Kaeric Matthew Swimeley
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This is my son Kaeric Matthew, he is now 3 years old. Kaeric was born on June 23rd, 2000, at 23/24 weeks gestation due to PROM, partial abruption, and IC.
Immediately after Kaeric’s birth he was resuscitated and brought to the NICU. He had many life threatening episodes and we were told he may not live. At 13 days old he was transferred to Children’s Hospital and rushed to emergency surgery because of NEC and a bowel perforation that resulted in an ileostomy. It was his only chance for survival. After this he remained very ill for a long time, we almost lost him a number of times. He would spend hours and sometimes days where his sats would not rise above 70-75% and would have CO2’s in the 90’s and 100’s. His course was complicated with PIE, RDS (eventually turning into BPD), NEC, bowel perforation, meningitis, ROP, PDA, numerous infections, hypotension and so on. He spent many weeks on an oscillator and required several blood transfusions. He underwent a total of 12 surgeries (from birth to present) not including brochs, c-lines and other minor procedures.
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Kaeric One Week Old
At 3.5 months old he was going downhill again. We were called to a care conference and were told (again) that the odds were against him and even if he survived now, his overall chances were only 50/50 due to his extremely severe case of BPD. The doctors told us the best thing for them to do for him now was give him a trach because he was not ready to get off the ventilator anytime soon. So at almost 4 months he received his trach. It was bittersweet because although we were sad that he wasn’t able to come off the vent, we could finally see his face for the first time without tape and tubes etc. It was wonderful!
The trach surgery really helped Kaeric to lead a more "normal" baby life. We were allowed to attempt to PO feed him now that he had his trach and he was making slow progress with that until he got yet another infection. They kept him sedated while he was so sick because his agitation would make it harder for him to breath and his sats would drop. When he came around he had no interest in the bottle and ultimately ended up getting a G-tube at 9 months old, because of feeding issues and oral aversion.
Over the next few months Kaeric would have good days and bad days. At 5 months old he tested positive for RSV and was put into isolation. He ended up on steroids again and the doctors had a very difficult time weaning him off of them. Every attempt failed, he needed them to progress. His "take down", PE tubes, gtube/fundoplication surgery had to be postponed twice because of infections etc.
Somewhere around January (6 months old) he started to have these "death spells" where he would get very worked up for whatever reason and start to turn blue, he even coded at times. These were very hard to deal with. Everyone avoided upsetting him in anyway because of these episodes. In February the pulmonary doctors did a bronch and discovered severe broncotracheomalcia and even with normal breathing his airways were collapsing and with crying it was even worse. So his peep was raised to 12. After this he became a considerably happier baby.
Over the next 2 months Kaeric steadily improved and on March 29th he is finally able to have his surgery. It took a while for him to recover from the surgery because of an infection. However, by May 1st he was ready to move from the NICU to the Transitional Unit. At last, at nearly 11 months old Kaeric left the
NICU, with many tears we start a new chapter in the TCC Unit (a trach/vent unit).
Right away in the TCC the pulmonary doctors attempt to put him on a home ventilator (LP20). Kaeric
failed this attempt to transition over to the home vent. Eventually he is tried on an LTV 1000 and although he did better he still could not maintain sats and normal breathing. So they keep him on the Servo. Kaeric starts to have "blue spells" again and codes on several occasions. All of the doctors are puzzled on why he is doing this again. It seems like everything makes him have a spell.
One day before his 1st birthday (at one year old, he weighs in at a whopping 11 lbs), he had a temp of 104 degrees and had to go to the PICU. It ends up being pneumonia it seems like this goes on for months. He has a spell or infection and ends up in the PICU and he is making no progress on the LP 20. We are sad and frustrated, it seems like he’ll never come home or get better.
In October his docs decide to try the LTV again, he does fairly well for a week but then has a particularly bad spell. They decide to do a bronch etc. to see what is going on. They discover that Kaeric has a huge piece of granuloma right above his trach which they think is causing all the spells. They decided that he’ll require a trach revision surgery. So on Oct 18th (exactly one year after his original trach surgery) he had his surgery. His recovery went fairly well and was able to return to the TCC after one week. This surgery seemed to make a world of difference. He wasn’t having nearly as many spells and seemed happier overall.
