Our Little Jacob

This is a blog detailing the daily struggles of having a child with Spastic Quadriplegic Cerebral Palsy. My son is 1 of 2 surviving triplets. My son and his identical twin brother Logan who passed away at 6.5 months old had Twin to Twin Transfusion before they were born. They were delivered at 28 weeks to try and save all 3 of their lives. I have a hard time connecting with other parents raising children with severe disabilities so, I thought I would branch away from my other blog to blog just about my son and his special needs in hope of reaching out and supporting other moms dealing with similar issues.

Wednesday, May 30, 2012

Wednesday, May 23, 2012

Gastric Emptying Study

Jack took Jacob to our local hospital for a schedule gastric emptying study today. He went without his E.S.S. Gran for his undiagnosed gastropheresis for 24 hours...(I begged the doctor to try the med about a year ago because I researched and he had all the signs and symptoms of gastropheresis and he has been on it ever since) and he also went without his reflux meds for 12 hours. My husband was at the hospital with him FOREVER. It was scheduled for 1:30 and they did not get home until 6:30....there was a lot of waiting going on. Anyways once he got back to nuclear medicine they gave him the food with the contrast and left him under a machine for an hour. They only gave him 50cc. Apparently after the 1st hour he had very little digestion of the food when he should have digested at least 50% in 1 hour. So he had to sit under the machine for a 2nd hour. My husband did not really tell me what the 2nd hour showed except that his digestion was better. I guess they also caught one of his coughing near vomiting episodes as well. He was told the results would be back in 2 days. So I will call GI of Friday and see if they have the reports and then what his suggestions are for suregery The question being does he need more than a nissen done?
I don't think I have posted on here since I had the baby. On May 8th we welcomed a 9lb 1oz baby girl into our family. Jacob is a BIG brother! With the new addition to our family, I lost child care...so I left my job as of May 6th. This is good and bad. We loose the better of the 2 private health insurances we have through our jobs. My husband put the kids on his insurance which puts quite a dent in out budget and sadly yet happily we qualify for some government assistance again. It is kinda a crappy situation. You either have to live dirt poor and have the government help support your family and pay your medical bills or you work your butt off and pay the outrageous costs of health care out of pocket while you are mad that other people get a free ride. LOL Well, I would not consider us getting a free ride by any means. We will continue to keep Jacob and the other children under my husband's insurance because I just feel more secure knowing it can't be taken away, plus he can see a larger variety of doctors. I applied for medicaid and all we got was a share of cost of $4600 which is way more than we make a month....think I must have done something wrong. The baby and I have temporary medicaid. Not my goal..really needed Jacob to have that secondary insurance. I applied for SSI again for him. It has been over a year since he received any benefits, so we have to go through the entire process again. I had the phone interview yesterday. I was on the phone with the lady who called for an hour and a half! I have to give proof that we still pay on our 2nd vehicle so they can exclude it and I have to show proof of the value of the burial plots we pay for Jacob, my husband, and myself that are next to my son Logan's grave. I think it is crazy that they even need that as an asset!!! Then it is up to the state to deem him disabled again. Depending on the SSI for Jacob to get his medicaid back! He will NEED the 2nd insurance for when he has his nissen surgery in the near future. I can't pay the out of pocket cost of the private insurance. IT IS CRAZY! I hope I am doing the right thing. In the mean time I also applied for our State kid's insurance. I have known people who have high cost private insurance that qualified, but not sure how it will go. I am willing to take ANYTHING to help pay for his cost at this point. I can't wait until this is all over.

I can't wait for them to figure the GI thing out. I want to know if he will need the surgery to help his stomach content empty fast and the nissen to stop the vomiting, or just the nissen etc. I hate that he has to go though major surgery in the near future, but I look forward to the positive. I'm sure he will be glad not to have to taste the vomit and nasty unflavored formula. I hope the surgery WORKS!

Monday, May 14, 2012

Phenol and Botox update

There is definitely a noticeable difference in Jacob's arm and legs. More from the phenol than the botox at this point. The muscles that got the phenol are loose. He  has not scratched his face in weeks. His legs are not crossing like they were before. When he stands in his gait trainer the muscles between his legs may be to loose. His legs now slide apart like he is doing a split, but he can pull them back together and take steps still. He is not crying like he used to and he is not arching which tells me he must be more comfortable. I do not know if it really has anything to do with his arms and legs injections, but him being less ridget and more comfortable I think has calmed his vomiting down. He has vomited but goes days in between his episodes. Overall I am very impressed. He still want to walk on his toes though and he still wants to keep his hands clinched.

Wednesday, May 2, 2012

Arnold Palmer Hospital

We finally got out of recovery and up to a room around 11am. His legs still feel pretty tight...hopefully it will improve. I was expecting to see more range. It is still an effort to bend his legs and pull them. I know the botox will take longer to work, but I was told the phenol would be right away. Only difference I see is in his arms. He is letting them hang and not keeping them against his body. His legs are still in a semi bent position even when laying instead of laying flat, but they say not to stretch him for 3 days. He has a barking cough from being intubated and I think that is causing him some discomfort. I got the results from the endoscopy. He says the esophagus and duodenum (1st part of the small intestine)  were normal. There was some patchy inflammation (gastritis) on the inside of the stomach, but no signs of damage or ulcers. They took biopsies. He finally woke up around 2pm today. He is sucking on his pacifier and watching TV now. The Ph probe will come out tomorrow morning, then they will do a gastric emptying study. After that is complete we can go home. So, we expect to be out of here tomorrow afternoon.

The bottom picture is some of the images from the endoscopy. I think seeing the inside part of the g-tube is pretty neat.


We are in the surgery waiting room waiting for Jacob to go back for his procedures today at Arnold Palmer Hospital. Hoping his legs are much looser after today and the GI studies will give us some answers.