Alex’s Story This is a chronological diary of our battle with Infantile Spasms. It was kept for informational as well as for therapeutic reasons.
On December 3, 1997 little Alex came to us with usual fanfare and no complications. What surprised us about Alex on the day he was born was that he was holding his head up and his eyes were open immediately. He was beautiful and we loved him instantly. The first 3 ½ months of growing up went much like his brother’s until April 15th, 1998, a day that would forever change our family.
4/15/98
Alex banged his head and cried. Emma picked him up and noticed a series of “crunches”. She immediately called the pediatrician who said that it sounded like seizures. Emma then brought him in for a sick visit, and an EEG was scheduled for the 17th.
4/17/98 - Friday 1:45pm
We met Dr. Kerman (neurologist) and had an EEG done. After the EEG, we waited and our worst fears were soon realized. The EEG was abnormal and showed hypstharrhythmia. Infantile Spasms was the initial diagnosis. Our world crumbled. Dr. Kerman suggested immediate action and we scheduled to have Alex admitted into Hasbro’s Children Hospital for ACTH treatment.
4/19/98
Scared of the unknown we were admitted to the hospital. The testing began immediately and every possible test (many we had never heard of) were performed on Alex to determine what was causing the spasms. All the tests except for the EEG came back normal. While this was encouraging, it did not give us hope for a cure, because we lacked a cause. By this time, we had begun our research and most of it pointed to grim outcomes, especially the information on the web. We were reeling, at a complete loss and we really didn’t know why. We took solace in the fact that because he had no biological reason for them, medication would end this nightmare for us.
4/20/98
We began ACTH and learned how to give our 4 month old boy an injection in his thigh every day, as if the spasms are not enough trauma. It took our all to give these injections. One of us would hug him and hold him while the other stuck his leg. He always cried and we wished we could tell him that it was much more painful for us. We had a visiting nurse come to the house everyday right through to his last shot, at least we knew we were not doing wrong.
4/21/98 - 5/7/98
Shots, testing of urine, stool, echocardiograms, blood pressure monitored daily. Then the ACTH steroid treatment began to have an additional negative affect on Alex besides the extreme bloating. Oh, God he got so big we would not take pictures of him. There will be a large gap in his photo album because of this steroid. The hypertension and enlarged heart forced us to stop the ACTH. The weaning process started and by 6/12/98 we gave him the last shot.
5/8/98
We had an EEG and it was normal! Our prayers were answered!
5/17/98
We saw our last spasm! Dr. Kerman said it is very typical that the spasms return in some other form. We prayed and remained hopeful.
6/12/98
The last ACTH shot. The weaning was faster than Dr. Kerman would have liked but the side affects were too dangerous to continue.
7/19/98
Emma started seeing something! Our hearts sank. We did not escape the nightmare. She scheduled an EEG immediately. We prayed harder…
7/22/98
The EEG was not normal. While it did not look like the first EEG, it did show “sharp activity” on his left side. On to Boston and more drugs…
7/31/98
Met with Dr. Elizabeth Thiele of Boston Children’s Hospital. She had been consulting with Dr. Kerman and we discussed Vigabatrin. This drug is billed as the” wonder drug,” but is not yet approved by the FDA. We had to go to Canada where it is available. Dr. Thiele made the necessary arrangements.
8/10/98
Emma and Linda left for Montreal because I was traveling for work.
8/11/98
Emma took Alex to Hospital Sainte-Justine to meet with Dr. Carmant. He concurred with the diagnosis and prescribed Vigabatrin. We are hopeful that this is it.
8/27/98 - 9/14/98
During this time, Vigabatrin had no effect. We were told some kids have a delayed affect and to give it one more month. His dosage was 2 tablets in the a.m. and p.m. Dr. Thiele prepared us for a PET scan in Boston. Oddly, Dr. Carmant had asked us if he had this test yet when Emma saw him.
9/18/98
An EEG showed no change. We grew frustrated as a solution seemed unattainable.
