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About Matthew - Sick and in the Hospital

"...You cannot make steel until you have made the iron white-hot in fire. It is not meant for harm. Troubles and disease have a lesson for us.Our painful experiences are not meant to destroy us, but to burn out our dross, to hurry us back Home. No one is more anxious for our release than God..."
-Paramahansa Yogananda

My Baby

I wrote about Matthew being in the hospital and posted it to these pages to keep my friends and family updated on his condition. Matthew is fine now. We aren't the first parents to go through this and certainly not the last. Perhaps if some one reads this they will be better prepared if one day they find themselves in the same situation. I pray it not be so, but these are things beyond our control.
Kindest regards,
Mama (Lovey)

Wednesday January 21, 1998

I have not been able to do much work on Matthew's pages. As I write this, he is very ill and in the Pediatric Intensive Care unit in the hospital. He started with a cold about 10 days ago and we took him to his pediatrician. Dr Fitch (Who Matthew refers to as Dr. "Fish" in sign language) prescribed antibiotics as usual. Only this time Matthew did not get better. By Sunday (Jan 18th) he was still running a fever, had a hacking violent cough that made him vomit and was short of breath. He was very pale and we were very concerned.

Briefly, I'll give you some important info on Matthew's health.

Matthew was born with a congenital heart defect -AV canal. Very common for Downs. There was no wall between the upper chambers, a small hole between the lower chambers and only one valve. Even though this was a very serious defect he seemed to sort himself out pretty well at birth. His Cardiologist, Dr. Kenneth Bloom, (Who Matthew refers to as Dr "Balloon" in sign language) told us Matthew would need surgery to correct the defect within his first year but we would wait as long as possible so Matthew could grow and get stronger.
At 7 months Matthew began to show signs of congestive heart failure. Surgery was scheduled for the 16 March 1987. It was amazing! Here was this child with skin the color of chalk who could not yet sit up on his own. He came out of surgery with his little toes bright pink! He was out of ICU in two days and home by the 5th day after surgery!
As you can see from his photos on the home page Matthew does pretty darn good. His heart is enlarged and sounds like a funky broken clock because of a mitral valve regurgitation - but he has never had any problems or restrictions on his activities. His last Cardio-check up, Dr. Bloom put Matthew on a vasodilator (Vasotec) because his blood pressure was too high 132/90. The med worked and his BP averages around 105/90.

Now - back to what happened Monday...

On the 19th we took Matthew back to his pediatrician and Dr. Fitch sent us directly to the hospital. He appeared to be in heart failure. Dr Bloom arrived shortly and did an EKG and Echo gram and thankfully, Matthew's heart was fine.
He definitely had pneumonia though and since the heart function and lungs are so closely related, he was admitted into the hospital with both Pneumonia and Congestive Heart Failure. The danger was in his sat rate - the saturation of Oxygen in his blood. It was at 70 +/- 5. Normally it should be at 90. This lack of oxygen in his blood could cause serious and irreversible damage to his lungs and other vital organs.
Matthew was put in ICU and given an IV. We tried to get him to wear an Oxygen mask but he refused. (Sometimes he is too stubborn for his own good! ) So Matthew was sedated and given a paralytic drug and a respirator tube was put in. He also has a tube in one nostril for fluids from the stomach, a feeding tube in the other nostril, IV' s in both arms and one foot, a foley for his bladder and an assortment of other wires and tubes.
BUT his fever is down. His sat rate is up to normal and he is stable. He will have to remain sedated as long as he has the respirator, but hopefully that will come off by the end of this week. Right now he looks so helpless and I feel so helpless. But he is in good hands and with God at his side he will be just fine. PCIU
Please say a little prayer for Matthew and I will update this page with Matthew's status.
(When he wakes up he is going to be really mad! )
Thank you for your time.
Kindest regards,