In November they are finally able to get him on the LTV 1000 full-time and we are allowed a day pass on Christmas to take him home! Over all Kaeric is making many improvements. Shortly after his transition to the LTV, he is tested positive for MRSA and moved to isolation. However, they begin to be able to wean steroids some and by the end of February he is off completely except for stress doses.
Although Kaeric health seems to be improving, his development is still very behind and his pulmonoligist seemed worried so he ordered a MRI and a consult with a neurologist, his MRI reveals that Kaeric’s cerebellum, and brainstem are considerably small, and that he has white matter loss, and overall volume loss. It's not clear weather this is caused from his premature birth and complicated course or a possible disorder. He had full metabolic workup and the only thing abnormal is his thyroid (hypo). He also received a lumbar puncture and those tests come back normal as well. The neurologist was very impressed that Kaeric was doing what he was doing (rolling, smiling, reaching) because according to his MRI he shouldn’t be.
At this point he is diagnosed with Cerebral Palsy (hypotonic). (It is still unclear whether Kaeric's abnormal cerebellum and brainstem is a genetic problem or from prematurity, he is undergoing some genetic testing right now).
In the late spring, Kaeric is close to discharge. In June Kaeric is transferred to Wilford Hall Medical Center on LAFB. Matt (Kaeric’s dad) had just rejoined the Airforce and received orders there, so our family was relocating). Although Kaeric begins to have blue spells again, after spending only a month in WHMC, we are finally able to bring Kaeric home.
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On July 8th, after two long years in the hospital Kaeric comes home to us. He came home with a vent/trach/o2, gtube/pump, many medications and monitors. We are very happy he’s home at last, but unfortunately this doesn’t last long, only 2 days later Kaeric is back in the hospital because of a severe spell. Again, no one knows why he’s doing this but it seems to be related to his reflux and/or bowel movements. He also seems to be having seizures with these spells, and after some testing the neurologist put him on seizures medication.
Over the next few months he goes in and out of the hospital due to these spells and his medication is increased two times. On a couple occasions we need to perform chest compressions on him because he had no heart rate. These days were very difficult, seeing your child turn blue and have no heartbeat is a nightmare. The doctors do a bronch and other tests but no one really says why this is happening, it is most likely due to his serve BPD etc.
After a while Kaeric starts to really improve. His blue spells are less and with a lot of work in OT, PT, ST, etc., he’s making many developmental strides. We are SO proud of him. He even started scooting around.
During a bronch, and granuloma removal in Feb 2003, he has an eye exam. His ophthalmologist discovers he is severely nearsighted (he already had glasses) and he is legally blind, however he does see some and does very well with the sight he does have. In March 03 he starts to learn to sign and now can sign about 10-15 words.
Right before his 3rd birthday, he began sitting up all on his own and he is low crawling everywhere. He now weighs 28 lbs and is 32 inches long. The pulmonary doctors are beginning to do some very gradual weaning of his ventilator. He is starting school this August and we are very excited. In addition to his other therapies he’ll be receiving VI as well.
We still have good days and bad days, he still has spells on occasion. There are times when he has infections and has to go the hospital or his BPD and lungs seems worse and needs a lot of treatments etc. This is just the way life is with Kaeric, we are just so happy and blessed he is here with us and home with us at last. He is a beautiful miracle, and we are so very proud of him. He has come so far and continues to make progress all the time. He now has a little brother to play with and always signs "love" when he sees him. Kaeric LOVES reading and singing and has his own signs for his favorite songs. He is also a huge fan of Barney.
We pray one day Kaeric will be off the ventilator, and trach free. However, if that never happens we are just happy knowing HE is happy. Kaeric is a sunny little boy who loves life and we thank God for him everyday.
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Kaeric and his family December 2003
