5/28- 5/30
Well the weekend wasnt very eventful. Friday, Saturday, and Sunday Tripp seemed to continue to get a little bit better each day, going down some on his oxygen needed and his oxygen rate not going down as it was before. No one is sure of what really caused it but Sunday night he had a bad night and had to go up on his oxygen and it was apparent that it was a lot harder for him to breathe. He was this way on Monday as well so the doctors ordered a chest xray, the results were that it was an improvement from his last one on Thursday, so we were still clueless about what caused him to change over night the way he had. Since this was a holiday weekend the specialist that he needed to see weren't in and since in was not an emergent situation he would be seen the next day.
5/31
Today Tripp had a hearing test this morning, results are still not back yet. Then he had his upper gi that was needed before he had surgery for a gtube. This came back with normal results. The ENT came by and said that his vocal cords are inflamed and that this may be the reason for the change as it indicates aspiration from acid reflux. For this we are now starting some prevacid, but results may take around a week because all of the inflamation has to go down first. Plastics came by to check on him, everything still looks fine from his initial surgery and as of now we are not looking at the jaw extraction. Most children will outgrow the small jaw and that is what we are hoping for Tripp as this is a pretty invasive surgery and process and he would have to be in the hospital for a few months. However, this is not totally off of the table he still wanted to consult with ENT before making that decision and see how he progresses while we are here. Tomorrow we will see the pediatric surgeon to talk about the surgery for the gtube. On a positive note, once he is done here with all of the procedures and is just waiting to go home, we asked the doctors (this had been mentioned to us at Roanoke so thats why we asked them about it) if he could then be transfered back to Roanoke during this period and they agreed that it would be just fine. So at least the 3 of us would be in our own home just waiting for the 4th to come home. So even though we still arent sure of whats going to happen, or what is actually going on with Tripp right now, there is some light at the end of the tunnel (God must of known I really needed that :) ).
Tuesday, May 31, 2011
Friday, May 27, 2011
May 22, 2011- May 27, 2011
5/22
Fentenyl was discharged completely and he was given tylenol by mouth with each feeding. He was also changed to a by mouth antiobiotic so that the central line could be taken out.
5/23
This is the first day that we tried the bottle, but he did not want it, however he had sucked on his paci for a minute or 2 so that was a good sign. Still tired today.
5/24
Ate 10ml from bottle at noon and 15ml from bottle at 6pm. Increasing like this was a good sign to us.
5/25
Ate 8 ml from bottle at noon, 20ml at 3pm, 5 ml at 6pm.
5/26
Ate 16ml from bottle at noon. After this Tripp was much more congested, and the doctors thought we should hold off on the bottle anymore as long as he was having a hard time breathing. A chest xray was done and came back showing some atelectasis and haziness. The doctors weren't sure if this was from him aspirating some or if this was an infection he had picked up. So for precautions he was started on vancomyocin and gentamicin and blood and urine cultures were obtained. A swallow study would also be done the next day. Also Tripp has been consistantly losing a small amount of weight over the past days, and his breastmilk is now being mixed with some enfamil concentrate so that he can get more calories in a feeding with the same amount of volume he needs.
5/27
A swallow study was done this morning and concluded that Tripp is aspirating some each time that he swallows any milk. The test was done with milk, a medium consistency of milk and rice cereal, and then a thicker consistency of milk and rice cereal (this is because sometimes the thicker consistency is easier to swallow and the baby will not aspirate). Unfortunately he did aspirate some into his lungs with each of the 3. The plastic surgeon then came by, and said he wanted to continue to observe Tripp until the beginning to the middle of next week and that if he did not improve any with his airway that he wanted to talk with us about doing a jaw extraction. He wants to see how he does over the next few days because he would be in the hospital for a prolonged period of time after having this surgery and it is not something that he likes to jump into. As of now, if nothing else changes Tripp will most likely have to have a gtube put in sometime to be able to come home. We are able to continue to work with him with a bottle but only with a very small amount of milk, due to the aspiration, one time a day. Now he is getting the rest of his milk by a ng tube, but would be getting that by the gtube if that is put in. Last night Tripp weighed 10lbs 10 1/2 ounces.
Fentenyl was discharged completely and he was given tylenol by mouth with each feeding. He was also changed to a by mouth antiobiotic so that the central line could be taken out.
5/23
This is the first day that we tried the bottle, but he did not want it, however he had sucked on his paci for a minute or 2 so that was a good sign. Still tired today.