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Friday January 23, 1998

Matthew is improving. He is being given less sedation and has been waking briefly and trying to move. Yesterday he looked at me and recognized me. He can hear and is aware of people around him and recognizes voices. He will stir or make faces and one time he clutched my fingers and held on very tight. His fluids were reduced and they started feeding him though a tube. His foley was removed and he is urinating on his own (sometimes the meds he is on will cause the body to retain fluids and not allow them to pass) He is wearing a diaper. His oxygen is being reduced and he is breathing more room air and his sat rate has been steady at around 90-99.
If they can get him to where he is breathing room air on his own and his sat rate remains in the 90's, he will be removed from the respirator. They are slowly weaning him off oxygen and increasing the amount of room air he is breathing. His color is good, but he is still running a low grade fever. They have identified the organism that caused his illness. I cannot remember the exact term but it is called "Walking Pneumonia". If not for all the tubes and wires - he looks as it he is asleep. We are turning him every hour so he does not get too sore and to reduce swelling. Things look much better than they did Tuesday. It will still be several days before he is off the respirator though.
Many of Matthew's friends and family have been by to visit and they have been very kind and helpful to me and my husband, sitting with us, bringing us food, helping us with our older son Joseph, and being supportive. I am truly thankful for all the kindness of so many people and their prayers for Matthew.
Kindest regards,
ps: Matthew's "bad dog" Tony misses him very much!

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Sunday,January 25, 1998

Friday Matthew was still the same - not much change, but not worse. He had a few lucid moments and his paralytic was reduced significantly. He was still sedated,but this too was reduced.
He has had many visitors:
Aunt Jay & Uncle Tom, Grandma & Grandpa Earl, Father Jack from Blessed Sacrament, Uncle Lawrence, Aunt Marsha, Cousin Pat, Cousin Tim,
Joseph T. Kelly Esq.and his brother Joseph.
Grandma ( We call her "ca-cu {ka'ku} It means Grandmother in Comanche) and Grandpa came to the hospital nearly every day inspite of how difficult it is to get around for them.
Dr Marconi (Principle at his school) and his teacher Kathie Hoskins brought a huge card from his class with photographs and all his classmates had signed the card. His Bus driver Mr. Garza and the bus assistant Ms. Rachel called and sent a card from Matthew's girlfriend from the bus. (?!)
Jim H. who was Matthew's bus driver for 4 years before he started riding Mr. Garza's Bus, sent his daughter to see Matthew and check on him (she is a nurse at the hospital). And Dixie, who was Jim's assistant on the bus called.Our friends in Wisconsin called every day to check on his condition too. His Aunt Lynne who is in the Air Force was on standby to come home at any moment.
Ginger & Rob (Matthew's Nurse) at the hospital.My good friend Ginger came Friday afternoon. Many of you may know her by her AOL screen name "BrokenBack" Gin is a paraplegic, but she was determined to visit Matthew. She brought a huge balloon. She is a very beautiful lady. I am in awe of her strength in spite of her health. She was so cool wheeling around the Hospital in her motorized wheel chair - she turned a lot of heads and got a lot of smiles with her pretty face and big bright beautiful smile. By coincidence Matthew's RN, Rob, is the son of Gin's nurse at the Spinal Cord Clinic Ginger goes to.
I have had so many emails I can't possibly begin to answer them and many people have signed Matthew's Guest book in his web site. I am eternally grateful to these people and everyone who has been praying and sending positive thoughts. It helps me a lot to know I am not alone. Seeing people like Ginger and my sons, I have no idea why I could ever feel sorry for my self. They are an inspiration to me.
Saturday Matthew's vital signs were very good. The amount of oxygen was reduced to almost room air and he did well all day. For the first time he seemed to be sleeping peacefully, rather than drugged. His heart rate went down also, it had been @ 100 bpm, it came down into a more normal range between 70-80 bpm - unless he was agitated when given respiratory therapy or being moved.
He is given respiratory therapy every 4 hours. They use a motorized purcussor (a vibrator thing-y placed on his chest and back) to break up the mucus in his lungs and then suction him thorough his breathing tube. It is exactly as awful as it sounds.
At 4:00 Dr.Zuckerman, head of Pediatric ICU at Methodist, (I can't wait to hear what Matthew calls him!) decided to start to get ready to pull his breathing tube, His sedative was stopped. He was put in a restraining vest so he would not try to sit up when he came out of sedation.
A note here - he had been restrained since he was sedated and put on the respirator - padded bands with straps were put on each wrist and ankle and tied to the bed railing so he could not move - he would manage to knock the electrodes on his heart monitor off his chest when he was agitated. He is very strong. It takes 4 or 5 of us to restrain him. He also had his hands taped to padded boards so he could not yank out this IV lines, he managed to wiggle a few fingers free during one respiratory therapy treatment and was working on loosening the other hand - so determined and stubborn!
He had is last dose of Zithromax ( a 5 day course very powerful antibiotic). He is still on Amoxicillin.
He was in and out of it for several hours. At one point he was lucid and looked for me and when he saw me he tried to speak and I cooed to him, he then puckered his lips wanting a kiss! (Of course I kissed him)
Papa - "Big Matt"His Papa joined us around 7:00 pm. His stomach tubes were removed from his nose and a nasal oxygen tube was taped to his face. Finally around 8:30 pm his breathing tube was pulled. The first thing he did when that tube came out was try to speak - he said "Mama". His throat will be very sore for a few days. He settled down fairly soon and slumbered peacefully for the rest of the night.
His Uncle Jerry came down from Austin and stayed the night with Matthew so Mama and Papa could go home and have a good nights sleep. We called the hospital early this morning and Matthew was still sleepy and in and out of it , but he did tell Uncle Jerry to move so he could see the cartoons on Television.
Hopefully, we'll be out of PICU Monday morning and in the children's ward. Perhaps home by the middle of next week.
I am, with the kindest of personal regards,

