We were discharged from the NICU followup clinic a couple of weeks ago. Gabe was getting too big (pediatric) and he also was backsliding on his oxygen requriement. They set us up with a Pulmonologist specialist to follow him and get him off of his oxygen dependency. It was sad to leave the doctors and nurses that we have trusted with Gabe's care since he was less that 2 pounds. Now Gabe is 9 times larger weighing in over 18 Pounds. He still is tethered to the oxygen tank and has not been able to eat enough calories on his own to get the feeding tube yanked out for good. However, he has been pulling out the feeding tube on his own more and more. We are ready to have all the tubes off of his face. We have scheduled the feeding tube surgery for May 13th. They will be removing it from his nose and installing it directly thru his stomach.
Today we had a an appointment with the CT machine at 8 AM (pictured below). The Pulmonologist wanted to get a better picture of his left lung to aid in treating his poor respiratory status. Unfortunately for us, their was no coordination done within the hospital to schedule the required anesthesiologist and the scan had to be canceled. Infants are required to be sedated so they don't wiggle around and ruin the picture. Gabe promised not to wiggle, but the staff didn't trust him. They said they didn't want to expose him too multiple scans and the radiation if the picture didn't turn out. We are planning on having the scan rescheduled to the date of his Gtube proceedure, since he will need to be sedated for that too.
It has been so long since we've posted anything, and am not sure if anyone still checks in. If so, we recently got some answers about Gabe's eating. He had a swallow evaluation done where he drinks barium and they take xrays to see what he is doing with the food and if he swallows properly. We found out that he has a severly delayed swallow which leaves his trachea wide open to accidently breathe in food. He could control the formula better when it was a necture consistency and a cold temperature woke up his mouth so he would eat a tad better. The reason he has a delayed swallow is because the nerves that trigger the swallow were either damaged from the respirator or burned from his acid reflux. These nerves are not things that will heal. As Gabe gets older, he'll learn to adapt to this condition. What we learned may not keep him from a G-tube (feeding tube going through the abdomen into stomach), but at least we have some understanding about the "whys." He was recommended for a G-tube recently. We still need to have a consult with our Gastroenterologist about this. They are recommending a surgery for the reflux where they wrap part of the stomach around the place the esophagus meets the stomach to reduce/elimnate the reflux. Our concern with the surgery is we have heard from many sources (doctors included) that there frequently are very serious side effects and complications as a result from the surgery. I have been having trouble sleeping thinking about this and our options, if we really have any other options. We should know a lot more after our consult the beginning of March. Gabe also has another surgery that will be performed after he gets off oxygen. We are assuming another 2 months on the O2. He is gradually getting weaned off of medications, which is so exciting to see some progress. He is only on 2 precriptions now! Gabe is definitely growing and developing in other areas. This past week he has discovered his voice and new noises he can make. At first it was cute, but that's wearing off ;) We have been very blessed so far during the cold and flu season that he hasn't been sick. He has enough things on his plate, that he really doesn't need that to deal with also. Thank you for checking faithfully. We are blessed to have people like you praying for our little man.
Gabe has been doing well with the feeding tube, and is gaining around an ounce a day! Whatever he doesn't take by mouth we put down the tube, and then he has a pump going all night.
I have finally figured out his eat/sleep schedule and am enjoying my time during the day with him. He is so much fun and usually a very happy boy.
We have an appt. with a feeding team next Wed. to determine why he isn't eating well. I talked with one of the team members on the phone, and she thought from what I was telling her, it is reflux. She said that they learn to avoid the pain, by not eating much. It was an interesting conversation.
Gabe loves watching Roxy (0ur dog) play and he will sit/stand and just smile and laugh at her. Roxy has turned out to be a great baby entertainer. Gabe is so beautiful and I just feel so blessed this holiday season.
Last night we had the Home Health Nurse attempt to put in a feeding tube. She was unsuccessful :( and had us go to Children’s Mercy ER (downtown KCMO) to get it put in right. It was a long night, but we got the tube put in and are now able to get Gabe a full feed even if he won’t suck it down himself. Hopefully it will only be short term and get Gabe over the hump of not gaining weight and eating better.
Below are some pictures prior to the feeding tube going in.
Yesterday we had a doctor's visit because Gabe hasn't been eating very well during the last couple of weeks. Gabe doesn't take his bottle from about 4 AM thru Noon. We have tried everything possible but his strong will and gag reflex prevail. The doctor's exam didn't shed any light on why he has the lack of appetite. He also had some blood tests done at Children's Mercy which also didn't show anything unusual.
Gabe has to gain weight and this recent weight loss could send him back to the Hospital. He doesn't seem unhappy or upset that he hasn't eaten anything for half the day. It is really frustrating for us parents knowing that he is regressing and there isn't anyway that we can stop it. We have another visit with Home Health Nurse this Thursday and may have the option to use a feeding tube. This is a step backward but could keep him out of the hospital. We should be getting some consultation from a feeding expert soon.
Please pray that regains his appetite and takes full feeds.