5/24
Ate 10ml from bottle at noon and 15ml from bottle at 6pm. Increasing like this was a good sign to us.
5/25
Ate 8 ml from bottle at noon, 20ml at 3pm, 5 ml at 6pm.
5/26
Ate 16ml from bottle at noon. After this Tripp was much more congested, and the doctors thought we should hold off on the bottle anymore as long as he was having a hard time breathing. A chest xray was done and came back showing some atelectasis and haziness. The doctors weren't sure if this was from him aspirating some or if this was an infection he had picked up. So for precautions he was started on vancomyocin and gentamicin and blood and urine cultures were obtained. A swallow study would also be done the next day. Also Tripp has been consistantly losing a small amount of weight over the past days, and his breastmilk is now being mixed with some enfamil concentrate so that he can get more calories in a feeding with the same amount of volume he needs.
5/27
A swallow study was done this morning and concluded that Tripp is aspirating some each time that he swallows any milk. The test was done with milk, a medium consistency of milk and rice cereal, and then a thicker consistency of milk and rice cereal (this is because sometimes the thicker consistency is easier to swallow and the baby will not aspirate). Unfortunately he did aspirate some into his lungs with each of the 3. The plastic surgeon then came by, and said he wanted to continue to observe Tripp until the beginning to the middle of next week and that if he did not improve any with his airway that he wanted to talk with us about doing a jaw extraction. He wants to see how he does over the next few days because he would be in the hospital for a prolonged period of time after having this surgery and it is not something that he likes to jump into. As of now, if nothing else changes Tripp will most likely have to have a gtube put in sometime to be able to come home. We are able to continue to work with him with a bottle but only with a very small amount of milk, due to the aspiration, one time a day. Now he is getting the rest of his milk by a ng tube, but would be getting that by the gtube if that is put in. Last night Tripp weighed 10lbs 10 1/2 ounces.
Thursday, May 26, 2011
Birth - May 21, 2011
5/11
Ricky Lee Collins III "Tripp" was born at 10:55 am via csection at Roanoke Memorial Hospital. He was 11 lbs 0.3 oz and 22 inches long. Shortly after being born, the staff decided that while I would go into the recovery room that Tripp would have to go down to the newborn nursery because he wasn't breathing as well as they would have liked to be monitored. They said that this would only be for a short amount of time but he would be ok. Little did we know that he would be soon be sent upstairs to the NICU and diagnosed with Pierre Robins Syndrome, which has caused him to have a cleft palate and a recessed chin--this is his main problem because it causes his tongue to block his airway so he is not able to breathe.
5/12-5/15
Tripp remained in the nicu at Roanoke Memorial. Here he was monitored. Each doctor that saw him here recommended that he should have a trach. to open up his airway so we would be able to bring him home, opening up his airway would be the only way we could bring him home. However, in these few days we had also done our own research and found that their were other ways to treat his condition that our hospital did not offer. After talking about these with Tripp's attending doctor he did some research for us on hospitals in the area that offered the 2 treatments. He had found out between sat. and sun. that wake forest and uva both offered the tongue lip adhesion however, wake forest also offered the jaw extraction it was unclear whether they did the jaw extraction at UVA as well but we decided then since we weren't sure which one Tripp would need that if Wake Forest could come and get him that day that we would go ahead and transfer him there and if they couldn't then monday morning we would see if UVA could do both as well and then chose between the 2. It turns out that Wake Forest could come and get him and that night he was flown to Brenners Children Hospital while we drove behind him.
5/16
At this point plastics had decided that they would be observing Tripp for a day or 2 to decide which if any operation that he would need. This in itself was frustration because we have already waited 5 days at the previous hospital and we know that unless he is on his stomach he is not able to breathe.
5/17
We talk with the plastics attending again tues. evening and he has decided that Tripp's condition is not severe enough for the jaw extraction, but he does need the tongue lip adhesion and this should open up his airway. This surgery is also less invasive so he likes to try this option first, but if it does not work then we would see about the jaw extraction. He scheduled his surgery for friday morning.
5/18
Tripp saw a speech therapist and drank 4ml out of a Haberman Bottle. This is a special bottle that doesn't require the baby to suck as hard, which he is not able to because of his cleft palate they say it would be like using a vaccum with a hole in it, you still have some suction but it isnt as strong. I also refer to this as his "cadillac" bottle, because if bottles were cars it would compare to the price of a cadillac.