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Tuesday, January 27, 1998

We're not out of the woods yet. Matthew has been sleeping very heavily since they removed the respirator. Has not eaten and has only taken a small amount of fluid by mouth. He is getting fluids intravenously. His body needs to recover from this illness as well as the trauma of being on a respirator and being sedated and paralyzed or so long (6 days).
He did not look well Monday, was pale and looked very tired. He tried to sit up a few times, but was too weak to stay up on his own. He is very fatigued. He is still getting oxygen from a nasal tube and getting respiratory therapy every four hours. He sat rate keeps dipping below 90 and setting off the alarm, so his oxygen was increased to 1.5 liters.
In the HospitalAfter the Therapy - or any activity - such as bathing, changing bedding or his diaper, he is fatigued and sleeps heavily for hours afterwards. He does wake for a for a couple of hours but does not move much. I untied his restraints Monday so he could move into a more comfortable position, but had to tie his hands again several times because he was pulling his heart monitor wires off.
He tries to talk, but his throat is very sore from the breathing tube. I have to rely on "yes" and "no" answers to find out what he wants because he will nod or shake his head in response. His voice sounds very little and almost too soft to hear. He did get angry at the nurses a few times today and and told them to "Stop it!" and "Don't touch it!" - more like his normal self, but he is still far from being up to par. Several times he cried and wanted to be held and I did the best I could. I know this is very painful and frightening for him. But he has been a real trooper. I did get one smile out of him today.
Dr Bloom says he is still a very sick little boy and he would need a couple more days in ICU. As long as he relies on oxygen to keep his sat rate within a normal range, he will have to stay in PICU. My husband and I are very weary, yet, our faith remains strong.
Kindest regards,

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February 1, 1998 - Matthew is Home!