9/24/98
Depakote was added to the medication experiment who is my son. The next day his echocardiogram came back normal. At least now his heart is O.K.
10/5/98 - 10/9/98
While I was on business in Tokyo, the PET slot at Boston opens and Emma decides to take Alex up. My dad drove them and Alex was admitted for testing. The “beam” test on the 6th, the spec scan and Depakote levels on the 7th, and the PET scan on the 9th. He was sedated for the PET with a mask over his face. To see our little boy all restrained, sedated, and being slid into this huge machine hurt us deeply. The nurse said it could be worse because they had to perform surgery before this test was developed.
10/20/98
Results from the PET were normal. Although Dr. Riviello was sure it would show a left side focus it did not. Therefore surgery was ruled out as an option. We were left with the following options:
- invasive monitoring
- more medicines (gabatril, pulsing ACTH, etc.)
- Ketogenic diet
- Corpus Callosum (disconnecting the 2 hemispheres of the brain)
While there were still options none of them promised a cure, and were more experimenting than treatment.
11/25/98
After the Boston trip, we increased his Depakote levels, weaned him off Vigabatrin, and started the Klonopin weaning. We started Topamax as well. Then Alex had a generalized seizure, his eyes rolled, he became limp and unresponsive for 5 minutes. This seizure frightened Emma and raised our concern that although he was developing, these spasms were damaging his brain. Dr. Kerman thought it was due to the Klonopin wean and that it was working. We still felt very strongly that it was not so we continued the weaning process. We would soon learn that the drug was very addictive and would require a long, slow weaning process. It would not be until Jan 21, 1999 that we finally weaned him off Klonopin. By mid December, Alex was up to ½ a pill of Topamax twice a day.
12/14/98
We scheduled an appointment with Dr. Harry Chugani. We were told he is the PET expert in the country and that he should read Alex’s PET. After some discussion, he decided it would be better for Alex to come in so he could do his PET. We learned that the PET is best done in children at least 12 months old, so it could be that the Boston PET was done too early.
12/15/98 Tuesday - Children’s Hospital of Detroit
It was approximately 2:45 pm and we had just begun the initial preparation for the PET scan. Before the PET scan would be performed Alex needed to have an EEG performed. To perform the EEG, Alex was completely restrained to a table. His little head had to be completely immobilized and he had to be awake. After receiving an injection of radioactive isotope, he had to endure 30-35 minutes of monitoring. He cried for approximately 5 minutes with Emma close by his side. After the 5 minutes, his crying slowed to just a moan as he seemed to accept his current position. Then he suddenly went quiet, I believed that he may have fallen asleep, but I was wrong, he just lay quiet looking at his mother. Suddenly and seemingly without reason he smiled at her, not a quick lifting of his lips, but a long genuine smile. A smile that told us “ Mommy I am going to be O.K.”! It was as if God was communicating with us through Alex. That smile which I will never forget, was to tell us “ I know you love me and would never hurt me”, this at a time when Emma and I were not sure if he could understand the depth of our love. It was a smile that while saying “I am O.K.”, reassured us at a time when we were not O.K., our hearts were heavy with fear, uncertainty, and doubts. How brave is this little boy? I believe that in his one year of life he is already braver than I will ever be.
Later that day, after all the testing was completed, we met with Dr. Chugani, to see if Alex would be a candidate for surgical removal of the affected area. It was truly a bittersweet moment for Emma and me because we had prayed for the option of brain surgery which while very scary was not as scary as having no option at all. At this point, the drug therapy had reduced, but not stopped the spasms and therefore were a continued threat to his development. Surgery could take away the spasms and allow his development to return to normal. We got lucky, after conferring with the doctor, we were told Alex was a candidate due to his spasms having a focal point on one side of his brain. It also looked like his motor cortex was not involved.
We left Detroit knowing we had another option, and we began the process of understanding our next very big ordeal…
1/1/99 - 2/28/99 Preparation
We prepared all the necessary travel arrangements, insurance approvals, and ourselves. The anticipation was stressful. We had been contacting other parents who had been through the procedure, so our hope grew. Everytime he had a seizure it was a dagger in our hearts. It could have been just the stress but his seizures seem to be getting more intense. The surgery although unknown was our light at the end of the tunnel.
