It was suggested to me that I should create a time line of the last 6 months that we have had with Molly and her numerous hospital trips. There are 2 reasons to document the events. First of all, I'm afraid I will forget and secondly I hope that this will soon be behind us and it can just be a memory. Feel free to read but I won't be offended if you don't. It's mostly for Mike and I and our family. Molly has been remarkable through the whole experience and I want to jot down a few things about our trip.
November 2008 - just before Thanksgiving we met with Dr. R after having a ultrasound and VCUG done late October 2008. It was recommended then, with the results now being bilateral reflux of her kidney's, to have corrective surgery done. It is called bilateral reimplantation of the ureters. It will be done laproscopy with the aid of a robot.
January 30, 2009 - we went in for surgery this morning at St. Francis. The surgery went well and we were in the hospital until Sunday, February 1st.
Thursday, February 5, 2009 - Molly had been complaining for 2 days of abdominal pain and she hadn't had a bowel movement since Sunday. I took her to see Dr. C, our pediatrician who had me increase her dose of Miralax for constipation.
Friday, February 6, 2009 - after a very rough night I called Dr. R's office and they sent us for a x-ray to see if there was a large amount of stool in her bowels. They could see some on x-ray so they had us do a dose of Lactilose. This stayed down for about 10 minutes and then Molly threw it up. She had been throwing up since Friday morning. We also did Pedialax which are suppositories.
Saturday, February 7, 2009 - another rough night that resulted with Molly not having a wet diaper overnight. I called Dr. R and he felt that she needed to be immediately admitted to the hospital. That day they did 2 or 3 enemas that did not result in any stool being passed. Molly's abdomen is distended so much that she looks like she is pregnant.
Sunday, February 8, 2009 - after some early morning labs are performed it is discovered that Molly's renal function is very low. This would indicate complete renal failure and lack of kidney function. Dr. C, Dr R's partner, is on hand and a renal ultrasound is immediately done and a catheter is inserted. When they don't see anything wrong with the kidney's we go immediately for a VCUG (voiding cystourethagram) in radiology. This doesn't show a leak in the bladder. Dr. C's then says Molly needs a cystogram right away. This will determine where a possible leak may be happening. She is now thinking the ureters may be leaking. Dr. C's wheels Molly herself to the pre-op area. She is whisked in to surgery. Dr. C comes out later and tells us she is needing a interventional radiologist to assit with a ureter set of stents being put in. This will take all of the pressure off of the kidney's and allow the leaking ureters to heal.
Monday, February 9, 2009 - Molly's renal function panels are greatly improving but she is still in quite a bit of discomfort. Dr. R decides that we need to get the pressure off of her abdomen and allow the urine to drain another way. Molly was completely filling up with urine over the week after surgery. We go back to surgery and they put in an abdomen drain. It is performed by Dr. R. There is just something weird about seeing urine come out any other way then normal. It is amazing how comfortable Mike and I became with all the tubes.
Tuesday, February 10 - Friday, February 13, 2009 - Molly's renal panel function continues to improve but she is irritable and in some discomfort. She is not really interested in eating or leaving her room. We try some anti-depressant drugs, which also help improve bladder spasms, and they make her even more emotional. The urine in her catheter and in her drain are still exiting at a good pace. The end result is we are hoping for the abdominal drain to eventually slow down.
Saturday, February 14, 2009 - We think this morning that we will be bringing Molly home some time that afternoon. It is discovered by Dr. R in the morning that the drain has migrated back inside Molly's abdomen. This is very discouraging and probably the lowest day we had. Dr. R has to take her back to surgery to find the drain and replace it. It also became a bit uncomfortable between Dr. R and the nursing staff. They are bending over backwards for us.
Sunday, February 15, 2009 - We bring Molly home from the hospital with the catheter and the abdominal drain. Mike and I are able to empty them and record the numbers ourselves.
Tuesday, February 17, 2009 - We go to see Dr. R and they take a culture of the abdominal drain fluid. They both need to remain in for a few more days.
Friday, February 20, 2009 - We do another fluid culture for Dr. R and he wants the catheter and drain to stay in over the weekend.
Monday, February 23, 2009 - The abdominal drain fluid has become almost non-existent and has slowed down dramatically. We go to the hospital early in the morning and give another sample off fluid. We see Dr. R in the lobby and he takes us to his office where he removed the catheter.
Tuesday, February 24, 2009 - We go to Dr. R's office and he removes the abdominal drain. It is amazing how much happier Molly is after both tubes have been removed.