On Tuesday, January 27, Matthew was still in PICU. He was breathing on his own but his sat rate kept dropping below 90. He slept most of the day. He did try to eat breakfast, but he promptly vomited it up during this respiratory therapy. He slept most of the day, but did have more lucid moments and often woke briefly sobbing. His gross and fine motor skills were not good, he was very weak and had difficulty manipulating objects like getting a spoonful of food into his mouth. This was to be expected after being sedated and given a paralytic for 6 days.
The longer one is under close scrutiny the more things are found to be at fault. Matthew's thyroid levels indicated hyperthyroid. I dismissed it for now, telling his Doctor the stress on his little body at this time would cause chaos in his entire metabolism and not afford any kind of viable information based on "normal" ranges for renal and other functions. I felt it would be best to review these things after he was out of the hospital and well. An endocrinologist was consulted and my opinion was confirmed. His blood pressure was higher than usual though, and his vasodilator medication was doubled. I hope this is a temporary situation being a result of his illness. The nurses noticed one eye was more dilated than the other - I explained this was a consequence of his open heart surgery 11 years earlier. You may notice in his photos he squints one eye when he smiles.;-)
On Wednesday we finally moved out of ICU and to the children's ward. We were definitely more comfortable there. The room had it's own bathroom, shower, television with VCR, rocking chair and a large chair that converted to a bed for the parents (My husband had been staying nights with Matthew and was not always lucky to get a bed for the night , often having to sleep in a chair in the ICU visitor's waiting room.) There a was playroom with toys and an Aquarium on the ward. They also had wagons the children could ride in and I pulled Matthew around the ward several times.
Our dear friend Beka was also in the hospital on the same floor with a lung infection. She is 19 years old, has Cystic Fibrosis and is awaiting a lung transplant. We did not visit her though - it would not be wise to expose her to any more lung infections.
( Beka never left the hospital. She was transfered to a children's Hospital in St. Louis in June 1998 and recieved her long awaited Lung transplant. The surgery went well, but she did not survive. May God Bless her and may she finally rest in peace.)
Thursday Matthew was very chipper. He ate breakfast and showered and dressed. He needed help walking and eating and dressing and toileting, but seemed to be much more comfortable. I was out of the room for a few minutes and Matthew kept pushing the nurses call button to order juice - He loved the attention and room service. ;)
Dr. Bloom came by and asked me what I thought about going home - I quickly replied YES! And we were out of there in an hour. We were very happy to leave the hospital and get home.
Matthew is still sick, but much better. He is eating well and seems to be feeling ok. He has trouble sleeping, his schedule being off and he is still a little weak. He is pretty bruised up, but these are fading fast, he lost about 5 lbs.. Considerable for him. His gross and fine Motor skills seem to be back to par, but his speech is almost unintelligible, yet it is improving each day. We were warned he may have nightmares and he did the first two nights home. He was frightened upon waking, not sure of where he was, but calmed quickly when reassured he was home with Mama and Papa and Joe.
Tony was ecstatic to have Matthew home! The dog was not accustomed to being alone at home for any length of time and I think he was traumatized, but he is back to his old "bad dog" self. Matthew will probably stay home this week and start going back to school next week part time to ease him back into his routine.
Papa and I are wiped out. But we are ok, never enough time to dwell too long on aches and pains but we are very happy to have our Baby back home. Joe is very happy to have his brother home too. While Matthew was in the hospital, Joe was pretty much on his own and was very lonely (except when Aunt Marsha took him). He could not do much for his brother or parents. But now that we are all here together again he can and does help a lot and spends more time with his brother than before.
I have never been through anything like this before. I have been in the hospital many times. But it isn't the same. The children had never been in a situation like this. The only times they had been in the hospital being when they were born and when Matthew had open heart 11 years ago. Even then, the open heart surgery was a controlled situation. The doctor and surgeon knew exactly what to do and what to expect. This illness was unpredictable and brought us a little too close for comfort to how frail we mere mortals are.
I have to say the most wonderful thing was the support and prayers and all the kind letters, calls and messages from family, friends and people all over the world. Knowing I was not alone was the one thing that got me through.
God bless every one of those who came here to read about Matthew and remembered him in their prayers and thoughts.
Kindest of personal regards,
Lovey & Family

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Rev.No.04.06.99 © L.Kelly 1998,1999

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