3/4/99 Bound for Detroit…
After considerable preparation, we were as ready as we could be for our stay in Detroit. We left from Providence, TF Green at 7:25 p.m. on Northwest flight 1441. Barbara Morse from Channel 10 News sent a cameraman (Mark) to get shots of us leaving. After some ignorant people tried to “get on TV”, Mark got the shots he needed and we got ourselves settled on the plane. Alex was wonderful for the whole 1 hour and 45 minute flight. We rented our car and we were off to the St. Regis Hotel for one night because we arrived too late for admittance into the Ronald McDonald House. The hotel was adequate and was right across the street from the GM exhibit. They have all makes and models from very old to new on display. My dad and Anthony will love it when they come to visit…
3/5/99 To CMH…
We checked out around 7:30am and made our way to the Hospital. After registration, we went to the PET center and filled out the necessary paperwork for the FMZ PET. This is a research test that uses a different radioactive tracer (flumazenil) than the his first PET. Its primary function is to help further pinpoint the spasms before surgery. We learned later that this test is only done here as part of a research grant from NIH to increase the effectiveness of epileptic surgery. Typically, you get three results from the FMZ PET:
- EEG - this is taken while the PET is in progress. Once again he will not be sedated until the PET so he will be restrained to apply the electrodes.
- PET Scan - the usual computer images of his brain. To be used in comparison with the set of scans taken back in December of 1998.
- Blood samples - to monitor the flumazenil through the test.
Dr. Chugani decided not to do the arterial line for drawing blood because it can be painful. The additional data point is not that essential.
9:00 a.m. Chad Grant (Imaging) explained the procedure (described above) and that total testing time would be about three hours. Alex would be sedated in the machine for 1 ½ hours. At this time the electrodes are being put on Alex. He is restrained but being very good, almost no crying… Cindy Tobia (Nurse) explains the sedation process (again… a routine we are all too familiar with).
9:45 am After two torturous attempts at starting an IV, they were finally successful, but I was growing very frustrated very quickly. I was conscious of my edginess, and suppressed the feelings to throw everyone aside and grab my boy and run. He cried every time they poked him… I paced the room while Emma comforted him, both of us knowing this is only the beginning… They administered the two drugs (see binder for names) and we waited for Alex to fall asleep. For the first time, he fought the sleep and she had to give him a second dose… While he was lying there fighting the effects of the sedation, he was giving us his little “eehh!” with a half smile on his face. We laughed with him. What courage for a 15 month old! Remember, at this point his head had 13 electrodes stuck to it, he was restrained to the table with 3 people buzzing all around him doing everything imaginable to him. Fortunately, he needed only a 1/3 the dosage for sedation he could have for his weight.
10:00 am I left to get our room settled at the RMH. It is first come, first serve basis and I did not want to chance it. I returned with about 15 minutes left in the test. After unhooking and cleaning him up the nurse tried to rouse him, he woke and everything was fine.
Noon We decided to have lunch in the hospital café. Alex slept through lunch. He had his milk and a little lunch, and the three of us took a much-needed nap. After shopping and exchanging the rental car, we ate and settled in for the evening. Tomorrow is another early morning of testing…
3/6/99 7:45am - Children’s Hospital
We awoke to a serious snowstorm and prepared for another morning of testing. We made our way to hospital in at least 8 inches of blowing snow. After a maddeningly slow registration process (the woman could not find the MRI registration binder, turns out it was on the shelf behind her but she would not get off her butt to look around) we went down to MRI. Same ordeal, fill out paperwork, answer questions, and get Alex ready for another sedation. After convincing the nurse to give the drugs through the IV to spare Alex the gagging taste of chloral hydrate, he went to sleep with a smaller amount than the day before.