5/19
Tripp drank 10 ml from his cadillac bottle :). However, after this he had a little tummy trouble, spit up some and also had a hard time breathing and keeping his oxygen rate up. After this happened doctors thought it would be best to hold off on the bottle further until after his surgery.
5/20
He became NPO at midnight, which makes a very fussy 11 lb newborn, but also necessary for his surgery the next morning. Tripp had his tongue lip adhesion and had no complications during the surgery except it was hard for them to get a secure IV. Because of this they just decided to place a central line in his groin. After his surgery he was very swollen from the surgery and all of the IV fluids that he had recieved. He was getting fentenyl for pain, and he was also sounded pretty congested.
5/21
Swelling has gone down some, but not completely. Feedings were started back at noon at 15 ml to see how he was going to tolerate food on his stomach and were increased by 5 ml each feeding (which is every 3 hours). Starting to wean off of the fentenyl, decreased this amount by half and added tylenol. Doctors also said that once he was interested in sucking on his pacifier that we could try bottle feeds again. The best news is he could finally lay on his back and breathe!!!
Ricky Lee Collins III "Tripp" was born at 10:55 am via csection at Roanoke Memorial Hospital. He was 11 lbs 0.3 oz and 22 inches long. Shortly after being born, the staff decided that while I would go into the recovery room that Tripp would have to go down to the newborn nursery because he wasn't breathing as well as they would have liked to be monitored. They said that this would only be for a short amount of time but he would be ok. Little did we know that he would be soon be sent upstairs to the NICU and diagnosed with Pierre Robins Syndrome, which has caused him to have a cleft palate and a recessed chin--this is his main problem because it causes his tongue to block his airway so he is not able to breathe.
5/12-5/15
Tripp remained in the nicu at Roanoke Memorial. Here he was monitored. Each doctor that saw him here recommended that he should have a trach. to open up his airway so we would be able to bring him home, opening up his airway would be the only way we could bring him home. However, in these few days we had also done our own research and found that their were other ways to treat his condition that our hospital did not offer. After talking about these with Tripp's attending doctor he did some research for us on hospitals in the area that offered the 2 treatments. He had found out between sat. and sun. that wake forest and uva both offered the tongue lip adhesion however, wake forest also offered the jaw extraction it was unclear whether they did the jaw extraction at UVA as well but we decided then since we weren't sure which one Tripp would need that if Wake Forest could come and get him that day that we would go ahead and transfer him there and if they couldn't then monday morning we would see if UVA could do both as well and then chose between the 2. It turns out that Wake Forest could come and get him and that night he was flown to Brenners Children Hospital while we drove behind him.
5/16
At this point plastics had decided that they would be observing Tripp for a day or 2 to decide which if any operation that he would need. This in itself was frustration because we have already waited 5 days at the previous hospital and we know that unless he is on his stomach he is not able to breathe.
5/17
We talk with the plastics attending again tues. evening and he has decided that Tripp's condition is not severe enough for the jaw extraction, but he does need the tongue lip adhesion and this should open up his airway. This surgery is also less invasive so he likes to try this option first, but if it does not work then we would see about the jaw extraction. He scheduled his surgery for friday morning.
5/18
Tripp saw a speech therapist and drank 4ml out of a Haberman Bottle. This is a special bottle that doesn't require the baby to suck as hard, which he is not able to because of his cleft palate they say it would be like using a vaccum with a hole in it, you still have some suction but it isnt as strong. I also refer to this as his "cadillac" bottle, because if bottles were cars it would compare to the price of a cadillac.
5/19
Tripp drank 10 ml from his cadillac bottle :). However, after this he had a little tummy trouble, spit up some and also had a hard time breathing and keeping his oxygen rate up. After this happened doctors thought it would be best to hold off on the bottle further until after his surgery.
5/20
He became NPO at midnight, which makes a very fussy 11 lb newborn, but also necessary for his surgery the next morning. Tripp had his tongue lip adhesion and had no complications during the surgery except it was hard for them to get a secure IV. Because of this they just decided to place a central line in his groin. After his surgery he was very swollen from the surgery and all of the IV fluids that he had recieved. He was getting fentenyl for pain, and he was also sounded pretty congested.
5/21
Swelling has gone down some, but not completely. Feedings were started back at noon at 15 ml to see how he was going to tolerate food on his stomach and were increased by 5 ml each feeding (which is every 3 hours). Starting to wean off of the fentenyl, decreased this amount by half and added tylenol. Doctors also said that once he was interested in sucking on his pacifier that we could try bottle feeds again. The best news is he could finally lay on his back and breathe!!!
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