I have so much to say and such little time these days! I do apologize for this way overdue post. So many of you have asked about our trip to Cincinnati and our recent hospitalizations. Thank you for your kind words, prayers and positive thoughts. It’s been a tough start to 2012, but we are paddling along, taking things in stride as they come.
Just to put things in perspective: Our sweet baby girl is now six months old. Stanton has been in the hospital four times since becoming a big brother! We spend the weeks in between hospital stays recovering, rebounding, playing catch up and trying to restart some resemblance to a normal routine, only to find ourselves intertwined in chaos all over again.
Stanton was hospitalized the first of February with a severe asthma attack which lead to an upper respiratory infection. Two weeks later we traveled to Cincinnati for our week of testing at the Children’s Hospital. Stanton saw various members of their top rated aero-digestive team including pulmonology, ENT, gastroenterology and the feeding team. Our first appointment was a video swallow study. This involved Stanton eating a variety of things mixed with barium while being videoed and x-rayed. This is super complicated for a child who doesn’t eat much and is super picky about what he will eat. If it’s the wrong color or texture – it’s not going in his mouth. Mixing foods with barium changes both the color and the texture…so it was an interesting experience to say the least. I was able to get him to eat some pudding and some peanut butter. It was enough to show his swallow and the test verified all was normal – good news! We spent the rest of the afternoon registering for all the various procedures to come.
Stanton had a sedated CT scan of his respiratory system the following morning. That same afternoon we met with the pulmonologist and reviewed the CT scan and his history of serious respiratory illness. The pulmonologist said his symptoms and hospital stays didn’t match the CT scan. The scan didn’t show much damage to the lungs or bronchs, only a bit of scar tissue which did prove his continued chronic episodes….but didn’t explain them.
The next morning we checked into the hospital for the aero-digestive team scope. The ENT, pulmonologist and gastroenterologist all preformed the scope together, each looking at their area of the body. Anatomically, everything looks normal and is functioning as it should. Biopsies were taken and we are still waiting for some of those results. The ENT said Stanton’s throat is functioning well. He did remove Stanton’s ear tubes as they have been in for two and half years. The pulmonologist discovered that Stanton’s cilia in his upper airway were stiff and unresponsive during the scope. He took a biopsy and sent them to the hospital’s in house lab where they remained unresponsive. So Stanton’s cilia have been sent to a lab overseas for further testing. We still don’t have those results.
The gastroenterologist also took some biopsies of his esophagus and stomach. He then inserted an impedance probe which Stanton kept for the next 20 hours. The impedance probe is a small tube that goes up the nose and is threaded down into the esophagus. It’s attached to a small computer box that Stanton had to “wear” on his shoulder (like a purse). The probe records changes in flow within the esophagus, the pH of the esophagus and other common reflux symptoms. It also shows how far the reflux goes. While Stanton had the probe I had to push a button on the computer box if he coughed, burped, gagged or threw up. I also had to push a button when he was eating/drinking. Stanton’s impedance probe showed that he refluxed 68 times and 54 of those times reached his throat. This just showed us that he still has very active, severe reflux. Even though he hasn’t vomited since November, he is still dealing with this disease. So, the gastroenterologist put him back on prevacid.
After we checked out of the hospital we met with the feeding team. They pointed out that the list of foods Stanton will try is three times as long as it was this time last year. We all understand that he is being sustained by his medical formula, Elecare and food is still experimental for him. However, his weight was good so they encouraged us to try some tough love as Stanton will only drink his formula out of a baby bottle. Part one of the tough love is the suggestion of putting an NG feeding tube through his nose the next time is hospitalized and on a feeding strike. He hated the impedance probe down his nose due to the tape on his face….so the feeding team thought that might be a wake-up call for him. Stanton will drink other things from cups and straws, but not his formula, so the team suggested we begin offering his formula in a cup just to see what would happen. They also encouraged us to find a local feeding team and GI. They suggested we look at the various options in New Orleans. After comparing the pediatric programs in New Orleans, we’ve decided to try the New Orleans Children’s Hospital. They have a feeding team with a strong reputation. My pediatrician is in the process of setting up a referral to one of their gastroenterologists.
Since we’ve been home Stanton has been in the hospital again…but it was a short stay so the doctors here did not do the NG feeding tube. We have started fading out bottles and of course Stanton refuses to drink his Elecare now! Initially I was offering the cup of formula and as soon as it was refused, I’d give it to him in a bottle. I faded this out as time went on with no progress. I realized that as long as the bottle was an option, that would be his only option. His bottles are old and all starting to leak and drip. This has been a source of frustration for Stanton. So, I told him that if a bottle was drippy, we’d just throw it away because it was old and not good anymore. We have thrown away all but about three bottles, which I’ve hid so that his only option is now a sippy cup or cup with a straw. Fast-forward to today…..this has totally backfired on us! He is completely refusing the formula in a cup. Stanton got really sick this past weekend and ended up back in the hospital so I gave in and dug out a bottle. He promptly stated that bottles are for babies and he is not a baby. Ugh….so now he won’t even drink it in a bottle anymore either! Elecare has 30 calories per ounce and Stanton was drinking about 32-36 ounces per day. This means that his intake is down an average of 900 calories per day now and he isn’t really replacing them with anything substantial. He has re-lost all the weight he just regained! I’m feeling frustrated and worried. I find myself spending my whole day trying to get him to eat and drink. It’s completely exhausting and beginning to feel like a no win situation. I appreciate all of your thoughts and support as we continue down this unanswered path.
