We just got home from the hospital yesterday. Since I last wrote, we made a lot of progress.
For the pneumatosis, Dear Son completed the antibiotics they prescribed. They had him on a seven day course which was done as a precaution. One of the causes of the pneumatosis intestinalis can be infection and although he didn't show any signs of that, they prescribed a seven day course, just in case.
In addition, they took him off of the Miralax and changed his Phenobarbital from a liquid form to a pill form. One other cause of pneumatosis can be medications. In this case, they know that too much Sorbitol can sometimes cause this condition and while they don't know what caused it, they are doing everything they can. They reviewed all of his medications and determined that Miralax, Valproic Acid, Phenobarbital and Lamictal had Sorbitol in them. They removed the Miralax, left him on the Valproic Acid since there isn't a pill form, left him on the Lamictal since it already was in a pill form and changed the Phenobarbital to a pill form. My main concern was the Miralax. They decided not to replace the Miralax with anything and I worry he might get backed up since I know that he needs some laxative along with his formula. They told me that when they analyzed his medications, there were 14 grams total of Sorbitol in them and 10 of those grams were in the Phenobarbital. So the good news is that most of the Sorbitol was removed by simply replacing the liquid Phenobarbital with the pills.
In addition to these two things, they had taken Dear Son off his formula tube feedings and replaced that with IV fluids and nutrition via his central line. This gave his bowels rest for a week. They do not believe that the pneumatosis causes him pain however nor causes him to cry. Moving forward, they did not do another CT scan of the abdomen and the only other recommendation from GI Surgery was for Dear Son to have a colonoscopy in a few weeks after this pneumatosis subsides.
In analyzing his CT scan, they noticed that his bladder was huge. They determined that one possibility was the Scopolamine patch causing urinary retention. They decided to use half the dose; since it is not recommended that the patch be cut in half, pharmacy recommended that half the patch be placed over some Duoderm (it's a clear plastic piece of medical type tape), which is what we did. Since he got only half the dose, his frequency of urination increased. Initially, he seemed to have severe pain ten to twenty minutes prior to urination, where you could actually see him crying out and trying to bear down to pee. When this happened, they consulted with Urology. They did a renal ultrasound to look at his bladder and kidneys. In a small percentage of cases, kids who are on Topamax can develop kidney stones. The renal ultrasound was normal and no kidney stones were found. The painful urination subsided after two days or so once he started urinating a lot. He went from two urinations a day to eight or nine with the half patch (although is total liquids increased from 1500 ccs to 2350 ccs). On Tuesday/Wednesday, he returned back to his normal volume of 1500 ccs and his urinations decreased to five and then three. His crying decreased drastically as soon as the half patch took effect.
On the down side, as soon as the patch size was decreased, his secretions increased so I have to watch him carefully to make sure he can clear his airways. As a result, we are going very slowly on his feeds and feeding him 24/7 at a rate of 60 ccs an hour.
Regarding the central line, it started to get red and hard and show signs of infection after just three days. They removed it and tested it for bacteria and it came back negative.
As for seizures, Dear Son had become very agitated and was shaking a lot. It had gotten worse since December which was when another Attending Neuro Doc had made some medicine changes. Dear Son was shaking so much at times that he looked like he had Parkinson's. I spoke with Ped Neuro Doc about increasing the Klonopin dose and he increased it nearly back to previous levels and Dear Son improved.
During our stay, they also had turned off his VNS for a day, to see if that might be a source of his pain however it wasn't. That was prior to the CT scan of his abdomen. When they turned it back on, they lowered the settings a bit. The only down side is that Dear Son is having a few more seizures. He had one this morning before meds and seems to have one every few days prior to his morning meds. At this point and time, Ped Neuro Doc wants to leave our meds and VNS as is. I am able to control these seizures with the VNS however.
