Thursday, July 17 - Brayden is home!
Brayden is home! After fours days of the hospital we are happy to be home. Brayden is doing extremely well. It was determined that Brayden’s stomach does not empty at a normal pace. It empties much slower (another reason he is our turtle). We are changing the formula he receives via G-tube and doing very small quantities; during the night he will be getting a very slow feeding (from 9 p.m. to 5 a.m.). The seizures are under control. The seizures became a problem because he was unable to keep the food and medications in his stomach. We tried the new formula, new amounts and medications at the hospital. He seemed to tolerate it just fine. We have added two more medications to help his stomach and two more specialists to add to his ever growing list.
All in all, things went as smoothly as a hospital visit could go. Once again, Brayden is a real trooper and does not let any of this bother him.
When we pulled up to the house Carter sighed, “It is good to be home”. I could not agree with him more.
Thank you for all of the emails and phone calls. A big thank you to my mom for taking the boys for the week; the Pavolics for rushing down and taking the boys to their house the morning the ambulances came to the house; Emily Jarvis for watching the boys this afternoon; Heather and Brian for watching the boys this evening (especially the ice cream treat) and a big thank you for everyone’s prayers. We have wonderful friends, some we have actually met and others we have not met yet; friends that we can count on for support and prayers. It is a wonderful blessing and very humbling.
Wednesday, July 16 Update
Brayden spent the day strictly on IV fluids and no food by G-tube. The GI consult came to see him this morning. The doctor ordered him a milk study. Brayden was sent to Radiology. They give him the formula (about 5 oz through the G-tube) watch it for one hour. Then a couple of hours later they look at his stomach again to see how it emptys.
At this point we are not sure what the results were but the doctor said that Brayden could be started on very smalls amounts of a different formula to see how he handles it.
Brayden seemed to be feeling good today. He was moving around a bit, making happy noises and let us hold him several times for a while. He had one large seizure but that was all. If he is able to keep down the new formula, he could be sent home tomorrow late afternoon. We will probably be making changes to the formula and method/time that he receives formula once we are home. But we will know more about that tomorrow.
Until next time...
Tuesday, July 15 Update
Brayden is still at Children's Hospital. He had a better day; a couple of small seizures and vomits. He started today receiving some Pedialyte via G-tube but after vomiting he has been ordered, no food for a period of time. He will be started, sometime in the morning, with Pedialyte in small amounts. We spoke with a few neurologists today and they found that the seizures were being controlled; we agree his seizures are being managed just fine. We are still waiting for the GI doctor to see Brayden. The GI doctor will hopefully provide some answers to the vomiting problems. He is currently receiving fluids and medications via IV.
By the afternoon Brayden was starting to act more like himself and making a few of his happy noises. When I talked to Jeremy last, Brayden was sound asleep.
When we have time, I will go into more detail about this adventure. Thank to everyone for your emails, phone calls and prayers.
Apparently Brayden needed a little more attention…
Today we had to take Brayden to the hospital. The past couple of days he had a couple dozen seizures and been vomiting. This morning I went to check on him. He was having a seizure and had vomited blood and continued to do so the next couple of times he vomited. We called 911 and he was taken to Loudoun ER. He was stabilized there and later in the afternoon was transferred to Children’s in DC. We were unable to be transferred to Fairfax because there was no room. Thankfully Children’s was able to admit him.
A bit of history, Brayden has been vomiting on and off for the past 4 weeks, once or twice a day and then not at all for a few days. It has been about 10 weeks since he received his G-tube (feeding tube) so we do not know if it might be related to the formula or if it could be something else. We have been in the process of trying to figure out the reason. This weekend we were not able to get the seizures and vomiting under control so we ended up at the hospital.
He is currently sleeping with a heavy dose of Ativan and another seizure medication. He will be receiving little bits of Pedialyte via G-tube through the night to see how he handles it. We are not sure what tomorrow may bring. For now, he is resting. It looks like the plan may be to get him stabilized and keeping some food down. He could be discharged tomorrow. Then on Thursday we are scheduled to see a GI specialist (at another hospital) to discuss the vomiting.
Please pray for Brayden to handle all of this; that all of the vomiting and seizures have not caused any damage. Pray that the doctors will be able to find a cause and solution.
My parents are watching the older two boys so I am sure that are being spoiled!
Thank you for your prayers.
Sorry for the bad grammar and probably spelling, I am tired.