long term and would also be necessary with the fundo because the surgical site (stomach and esophagus) would be swollen for a time.
We continue to beg God for wisdom as we make decisions in the next few weeks.
The good news this week was that Toby began taking his bottle again. He has been refusing it the past few weeks except for an ounce or two every few days. I allowed him a short break from the ng tube to see what he could do. Evidently, he found hunger to be motivating. I think discomfort from the ng tube has also been a factor. When I put it back in today, he immediately became more fussy and less willing to eat. I did have to put it back, though, because he lost weight the last day or two without it.
We are thankful for all of you who are continuing to follow Toby's progress and for your prayers. It is a comfort to know that God's plans are good and cannot be thwarted even by "mistakes" his parents may make. It is a good time to remind ourselves both of God's goodness and his power.
The surgeon felt that given the past month of positive weight gain and lack of pulmonary problems, we have a choice about whether or not to proceed with the surgery. Actually, there are three choices: continue as we are, have just a g-tube put in, or both a g-tube and fundoplication. I do not want to continue as we are because one of the drugs Toby has been taking (reglan) is not one he should be on long-term, if at all. The surgeon suggested I try taking him off it now and, with my pediatrician's agreement, I am weaning him off to see how he does now without it. Meanwhile, surgery (both g-tube and fundo) has been scheduled for Friday the 30th. This can be cancelled or postponed if Toby does unexpectedly well without the reglan.
The fundoplication is a treatment for his GERD (acid reflux disease). The upper part of the stomach is wrapped around the lower part of the esophagus to strengthen/create the valve that should be there to prevent stomach contents from moving back up. In theory, this prevents the reflux from occuring.
A g-tube is a port through the belly into the stomach- direct access, if you will. It is another way to give tube feedings. (Toby has been having his tube feedings through an ng tube. Ng means naso-gastric and is inserted through the nose and down into the stomach.) A g-tube can be used when tube feedings are need long term and would also be necessary with the fundo because the surgical site (stomach and esophagus) would be swollen for a time.
We continue to beg God for wisdom as we make decisions in the next few weeks.
The good news this week was that Toby began taking his bottle again. He has been refusing it the past few weeks except for an ounce or two every few days. I allowed him a short break from the ng tube to see what he could do. Evidently, he found hunger to be motivating. I think discomfort from the ng tube has also been a factor. When I put it back in today, he immediately became more fussy and less willing to eat. I did have to put it back, though, because he lost weight the last day or two without it.
We are thankful for all of you who are continuing to follow Toby's progress and for your prayers. It is a comfort to know that God's plans are good and cannot be thwarted even by "mistakes" his parents may make. It is a good time to remind ourselves both of God's goodness and his power.
Monday, January 5, 2009
12 pounds 2 ounces and looks every bit of it! The nurse suggested we may have to stop calling him Toby and start calling him Tubby. He's probably not really to that point, but the contrast to his former lean look is enjoyable.
We are not doing as well at avoiding illness. Along with getting his monthly synergist shot today (for protection against RSV during this winter season), Toby was diagnosed with an ear infection. We were glad to hear it as we had plenty of time to imagine worse possibilities during the hours he cried inconsolably yesterday. Tylenol was his only true love- which gave us hope that it was something simple like a good old-fashioned ear infection.
I also made a visit to the doctor and am now being treated for bronchitis. I felt the invasion into my chest a few days ago and am so thankful that Toby's latest illness has not gone in that direction. His lungs continue to do well. His siblings also are managing to stay pretty healthy. Somehow, Toby seems to catch every germ that blows by, despite the precautions and industrial size bottle of sanitizer. He's been practically in isolation, only leaving the house to go to doctors and hospitals (admittedly not the healthiest of places), so I'm not sure if he is picking up the germs there or just letting the rest of us bring them to him.
But the new year brings new hope, and the knowledge that we are marching towards spring. Half-way there and thanking God for upholding us so far.
We are not doing as well at avoiding illness. Along with getting his monthly synergist shot today (for protection against RSV during this winter season), Toby was diagnosed with an ear infection. We were glad to hear it as we had plenty of time to imagine worse possibilities during the hours he cried inconsolably yesterday. Tylenol was his only true love- which gave us hope that it was something simple like a good old-fashioned ear infection.
I also made a visit to the doctor and am now being treated for bronchitis. I felt the invasion into my chest a few days ago and am so thankful that Toby's latest illness has not gone in that direction. His lungs continue to do well. His siblings also are managing to stay pretty healthy. Somehow, Toby seems to catch every germ that blows by, despite the precautions and industrial size bottle of sanitizer. He's been practically in isolation, only leaving the house to go to doctors and hospitals (admittedly not the healthiest of places), so I'm not sure if he is picking up the germs there or just letting the rest of us bring them to him.
But the new year brings new hope, and the knowledge that we are marching towards spring. Half-way there and thanking God for upholding us so far.
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