Again the MRI/MRS test was 1 ½ hours long, and Alex did not wake up. The MRI is a loud test compared to the PET. All went smoothly, the pictures came out fine. So now we wait for Monday and our appointment with Dr. Canady, the Surgeon. I remain tense, constantly reminding myself to relax and pray for patience and strength.
3/7/99
Emma’s parents arrived by car from Indiana.
Sometime between noon and 5:30pm Detroit lived up to the reputation we had heard so much about. My father-in-law and I decided to get a pizza for dinner and headed over to the parking garage to get the car. As we got into the car, we noticed that something was not quite right, I flicked on the light to find the dashboard ripped out of the car! The thieves apparently could not get the radio out and abandoned their effort. As I went through the police procedures and rental card forms everyone was astonished that the airbags were not taken… Airbags are now more desirable than radios….?? I was fortunate to find this out when I did because I had to pick up Anthony and my parents at the airport later that evening. The pickup went smoothly and it felt great to see Anthony and have my parents in town.
3/8/99 1:15pm - Children’s Hospital
After a long wait we finally got in to see the surgeon Dr. Canady. We had some questions prepared but still felt like we missed something. Anyhow, we told her Alex’s story, one that we have absolutely memorized since we are coming up on the one-year anniversary of our nightmare, she remembered him because her name is Alexa… There will be a minimum of eight doctors in the OR.
After our meeting with Dr. Canady, we went down to the PET Lab to talk with Joy about scheduling. She was kind enough to give us a tour of what will be happening to us tomorrow. It really hit us today and we are as ready as we will ever be… My sense is that we really do not have any idea how difficult this will be for us. You can’t possibly be ready… can you? A deep breath with a long exhale…
So here is how it will work:
7:30am - Surgical registration on the 2nd Floor
9:00am - Alex goes into surgery to put the grid on his brain
1:00pm - Alex comes out of surgery and goes into the ICU overnight (ICU depends on the criticality of other patients). If he does not go to ICU he goes directly to video monitoring room on the fifth floor.
We will spend the rest of the next 5-8 days in the hospital with Alex.
3/9/99 - 7:30am - Surgical admittance
We arrived on the 2nd floor to register Alex. The surgical prep nurse came over and asked us a bunch of questions (all the same questions as before, a better system is needed for all this repeat info gathering). Then we went into the prep room for a physical and vitals and more of the same questions… The anesthesiologist explained the procedure and at 8:50am I dressed in hospital garb to take Alex to the OR. I had him on my shoulder as we exited Pre-OP. The corridor to the OR was not long but the stress of the moment was catching up with me and it felt like a maze. The OR was being prepared as we entered. It was very similar to what is depicted on TV. I stayed until the gas put him to sleep. He cried briefly because the gas had a foul smell to it. I know because my face was very close to his and we both inhaled the gas initially. He went to sleep and I kissed him goodbye. Immediately, two nurses and the anesthesiologist went to work on Alex as I left. St. Anthony and St. Teresa were with him, but I did not want to let him go, I know it was the best thing I could do for him, but it was extremely difficult. It took all my strength to leave that OR…
We waited for almost three hours. It felt like days. The whole thing didn’t seem real, it is hard to explain the feeling but it was almost like I was in a semi-sedated state. The stress of the day was upon me and we were only half way through.
At 11:45am Dr. Chugani popped into the waiting area to explain what happened. He said Alex is fine and that they put a grid of 64 electrodes in the parietal area and a second grid of 20 electrodes in the frontal lobe that he suspects could be a contributing factor to the focal point. Then he mentioned that Dr. Canady noticed that the blood vessels were not organized in a normal pattern on the left side. He unfortunately didn’t provide us with a sufficient answer as to whether this was a good or a bad thing. First time he has left us hanging…
Shortly after Dr. Chugani left, my mom showed up with Anthony and he played and performed for everyone in the waiting area. He was such a calming influence for me, he did not realize that he was good medicine for me.
1:00pm Dr. Canady arrived to give us the update and she was very positive. We asked about her comment and she said that was a good thing because that could be the source of his problem. It would not affect the remainder of the procedure.