Dear Son improved quite a bit with the switch to the half patch. It appears the crying was due to the urinary retention. While he still cries when he needs to be changed, rolled over or for a seizure, there was little other crying other than a few episodes here or there. I felt very good that he was no longer crying and screaming. Interestingly enough, one of the night nurses came by on Tuesday morning to see how Dear Son was doing. She was glad the crying was resolved and said that she heard a kid crying and screaming at the top of his lungs last week and asked the other nurses who was screaming. They said it was Dear Son. She heard him all the way down the hall at the nurse's station. She has known Dear Son some ten years there and told them that it wasn't like Dear Son to cry like that since he NEVER cries.
So I felt pretty good when Dear Son had stopped crying at night. You could see the pain had lifted from his face. Prior to that, he always seemed in pain, even when sleeping. I felt really good and thankful that this issue had been resolved. I was on cloud nine. It was really something to think that only a week or so ago, they had told me he may never stop crying since they thought it was disease progression. I felt even better when one of the nurses stopped by Wednesday night to see how Dear Son was doing and he started laughing, smiling and flirting with her. Then I knew that Dear Son was back! It was such a pleasure to see that smiling face again!
At that point, I knew we needed to get home and see how Dear Son would do in his normal environment. Dad came down to pick us up for the discharge. When he put Dear Son in his wheelchair and leaned him forward, Dear Son screamed out in pain. I was a bit concerned but still optimistic. We left the hospital and he cried in Dad's car all the way home. Sometimes, he cries in his car and I am not sure why. I don't know if it's the angle of the seat or whatever but it happened prior to his issues. When we got home, he sat him in the recliner and it seemed like he was in pain. Dad kept saying how Dear Son looked to be in pain and I said that we needed to give Dear Son some time since he hasn't sat up in two weeks. Well, Dear Son started crying and Dad left. Like really crying again. I was demoralized. I could not believe it was happening. I was almost suicidal to think that after such great results with hardly any crying the last few nights at the hospital that this was happening again. I tried to remain calm and got his bed ready then moved him to his bed with the hoyer lift. As I removed his pants, I noticed that he had a dirty diaper, hence the source of the crying! Yay! The night went o.k. and then from 1 a.m. on he cried out on and off and I got up to see what was going on. I stopped his continuous feeds at 3 a.m. since I heard him gurgling on his secretions. He continued to cry out once an hour or so all night until this morning. He had a seizure this morning prior to meds.
Overall, I do think we resolved his issues with the crying. I think it will take a little time for Dear Son to recover from everything and I expect that he still might cry however it is nothing like it was. I am so happy that they were able to resolve his pain issues. I knew that he wasn't crying for nothing and I knew he was in pain. Moving forward, I suspect our next issues will be motility, or lack thereof since he's not on the Miralax and controlling his secretions.
In the end, I am really thankful that they got this resolved. Dear Son's physician, Ped Neuro Doc really did an outstanding job. He worked tirelessly and spent a ton of time on this issue. I can't thank him enough. He reviews all of the test results himself, checked out the CT scan and noticed the bladder issue, came by to see if the MRI was done prior to going home. He just gives his best all the time for his patients. He has been Dear Son's physician for 18 years now and I just can't imagine what would happen if we had someone else. We have received such an outstanding level of service over the last eighteen years that I honestly have no idea how he does this. He not only takes good care of Dear Son but all his patients like this. I am going to write him a thank you note later today or tomorrow, when I get a spare minute.
And finally, I apologize for the delay in updating you. While Dear Son was in the hospital last week, I received a notice from my apartment complex that there had been a recall on the sprinklers so they needed us to remove all of the furniture in our apartments located under the sprinklers so they could replace them. Well, I had just got home from the hospital and tried to move everything really quick. In doing so, I tried to push the solid wood base of my dining room table with my right foot and injured it. I either broke or strained the first metatarsal in my foot and can't walk. I was in severe pain trying to work on Wednesday and driving was horrible. I had an x-ray done on Wednesday and found out that I sprained my foot. In the meantime, I am in a lot of pain so I wasn't able to sit down to update you prior to now. I have been icing it and taking some pain relievers but it still hurts to try to stand, walk, sit or do much of anything.
Thank you for all of your comments, concern and prayers for Dear Son over these past few weeks. It is really appreciated.