Wednesday - February 25, 2009 - The nurse from Dr. R's office calls and says that there is some bacteria in the fluid sample from the drain and a shot of gentamicin is recommended. We go to Dr. R's office to receive the shot.
Tuesday, March 3, 2009 - routine visit to Dr. R's office where we give a urine sample and he checks out Molly's incisions.
Thursday, April 2, 2009 - Molly goes to The Center for Health and has outpatient surgery to remove the stents in her ureters. She does great!
Friday, April 24, 2009 - I had noticed for a few days an increased demand in Molly's drinking and a lot of frequent urinating. I call our pediatrician and they have us come in for a urine sample. They call within 2 hours and tell me that they are concerned because Molly's urine is concentrating - meaning that it is more water than urine. It is clear and looks like water. They ask us to catch a first void of the morning and come in for some blood work.
Saturday, April 25, 2009 - We go to the lab and do the urine sample and blood work. Around 5 o'clock that evening the pediatrician calls and says that the urine is not concentrated and we need to be admitted to the hospital for some tests. It is appearing that Molly has diabetes insipidous. It is a water form of diabetes and not related to sugar. This kind of diabetes can be pituitary related or kidney related.
Sunday, April 26, 2009 - we meet with Dr. W an endocrinologist. She has Molly take a pill which is a form of a hormone in your brain. If it is diabetes insipidous your brain will tell your kidney's to get rid of more urine and your urine will start concentrating normally. We also meet with Dr. H, a nephrologist. He wants us to understand how important it is to keep Molly's kidney's healthy.
Monday, April 27, 2009 - it is determined that this is not a pituitary problem (whew!) and we go for a test where they run dye through the kidney's and observe their function. I can't remember the exact name of the test but it called something like a Mag 5 scan. An i.v. has to be started for the test. Traumatic. I have been in contact with Dr. R and let him know what was going on. He feels that it may be related to Molly's other surgery and is waiting to be called in.
Tuesday, April 28, 2009 - Molly goes for a renal ultrasound and Dr. R and Dr. H determine that there is a blockage with her ureters. Molly is taken to surgery and a new set of uretal stents are put in. Her kidney function had started to deteriorate again.
Wednesday, April 29. 2009 - We are released from the hospital and Molly's kidney function is back on track. She did great with the surgery and is strong. Dr. R has determined that scar tissue may be causing the blockage.
Tuesday, May 5, 2009 - Molly has to have a blood drawn done for Dr. H to check her renal panel function.
Wednesday, May 13, 2009 - We see Dr. H in his office and Molly's renal function is really good and she is doing well.
Monday, May 18, 2009 - Molly has an ultrasound at the hospital and we see Dr. R in the office. Everything looks good and we talk about some options for Molly. Dr. R would like to try an outpatient procedure where he will thread a balloon up to Molly's ureters and expand it with the hopes of breaking up some scar tissue that has formed causing this blockage. Mike and I agree to try it and he gives us a 50% success rate.
Thursday, May 21, 2009 - I take Molly to meet with a nutritionist at the hospital. During the hospitalization in February Molly lost 4 pounds and we are having trouble putting it back on. It is important to "fatten" her up in hopes that it will help the healing process. The nutritionist gives me some great ideas.
Thursday, June 18, 2009 - Molly goes in for the outpatient balloon procedure. After about an hour and a half Dr. R comes out, with Dr. C, and tells us that although Molly is stable and doing great he could not get the balloon threaded up to her ureters like he hope to. He feels that the blockage is too great and that he needs to reimplant her ureters again immediately by opening up her abdomen. I'm sure the look on my face was priceless. After my initial shock set in we agreed to go forward. Molly was in surgery 3 1/2 hours and did wonderful.
Friday, June 19, 2009 - Molly rests in the hospital and is doing well for the situation. She is catheterized and not happy about it.
Saturday, June 20, 2009 - Molly is released from the hospital and we are sent home with the catheter.
Monday, June 22, 2009 - We take Molly to Dr. R's office and he removes the catheter. Again, it is truly amazing how much better things get once it is removed. Molly is in some discomfort for the next week but gets better every day.
As of today things are going really good. We go next Thursday, August 6th, to have the last set of stents removed. This is done outpatient. We hope and pray that after next week the whole ordeal will be behind us. We will go for weekly ultrasounds for a while to watch everything but we really hope that the second surgery did the trick. There are some days when I can't believe all this happened!