The parents and Anthony went to lunch and Emma and I waited for Alex to be moved to ICU. At 1:15pm we were on our way to PICU and could finally see Alex again. I never missed him as much as I did in those four hours that we were separated.
Emma and I took a deep breath before going into the ICU, because we did not know what he would look like… he was not as bad as we thought and Emma and I held together very well. The strength we have been praying for was with us… I questioned again, what were we doing to our little boy? But I keep telling myself we are halfway to healthy…
Our parents cycled in and out and Emma told me later that each of them cried when they saw him. They left with Anthony to begin dinner and we stayed with Alex until 7:00pm when we were kicked out for an hour, one of four hours a day you can’t be in the ICU. We used that hour to eat. My mom had dinner waiting for us. We spent a few minutes with Anthony and his new friend Akeem and then went back to the hospital to be with Alex.
The first ICU nurse Maureen was helpful but a little stressed. The evening nurse Andrea is wonderful and we feel comfortable that Alex will be well taken care of through the night. We stayed with him until 11:00pm … kicked out again… maybe we will try to get some sleep in the waiting room.
3/10/99 - 7:10am Andrea was gone by the time we got back to the PICU. We really wanted to let her know how much we appreciated the kindness and tenderness she showed Alex through the night. We left a note in her mailbox…
10:30am we moved to the video monitoring room where we would begin our 24 hour watch of Alex recording every seizure not only on the monitoring equipment but also on a pad with additional comments that may not be clear on the video. Emma and I took turns each getting 3 hours of sleep by 6am. Then Emma grabbed a couple more before my dad brought over a very timely omelet that my mom made for us. By this time, we had two eight-hour tapes and four pages of data recording Alex’s night. We gave him 3 doses of morphine through the night to limit the pain.
His face was now very swollen, while not as bad as when he was at the height of his ACTH treatment it was enough to shake us. His little arms were restrained so he would not accidentally knock out any of the 84 wires that are attached to 84 electrodes on a grid on his brain. The grid (we intend to take this home with us, for reasons that we are not quite sure of right now) looks like a sleeve of watch batteries only much smaller and thinner. Actually, thinking about the technology is pretty amazing. Incredible, the number of tests done to pinpoint the problem area, a thoroughness that is very reassuring.
Anthony decided after talking with Mami that he was ready to come and see Alex. I held him as I explained that we were fixing Alex’s boo-boo. The head wrap was not foreign to Anthony because of the home video monitoring we had done for Boston. Most of the tubes were out of Alex by this time and we covered the remaining ones so that it looked like he was just sleeping… Anthony had a lot of questions (not uncommon for a 3-year-old!) and did great. He needed to see Alex because just before I left the Ronald McDonald House that morning he said “ Papi, give Alex a kiss for me” I promised and then left for the hospital. My eyes were tearing thinking of what he said and how as much as we thought we were sheltering him from this, he knew… hearing and seeing are not the only ways to understand what is going on, he must be tuned into the emotions of this week. I thought it would be better that we speak to him about it and let him visit his brother. It may help him understand better the stress I am sure he is feeling. This was a lesson for me, that good or bad I must make sure the boys understand what is happening…
Tonya Hummitch, whose son had the surgery last October, sent her friend Sheila Biewert and her son Trevor by to visit with us. Trevor will be having this surgery next month…
Through the course of the day we met the other members of Dr. Chugani’s team, Dr. Shah, Dr. Musiak, and Joy dropped in again. Every member of his team has been super, they have patiently explained everything to us, answered all our questions, and generally been available if we need them. There is a confidence with this team that is reassuring. Add to that Dr. Canady, and I know we are in the right place for Alex to have this surgery. After that, our family trailed in and out all day, and we ate lunch and dinner in Room 588 our new home for the next two days.
We expected a long night and we were right. Alex did his job of having seizures that were caught on tape. He has not had his meds in a day (purposefully) and he has not done as bad as Emma and I would have expected. We never let him miss a dose…
3/11/99
The sun came up and I put down Tom Brokaw’s book, “The Greatest Generation”, a wonderful book full of stories of courage, valor, determination, and a sense of responsibility in the face of absolute horror. I realized the ironic coincidence for I often think of Alex’s surgery and infantile spasms as an enemy we are doing battle with… oddly, I drew confidence from the stories in the book. We will prevail…
Dr. Shah dropped in to pickup the tapes and data from the previous day. He’s going to analyze the data and get back to us if he feels he has sufficient data.
Alex has been resting quietly all morning giving us time to wash off the last day. Emma’s parents stayed with us in the room, while mine cared for Anthony… This would have been significantly more difficult without the unselfish help of our family. A debt Emma and I will never be able to repay, but we will try!
Plenty of seizures on tape (80) so the remainder of the day was an x-ray, and a Sensory evoking test to pin point his sensory cortex which helps identify his motor cortex (usually the motor cortex is just in front of the sensory cortex). In older children they are able to do this in surgery, but not for children as young as Alex. This is important because removing any of the motor cortex will affect the mobility of his right side. That was the last of the tests before the big surgery. We are preparing ourselves, we are know we are not ready…
Dr. Chugani stopped in to discuss the plan for surgery after meeting with Dr. Canady and Dr. Shah. Holding a color image of the left side of Alex’s brain, he told us they would take out 70% of that side, sparing only his motor cortex. While the motor cortex is not a primary seizure center, there is some epileptic activity that could be a secondary dependent area (we pray). This means that the area depends on another area and will quiet down when the primary areas are gone. The air was sucked out of us, Emma began crying. We did not expect that much to be removed… I was horrified, stunned, sick, hurt, scared, and uncertain all at the same time. After more discussion with Dr. Chugani, we understood that larger resections are necessary and typically have better results. He said this not as bad as it sounds, the brain will grow into that space over the years. He also said that Alex would lose his peripheral vision on his right side, and could develop some weakness as well. Alex will compensate and after a year or so he won’t even know his right peripheral vision is gone.
Thursday, March 11, 1999 was my lowest point, I kept telling myself that this is the best thing we can do for Alex. But the thoughts of removing that much of his brain seem impossible and I was scared of the unknown, his development, his future... Ironically, after all our discussion, Dr. Chugani asked us if we wanted to go through with it as planned. I said speaking for both of us, “ we have complete confidence in you and your team, we want to give Alex his best chance so do what needs to be done”. Emma and I hugged drawing strength from each other, and consoling each other. We have only gotten this far by leaning on one another. Sleep came hard, the morning early, and we had to get ready to take Alex to pre-op.
3/12/99
We pack the few things we brought under his crib, these huge metal cribs, and we rolled out of room 588 crib, IV, mom, and dad. We are headed back to floor 2. The person transporting us down forgot her badge so we had to find someone who could give us access to the floor, we were a little late arriving. Emma and I were a mess, we prayed with the chaplain in pre-op for God to be with him and put his healing hands on Alex. Alex was wheeled away and the nurse closed the door for us. Emma and I held each other and cried. A few minutes later we composed ourselves, gathered our stuff and headed to the waiting room for word on the surgery.
We found a private waiting room for the six-hour surgery and family started filtering in, we read, did crosswords, anything to occupy us, Anthony came in and helped distract us. Around 11:30am Dr. Chugani came in to talk to us. He said they had taken out all the bad section in the back, and were working on the front and that the motor cortex showed some activity but not to bad. We next had to wait for Dr. Shah, who arrived an hour or so after Dr. Chugani, and said that the front was finished and the motor cortex was “angry” and showed more activity. He was not sure what this meant. He left and I was feeling low. It seemed that the gamble to leave the motor cortex in may not payoff. Emma was not with me, she was with Anthony in the emergency room because he was spiking fevers. It seems he had a virus. Great, both my boys in the hospital the same day! When will this nightmare end? Finally, around 3:45pm Dr. Canady came in to say the operation went smoothly, no major concerns, and that only time will tell us for sure, but she feel good about it.
With heavy hearts, we headed to the PICU again, and prepared to see Alex. The PICU waiting room was all too familiar and we would spend another night on its couches. We took turns seeing Alex as only two people are allowed in at a time. Walking through PICU is very saddening. The children in there are in tough shape and my heart hurt for each of them and their families. It was additional stress I did not need but unavoidable. Alex really did not look that much worse, the first surgery is by far the worst. I stayed with Alex until 1:30am and Emma stayed until 2:30am. We found out the next morning that at 3:00am he had seizures that lasted 5-7 minutes and was given Ativan to calm them. We instructed the nurse to wake us if there was anything, in our exhaustion neither of us remember being roused. We felt disappointed, we have been trying to stay even keeled through this so as to not roller coaster our emotions, but we were not very successful. Uncle Chris, Tetka and mami then wrapped Pooh, Curious George, Snuzzles, and Doby with head bandages to match Alex. It was a cute sight, the five of them with heads wrapped in that crib.
3/13/99 - Saturday
By late afternoon, we were moved to 625 (the same room as Matthew Hummitch, as we would find out later) to continue our recovery process. Alex woke and had some juice, moved his right side, even his fingers, (much to the doctors liking) and generally slept most of the day. He was spiking a fever but everything else looked good. At this point his medications were Depakote, Topamax, Zantac (Ranitidine), Dexamethasome (for swelling in the brain tissue), and regular doses of Tylenol and Motrin for the fever. Then they would supplement the IV (Potassium Chloride) with a Magnesium and Calcium drip. This poor kid… Emma slept with him.
3/14/99 - Sunday
Grandparents continue to entertain Anthony, the aquarium, lunch, walks, etc. Alex’s recovery continued to go fairly smooth except for the fevers. This was a rather ordinary day for us now, mercifully uneventful except for the removal of his bandages. For some reason I was alone with him when this happened and the severity of the procedure shocked me. The scar was big. It ran from his hair line on his forehead all the way back and curving in the shape of a question mark to in front of his ear. He will have quite the battle scar to live with. The scar was not easy for anyone to see. I think its impact and the fact that only the hair on his left side was removed made him appear deformed. My Dad, Emma’s parents and Chris & Marjana all left today. The family and friend support this past week has been incredible, the calls, cards, and, of course, the family with us all helped give Emma and me the strength to get through. We have learned what the word persevere really means, and how wonderful the bonds of family can be…
3/15/99 - Monday
Recovery continued to go well. The doctors come by to visit everyday and remain optimistic. We moved to room 637 a private room that should ease our stay. Dr. Chugani told us more about Alex’s missing peripheral vision and how there is something called “blind sight” where the person “sees” something and will react to it, but when questioned about what they saw they will deny seeing anything at all. The brain is amazing. This only happens in small children. They have so much development left that the brain compensates… Alex will be OK. This day Alex drank from his sippy cup and sat up in our laps. All was well until about 6:25PM when we saw a cluster of 14 head drops, mild, but drops none the less. Again, the wave of disappointment covered us, and we felt progress stop. No more the rest of that day, but our faith and hope was to be tested again…
3/16/99 - Tuesday
At 5:05am he had 3 seizures, and although the doctors have been telling us that seizures are very common and not to read too much into them, we are bumming. All Alex ate today was a small can of fruit cocktail and later that day he threw it up. He was really not himself all day. His stomach was bothering him all day. Around 11:15pm as I was trying to give Emma some sleep time and Alex threw up again, quite a bit. So much so that I became nauseous and had to turn away for air to control myself. That episode then turned into a twitching of eyebrows and lips that lasted 1 ½ hours, and only calmed after 3 doses of Ativan. Afterwards, they checked his Depakote level and it was very low, probably contributing to his problems. They give him a boost. He was then sleepy from the meds and we both slept in the room with him. This was probably our lowest point since last Thursday.
3/17/99 - Wednesday
Alex spent most of the day sleepy from the Ativan. We noticed his right thumb was twitching. It lasted 5 minutes which could be associated to the surgery. All the doctors continue to feel his progress is good. Dr. Canady decided to have an EEG, stomach x-ray, and MRI done to see what is going on… The x-ray was first, then the EEG. The MRI is delayed possibly until Friday. Later that day Dr. Chugani ran in to tell us that the EEG looked good and there was no reason for concern. A huge sigh of relief! Later Dr. Shah dropped in to tell us he was still very optimistic and would look at the EEG and drop by tomorrow. We were feeling much better. I dropped my mom and Anthony off at the airport. He is such the little jet setter. I watched as he followed my mom into the airport wheeling his suitcase with Roo (his teddy bear) attached to the handle. I welled up from just emotion overload, and that I will miss them. Anthony had reached his limit, and needed to be home. Alex started looking better toward the day’s end and our optimism grows again.
3/18/99 - Thursday
We are 14 days into our odyssey and today we feel good. Alex ate a good breakfast, but has not yet pooped. He got a laxative and if by noon there was nothing, he would get another which he did and later we were 4 poops in and counting. Dr. Chugani and Dr. Shah dropped by and all signs were good! He is very much himself! Today we decided that we must move our return date to next Wednesday. Dr. Chugani agreed. Today was his first seizure-free day!
Alex ate a good lunch and dinner and things were going well overall. As I left him and Em at 10:15pm, we were very encouraged, it was our first seizure-free day in months…
3/19/99 - Friday
Alex woke and the MRI was cancelled. Dr. Canady called us to her office, we held our breath until she said, “Everything is fine and I think he is ready to go home!” We agreed that he was doing much better! She agreed with us about staying in town through wed. as a precautionary measure. Surgically speaking, she had no concerns and we scheduled Mon. at 9:30am for suture removal. We thanked her for the wonderful job she did on Alex. We waited for the discharge orders to then go to the RMH until 3/24/99… Things were going great, then Alex woke from a nap with a fever. The doctor checked his ears and sure enough there was an infection, probably from the vomiting. We got all our meds filled and left. Thank God…!
3/20/99 - 3/22/99
Alex had a great weekend, his first seizure-free weekend in months. We are so very grateful! He is beginning to act more like himself and we watch with much trepidation every move he makes, for we know all too well the demon, and pray we never see him again. We know now that we will always be looking over our shoulder…
We go back to the hospital for an MRI for documentation purposes. We were still in Detroit as a precautionary measure, but while we were there, we decided to have his sutures removed. We also wanted to take pictures of Dr. Chugani, Dr. Shah and Dr.Canady with Alex.
Monday worked out well. Alex had his MRI and while he was sleepy we had the sutures and blood drawn to spare him more poking and prodding. We were not sure if the doctors would like to have their photo taken, but we found out quite to the contrary… each was thrilled to have their picture taken with him and insisted on holding him. It is too bad he was groggy from the chloryl hydrate… but the pictures will be great anyway! To round out the trip we also took pictures of the Ronald McDonald House and the hospital. There will be follow-up visits and both Dr. Chugani and Dr. Shah want to know how he is developing. We have noticed that he is much more verbal since the surgery… very encouraging!
3/24/99 - Homeward bound…
We flew out of Detroit at 1:40pm and were so looking forward to going home and resuming life, to renew ourselves with the joy of growing up… knowing full well the blessing that God has given us.
Upon Reflection:
- Miracles do happen!
- First and foremost that your children truly are a blessing and gift from God. Love is the most important thing you can give to your child above everything. Spend every minute you can with your child for when the minute is gone, it’s lost…forever.
- Never, never, never quit!
- That we were too focused on ourselves, we never really extended ourselves either through giving our time, money or support to anyone outside our family and friends. This we intend to correct upon our return. We intend to return the generosity we received twofold. We will involve our children so they can learn from not only our example, but more importantly by doing.
- Family truly is wonderful, and the support from ours has been amazing. We hope that the family can stay as close as it has been through this crisis. We hope to instill this value of family in our boys.
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